# Prayers and info please!



## DawnT (Feb 20, 2008)

I know I've been away for a while.  I have been subbing at the local high school, interesting to say the least!  That is not why I need the prayers. For the last 4 years my DH has been dealing with a kidney disease called IgA Nephropathy.  This is causing his kidneys to shut down.  Right now they are working at 20%, at 15% he has to go on dialysis.  When first told about this, we were told to cut back on protien as his kidneys were not processing it.  Now I find on the web that he should not have any protien or dairy.  Is there any good recipes here for him?  Of course I am eating whatever I make him but I will not give up my *CHOCOLATE*!!!

Please help and pray for Jim,
Dawn T


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## suziquzie (Feb 20, 2008)

I'm sorry I can't help much with the recipes but I am sorry to hear about your husband and I will certainly pray for him! Skipping protien and dairy has got to be close to impossible... not to mention taking a toll on a persons strength. I hope he can get better.


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## middie (Feb 20, 2008)

Dawn how awful. I wish I had info for you.
Sending you guys good vibes so your dh gets
better soon.


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## Barb L. (Feb 20, 2008)

Prayers and support have been sent, wishing the best for you both.


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## DawnT (Feb 20, 2008)

Thank you Barb, Middie and Suziquzie.  Dialysis will keep him going until a kidney can be found.  Unfortunately, from what I read the life expectancy for Jim is 8-10 years after transplant.  He is only 46.  I hope they don't find a kidney.  Is that awful?


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## GotGarlic (Feb 20, 2008)

Why do you hope they don't find a kidney? My aunt, who had type 1 diabetes for over 50 years, survived for about 15 years after a kidney transplant. An estimated life expectancy doesn't mean that's the end point for everyone. I'm not sure what you're reading, but a quick Google search turned this up: Successful kidney transplant can triple life expectancy. | Internal Medicine News | Find Articles at BNET.com 

I would suggest you ask your husband's doctor for a referral to a registered dietician who can help you develop an appropriate diet for your husband. In the meantime, this site seems to have some good info on diet and other topics: IgA Nephropathy Support Network - Shedding Light on IgA Nephropathy 

HTH.


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## kitchenelf (Feb 20, 2008)

Dawn - first let me send a great big hug.  

There are lots of things you can cook.  You can roast various vegetables (broccoli, cauliflower, beets, turnips, mushrooms, shallots, grape tomatoes, etc.).  All of these tossed with some pasta and drizzled with more EVOO, kosher salt, pepper, make a great meal.

You really need to turn to his doctor for some help.  Be assertive about needing help with his diet.  There are proteins in lots of things we don't normally think of.  

Also, I understand your trepidation in a transplant.  You also need to sit down with his doctor and discuss that.  Tell him/her your fears.  Let him/her tell you what the quality of his life would be without a transplant as opposed to with a transplant.  Take a friend with you for an extra pair of ears.  Have him/her write things down that the doctor says.  I know from experience that when there are medical issues it's all hard to take in and remember.  



I wish I could help more.  Even though I have kidney issues I just don't know enough to offer any definitive advice.


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## DawnT (Feb 20, 2008)

GG, I've been to INSN site.  Nephrologist is the one who said that the late date of onset and discovery of disease in Jim is what will cause the expectancy to be 8-10 years.  In the 4 years that we have been dealing with this his kidneys have gone from 65% to 20%.  We have to have our 3 children and our grandkids checked for this as they are not sure if it is hereditary or what.  I don't want a kidney found because he will last longer on dialysis!


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## DawnT (Feb 20, 2008)

Thank you KE!


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## texasgirl (Feb 20, 2008)

I'm sorry that you are both going through this rough time. I do have to say, that life expectancy is not always what is written. My uncle would have lived longer on a new kidney. He was on dialysis for 6 years.
God bless.


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## GotGarlic (Feb 20, 2008)

DawnT said:


> GG, I've been to INSN site.  Nephrologist is the one who said that the late date of onset and discovery of disease in Jim is what will cause the expectancy to be 8-10 years.  In the 4 years that we have been dealing with this his kidneys have gone from 65% to 20%.  We have to have our 3 children and our grandkids checked for this as they are not sure if it is hereditary or what.  I don't want a kidney found because he will last longer on dialysis!



I hope this doesn't come across as arguing with you, Dawn  I know what it's like to have a serious, chronic illness and I don't want to upset you by sounding like a know-it-all  But the first link I sent before also says this: "...while that of a patient on dialysis is only 5.84 years."

I also know from experience that the caregiver of a person with a serious, chronic illness is walking a difficult road. Especially when a primary symptom is fatigue and the person can't be a helpmate as he or she was before, it can be frustrating and just difficult to get through. I hope you have people in your life who can help *you* have time to do the things you enjoy and just have people you trust who you can talk to when you need to. Best wishes to you and your husband.


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## JoAnn L. (Feb 20, 2008)

DawnT, sending thoughts and prayers for your DH and a hug for you.


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## DawnT (Feb 20, 2008)

TG.,GG.,JL., Thank you.  GG, you don't sound arguementive.  I know I need to have someone outside my head right now and you may just be elected!!!  I'm just so frustrated, waiting for the dialysis counselor to get back to us (out sick w/flu), waiting for 2nd opinion on any other options out there.  I want to kick and scream and cry but I know that will only make my face wet and my clothes soggy!!  Jim just got insurance at the beginning of the month, how long will he be able to work...  All these questions are going through my mind. *ARRRGGG!!!*


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## Fisher's Mom (Feb 21, 2008)

I'm so sorry to hear this Dawn. End Stage Renal Disease is very frightening for everyone concerned. Not only are you dealing with the failure of hubby's kidneys but it seems everything in your life must change.

First off, you need to get in touch with the dietitian associated with the hospital where your hubby's nephrologist practices. They are full of exactly the information you need. You will not only get a detailed reduced/low protein renal diet, but a huge packet of recipes and ways to make substitutions in your favorite recipes as well. There may be other things that would be good for your husband to limit or eliminate in order to maximize his kidney function like phosphorous, sodium and other things. Again, the dietitian will become one of your best friends in this area.

The other thing is not to be afraid of a transplant until you have more information. The statistics you quoted include _all_ kidney transplants - related donor, living donor, cadaver donor. One of the most common is a cadaver donor and those are not always a particularly good tissue match. Sometimes because of other health issues, an organ may be transplanted that isn't an optimal match because there is no other choice. Depending upon your husband's situation, other health issues, available organs, etc., his particular transplant may carry a much longer average "lifespan".

Also there are 2 basic types of dialysis, which are very different and are accomplished differently. Bilby and Kadesma have a lot of first hand knowledge about this. While it is lifesaving treatment, it can be very hard on the body long term. Again, much depends upon your hubby's other health issues. There are people who do very well on dialysis and actually choose not to seek transplant immediately. But others can really only survive dialysis for a limited time and need to be transplanted ASAP. So you will need to be open to whatever is the best course of treatment for your husband.

So learn all you can, ask lots of questions, and look to family and friends for emotional support through this. There are a lot of people here who care and are here to listen and help. Keep us up on this, Dawn.


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## Barbara L (Feb 21, 2008)

You said that the doctor said to limit his protein, but that you found on the web that he shouldn't eat any at all.  If you don't trust the doctor, maybe he should get a second opinion from another doctor.  The advice to see a nutritionist is good too, as well as much of the other advice you received here.  Have you looked to see if there are any online groups concerning this disease?  There are a lot of groups, such as at yahoo, that deal with diseases.  Discussing it with people who are going through the same thing sometimes helps.  

I found this site, which has some diet advice: National Kidney Foundation: A to Z Health Guide Item

I am praying for Jim, as well as for you, since this affects you both.

 Barbara


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## kadesma (Feb 21, 2008)

Yes you need to limit protein NOW, but when he is put on dialysis all will change..I'm on dialysis which is done at home..While on hemodialysis done at a center by nurses I was told to eat at the very least 6 oz. of protein a day, I have to do that now as well, you body needs it has to have it on dialysis..I also have to take a med to keep the phosphorus  levels down, watch potassium  and most patients on dialysis have to limit fluids and foods that are considered fluids like jello, ice cream or anything that melts...  Don't be afraid of transplant, I have a friend who has had his donated kidney 20 years..Getting a kidney takes a long time at times so go through the typeing and all that is needed, if needed do the dialysis there are several types, I am doing mine at home it is call pd and has the option of a machine to use at night a cycler which I will be training for soon..Good luck, and remember fight all the way to get the best that you can..and do take someone with you armed with all the questions that come to mind. Start now, jot them down when they come..You will make it..I am..
kadesma


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## Bilby (Feb 21, 2008)

Dawn - so sorry to hear about your husband.  I would listen to the nephrologist over and above anything you read on the web.  He will need protein.  He needs a balanced diet still for health and the key to him remaining healthy is to eat healthy as well as excercise.  Ignore the averages.  It doesn't help. Just depresses.  They take into consideration people who opt for conservative treatment (ie no real dialysis at all) as well as pd and hd.  They also have people who die very quickly. There is something like a 5% death rate post transplant in the first year - and let me tell you now that it is a nervous year!  But it also considers people who have had transplants for decades.  I was really lucky in my first month of kidney failure to have met someone who had hers for about thirty years - one of the first done successfully in Perth.  Her side effects were terrible but she was alive and living a full life.  Don't forget also that you can sometimes get a second transplant.  That's what I'm hoping for when this kidney fails - I don't want to be dead in a few years!!!!  

I have done haemo, cpd, apd and had a transplant.  Once I adjusted to hd, I loved it.  Hated cpd and apd.  Love the new kidney!!!!! I'll pm you my email address if you want to ask me anything although it will be different for your husband to me and will differ from the US to Oz.   But I will share anything I can with you that you want to know.


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## DawnT (Feb 21, 2008)

Thank you Fisher's Mom, Barbara L, Kadesma & Bilby.  I know I'm raving, it's just so overwhelming at this point.  I try to set up app'ts only to be told they will be months away, or the person is sick. I know they are human too, but right now...AAAAAAA!!!! Jim plans on the home dialysis- doesn't want to have any of his time wasted sitting around. As if!! I have to strap him down as it is to eat!!!  Thanks again you guys.  You are the best friends a crazy lady could have!!!  I love you. *;>)    *Dawn


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## Fisher's Mom (Feb 21, 2008)

No, no, you are not raving, Dawn. You sound very intelligent and logical woman who has just found out her husband's illness has progressed. I would be very frustrated if I couldn't get the information I needed to care for the person I share my life with!!!! I'm just sorry you are having to wait because I think when they finally get you hooked up with the right people, you will at least understand exactly what needs to be done. Again, keep posting about how things are going.

And I forgot to mention that they will assign you a social worker who will be primarily be helping you with the insurance side of this. It used to be that people diagnosed with End Stage Renal Disease were automatically covered under a "Catastrophic Illness" government administered program like Medicare or Medicaid. I'm sure things have changed but perhaps Kadesma can tell you more about this.


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## DawnT (Feb 21, 2008)

Well I do have good news,  I don't have to worry about my cholesterol!!  I just got my results back and I wet from 253 total ch in June to 188 total ch. LDL went from 189 to 122, HDL stayed at 51, Tris are 76.  Thank God, one thing I don't need to think about!!!  I am doing the happy dance,  to bad you guys can't see.  Maybe it's a good thing since I thin I have 2 left feet!!


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## Fisher's Mom (Feb 21, 2008)

WooHoo, Dawn! That's great! Did you lose weight or something? How'd you do it?


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## DawnT (Feb 21, 2008)

Running after the grandchildren helped!! *:>)* I also ate alot more veggies, less cookies *: (* and ended up losing 50 lbs+.


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## Fisher's Mom (Feb 21, 2008)

You lost 50 lbs???? Way to go, Dawn! That's an amazing accomplishment. I had a friend who's cholesterol was up there and she was on all sorts of different meds to lower it, which did lower it a few points. But when she lost 30 lbs., it dropped down nice and low like yours and her blood pressure even went to normal. But wow, losing weight is really hard. So you should be patting yourself on the back big time!!!


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## DawnT (Feb 21, 2008)

Thank you!!  It feels nice to fit into my pre-kid clothes!!


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## DawnT (Feb 21, 2008)

Okay, so my son; who turns 21 tomorrow, just told me that if his blood type matches his dad's he is going to give him his kidney.  I told him the odds were against that happening but he is calling his Dr. and setting up testing to screen for the disease, see if he is fit enough etc.  I threatened to take away his birthday but he just laughed and said that would give dad 2 for the price of 1!!  The brat. I don't know whether to laugh or cry.  He is as stubborn as an a** ( probably gets it from me).  I'm going crazy here!! And I don't have a rubber room. *:>(  *Dawn


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## Barbara L (Feb 21, 2008)

DawnT said:


> Running after the grandchildren helped!! *:>)* I also ate alot more veggies, less cookies *: (* and ended up losing 50 lbs+.


Okay, I think I can use this information to my advantage.  I am going home to visit my family in a few weeks.  I will tell my daughter that if she cares about my health she will let my grandkids come home to live with me!  

Seriously, I'm glad your cholesterol has come down.  That is something I am working on now.  I can't afford the Lipitor the doctor prescribed, so I started taking niacin again (it keeps me from getting migraines and is also supposed to help with cholesterol).  I really need to get back on track with my eating and exercise.  

Barbara


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## DawnT (Feb 21, 2008)

Good luck Barbara!!  Once you get those grandbabies home you'll never let them go!  **  I know all about migraines, have had them since I was 10 years old.  No fun at all.  I am on Topomax for them now.  Very $$$, thank God for insurance.  Walking seems to help with weight and migraines.  Dawn


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## Barbara L (Feb 21, 2008)

Do you know what type of migraines you get Dawn?  The doctor said mine are called "Classic Migraines."  The doctor said they were caused by the blood vessels to my eyes closing up (which causes me to lose some of my vision, sometimes see sparkles, and sometimes get sick to my stomach), then after about 20 minutes they open wide again, causing the headache.  The doctor had me on expensive medicine too, but I had to wait for the headache to take them.  When I started taking niacin I went from a migraine every week or two to one every year or two.  Not all migraines are the same, so it might not help with yours, but if you have classic migraines, it might be worth trying.  I get non-flushing niacin (it is a B-vitamin) for just a few dollars at WalMart (with the other vitamins).  

Barbara


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## Bilby (Feb 22, 2008)

Congrats on your cholestorol and weight!  That's excellent!  Let your son get tested. It isn't as quick and simple as just a blood test - well not here anyway.  Tissue matching and counselling as well and the process can be lengthy.  It will make your son happy. Cross the live transplant stage when you get to it.  There can be a big difference in time between 20% and 15% function. One day at a time.


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## DawnT (Feb 22, 2008)

Barbara L, My migraines are classic - I go the full gamut= aura, tin hearing, blind spots, numbness from head to toe( including the mouth), nausea and a headache so  bad you want a gun!! When I was little I thought I had a new way to tell me I was getting the 'flu!!  Dumb kid. The worst = pregnancy.  The best = after DS was born and DH had to take care of 3 kids and house for 5 days!!  Maybe not the best as I had 3 days of house work for each day I was down!


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## DawnT (Feb 22, 2008)

Bilby,  The thought of my son going through surgery is off putting to say the least.  We have been to hospital so much, with him through his motocross racing career, his oldest sister in her sports and now with Jim.  I know he is not a child anymore but...  I know - there is no guarentee that he will get that far.  Okay, I'm done.  Anyways it's his birthday, he can do as he wants to!!  Oh, my baby is *21!!!*  How did he get so old, I'm not!?!?!?!?    Dawn


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## Fisher's Mom (Feb 22, 2008)

Bilby is right, Dawn. Let anyone and everyone get tested so that you and hubby and the docs know what your options are when and if the time comes. It will just make things much simpler and decisions easier. And wow, you must be so proud of your son! (Along with wanting to bop him for even thinking about it!)


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## DawnT (Feb 22, 2008)

Fisher's Mom, You are right, I am proud of him.  I want to bop him sometimes but I am proud more often then not.  Just let my SILs know about Jim, 3 of them are willing to be tested for donor potential.  The other is not sure what she feels, and I don't blame her.  Jim is the baby of the family and the only boy.  I told her sisters to leave her alone and let her think about it, check things out for herself and if she needs to talk to Jim she will do it without pressure.  You would have thought I had 2 heads!!  Yes, she is the youngest girl and only 3 years older then Jim.  They(the 3) bully her alot as it is, so I end up standing up for her.


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## Fisher's Mom (Feb 22, 2008)

You know, I would never wish this on anyone and I can just imagine how stressful this is for ya'll. But to find out so many people are willing to get tested must be an awesome feeling. Jim is surely a wonderful man. All these people willing to give him an organ!!! It makes me tear up just reading about it.


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## DawnT (Feb 22, 2008)

Okay, now I'm going to go buy stock in tissue.  I've used enough these last few days to build a mansion for several companies!!  Yes, I agree.  Jim is definately a wonderful man and truly blessed with family and friends. As I am with my family and friends here at DC.  Thank you all.  * *Dawn


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## DawnT (Feb 28, 2008)

Just to update:  Have an app't Friday with dialysis counselor.  Have lots of questions for her!!  Now have a new friend - SIL's hubby has a friend that is a Harvard professor of Medicine, a researcher and now is interested in Jim's health problem.  Has requested lab results and tests copies be sent to him also.  He feels Jim's Drs. at Strong are tops, what a relief to hear!!!   Dawn   **


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## Dina (Feb 28, 2008)

Dawn,
Know that Jim has angels watching over him.  It's manifested through all these wonderful people that surround him -- family, friends, doctors, etc.  All of my prayers are with him so he can stay strong and accepts what comes.  There is no pain that Heaven cannot heal.


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## DawnT (Feb 28, 2008)

Thank you Dina, you don't know how much your words mean.  I thank all my DC family, you guys are the world to me.  Love ya,  Dawn  **


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## kadesma (Feb 28, 2008)

Keep your chin up Dawn, DH is going to need you to be strong..That way he can just get better and not worry about you..He will know you are by his side and will love you more for being so strong..If you need to have a hissy or cry or kick the cat or bite someone, come here and let us help..You are going to be just fine so is he..If I can help let me know.

kades


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## DawnT (Feb 28, 2008)

Thanks kades,  I mean that soooo much!!    Dawn


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## DawnT (Mar 4, 2008)

*Update*

Went to kidney Dr. yesterday and had meds changed.  Jim's bp has been going up, headaches increasing and kidney pain.  Dr. wants Jim to get the vascular ports put in as a backup so when he does have a transplant they don't have to go through the neckif they have a problem.  Jim has definately decided to go with home dialysis as he wants to have some semblence of a normal lifestyle; tinkering with motocross bikes, working on the barns, going to the races,.... We now have been told to have him eat 40 - 59 grams of protien a day, low fruit as it is high in potassium so instead of an apple it is a half; no bananas, dried fruit, cantalope, honeydew, oranges.  When I read the list, he asked "What fruit can I have?"  I also had to tell him no nuts either, you would have thought I cut off his left arm.  We go back in May to see how things stand.  In the meantime, the kids are being tested as possible donors for thier father.


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## kadesma (Mar 4, 2008)

DawnT said:


> Went to kidney Dr. yesterday and had meds changed.  Jim's bp has been going up, headaches increasing and kidney pain.  Dr. wants Jim to get the vascular ports put in as a backup so when he does have a transplant they don't have to go through the neckif they have a problem.  Jim has definately decided to go with home dialysis as he wants to have some semblence of a normal lifestyle; tinkering with motocross bikes, working on the barns, going to the races,.... We now have been told to have him eat 40 - 59 grams of protien a day, low fruit as it is high in potassium so instead of an apple it is a half; no bananas, dried fruit, cantalope, honeydew, oranges.  When I read the list, he asked "What fruit can I have?"  I also had to tell him no nuts either, you would have thought I cut off his left arm.  We go back in May to see how things stand.  In the meantime, the kids are being tested as possible donors for thier father.


Good let the kids run with this, it is great and makes them a part of it all..That's what families do  Now about the phosphorus there is a med that I have to take to keep phosphorus in check when I eat..It is called renagel and all of us on dialysis are using it..I don't need as much on the PD dialysis as on hemo dialysis, but it really helps..doesn't do anything to you just blocks the absorption of phosohorus id cut way down on nuts and especially cheese..Now of course I can have both, but do so in moderation..Find out about this med, it can make things easier for him..Of course he can't make a whole meal of just apples but you know the old saw, everything in moderation..Heed it, it oh so true..

kades


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## DawnT (Mar 4, 2008)

Kades, The Dr. put him on kolax(?) for the potassium.  It is supposed to direct it into the bowels instead of the kidneys.  Sounds kind of like your med.  He needs to take it 3 times a week.  Does it sound about the same?  He still has pb&j sandwiches for lunch at work as he will not eat lunch meat.  What about pineapple, is that high in potassium?  Where can I go to find out?  The list the doctor gave me doesn't seem very clear.  Any help would be greatly appriciated!!  *;>)    Dawn*


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## kadesma (Mar 4, 2008)

DawnT said:


> Kades, The Dr. put him on kolax(?) for the potassium.  It is supposed to direct it into the bowels instead of the kidneys.  Sounds kind of like your med.  He needs to take it 3 times a week.  Does it sound about the same?  He still has pb&j sandwiches for lunch at work as he will not eat lunch meat.  What about pineapple, is that high in potassium?  Where can I go to find out?  The list the doctor gave me doesn't seem very clear.  Any help would be greatly appriciated!!  *;>)    Dawn*


Dawn,
Had to get out my book. Pineapple for some reason is not listed..but, here are some Ideas for you (0 to100 mg.)
Low potassium fruits, these are 1/2 cup servings or I'll give a size:
applesauce, bluberries, cranberries -1 cup. grape juice, papaya, peach or pear nectar, canned pears, Japanese persimmon,
Med potassium fruits (101 to 200mg) 
small apple apricot nectar
berries, cherries
canned figs
fruit coctail, grapes 15
gooseberries
1/2 grapefruit or juice
lemon juice
mango/papaya
passion fruit1-2
small peach
med. plum
2 Tab. raisins
2-1/2 inch tangerines
1-c. watermelon, be careful though if liquids are restricted.
High potassium fruit (201-350mg)
fresh apricots
dried apricots
avocado pears
bittermelon
dates 1/4 c.
durian, 1 med.
dried figs,2
guava
kiwi,1/2 med.
loquats
melon 1/8 of a small
nectarine, 2 inch
pomelo
small oange or juice
pomegranite
fresh med. pear
10z. pumpkin seeds
very high potassium ( content varies)
Banana,
breadfruit
durian
kabocha
platain
prunes
prune juice
taro root.
Hope this helps you a little will try to find out about the pineapple for you..
Can also help with the veggies too if you need it.

kades


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## kadesma (Mar 4, 2008)

kadesma said:


> Good let the kids run with this, it is great and makes them a part of it all..That's what families do  Now about the phosohorus there is a med that I have to take to keep potassium in check when I eat..It is called renagel and all of us on dialysis are using it..I don't need as much on the PD dialysis as on hemo dialysis, but it really helps..doesn't do anything to you just blocks the absorption of phosphorus..I did cut way down on nuts and especially cheese..Now of course I can have both, but do so in moderation..Find out about this med, it can make things easier for him..Of course he can't make a whole meal of just apples but you know the old saw, everything in moderation..Heed it, it oh so true..
> 
> kades


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## DawnT (Mar 4, 2008)

*Thanks Kades!*

Thank you, Kades.  Jim was so very happy to see pears tonight I thought he would cry.  Where can I get that book you got the ino from?  You have once again proven to be a life, and sanity, saver.  By the wasy,  His mother, 68 years young, wants to see if she can be a donor.
Dawn


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## Fisher's Mom (Mar 4, 2008)

I'm glad you have some information now. There should be a dietician associated with your hospital or dialysis center that can provide you with recipes and suggestions for getting the most enjoyment from hubby's new diet. Here's a site that has the protein, sodium, potassium and phosphorus values for a lot of different foods.
Renal Failure Diet Care Guide Information
HTH, girlfriend!


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## DawnT (Mar 4, 2008)

Thank you Fisher's Mom!!  You guys don't know how much of a life saver you are to me at this time in my insanity! I mean Life.  LOL  Thanks again, Dawn   *:>}*


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## kadesma (Mar 4, 2008)

Dawn the book I have was given to me by the dietitian at the center.I'd contact the center you will be using and ask  for help from them. Explain you want to get started NOW not wait...If they are anything like the ones I'm working with they will bend over backwards to help you.
kadesma


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## Fisher's Mom (Mar 4, 2008)

Kadesma is right, Dawn. The dietitians are really unsung heroes in the whole renal disease arena. They are awesome, always willing to help, will usually return phone calls immediately, and have so much information. They _know_ how much it means to someone who's facing a tough health problem to just have a meal they like! You can't really say to your nephrologist "My hubby is really depressed about not being able to eat his favorite fruits". You'll get a blank stare. But a dietitian will understand and bend over backwards to try to find foods and recipes that will help fill the void.

So how are _you_ feeling, Dawn? This is a lot for you to handle. Just remember that there are people here you can vent to or cry on or rejoice with. We've all got your back.


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## smoke king (Mar 4, 2008)

I'm new here-this is only my second post. I wish I could help with the dietary needs, but anything I could add would only be guessing.
Do know that my prayers are with you. God bless.


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## mikki (Mar 5, 2008)

Dawn- Just saw thins thread, you have my thoughts and prayers. My friends sons kindneys are only working at 4% ( he's only 22)and he is awaiting a transplant. He said that the hardest part of the diet was not the change in foods he could have it was more of the limits and having to count all the grams of everything he put in his mouth. Tell anyone and everyone to get tested, the more people tested the more options you will have. Good Luck and stay positive,you'll make it through this.


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## DawnT (Mar 5, 2008)

Unfortunately, the dietician wasn't as helpful for us. She was also called away and didn't come back, and has not called back with answers to questions we had since Friday.  I will call the dialysis center today and see if I can talk to her.  Thanks for asking about me FM, I'm hanging in there.  I get frustrated, scared for Jim and the kids, and worried I'm not doing enough/right things.  I know it's part of the process, but I don't like it.  :>(


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## DawnT (Mar 5, 2008)

Mikki & Smoke King,  Thank you for your prayers and words of encouragement.  M- I agree with your friend's son, it's a pain to count everything in grams of protien and to watch the potassium!!  My prayers are with him also.  Dawn  :>)


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## kadesma (Mar 5, 2008)

DawnT said:


> Mikki & Smoke King,  Thank you for your prayers and words of encouragement.  M- I agree with your friend's son, it's a pain to count everything in grams of protien and to watch the potassium!!  My prayers are with him also.  Dawn  :>)


Dawn,
sure it's a pain to count, but after awhile you will beable to eyeball a piece of fruit and come pretty close in how much it weighs  and know which one to buy...All new things are time consuming and change well most of us resist it and then we realize it's what we must do and hey, it's easier this way Right now you are caught in the middle, you're worried about your DH and feel helpless, but you are the center piece here..He is going to need you more than ever pretty soon..Don't let the little things do you in..Pick your battles and let the small stuff go..You can do this..Hound that dietitian, and remember there is more than one kidney center, if this one doesn't fit, find one that will. I got lucky not only is mine wonderful, it's close to home, so I don't have a long way to go..Hang in there Dawn, you will make it and so will your DH..
kades


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## Fisher's Mom (Mar 5, 2008)

DawnT said:


> Unfortunately, the dietician wasn't as helpful for us. She was also called away and didn't come back, and has not called back with answers to questions we had since Friday.  I will call the dialysis center today and see if I can talk to her.  Thanks for asking about me FM, I'm hanging in there.  I get frustrated, scared for Jim and the kids, and worried I'm not doing enough/right things.  I know it's part of the process, but I don't like it.  :>(


I'm so sorry to hear this, Dawn. Like Kadesma said, maybe you'll need to check with other centers or whatever hospital your hubby's doctor works out of. You will really need assistance with dietary restrictions because the type of diet the doc wants him on may change over time. (Is he on low sodium, too?) I know you must be really anxious right now but you'll get through this. We'll help you, too.


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## Jikoni (Mar 5, 2008)

Sending prayers your way Dawn.


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## DawnT (Mar 5, 2008)

Thank you Jikoni.  Kades and Fisher's Mom, I finally got to talk to the dietician.  She is sending me so info and emailing some sites, too.  Thank you for your help in the interum.** I have to check hubby's lunch pail and see what he ate today!!  Talk later.  Dawn


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## Bilby (Mar 5, 2008)

Just catching up with this Dawn.  Ask also for the total daily allowance in mg of potassium Jim is allowed so that he can take control of his diet better. There are a lot of items that can catch you out as potassium appears in a lot of items not just fruit and veges.  My intake was set to 2700mg/day which meant if I ate a 140g banana, I would ingest 483mg of potassium. It meant that I could eat the banana and still know that I had 1200mg to play with.

Avoid any dried fruit and veges (incl fruit cakes), bananas, mangoes, beans, seafood, Chinese takeaway, packet mashed potato, and the list goes on!  In hospital, we were often fed vegetables that had all the nutrients (and taste) boiled out of them, an apple, pear or cup of canned peaches, pears or two fruits.

Like Kadesma, I was on a phosphate-binder, Caltrate, which is often prescribed over here for osteoporosis. I would have to take between four and six Caltrates a day (two after every meal) and it depended on how high my phosphate levels were whether that meant lunch as well as dinner and breakfast.  (We talk about phosphate levels over here.)

As Kadesma and I have both said, Jim can eat what he wants in moderation but he just needs to consider the overall impact of each choice and perhaps not have something else that day.  Also consider whether he does daily dialysis as per CPD/APD or a few times a week as per haemo as levels are continually building up between sessions.

If the dietician doesn't give you any useful data, and they don't sometimes until you pester them (often it is very basic and general), then I can send you copies of the specific listings of several fruit/veges. It would be snail mail, but it would still get to you by the time before he went onto dialysis!!

As to the neck catheter.  The first couple of times I had them inserted (here they are referred to as a Hickman line), my neck ached for weeks but the more I had, the quicker my recovery from the procedure.  I've lost count of the amount but at least seven over the years. All were inserted under a mild relaxant or memory blocker so that you remain awake, even if not alert, and were inserted by a radiographer.  Sure there can be complications from them but the less time they are there, the less likely that will happen.  If he does need to go down that path, get him to tell the person putting it in that he will need to wear a seatbelt and to be mindful of its location if at all possible. (In my case, I also need to point out to (male) radiographers the need to wear a bra as well - they tend to be a bit blinkered as to what they are doing otherwise!!! LOL)  Also if he does need to go down this path, you will need access to a hand shower in preference to trying to keep plastic over it when he showers.  Much easier with a hand shower to wash your hair - unless of course he is bald and then he can probably ignore that advice!! LOL


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## Fisher's Mom (Mar 5, 2008)

Bilby said:


> Just catching up with this Dawn.  Ask also for the total daily allowance in mg of potassium Jim is allowed so that he can take control of his diet better. There are a lot of items that can catch you out as potassium appears in a lot of items not just fruit and veges.  My intake was set to 2700mg/day which meant if I ate a 140g banana, I would ingest 483mg of potassium. It meant that I could eat the banana and still know that I had 1200mg to play with.
> 
> Avoid any dried fruit and veges (incl fruit cakes), bananas, mangoes, beans, seafood, Chinese takeaway, packet mashed potato, and the list goes on!  In hospital, we were often fed vegetables that had all the nutrients (and taste) boiled out of them, an apple, pear or cup of canned peaches, pears or two fruits.


I remember the potassium thing bothered my daughter more than anything. The dietitian was so sweet to give me a recipe for "dialyzed potatoes" which as I recall were potatoes boiled _forever_ in 5 changes of water and then mashed. Almost no flavor and of course, no salt. But every once in a while I'd make a huge pile of these and pepper the heck out of them and we'd pretend we were having mashed potatoes.

So much has changed in the last 20+ years, though. What is the port in the neck? Is that for hemodialysis? My daughter had what they called a shunt in her upper leg as her forearm was too small. Then the access for peritoneal dialysis was in her abdomen (duh!) and I can't imagine that has changed. Anyway, there have been so many advances made that I hope makes thins whole process a little smoother.

You will make it through this Dawn. Especially with Bilby and Kadesma to show you the ropes!


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## Bilby (Mar 6, 2008)

Yeah, the Hickman Line was for haemo and usually only inserted for short durations eg for acute patients or when other forms of access are denied.  A vascath (a cathether inserted through the chunky vein in the groin) is even shorter term - like 48 hours - and you aren't allowed to move off your back.  You can get another groin access for a longer time like the Hickman and you can move for that one.  If you have a chunky vein, they will take it!!

I too had the AV graft in my arm but mine was in my left forearm on the inside cos I couldn't take a fistula (surgical combination of artery and vein).  And then I had the catheter into the peritoneum when I went to PD - a foot of tubing in and a foot of tubing out!!  When they took it out it was like having two navels!!  Felt part-Martian!! LOL


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## DawnT (Mar 6, 2008)

Jim's da of K is 2000mg. Right now I'm just guessing as I haven't gotten any thing other than for the fruit to go by.  I did talk to the dietician yesterday and she is sending me things.  As for his protien count we came in at 52g total for yesterday!!  The best thing was that he was happy and full!!  *; )*  I will survive, and so will Jim.  OR ELSE!!!!  Dawn


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## kadesma (Mar 6, 2008)

DawnT said:


> Jim's da of K is 2000mg. Right now I'm just guessing as I haven't gotten any thing other than for the fruit to go by.  I did talk to the dietician yesterday and she is sending me things.  As for his protien count we came in at 52g total for yesterday!!  The best thing was that he was happy and full!!  *; )*  I will survive, and so will Jim.  OR ELSE!!!!  Dawn


Dawn, I'm off right now to dialysis, but will post some veggies and their MG couts for you later this morning.. but for a start, mushrooms, artichoke cabbage, cauliflour eggplant, onion peas,1/2 ear of corn. are all medium potassium veggies, (101-200mg) use 1/2 cup serving with them..
kades


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## Bilby (Mar 6, 2008)

DawnT said:


> What about pineapple, is that high in potassium? Where can I go to find out? The list the doctor gave me doesn't seem very clear. Any help would be greatly appriciated!! *;>) Dawn*


What sort of pineapple Dawn?  Fresh, canned in natural juices, canned in heavy syrup, preserved? I have various readings for canned pineapple but haven't seen one for fresh.

Anything that you can't find in a list that you really want to know about, send an email to either the supplier (like with beverages), a marketing board (like with eggs and potatoes over here), or your food control dept.  If they can't directly help you they may be able to steer you right.


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## Bilby (Mar 6, 2008)

Dawwn, no idea as to the authenticity of this site, but at a glance it looks reasonable and may be of use. It also lists phosphorus, calcium, and sodium.  You may also want to check out the National Kidney Foundation site for further info.
Food Data Chart - Potassium


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## DawnT (Mar 6, 2008)

Bilby,
Thank you for the sites.  I will have to print them off as soon as I get to my DD's house as my printer is not working, I think it's on strike!  I guess Jim is going to have to get used to mushy vegies.  At least he will be able to have them and that is all that matters at this point. Oh wait, I have to eat them too!!.  Oh, well.  I will survive, as the song goes.  Dawn


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## buckytom (Mar 6, 2008)

dawn, i just saw this for the first time. sorry i haven't responded.

looks like you've got some great info, so i'll just send my good wishes so that jim's kidneys get better.


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## DawnT (Mar 6, 2008)

Thanks Kades.  We are definately getting on top of this.  "One day at a time, Sweet Jesus".  *: )*  BTW, DS leaves for northern California on the 12th to visit my Aunt and my cousin's family in Oroville!  He is also going to ski in Nevada with his cousin, lucky brat!! **  Dawn


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## DawnT (Mar 6, 2008)

buckytom, Thank you for the wishes.  Jim will eventually need to have a transplant, my kids are being tested tomorrow both to make sure they don't have the disease and to see if they can be donors.  Please keep them in your well wishes also.  Thanks again.  **  Dawn


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## DawnT (Mar 6, 2008)

Now that I've had a chance to really look over the sites, I really feel like s***.  Jim has been eating ww bread everyday, steamed vegies, everything wrong.  What have I done to his kidneys!?


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## kadesma (Mar 6, 2008)

DawnT said:


> Now that I've had a chance to really look over the sites, I really feel like s***.  Jim has been eating ww bread everyday, steamed vegies, everything wrong.  What have I done to his kidneys!?


Sweetie, you didn't do this, his illness did it...Now, you start over and do what needs to be done. You can do this..I'll help all I can so will Bilby, she is  way ahead of me in this game...Tell me what they want him to eat and how it is to be prepared. Maybe we can work on that with you. Just relax, re-think and then we do...The main thing, get that protein in there.
kadesma


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## DawnT (Mar 6, 2008)

Kades, Thats just it. They have only told us 50-60 grams of protein, only 2000mg of potassium.  We were never told not to have ww bread, not to steam the vegies,arrrggggg!!!  I feel so rotten right now.   The dietician told me he could have rice crispy treats, so I made them.  Now I am not sure if I should let him have them or not! And of course, I don't know how much either.


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## kadesma (Mar 6, 2008)

DawnT said:


> Kades, Thats just it. They have only told us 50-60 grams of protein, only 2000mg of potassium.  We were never told not to have ww bread, not to steam the vegies,arrrggggg!!!  I feel so rotten right now.   The dietician told me he could have rice crispy treats, so I made them.  Now I am not sure if I should let him have them or not! And of course, I don't know how much either.


Dawn,
how did they want you to cook the darn veggies? Raw is not gonna get it with most veggies..I'd let him have some of the treats, just monitor the amount...Put some in the freezer that way hard as a rock is not so appetizing Give him some bread, find out what type they think is best. I feel calories are not as important as the correct amounts of protein and such..But the no steaming, the only thing I can think of is maybe they feel steaming pulls off to much of the nutrients.I'm looking in the cookbook they gave me..If you want I can PM you some recipes..These are for a renal diet..I've not made them as They pretty much let me pick and choose for my self as I've been doing this for many years now because of the diabetes...
Just let me know, I have a nice carrot recipe, meat balls, breads..
kades


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## Bilby (Mar 7, 2008)

Dawn!!!!!!!  You are going to be told oodles of conflicting information - one medical person will tell you full cream milk only, another hilo or skim only, or boil all the nutrients out of the vegetables, another, don't do that but just have a smaller serve!  It is never ending.  You won't work out what works for Jim until he is having very regular blood tests and you not only get to see them but get to understand what they mean.  As an example, EVERYBODY told me not to drink milk, but my body craved milk so I had it - every day and nothing happened other than I was happy.  Everyone is different and all the medical people talk about is in the average, not specifically.  The bread and the veges are doing nothing to the kidneys or negligible anyway (unless Jim is part rabbit I guess). Potassium is bad for a renal patient's heart.  And all of these things are much worse once the kidneys have completely packed up. Jim's hasn't.  He can still process some of these things from his body without intervention.

Every new patient (and their supports) go through what you are dealing with now.  Every one of us.  It is all new and we all go looking for advice from the professionals but pretty much they all talk in lists and absolutes.  After a while, you will realise that you find what works for the patient. You know how Kadesma and I talk about "moderation"?  Well, that's cos that's how it's done away from the medicos.  It is all a balancing act.  You want Y, well don't have Z, or cut down on it.  At dialysis, we were provided with sandwiches that we could preorder BUT they would only let us have three fillings and only one of those could be a protein.  That meant no ham and cheese toasted sandwiches and the like and how basic is that!!  But most of us ate more complex sandwiches etc away from the centre.  Cos real life has to sneak it's head in every so often.

And I will tell you now, I never ever boiled my veges.  I steamed, I stirfried and I roasted or I had a salad but I just didn't have huge amounts of them.  What's the point of eating them if all the goodness has gone from them?  I also chose veges/salad/fruit that I liked and completely avoided those that I wasn't overly keen on or actively disliked. (What's the point on wasting your allowance on something that doesn't appeal??) If I liked it, I had it, just not a lot of it if it was on the banned list.

My doctor used to say that patients are generally good with their blood results or good with their fluid levels, seldom both.  I was good with my bloods.  Sucked badly with the fluids!! LOL

Now - sit down with a book or a (happy/funny) movie and you and Jim have a glass of wine or similar, and just take a break from thinking about it all.  You will make mistakes and you will never know all you need to know.  Facts.  Plain and simple. Worrying about it all will not help either of you and will just make everything much worse - well at least in your mind.  Please take a mental break for just a day.  You have got this for a long time to come. Don't use up all your reserves before they are truly needed.

Now, think soothing thoughts.........  ;-)


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## DawnT (Mar 7, 2008)

Thank you Bilby.  I think whats getting to me the most is the potassium thing.  What happens if it does not come up to the count, what if it's over by a couple of hundred mg, questions that of course don't come up during the time the dietician is available!!  That and I can't find peanut butter on the listing for potassium!!  Stupid, stupid list.


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## Bilby (Mar 7, 2008)

Okay potassium - you have a range that he needs to be in.  Too much or too little is bad for the heart.  Too much and they dialyse you or give you insulin, something orally and something up the other end too.  (Had that twice!!  Fun stuff!!) Too little and they put you on a potassium drip or put it in the dialysis fluids.  Had that a couple of times too. Vomitting and the runs will change the potassium amount in the body and you can dip below the recommended levels.  Thing here is Jim can still expel potassium naturally so provided he isn't exposed to high/low levels for extended times, you just correct as you go.  But for the most part you won't know unless the blood tests tell you or something goes wrong (which at this stage is highly unlikely).  The day before Jim has a blood test make sure he doesn't eat something that is going to throw the tests out, like I often had a hankering for seafood or Chinese the day before my tests and if I gave into it, I would cop a lecture from the nurses!  But that was it.  Dialysis took care of the rest.

If Jim eats a mango one day, well make sure he has a lower potassium intake for the next day or two.  Work on an average over those days BUT that is not to say he can have a HUGE amount of potassium on one day and next to none the next. A little bit up and a little bit down though is fine.

Some of these recommended levels will change once they really start monitoring his bloods.  His body will make a few determinations of its own and then they may say he needs more of this or less of that.

I'll see what I can find out about peanut butter but otherwise, send an email to the manufacturers and just ask them.  If you explain your situation they should be helpful. If not, change brands!!


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## Bilby (Mar 7, 2008)

Dawn, according to Food Data Chart - Potassium, 100g of peanut butter provides 700mg of potassium and 330mg of phosphorus. An average serve is 20g (about a metric tablespoon) (well I think that is on a bit thick personally) so an average serve equates to 140mg of potassium and 66mg of phosphorus. It doesn't say if it is light, crunchy or whatever so I assume there is little variance in the different varieties although brands may differ.  So not a daily food perhaps BUT this depends on his overall diet.  Start a food and drink diary and go from there. Makes it easier to balance the scales - which is what you are trying to do remember. Not banning foods.


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## DawnT (Mar 7, 2008)

Thank you.  That is just it, we have just started this and the testing for potassium isn't until May.  Jim has not been screened for potassium levels before this and all of a sudden we are told to monitor and keep it at 2000mg/day, have a good day.  No information, nothing.  That is why I am so thankful to you, kades and Fisher'sMom.  At least with you guys to help steer me in the right direction, I may be able to keep my sanity somewhat in tact, figure things out and keep Jim's kidneys going as long as possible. I will call the company that make the peanut butter and see what they say.  Thanks again.    Dawn


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## DawnT (Mar 7, 2008)

We must have been typeing at the same time.  Thank you for the info!!  Dawn


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## Bilby (Mar 7, 2008)

Dawn, visit your GP and ask him for a Full Blood Count (or at least for the items that concern you most) so that you can get a level and know how you are doing.  Your family doctor should be a lot more accessible than the specialists and he/she is meant to help you both mentally and physically. Not sure what testing they are going to do in May.  We just had monthly (or more often) blood tests to monitor.  They would take our blood at the beginning of dialysis and part way through the session of four hours, if anyone had an abnormal reading, the pathology dept would phone through before the end of the session.


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## DawnT (Mar 7, 2008)

Thing is, Jim hasn't even started dialysis yet.  I will cal our GP later and talk to him. Thank you so much.  Dawn


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## Bilby (Mar 7, 2008)

Yeah so don't worry about it too much at the moment.  His body can do what mine couldn't. I don't mean be negligent just don't fret. One step at a time Dawn.  You have so much information given to you already but without the structure to process it yet.  You need to know what to look for and how to react.  Just know the info is out there and that when you need it you know where to go.  For now, take a step back from the edge.  We'll still be here when you need us but at the moment, I am more concerned with you having too much to process.


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## DawnT (Mar 7, 2008)

What!  Me!  Worry!  Nonsense!!  If you could see me, I am ppllplplsting my lips and pulling out my hair( and I don't have very thick hair to begin with!). Thank you, I will step back and relax.  Just got called to sub at school. gotta go.  Dawn


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## Bilby (Mar 7, 2008)

Good - something to divert your attention for a while!! ;-) Enjoy your day!!


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## DawnT (Mar 8, 2008)

Thank you Bilby.  I stuffed him yesterday.  59g proteins and 1835mg potassium.  Anybody have a good used dirty blonde wig for sale, I think I'm going to need one or ten!!!


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## Fisher's Mom (Mar 8, 2008)

Bilby said:


> Good - something to divert your attention for a while!! ;-) Enjoy your day!!


Why not try a red wig, Dawn? That might help you and hubby "divert your attention for a while"!


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## DawnT (Mar 8, 2008)

I don't think he would notice if I shaved my head!  He seldom looks up that far!


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## Bilby (Mar 8, 2008)

Oh my!! Aren't you meant to be looking after his BP too??!!! ROFL


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## DawnT (Mar 11, 2008)

Funny you should say that.  I have been tracking it and it is climbing - from 112/68 to 138/84.  This is in the last week and I am quite sure due to the change in meds, but I am calling the dr. anyways.  To top it all off, I think I am getting a bladder infection,  this sucks.


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## Bilby (Mar 11, 2008)

The BP can also just be a sign of his stress at all the changes that are being thrust upon him and seeing you stressed too!!!!  If he has been put on a laxative, that may have an effect but I would be looking at his stress levels first and foremost. Mind you, I would be quite happy to have either of his readings!!! LOL

I think in the venting thread there were some cures for UTI's - cranberry, acidopholus and lots of water.  I always found lots of warm coffee was good for me. A bit depends on the cause though.  In your case, stress would be the most likely cause and so you have a good chance of nipping it in the bud without a doc.  (Think you may have had enough of them for a while!!)

I think you both could use a glass of red by the fireside tonight!! ;-)


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## DawnT (Mar 11, 2008)

Okay, whose house should I burn? As for the "red", we don't drink unless you were implying Kool-ade. Other problem started yesterday and is getting so I float to the bathroom instead of walk (er run).


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## Fisher's Mom (Mar 11, 2008)

DawnT said:


> I don't think he would notice if I shaved my head!  He seldom looks up that far!


Well, I'm glad to hear you're keeping his "spirits" up! As far as his blood pressure, make sure he isn't increasing his use of salt trying to get used to his new diet. Sometimes it's easy to add a little extra salt here and there and then the BP starts to creep up. Also, there are many meds that can make BP meds less effective. I know your hubby has been started on some new ones. Be sure to let his doc know if his BP continues to be higher than before. They may need to make some adjustments. But, it sounds like ya'll are hanging in there. I'm really proud of you and the way you have just stepped up to all of this. You go, girl!


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## DawnT (Mar 11, 2008)

Fisher's Mom,  Jim is def not getting extra salt as I cook, serve and he only knows where the pepper is!!  The meds have only been in effect for a week, so that may add to the BP.  Also this whole kidney problem might just add a wee bit to it too!  ;-)


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## DawnT (Mar 19, 2008)

*Update*

Just a quick update.  We have found a new kidney doctor right here in town.  Jim sees him this Friday.  Jim has also decided to try hemodialysis when the time comes.  There is a new dialysis center that is opening next month just a few miles away from us.  So this will be easier for us when the time for dialysis comes, it's right near Walmart!  My stress level has dropped a bit as we have adjusted to Jim's diet needs, as long as he is happy, I'm happy.  The only stress I have at this point is that DS is out in Northern California, and has managed to break his foot! *KIDS* - you gotta love 'em!!


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## Bilby (Mar 19, 2008)

Good for both you and Jim!  I really liked haemodialysis.  The treatment was not very intrusive for the most part, we had individual tvs with central dvd/video, friendly (and very, very chatty!) nurses, happy patients, and I got to read books, do office work, watch the tv/dvd/video, chat to nurses/patients/on the phone or even catch up on sleep!!  I went mid-pm on Tues and Thurs so that I was able to go to work M, W, F and half-days on Tues and Thurs.  Sunday was the only right-off for me as I had to be there at 7am and wasn't up to much in the afternoon, esp in summer.  Other patients stayed up all night prior to dialysis having fun (in whatever form that took!) and slept the dialysis session away! With cooperation from the centre, you BOTH can still have a very full life.

Hope your DS recovers soon and let us know how the appt goes on Friday.  (We have nothing open at all on Good Friday except emergency services and a (very) few seafood restaurants.  Perth will be a couple of rungs over ghost town on Friday!


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## DawnT (Mar 19, 2008)

Thanks Bilby!! For the most part, I imagine Jim will probably sleep once he gets used to the routine, as he works 10 hour days- 4 days a week!  DS has to see an orthopedic surgeon when he gets back as he chipped the navicular bone on the top of his foot. He is not due back until the 25th. He tried to change his flight plans but was told it would cost $450.00 more.  Of course, there's no hurry as DD just called to say the orthopedic surgeon can't see him unti April 18th.  Guess I won't sweat the small stuff!


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## Bilby (Mar 19, 2008)

Gee I hope he has some good painkillers if he has to wait that long!!

I didn't like sleeping the full session as it threw my normal sleep patterns out, so I ever only napped.  I was trying to cram a 40-hour week into my odd hours too, so was working really late on M/W/F to try to compensate for the other two days.  At least he will have you to cook etc.  My mum tried to help me but she doesn't live with me so I still had to do all the house things, shopping, cooking, cleaning, blah, blah... I knew I wouldn't be able to keep it up but needed the money while i could get it.  I did nearly three years of that routine until I got too weak to go to work anymore.   Gee, I'm getting tired just thinking of the past!!  And when I think of what I was like BEFORE the failure!! I don't even achieve in a week anywhere near what I did in a day all those years ago!! LOL  _Mem'ries...._


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## DawnT (Mar 19, 2008)

Bilby, you have such a beautiful voice!  Yes, they gave him Vicadin.  He's feeling NO pain.


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## Bilby (Mar 19, 2008)

Got the schnozz for it anyway!! ;-)


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## DawnT (Mar 19, 2008)




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## LT72884 (Mar 19, 2008)

My uncle has the same thing, so i could ask him and see what he says. My uncle can not have any salt at all.


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## DawnT (Mar 19, 2008)

Thank you LT, any information helps!!


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## LT72884 (Mar 19, 2008)

i just talked with my mom (ICU nurse and IV team) and she says that a very low in salt and potassium diet.  Potassium is a salt and those type of minerals control muscle activity. so when you get to much potassium in your blood it will effect your heart thus a heart attack. Thats one of the main reasons for dialysis is to clear out all the high levels of potassium becasue your kidneys are not filtering it for you. a lil info for the forums. Talking with your doctor is the most important thing my mom says. So ask alot of questions 

we are still lookin for some recipe's


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## kadesma (Mar 19, 2008)

DawnT said:


> Just a quick update.  We have found a new kidney doctor right here in town.  Jim sees him this Friday.  Jim has also decided to try hemodialysis when the time comes.  There is a new dialysis center that is opening next month just a few miles away from us.  So this will be easier for us when the time for dialysis comes, it's right near Walmart!  My stress level has dropped a bit as we have adjusted to Jim's diet needs, as long as he is happy, I'm happy.  The only stress I have at this point is that DS is out in Northern California, and has managed to break his foot! *KIDS* - you gotta love 'em!!


Dawn,
I've been running back and forth here trying to get my dialysis  decided so have'nt checked in for a day or so..Before Jim commits to hemo find out about his access site and then find out about the PD cath..Find out your options, ie: hemo access cannot be removed they are afraid of damage to the upper arm..While a cath can be removed..Find out what is going to be done with each, hospital or office procedure, dangers, etc...Then decide, hemo entails so many hours a week and so many times a wee, PD can be done at home but is time consuming and there is a lot to learn..If you are able ask about the PD and the cycler for at night..Don't let them put you off find out all you can..Ask, ask and ask again..Right now that is what I'm going to have to do as this PD is driving me crazy with carying this fluid around..That is what bugs me..Hemo three hours and I'm free and no extra fluid to lug.. If you have any questions, PM me and we can talk.
cj


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## Bilby (Mar 20, 2008)

Kadesma is right Dawn. Except the tube for haemo can be removed as I have had mine removed.  Generally though they will try to create a fistula where the artery and vein are surgically combined and unless problems occur you are stuck with it.  But it is all your own body.

I hated having the extra fluid in my body for CAPD (manual bags done four times a day). Felt like a beached whale all the time. It was better with the cycler (APD) as I could go "dry" ie, no remaining fluid in the peritoneum.  But everything will be individual to Jim and until he actually experiences any of it, it is just an assumption that he will prefer x to y.  It all sounds worse than it is really but the feelings you go through with it (not just the emotional but the physical) are not something you can determine until you actually do it and by then you have committed.  Just know that there are ways and means to make Jim more comfortable for the most part if the chosen method isn't how he imagined.


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## DawnT (Mar 20, 2008)

Thanks for the info LT.  Tell your mother thank you, also!!  Kades- Jim has actually been thinking about this for a while( which shocked me).  He really wants to try the hemo for a few reasons- 1. He would have the opportunity to ride his motocross bike (slowly) at home.  2. He would still have use of his stomach muscles to lift.( he feels the cathater would inhibit that) 3. There seems less chance of infection at site.  4. The tie-down time is less 3-4 hours, 3x's a week compared to 6-8 hours every night.  Plus the AV Fistula would be done in the doctor's office(which is right in the hostpital, 2 miles from our house.).  5. The new dialysis center is 18 miles away, too.


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## Bilby (Mar 20, 2008)

Okay a couple of points about Jim's thoughts.
1. Don't see why any method should impact his riding ability!
2. If you have a fistula or an AV graft, lifting with the arm it is installed in may not be permitted.  You can't afford to stuff it up as this is your access point to health and removal of fluid and toxins.  Stuff it up and you are in hospital. Same with the PD catheter.  When you do PD, you get sent boxes of fluid (well we do here) and you need a spare room or similar to store it all.  The boxes contain 24 litres (?) of fluid.  I still had to lug them around at least a little. The delivery man would move them around properly once a month for me but any small moves were mine.  Each bag for me was 6 litres. I needed four of them for a session at the end. My cat weighs 10kgs, who I also needed to lug around at times, like vet trips and getting in at night. (I used to pick him up with my non-AV graft arm when I was doing haemo.)
3. Possibly true but the real thing is more that with PD, any infection of the site is much more dramatic.  Had infections in both accesses.  Blood poisoning is blood poisoning though irrespective of where it hits.
4.  He will be asleep during the night time PD - if he is suitable for it. If doing CAPD with the bags, the time commitment is substantially less.  Think it took me half an hour per bag generally. So that would be two hours a day.  Also, his haemo time may be more than 3-4 hours per session depending on his weight, how well he dialyses, how good his access is, and how much fluid he is carrying. I used to do five hours on a Sunday to counter my life style and didn't have the opportunity to do anything more than the basic four hours on Tuesdays and Thursdays due to work.  Four hours was considered standard here.  A lot of the men did four and a half to five hours per session.  Ignore the location for the installation.  It is only a once off. Or should be.
5.  CAPD is wherever you happen to be that can offer some hygenic facilities. (Although some of the Aborigines in the North West do their CAPD under a tree according to the nursing staff!)  I used to do it in the sick bay at work.  APD is done in bed at home.

There are other issues that need to be considered in making the decision but he has a whole lot of time still to gather the information. Ask if he can sit in with the different dialysis sessions and see what he is up for a bit more.


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## DawnT (Mar 20, 2008)

Jim was told that he would be able to lift with the avf but not have anything lay on it.  Riding the motox bike is alot of muscleing about of the thing, jumping it and lifting if you dump it on the ground. You certainly raise alot of good points and I am going to have Jim talk to the doctor about them tomorrow.  Thank you for the extra brain for thinking.


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## Bilby (Mar 20, 2008)

I used to sleep with my head on my AVF! Right up until it created a natural fistula in my upper arm and then it was like having a baby's heartbeat constantly thumping in my brain!  Found it awkward to lie on my stomach with PD. As to the bike.... well - pass!!!!  Also, swimming was banned with a PD tube and taking a bath was discouraged too.  Everything I know of course is from an Australian perspective. Standards and procedures may differ in the US.  I never got into the comparative research.  Took most of my info from my doctor, the nursing staff, other patients and my brother (a GP).  But if the bike is a HUGE part of Jim's life, it may be the one point that decides choice, provided the choice is truly available. Not everyone is suitable for all types of dialysis.


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## Fisher's Mom (Mar 20, 2008)

It's true - there is no "better" form of dialysis. It really depends upon what suits your hubby's daily routine the best. My daughter was on both. Initially, she was on hemo which she didn't tolerate well. She was small and we had a bad time with the fistulas - they kept clotting off. Also, when you are on the machine, a fair amount of your blood volume is out of your body at any one time. She had trouble maintaining her blood pressure on the machine because of that. Your husband is a grown man so these may not be issues for him. Also, she had to limit her fluids and be much more careful with her diet on hemo than with PD. The up side was that we could go there 4 times a week for treatment and then not deal with dialysis the rest of the time. 

Bilby is right - there are a _lot_ of supplies that get delivered to your house every month for PD. So you need a designated place for it. We only used the machine at night - never did CAPD. Since she was a child, it was fairly easy. The machine has an alarm that will let you know if the tube is kinked or the fluid isn't warm enough or the fluid didn't drain out properly. It allowed her to have more fluids and a little more flexibility in her diet since we were dialysing nightly. We could still take off one night a week, as I recall. For an adult, if you do CAPD, you will be carrying around a belly full of fluid all day, which you _will_ notice. For both types of PD, you will have lots of supplies around, you will be doing dialysis daily for the most part and you will have a tube sticking out of your belly that you need to keep very clean and dry.

Definitely explore both options before you decide. They will probably even put you in touch with some other patients that you can ask questions of, if you wish. Have Jim ask a lot of questions, even if he thinks they are trivial or silly. It's the little things that enrich our lives, so he will want to know how dialysis will impact this.


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## DawnT (Mar 21, 2008)

Thanks you guys, we definately have alot to ask the doctor when we go today!  Of course, I will let you all know how it went, asap.


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## ChefJune (Mar 21, 2008)

Prayers going out, _pronto,_ Ms. Dawn!

I would be consulting a nutritionist immediately to get help for providing him with all the nutrition he needs, as tastily as possible. Once you get the info of what he needs to be eating, come back here and we'll flood you with recipes. 

and good luck!


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## ChefJune (Mar 21, 2008)

DawnT said:


> Thank you Barb, Middie and Suziquzie. Dialysis will keep him going until a kidney can be found. Unfortunately, from what I read the life expectancy for Jim is 8-10 years after transplant. He is only 46. I hope they don't find a kidney. Is that awful?


 
nonononono!  don't say that!  One of my dearest friends has had two kidney transplants.  he did very well for more than 10 years on the first one, and had decided not to seek a second one, since his kids were then grown. However, his oldest child -- his daughter -- insisted she was going to give him one of hers.  He wanted to forbid that, but I and some other saner folks talked him into graciously accepting it.  Everyone is SO glad we'll have Kenny around a good while longer.


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## DawnT (Mar 21, 2008)

Thank you, ChefJune.  That was definately Not one of my more sane moments!!  We are hoping this new doctor will be more helpful and give us much more than the old one did.  Thank you for the prayers and concern, I know it is heartfelt.  Dawn


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## stargazer021 (Mar 21, 2008)

Dawn,

First off, let me say I am sending you a big, warm Michigan  hug.   Secondly,  I agree with other posts who have suggested you consult a dietician.  I've been a nurse for 28 years and I can tell you that nurses & doctors do not have anywhere near the nutrition knowledge that a dietician has.  I might suggest you ask around and see if you can find a dietician in your area who specializes in treating patients with kidney disease.  Maybe you could call the local dialysis center and ask if the have a dietician on staff.  Best of luck to both of you.


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## DawnT (Mar 25, 2008)

Thank you stagazer021, I am waiting to hear from the dietician as I type!


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## DawnT (Mar 25, 2008)

Our meeting with the new kidney doctor went great.  Jim came away from there feeling better about himself, the disease, and his doctor then ever before!  The doctor has ordered an ultrasound, made changes in meds, talked to us like we were people that didn't have a degree in medicine and actually took time to answer questions Jim had, explained what things meant and why he(doc) wanted to try things.  The doctor also asked me how I was doing, if I needed more info in order to help Jim, and set up to talk to a dietician.  What a difference!!


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## Bilby (Mar 25, 2008)

Sounds great!!  Having a good relationship with the doc is critical to good management.  Mine now gives me a peck on the cheek when he sees me.  (Mind you the first time he did it was before the transplant (except for the obligatory Christmas peck of course) and while he hadn't worried me much with his words, THAT had me quite worried!!!)  Good that he is onto the meds straight away. Eye for detail.


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## ljmyers (Mar 25, 2008)

Dawn,

First let me say that you and your husband are in my prayers. Second, I think it is great that you are being so supportive of your husband that you eat only what he can eat but I would suggest you eat some protein. Your body needs it and you could eat the protein while out of his presence so as not to tempt him. If you are not eating any dairy, I do hope that you are you taking a calcium supplement.


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## DawnT (Mar 25, 2008)

ljmyers,  Thank you.  We are both having protein now.  The doctor upped it to 65-75g per day (forgot to mention that in previous post!)  He also told Jim to have 8 oz of milk a day.  I on the other hand could not be without my icecream!!!  One scoop, 2x a week.  :P  Jim has italian ice or a popcicle then.


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## Fisher's Mom (Mar 25, 2008)

Dawn, I am so happy for you and Jim! This is a scary disease and you need to be able to count on your doc to be responsive. You are so smart to keep looking til you found the right doc _before_ Jim might need dialysis. That way if or when the time comes, you will know your doc well and he will know _Jim_ well and ya'll will have confidence in him. And when you get a good dietitian, the diet thing will be much easier.

Do you feel a lot better now? Do you relate well to him? Did you meet his nurse? Here's a hint: take the nurse home baked goodies. She is the person who will find your doc anytime day or night if you need him!


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## DawnT (Mar 25, 2008)

Thanks for the tip!! I'll have to see what she likes and then "go to town"!! Yes, I feel so much better! I can tell you a ton of weight has been lifted off my shoulders. Now all I have to do is sit down with the dietician and hammer out a plan!


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## ChefJune (Mar 25, 2008)

DawnT said:


> Our meeting with the new kidney doctor went great. Jim came away from there feeling better about himself, the disease, and his doctor then ever before! The doctor has ordered an ultrasound, made changes in meds, talked to us like we were people that didn't have a degree in medicine and actually took time to answer questions Jim had, explained what things meant and why he(doc) wanted to try things. The doctor also asked me how I was doing, if I needed more info in order to help Jim, and set up to talk to a dietician. What a difference!!


 
so glad to hear this update.  The right doctor is key, and it sounds like you finally got one.  I can't deal with those who act like you have no right to know what they're doing, or why!  

I know you let out one giant mental "WHEW!"


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## kadesma (Mar 26, 2008)

Fantastic news Dawn,
there is so much that goes on and things that just pop up that it really helps to have a doctor and nurses you KNOW you can count on...Sounds like this new doctor, is more interested in your  DH and helping him than his "ego"  Than really takes a load off your mind and makes life so much easier...If you need  a sounding post, I'm here, hard head and all

kades


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## DawnT (Mar 27, 2008)

Thanks Chef and Kades!!  Jim has his ultrasound today, I told him to smile nice and he told me he was going to stick out his tounge.  He has his sense of humor back!!  WOOHOO!!!


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## Bilby (Mar 29, 2008)

So did they find them okay?  They can never see one of mine which is a bit of a problem as the one they can't see is always the one they want to biopsy!!!  At least the new one they can find by just poking me in the guts!!  Mind you the scar kind of gives them an idea of the location!  Also, the new one is 15cm long so I guess it is less difficult for them to "lose"!!LOL


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## DawnT (Apr 1, 2008)

Bilby,  I'm not sure they found them or not, but I am going to assume they did as we didn't get any phone calls otherwise!!


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## DawnT (Apr 2, 2008)

Got a call from the Doctor that everything was okay with the ultrasound.  Nothing abnormal (other than Jim's wife! LOL).  Jim's BP is now back to normal also!!


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## kadesma (Apr 2, 2008)

DawnT said:


> Got a call from the Doctor that everything was okay with the ultrasound.  Nothing abnormal (other than Jim's wife! LOL).  Jim's BP is now back to normal also!!


That is great, now just relax and let yourself enjoy some time without this hanging over you...You are doing great, so is Jim..Things have a way of working out..Sometimes not just as we would like, but there is always another way for us..Look for the good and kick the troubles to the curb...
kadesma


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## Bilby (Apr 3, 2008)

Well said Kadesma!!  and one huge DITTO!!! LOL


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## DawnT (Apr 3, 2008)

Thank You!!!  All of you that have stood (or sat) beside me through all of my ranting and raving I just wanted to say, Thank you.  Without your support, encouragement, prayers and well wishes I would have gone insane long ago!!


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## quicksilver (May 31, 2008)

*     DawnT, just looking over old threads.*

*Was wondering how DH is? Well and good, as are you I hope?*


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## DawnT (Jun 4, 2008)

quicksilver, thanks for asking.  We are all doing good.  DH is busy with everything he can possibly do outside, feeling like the "man" he did before.  We go back to the Drs. on the 20th to see what he thinks, but I know DH is definately feeling great and that is what counts.  I feel as well as DH feels!!  ;>)


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## LadyCook61 (Jun 4, 2008)

Dawn, that is good news.


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## DawnT (Jun 13, 2008)

Today he goes to a second opinion DR.  He is by himself as I have to work.  :>(  He has been complaining about his calves swelling if his socks are slightly tight at all, so I hope he remembers to ask/let this DR know about this.  Otherwise nothing has changed, he still feels like "the man".  :>)  Dawn


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## csalt (Jun 13, 2008)

DawnT said:


> Okay, so my son; who turns 21 tomorrow, just told me that if his blood type matches his dad's he is going to give him his kidney. I told him the odds were against that happening but he is calling his Dr. and setting up testing to screen for the disease, see if he is fit enough etc. I threatened to take away his birthday but he just laughed and said that would give dad 2 for the price of 1!! The brat. I don't know whether to laugh or cry. He is as stubborn as an a** ( probably gets it from me). I'm going crazy here!! And I don't have a rubber room. *:>( *Dawn


 

Reading this about your son brought tears to my eyes. You must be so proud of him.
Try to stand back and let him do what he feels he should even though it's causing you such anguish.
"Let go and let God" sounds such a hackneyed phrase sometimes but it is true.
You're not alone in this Dawn, remember that.
Sometimes I think that DC ers are bound together by suffering just as much as by joy.
By the way, I am *green with envy* at your weight loss*. *


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## DawnT (Aug 10, 2008)

*Update*

Just an update; Jim goes Wed. for his fistula surgery. He went to the vascular specialist Fri. for a consultation and comes home to tell me that!!  His kidney function is down to 18% now and he has to be ready for dialysis.  The specialist did say that if one of the kids is a match that he may only have to have dialysis for a few weeks, so that is something to look forward to.  Please keep Jim, the surgeon, and a donor in your prayers.  Dawn

P.S.  Pray for my sanity while I take care of my grandchildren and Jim!!


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## texasgirl (Aug 10, 2008)

My prayers are with you and Jim!!


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## quicksilver (Aug 10, 2008)

I'm sorry to hear your update. Of course you and all your loved ones will be in my prayers.                                 
Just deal with today, today.                                         


​


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## kadesma (Aug 10, 2008)

Dawn,
from one who knows what is in store, relax and just be there..He will make it. I see he   has chosen hemo dialyisis  ..it worked well for me and  I am fine with the pd that I do now...I wis h you both the very best..Know you are in my prayers and thoughts..Keep us up to date if you have time..It's work but you can do it.

kadesma


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## kitchenelf (Aug 10, 2008)

Awwwwwwwwwww Dawn - you have my prayers, Jim and his whole health care team have my prayers, as well as the donor.  Wrap your arms around yourself and squeeze tight - that's from me!


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## DawnT (Aug 11, 2008)

Thank you *so* much everyone.  With everything going on I probably won't be able to get online much, but will keep you posted.  Our #2 daughter has a new job, nights M - S  12 hrs.  I keep the grandchildren overnight from 1:30 pm til 7:30 am, M-F. She picks them up on Sat. as she only works 8 hrs. I usually get up at 4:30 am and get to bed around 10:00 pm needless to say, I am about exhausted after bathtime( theirs) and usually don't get time to myself til Sunday and Monday morning. I promise I will try to keep you in the loop as much as possible, as long as I don't go loopy
Dawn


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## ChefJune (Aug 11, 2008)

..sending you hugs, Dawn, as well as strength and prayers.


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## DawnT (Aug 11, 2008)

Thank you ChefJune.  Surgery is at 8:00am!  Prayers will be greatly appreciated.
Dawn :>)


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## Bilby (Aug 12, 2008)

Thinking of you both Dawn.  

Regarding the swelling of Jim's legs, put a pillow at the end of the bed for his feet to be slightly elevated.  It helps a little, obviously not as much as just staying off of them.  The dialysis and the fluid tablets will help relieve the swelling heaps. He will probably find that they feel more swollen the day he dialyses and he will benefit from having looser clothing (shoes/socks especially) for those days. Also cut back even further on salt especially the hidden salts, as they promote swelling.

Good  luck.  I've emailed you further. Take care.


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## quicksilver (Aug 12, 2008)

DawnT said:


> Thank you *so* much everyone. With everything going on I probably won't be able to get online much, but will keep you posted. Our #2 daughter has a new job, nights M - S 12 hrs. I keep the grandchildren overnight from 1:30 pm til 7:30 am, M-F. She picks them up on Sat. as she only works 8 hrs. I usually get up at 4:30 am and get to bed around 10:00 pm needless to say, I am about exhausted after bathtime( theirs) and usually don't get time to myself til Sunday and Monday morning. I promise I will try to keep you in the loop as much as possible, as long as I don't go loopy
> Dawn


 
Dawn, more important than anything, take care of yourself. Eat light and healthy, often, keep hydrated, take stolen, short naps when you can, walk when you can to keep your heart and circulation up, and once a day, find 5 minutes - more if you can, to just be with yourself, - quiet time. Deep breathe, and let it out, and just relax your muscles. You'll feel your shoulder muscles come down, uncross your legs, and your ankles and feet will relax.
Talk to us when you need to. There's alway someone here to give you an ear & support.


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## DawnT (Aug 14, 2008)

*It wasn't easy!*

Well, it wasn't a picnic I can tell you that right off the bat.  We got there at 6:45 am. and sat around for an hour.  They took Jim out to get changed, get vitals, etc. and then came and got me.  Oops, some how the lab forgot to check his electrolites, have to wait for a tech - no you can't draw from that arm - he is to have blood drawn from the back of his hand.  Tech has to get another tech, finally we have blood!!  Wait for 1/2 hour (stat you know).  Bye honey, I'll see you in a hour!  Yea, right!  Three and a half hours later!!  Unknown to myself and my daughter, Jim's surgery did not go as planned.  When the surgeon started it was with the understanding that the fistula was to be in his wrist, but his vein was too small.  Okay, sew that site up and move up the arm to the bicep!!  So my poor Jim has a bandaged arm from wrist to shoulder.  On the good note he is home resting in our bed; the bad note is he is out of work for the next week at least- oh well, I'll deal!!


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## LEFSElover (Aug 14, 2008)

I am sorry to hear this and am just now seeing it.

Watching television about 2 months ago, they did a segment on kidneys. I listened due to my own struggles with my kidneys.  Also watched due to a certain person in here that has suffered no end with her kidney ailments.

I was shocked to hear them say that 38% of the American population suffers with kidney disease of some extent.

I will be praying for you and your husband that all gets on the mend and in perfect timing.  Bless you and yours...

Just prayed first prayer, and will continue


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## quicksilver (Aug 14, 2008)

DawnT said:


> Well, it wasn't a picnic I can tell you that right off the bat. We got there at 6:45 am. and sat around for an hour. They took Jim out to get changed, get vitals, etc. and then came and got me. Oops, some how the lab forgot to check his electrolites, have to wait for a tech - no you can't draw from that arm - he is to have blood drawn from the back of his hand. Tech has to get another tech, finally we have blood!! Wait for 1/2 hour (stat you know). Bye honey, I'll see you in a hour! Yea, right! Three and a half hours later!! Unknown to myself and my daughter, Jim's surgery did not go as planned. When the surgeon started it was with the understanding that the fistula was to be in his wrist, but his vein was too small. Okay, sew that site up and move up the arm to the bicep!! So my poor Jim has a bandaged arm from wrist to shoulder. On the good note he is home resting in our bed; the bad note is he is out of work for the next week at least- oh well, I'll deal!!


 
_Dawn, these thing are always so emotionally draining, and nothing seems to go as planned or quickly, but hang in there. _
_All of us have you, both in our prayers.                     _


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## ChefJune (Aug 14, 2008)

Thanks for the update, Dawn.  Prayers continuing....  everything is going to be fine.  and when you need to gripe, we're here.


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## kadesma (Aug 14, 2008)

Dawn,
there will be days that will leave you bug eyed..But once you get a routine and DH can and should pitch in and help, things will smooth out. It's taken my DH a long time to realize that hey my wife knows how to tie her shoes I don't have to, hey my wife knows when to go to bed I don't need to tell her..Hey my wife can feed herself I don't have to cut her meat.. It takes time Dawn don't run yourself into the ground..find 5 minutes for you..I have found DH is spending a lot more time with me than when we were both working, now when we go shopping we do it together and we hold hands..I figured those days were past!!! There is a lot I can say on what is to come but that will be between you and me in private if you need some help..Right now just enjoy having him home and this part being over..Chin UP you can do this and all of us will help all we can
kades


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## Bilby (Aug 15, 2008)

Hey Dawn!  Know this scenario well.  They were to put a fistula in my wrist too but my veins are too skinny (only thing that is I might add!!!!!) so they put a graft (plastic tube) in instead.  Only thing is, they had to put it in reverse to normal - which confused the dialysis nurses at first no end!! My graft went from the wrist to the elbow. Took quite a while for the swelling to go down and about six weeks before they could needle it.  At least the worst is over for now and Jim isn't an acute patient, which means things are done with a bit of time to heal and adjust to things.  Hang in there Dawn.


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## LEFSElover (Aug 16, 2008)

DawnT said:


> Got a call from the Doctor that everything was okay with the ultrasound.  Nothing abnormal (other than Jim's wife! LOL).  Jim's BP is now back to normal also!!


that's some mighty good news


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## DawnT (Aug 17, 2008)

Thank you for the support. I'll definately need alot of it in the week to come!! Jim's arm looks awful, all swelled and bruised.  Good thing he keeps it covered or someone would think I beat him!  He is still in alot of pain, though it could be that he tried to do too much work on the motorcycle.  I did step in and help when I caught him at it.  My fingers are alot smaller than his, especially now!!!  His primary doctor called and said his blood count is low, he has to go back this week and have more blood drawn, not his favorite thing lately.  Did you know he is the first one in our hospital to have this procedure done?  He certainly was the nurses favorite!!  They liked the "bee" under the skin bit!!!  I have been thinking about being tested as a donor for Jim myself, I haven't told him yet though.  Just thought I would find out first and if I match, SURPRISE!!!  What do you think?  He really doesn't want our kids to give one of theirs so I figure why not mine and then down the road they can give one.That way he'll be way to old to fight with them.


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## kadesma (Aug 17, 2008)

Be tested Dawn, just don't let him be so strict that he refuses one of the kids..This is not a game, it's life or death so if a donor turns up you grab ait and say thank you GOD..But yes go be tested and if you match then that is what is to be...I wish you both the very best...
kadesma


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## Lynd (Aug 18, 2008)

Hope everything is going well, Dawn.


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## Bilby (Aug 18, 2008)

Ditto to Kadesma.  I do understand about the not wanting family to donate though.  I didn't want my brother to donate as he has three little girls and his wife (the kids mother) has a different blood group to them.  I want him to have one for them if one of them needs it. You never know what life brings.  My cousin suggested arranging the extended family for testing but at the time, i thought it was a little drastic.  If I hadn't been able to get a donor one and got desperate, I would have hoped someone would offer to be tested. Not sure if i would have asked though.  And yes, I would get tested if it was my husband too BUT it is still a big undertaking Dawn to do so be comfortable with the concept BEFORE you get tested.  If you decide that you weren't comfortable with the operation, or only having one kidney, etc, then you are best not to be tested, cos if you were a good match but didn't want to do it, you wouldn't feel good.  And while the instinct is to look after those you love (and in this case by donating a kidney), there are other factors to consider on a personal level that should not and cannot be discounted.  We all have self, even if we are generous with it.

It is complicated. And Jim really shouldn't say no to any opportunities that present themselves.  It is a lot easier to say no when death isn't the option.  Both of you need to keep an open mind.

Take care.


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## DawnT (Aug 18, 2008)

I have wanted to since the beginning, just not sure what Jim would say. Since I still outweigh him, I guess he would have no choice in the matter if we match!!  Mentally and physically I am up for it, so I guess the next step is to go to the hospital in Rochester and "get r dun".  Just don't tell Jim, it will be our secret until the results are in!!


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## Maidrite (Aug 18, 2008)

May GOD be with you both and your children through everything.

 Love and Hugs James


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## DawnT (Aug 25, 2008)

Friday was not a good day all around.  Jim went to the surgeon, expecting to get his stitches out. Not until next week, but "things look great."  What!?!  He can't straighten his arm all the way, and then we find out he is anemic!!  So, he takes iron pills, dr. prescribed vitamins, and is to get a shot once a week to build up his bone marrow. But wait!!  The insurance company needs to decide *if* the shot is neccesary!?!  So now I have to call the phamacy to see if he can get the meds so he can get the shots, call the drs. office to see if the nurse will be there at 4:40 when he gets out of work ( he went back today), and then call him and let him know.  Oh, then of course there is the fact of the headaches he has had since the surgery, he now has to take tylenol w/codiene.  Of course, he feels great then!! I just don't dare let him out of my sight then*. AARRGGHHHH*!!!!  Please  keep your  prayers  coming.


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## Barbara L (Aug 25, 2008)

I will continue to pray for Jim and the whole family.  You have all been through so much.

Barbara


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## kadesma (Aug 25, 2008)

DawnT said:


> Friday was not a good day all around.  Jim went to the surgeon, expecting to get his stitches out. Not until next week, but "things look great."  What!?!  He can't straighten his arm all the way, and then we find out he is anemic!!  So, he takes iron pills, dr. prescribed vitamins, and is to get a shot once a week to build up his bone marrow. But wait!!  The insurance company needs to decide *if* the shot is neccesary!?!  So now I have to call the phamacy to see if he can get the meds so he can get the shots, call the drs. office to see if the nurse will be there at 4:40 when he gets out of work ( he went back today), and then call him and let him know.  Oh, then of course there is the fact of the headaches he has had since the surgery, he now has to take tylenol w/codiene.  Of course, he feels great then!! I just don't dare let him out of my sight then*. AARRGGHHHH*!!!!  Please  keep your  prayers  coming.


Dawn the anemia comes with the loss of kidney funtion,,I not only get those shots and YES we do need them and they cost a bundle, but they help build red blood cells..I get them every two week, plus I now have to get either an injection or an IV of iron cuz those pills just don't get it..
soo don't get discouraged, things will be okay..If anyone wants to be tested for kidney transplant for Jim, welcome them with open arms..That will change his life no end...Talk to Bilby she can really give you the scoop.Hang in there girlfriend I'm here if you need me
kades


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## DawnT (Aug 25, 2008)

Thank you both.  E-Gads!!  What am I thinking, going back to work full time and taking care of the grandchildren at night?!?!  I must be looking for sainthood, and I'm not even Catholic!!!  It's either that or the insanity card, and I think I'll opt for St. Dawn.  ;>p


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## Bilby (Aug 27, 2008)

Ahh, Dawn!  You can't keep your name unless it was something like Mary.  You'll have to become St Aurora instead, and just remain Dawn to your friends!!! LOL

I've already emailed you re the shots.  When Jim starts haemo, they may inject it thru the machine.  Depends on the staff and which set of theories they are working to at the time.  The EPO shots in the arm sting if they don't get them to room temp first! Much better when they switched to putting it thru the tubes when the blood is being cleaned!  I am now down to having Aranesp injections every six weeks - and that is nearly 22 months after having the transplant!  My arm is tough now and I seldom notice the injections!

Used to get the iron thru the machine too. Never had to take the tablets.  I also never let the med staff see me being weak unless I was already hospitalised.  Too hard if they thought I was unwell. Easier for me to just ignore it and keep on keeping on.  Anything to keep out of hospital.


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## DawnT (Aug 28, 2008)

ARRGGGH!! Still no shots for Jim as the insurance co. has yet to approve them?!?!  He went to the Dentist yesterday to have a filling fixed(fell out) and was told tat since he has the fistula and it is not totally healed yet he has to take an antibiotic 1 hour before his appointments!!  Not to mention we spent Tuesday evening in the ER because of his shortness of breath and tightness in his chest.  Everything was ok, Thank GOD!  Of course the ER staff couldn't understand why we would not accept a blood transfussion for his severe anemia, even after we told them!?!@#*@#!!!


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## kadesma (Aug 28, 2008)

Dawn,
I'm so sorry about the ER fiasco, I had it too when my kidneys failed last year...WE now had to pay a thousand dollar for the epo injections as the Insurance company felt I didn't need them  and nothing we can say or do would change it..So I just paid the bill..Now I'm taking more shots but a different one I think Bilby mentioned it...So far no one is banging on the door for money..But if it were me, I'd be on their doorstep making so much noise, well you get the picture..I also have to get an IV for the iron as the injection when given cause a taste like maple in my mouth which makes me sick sooo..We now give them( the red blood cell helper) at home the center  provides them.  Does K 
Jim have a dialysis center? If so, use them for everything...They get things done so much quicker than an ER.. Again, I"m so sorry hang in there..Once he is healed it gets easier...
kadesma


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## Bilby (Sep 3, 2008)

Dawn, whenever I went to the dentist after KF, I had to take an AB prior to going. Can't afford any infections. Teeth infections can go straight to the kidneys.

Every worker in Australia that pays tax has to pay an extra levy for Medicare which allows everyone to go to any public hospital in the country for treatment at no extra cost. We also have a Pharmeceutical Benefits Scheme that reduces the cost of the drugs to the general populace, and after you spend $x in a calendar year, the medications are further reduced. This means that I EPO for nothing while an in-patient and $25 (per shot) (current prices) while getting it thru the dialysis clinics. When I went over to Aranesp injections, they too are $25 each. As I spent more than the PBS threshold in about May this year, my scripted medications are all $5 each. If I was then to spend more than $1500 (?) for the year, I can then claim a further 1% deduction when I submit my tax return for the year.

We all complain about Medicare and PBS but reading your post and Kadesma's, I think we have it pretty good!! I wouldn't have been able to have lasted as long as I did on my own on dialysis if I didn't have the shots.

Hang in there.


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## DawnT (Sep 6, 2008)

Hurray!!  Insurance came through!  They approved 26 shots, and paid 85% of the costs.  The first shipment came to our house this am in time for Jim to get it down to the Drs. office and get shot in the arm.  Funny, he said it didn't hurt; must be the relief of finally getting it!!  Right now he and DS are down working on the dozer - priorities you know! LOL  Thank you everyone for your prayers and encouragement, now I just need prayers that the transplant center will contact us as to when Jim can begin evaluation!!!  Dawn  :>)


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## quicksilver (Sep 6, 2008)

So glad to hear some good news. Fingers, toes and eyes crossed, DT. Prayers to you both, too.


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## smoke king (Sep 7, 2008)

Dawn, Both you and Jim are in my prayers. God Bless you.


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## DawnT (Sep 13, 2008)

Thank you everyone.  Jim is feeling soo much better now, it's so nice to see him come home from work and actually want to do something other than sit and fall asleep!!  Thank you again for all your prayers, please keep them coming as we wait for the evaluation and testings to begin!!  Dawn  :>)


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## quicksilver (Sep 14, 2008)

I'm still with you both, Dawn. I admire both of your strength. Together you conquer!


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## Bilby (Sep 15, 2008)

Great news Dawn!  Still thinking of you both.


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## kadesma (Sep 15, 2008)

DawnT said:


> Thank you everyone.  Jim is feeling soo much better now, it's so nice to see him come home from work and actually want to do something other than sit and fall asleep!!  Thank you again for all your prayers, please keep them coming as we wait for the evaluation and testings to begin!!  Dawn  :>)


The payers and good thoughts continue..Just stay well and know we all are thinking of you all.
kadesma


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## CharlieD (Sep 15, 2008)

My prayers go out to both of you, guys, as you need strenth to help him. Hope he get's better.


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## DawnT (Sep 16, 2008)

Thank you ALL!!  The hospital called today, they had a few questions.  The coordinator is to call within the next few days to set up for evaluation!!  WOOHOO!!


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## quicksilver (Sep 17, 2008)

Dawn, thanks for the update. What a seesaw you've all been through. I pray all goes well. Things sometimes do when you least expect it.


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## DawnT (Sep 18, 2008)

October 6 is the first part of the evaluation!!   *YIPPEE!!!!*


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## Bilby (Sep 18, 2008)

Great!!! That is soooo close!!! Good luck!!


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## Barbara L (Sep 18, 2008)

That's good to hear Dawn!  Still praying!

Barbara


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## kadesma (Sep 18, 2008)

Wonderful Dawn,
you're on your way..Prayers continue and with a big smile this time.
kades


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## DawnT (Oct 12, 2008)

Just an update to let everyone know how things went Monday.  Jim is a viable canidate for transplant!!  DD#1 and I had our blood drawn and will find out tomorrow whether or not we are donor canidate possibilities.  We all went to this appointment thinking about the enourmous cost of everything only to find out we were only out-of-pocket for parking and lunch.  Thank you Kidney Acquisition Fund!!!  Now we only have to wait for Jim to recover from hernia surgery (the 15th), before the kidney transplant team will begin thoughts of transplant.  Such is life on the mountain overlooking Dansville!!   Thank you for all your prayers, please continue to help us. 
Dawn T


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## kadesma (Oct 12, 2008)

I'm here and so happy for all of you...Just think how wonderful life will be once that transplant is in there and working..Life will be far more normal and rich..Prayers and good thoughts still circling all of you.
kades


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## Barbara L (Oct 13, 2008)

I'm glad you were able to report such good news.  You can count on our continued prayers.  

Barbara


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## MexicoKaren (Oct 13, 2008)

Dawn, I'm not stopping in here as much these days (lots of irons in the fire),but it is so nice to check in and find out that things are progressing for you and Jim. You have all my hopes and wishes that things will continue to go well.


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## Fisher's Mom (Oct 13, 2008)

WooHoo, Dawn! What fantastic news! I'm so glad to hear your hubby won't have years of dialysis ahead of him. Be sure and let us know which one of you gets to do the honors.


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## Bilby (Oct 13, 2008)

It would be so good if you are a match Dawn!  Hope the good news continues. I am a month short of my second anniversary for my transplant and despite all the hiccups along the way and a few other things, it is still better than dialysing and being on a fluid restriction!


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## quicksilver (Oct 13, 2008)

Dawn, thank God. I'm so glad to hear your good news. Continued prayers for you and yours.


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## DawnT (Nov 11, 2008)

*I really want to stop playing this game, it's no fun!!*  Please, let me explain.  First, DD is a match.  Three out of six chromosomes matched Daddy's.  She has gone through all the hoops and come out the other side with colors blazing!! All the transplant team has to do is decide which kidney to take.  JIm on the other hand...  The hernia surgery turned into an overnight for him because of pain issues.  He has been off work for 5 weeks now(this is me!).  Thursday I found out that he would start dialysis today.  Guess what!?!?!  The Director of the Dialysis Center blew Jim's fistula while unhooking him!!  OOH it gets better!  Tomorrow, I get to take Jim in for surgery, he gets to have a catheter put in his neck!!  Could this game get any better?!?!  Right now he can't lift his arm without pain, it has swollen to three times it's normal size and he has to keep ice on it.  Plus to further add to the fun, I have to measure his arm every half hour to see if it is still growing.  If it gets any bigger, back to the hospital to possibly lance it to release fluids.  *Fun, wow!!*


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## kadesma (Nov 11, 2008)

Dawn, don't panic, I had the one put in my neck and it was fairly quick and easy..I didn't have anything for it but a little injectionand then it went in..The only thing is it reminded me of when you stitch up a chicken how hard the skin is.  It's more sound than anything.I used this access til I got my PD cath and let me tell you of the two, I'd take the neck one any day. As to the mess they made of his arm, I'd have someones head on a plate..I know these things happen but gee whiz if you don't know what your doing get the heck out of there and let someone who does..The one in his neck will have two small tubes that hang down several inches and will be wrapped and cleaned each session..When the time come and the transplant is a success they can remove the access with out any problems they give you  an injection  and  it's out fairly quickly..then I just went home and kept gauze over it til the skin grew over the hole and now i can just see a small skin color change.. I 's so sorry this happened to Jim, don't get discouraged when he gets that transplant life will be p[erfect.
hugs to you all and one big one to your DD.
kadesma


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## DawnT (Nov 11, 2008)

Thank you Kades.  If I hug Tara anymore people will think she's abused!!  Especially after Jim's arm starts to turn!?!  I think I need some place to hide til the heat is off!!


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## quicksilver (Nov 11, 2008)

Oh Dawn, I'm so sorry for more complications. I thought we hadn't heard anything recently.
You all have suffered enough, already. But that you are all close is what matters most. {{hugs and prayers}} as always.


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## expatgirl (Nov 11, 2008)

I just went to the end of this thread so I don't know what's been posted..........prayers coming your way Dawn and I'm so sorry to hear about your hubby's kidney problems......if worse comes to worse and it's necessary maybe he would be qualified to get a transplant...........perhaps a family member..........you will be in my  prayers........don't know if transplant has been discussed as I zoomed to the end........


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## kadesma (Nov 11, 2008)

expatgirl said:


> I just went to the end of this thread so I don't know what's been posted..........prayers coming your way Dawn and I'm so sorry to hear about your hubby's kidney problems......if worse comes to worse and it's necessary maybe he would be qualified to get a transplant...........perhaps a family member..........you will be in my  prayers........don't know if transplant has been discussed as I zoomed to the end........


Deb, he has been ok'd for a transplant and daughter is a good match..it's just that the tech blew  the access in his arm and now he has to get a temp one in his neck or collar bone area..I just was telling Dawn I'd had that and it was great and easy to put in and take our just an injection to numb  you and the worst of it was the sound as they put it in...Once his arm heals they can go ahead with the transplant...  My only concern is if he was told that that fistula in his arm will always be there, they will not remove them.. Which I can see why but you need to be told ahead of time..People don't know what to ask at that stage, your to busy wondering how this all happened to you .

Nuts, I hope all goes well now
kadesl


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## LEFSElover (Nov 11, 2008)

reading this for the first time, just prayed for you and your husband.
these kidneys are so very important to our health and lifestyle and with so many kidney diseases, so many are suffering.
I myself am one of those.

be well and your husband too.


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## DawnT (Nov 12, 2008)

Thank you all, I just had to check in here for a dose of sanity!!! Lately life has been a funny farm, and I just can't seem to laugh.


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## LEFSElover (Nov 12, 2008)

I just prayed for you and your family, please, let one smile in, it helps heal the heart..........


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## MexicoKaren (Nov 14, 2008)

Dawn, I haven't been very active lately, and just came back to find that your troubles continue. I would not presume to say that I know how you feel, but thank goodness there are kind and loving people here who can give you good advice and sound guidance. I pray that you are heading toward the light at the end of the long dark tunnel you have been traveling through, and hope that you are being kind to yourself....I do know that providing so much emotional support to the rest of your family is exhausting, so please cut yourself a little slack and go pull the covers over your head for awhile if you need to.


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## Bilby (Dec 11, 2008)

Hi Dawn.  Haven't been around for a while. Think I emailed you at the time but wouldn't swear to it.  Hope all is now well.  I have so many of those Hickman lines in my jugulars that I have lost track!!  A small word of warning to you though to make sure they are removed professionally.  My left jugular collapsed after one was removed years ago.  No real consequence in one sense other than my left side of my body now looks a bit like a relief map, with my veins subbing for rivers!  The problem I have is only if my other jugular is obstructed but I just keep more of an eye on that one. Should the jugular collapse, I would recommend going straight to a surgeon to have a stent installed (or whatever). It is a quick and easy fix to do it early but a huge task to do later on - like my situation.  

Fistulas get blown a lot.  Sometimes it is poor technique, sometimes it's just one of those things.

Do you have a transplant date fixed yet?


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## DawnT (Dec 16, 2008)

Sorry I haven't been around much lately, it's been crazy between home and school.  We go to talk to the surgical team on the 18th of this month to see when in January the surgery will be.  Now all I have to do is get through the holidays without too much happening.  Jim is doing much better with dialysis now that they have him regulated.  No headaches or vomiting, and can drive himself there and go to work afterwards.  His job has been very supportive, along with mine.  We are both very blessed.  

I hope everyone in my DC family is and will be as blessed as my family and I am this year and next.   Hugs and Kisses, Prayers and Best Wishes,  Dawn T  :>)


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## ChefJune (Dec 16, 2008)

OMG!  I just logged in to check this thread and found all these complications!

still more prayers coming your way, Dawn, and hopes for a better 2009... a _healthy_ one!


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## PieSusan (Dec 16, 2008)

Dawn, best wishes and prayers to you and yours. Illness is one of the hardest things to cope with. May G-d give you strength.


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## kadesma (Dec 17, 2008)

DawnT said:


> Sorry I haven't been around much lately, it's been crazy between home and school.  We go to talk to the surgical team on the 18th of this month to see when in January the surgery will be.  Now all I have to do is get through the holidays without too much happening.  Jim is doing much better with dialysis now that they have him regulated.  No headaches or vomiting, and can drive himself there and go to work afterwards.  His job has been very supportive, along with mine.  We are both very blessed.
> 
> I hope everyone in my DC family is and will be as blessed as my family and I am this year and next.   Hugs and Kisses, Prayers and Best Wishes,  Dawn T  :>)


Dawn,
you have all my prayers and good thoughts for the future. May this holiday season bring you all HOPE for the future and all good things..Please let us know how things are going.We all care and wish you only the very best.
kadesma


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## DawnT (Dec 17, 2008)

Thank you all.  My wish is for a joyful, healthful year for all my DC family, as well as my family here with me in windy NY.  I will definately keep you all posted on Jim's progress.  Dawn


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## Bilby (Dec 20, 2008)

glad dialysis is working for Jim.  I quite enjoyed it once I settled into it.  Looking forward to hearing how the meeting went.  

Have a good Chrissy, Dawn.


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## DawnT (Jan 3, 2009)

Hi There!!  Sorry about not being around much, life keeps getting it's body in the way of what I want to do.  Jim's surgery is set for the 3rd of February.  That is *one month* away!!  Both he and DD have to go the week before for pre-op stuff and another round of blood work, to see if they are still compatable.  We are in *count down!!*  Meanwhile I have been trying to help my other DD deal with depression and unemployment.  When it rains it pours!  She is the one that is a single mom with the 2 children, and boy they can be a handful.  Now she is telling me she wants to take the kids and go to Australia when she gets her taxes back!!  She has some friends in Queensland that she wants to go see*.  Hello, am I not seeing something*? No offense Bilby, but she hasn't worked since October 17, is falling behind on the mortgage and wants to travel out of counrty!?!?!?  To top it off, the kids are 4 and 2, not a very good age to travel with.  ARRGGG!!  Get your body out of my way LIFE!!!


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## ChefJune (Jan 3, 2009)

Oh my, Dawn!  Sounds like you need at least a hug.  I'm sending loads.

and I'll continue praying that all will go well for Jim and your donor daughter with the surgery.  I have a good feeling about that.

sounds like your other daughter needs a reality check.  Is she thinking she can just take her kids and "disappear" to Australia?  Sounds like she could use a discussion group with other like-situation women to help her get a grip on reality. We all know how hard it is to be the mom with a good idea.... 

I'll be thinking about you all and praying hard.


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## Bilby (Jan 4, 2009)

Good luck Dawn (Jim and DD) with the op.  Tell him to take all the drugs they offer at first but to stop them as soon as he can as well.  He should bounce back pretty quickly though as he hasn't been needing dialysis for very long.

As to your other DD escaping to Qld!  Being a Perth girl, I would never advocate such a move!!  (Only Joking to you Queenslanders out there!!!)  Things might be better in Australia than where she is at the moment but life without family support - anywhere - is tough.  And there is no guarantee that things will be any better here for her than where she is now.  Problems can get on a Boeing just as easily as a person can.  And if nothing else works, show her the newspaper articles on the flash flooding and cyclones Queensland has to offer!!  Good luck!


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## DawnT (Jan 31, 2009)

Surgery is at 2:00p.m. Tuesday,Feb 3.  Of course we are supposed to get hit with a storm!!  I hate winter and driving in the city - put them together and I am already a nervous wreck!!  Jim is going to drive us up in the 4-wheel drive truck, my DS is coming up with my mom at 3:00 in her 4-wheel drive jeep, and I don't know how many others are coming.  The problem is I don't know if I want all of them, other than my DS there.  I do love them but some of them just ask to many questions and if you don't have the answer, they ask it again, in a different way, over and over...!  Oh Lord, give me patience, and good driving weather!!


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## ChefJune (Jan 31, 2009)

will be putting you all on the top of my prayer list, Dawn.

try not to worry before the fact.  Weather-wise, Tuesday is a long way off.  

hugs....


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## licia (Jan 31, 2009)

I, too, haven't been keeping up with things here lately. Dawn, I will surely pray for your husband and daughter as well as you, as all the surgery and recovery take place. I wouldn't worry about those asking questions - just tell the you don't know and will tell them (what you want them to know) when you know.


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## kadesma (Jan 31, 2009)

DawnT said:


> Surgery is at 2:00p.m. Tuesday,Feb 3.  Of course we are supposed to get hit with a storm!!  I hate winter and driving in the city - put them together and I am already a nervous wreck!!  Jim is going to drive us up in the 4-wheel drive truck, my DS is coming up with my mom at 3:00 in her 4-wheel drive jeep, and I don't know how many others are coming.  The problem is I don't know if I want all of them, other than my DS there.  I do love them but some of them just ask to many questions and if you don't have the answer, they ask it again, in a different way, over and over...!  Oh Lord, give me patience, and good driving weather!!


Dawn sweetie, answer what you want to if pressed just tell them you want peace and quiet to pray that everything goes well..That is more important than 20 questions, if they persist get a nurse on the qt and have her ask some of them to leave please...you need to just have who you want there and do not be afraid to throw a fit if need be..Sometimes that is all some of them understand aquiet tap on the arm and a please not now is all they get after that it's heave ho..Good luck and I'll be praying  as usual 
Let us know how they are
kades


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## DawnT (Jan 31, 2009)

Thank you all for the prayers and grace you have shown.  I don't know how I would have gotten through the past year without my DC family!!  I love each and every one of you.  I will keep you posted on their conditions.  Dawn


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## Fisher's Mom (Jan 31, 2009)

DawnT said:


> Surgery is at 2:00p.m. Tuesday,Feb 3.  Of course we are supposed to get hit with a storm!!  I hate winter and driving in the city - put them together and I am already a nervous wreck!!  Jim is going to drive us up in the 4-wheel drive truck, my DS is coming up with my mom at 3:00 in her 4-wheel drive jeep, and I don't know how many others are coming.  The problem is I don't know if I want all of them, other than my DS there.  I do love them but some of them just ask to many questions and if you don't have the answer, they ask it again, in a different way, over and over...!  Oh Lord, give me patience, and good driving weather!!


Oh my gosh, Dawn, I just saw this!!!!! First of all - WooHoo!!!!!! I'm so glad the day is finally here. Give your daughter a big hug for me - she's an inspiration to us all. I'll spend all day Tuesday sending positive healing vibes to Jim and your daughter. And lots of love to you since you'll be running ragged trying to take care of both of them. Let us know as soon as you can how things are going. As far as the rest of the family, try not to let them wear you down (even though they don't mean to.) Maybe you could take an MP3 player, turn it up real loud, and then smile at them like you're actually listening.


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## Barbara L (Feb 1, 2009)

Dawn, I'm so glad the date for the surgery is set.  I pray that the weather is good, and that everything goes perfectly with the surgery and recovery.



kadesma said:


> Dawn sweetie, answer what you want to if pressed just tell them you want peace and quiet to pray that everything goes well..That is more important than 20 questions, if they persist get a nurse on the qt and have her ask some of them to leave please...


I agree!



Fisher's Mom said:


> ...Maybe you could take an MP3 player, turn it up real loud, and then smile at them like you're actually listening.


I love it!

Barbara


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## DawnT (Feb 4, 2009)

Hello Everyone!! Just to let you know, the surgery was a success! Tara came through with flying colors, she is of course in some pain but all in all doing especially well. The doctors said her kidney was the “best” they had ever seen!! Once it was placed into Jim, it took over immediately. Praise God! Both Tara and Jim have wonderful color and body function. Thank you for all your prayers and good wishes, they certainly worked. Hurray!! Now I need to sleep a little bit so I can see both Tara and Jim later today.


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## kadesma (Feb 4, 2009)

DawnT said:


> Hello Everyone!! Just to let you know, the surgery was a success! Tara came through with flying colors, she is of course in some pain but all in all doing especially well. The doctors said her kidney was the “best” they had ever seen!! Once it was placed into Jim, it took over immediately. Praise God! Both Tara and Jim have wonderful color and body function. Thank you for all your prayers and good wishes, they certainly worked. Hurray!! Now I need to sleep a little bit so I can see both Tara and Jim later today.


Sleep and rest easy Dawn, I'm so happy for you. See all those worries are gone now and your DH and DD are just fine..Think how wonderful your DD feels giving a lease on life to her dad..How lucky they both are and you too..I admire families like yours who dig in and do anything in the world for each other..Big warm hugs to all of you
kades


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## ChefJune (Feb 4, 2009)

DawnT said:


> Hello Everyone!! Just to let you know, the surgery was a success! Tara came through with flying colors, she is of course in some pain but all in all doing especially well. The doctors said her kidney was the “best” they had ever seen!! Once it was placed into Jim, it took over immediately. Praise God! Both Tara and Jim have wonderful color and body function. Thank you for all your prayers and good wishes, they certainly worked. Hurray!! Now I need to sleep a little bit so I can see both Tara and Jim later today.



That is super news, Dawn.  Thanks for the update. Now get some zzzz's.


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## expatgirl (Feb 4, 2009)

Great news!!!


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## texasgirl (Feb 4, 2009)

dawn, I am so happy for you and your family that the surgery was a success!! Thankfully he had someone that matched and didn't lay waiting for a donor for years. Bless!!


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## MexicoKaren (Feb 4, 2009)

I am so relieved to hear this good news - you all certainly deserve it! Thanks for keeping us posted, and hope you get some rest! Love to your courageous family!


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## DawnT (Feb 4, 2009)

More news from the hospital.  Tara may get out Thursday!!  She feels a little pain, went to see her daddy, ate and kept it down, and had her (almost) 3 year old son in with her most of the day!!  Jim went for a walk, his color is wonderful, he is using very little pain meds, has read his information booklet on transplantation and wants to walk down to see Tara.  He is also thrilled that there is an almost non-existent dietary limitation!!!  He can have milk and cheese and peanut butter and peas again.  YIPPEE!!  You would think we had won the lottery!!


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## LPBeier (Feb 5, 2009)

Dawn, I am just catching up on this, having some of my own health problems.  I am so thrilled that the transplant went well and they are both coming along great.  My prayers continue for you and your family.


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## Barbara L (Feb 5, 2009)

That's better than the lottery Dawn!  I'm glad things are going so well, and I will keep praying for continuing good news.

Barbara


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## DawnT (Feb 6, 2009)

They may release Jim Saturday.  Tara is still in quite a bit of pain, but tries not to take the pain meds so that she can "work through it".  Jim walked down to her room yesterday and talked to her for an hour and made her see that it was in her best interest to use the meds.  Her room is about 60 - 80 feet from his!!  We have a 2:00 class today for patients and caregivers on everything to expect and the drug regime.


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## MexicoKaren (Feb 6, 2009)

Thanks for the good news, Dawn. It has been a long and difficult journey for you all. Your family is amazingly strong and courageous. You should be proud of them all - including yourself.


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## DawnT (Feb 12, 2009)

All is wonderful!!  First "clinic" went great, after today, Jim will be down to one a week already!! He can drive possibly after next week, and go back to work in two months; as long as he doesn't lift more than 35 pounds.  He is so happy to be able to eat whatever he wants now, he is like a child in a candy store!!  "More peas please!"  Tara is coming along slowly but is on no pain meds now ezcept at bedtime. :>)  The only problem we have is getting the grandson to daycare!!  Thank you so much for all you love and prayers.  They certainly can do miracles!!


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## kadesma (Feb 12, 2009)

DawnT said:


> All is wonderful!!  First "clinic" went great, after today, Jim will be down to one a week already!! He can drive possibly after next week, and go back to work in two months; as long as he doesn't lift more than 35 pounds.  He is so happy to be able to eat whatever he wants now, he is like a child in a candy store!!  "More peas please!"  Tara is coming along slowly but is on no pain meds now ezcept at bedtime. :>)  The only problem we have is getting the grandson to daycare!!  Thank you so much for all you love and prayers.  They certainly can do miracles!!


Wonderful new Dawn, I'm so happy for all of you. Keep us posted on how things are going..Have a wondrful life packed with happiness and love.
kadesma


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## texasgirl (Feb 12, 2009)

DawnT said:


> All is wonderful!!  First "clinic" went great, after today, Jim will be down to one a week already!! He can drive possibly after next week, and go back to work in two months; as long as he doesn't lift more than 35 pounds.  He is so happy to be able to eat whatever he wants now, he is like a child in a candy store!!  "More peas please!"  Tara is coming along slowly but is on no pain meds now ezcept at bedtime. :>)  The only problem we have is getting the grandson to daycare!!  Thank you so much for all you love and prayers.  They certainly can do miracles!!




That is great, Dawn!! Tell your daughter, what a wonderful person she is!! Even though she is your daughter, she didn't have to sacrifice. She did it out of love for her dad and that is more than any of us can ever hope for. Bless her heart!!


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## MexicoKaren (Feb 12, 2009)

Oh Dawn, I am so pleased to hear that everything is going so well. Gosh, what a turnaround for your family. You are all so brave, and richly deserve the good things that are coming your way.


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## DawnT (Feb 14, 2009)

Thank you *ALL*, I am so blessed to have friends such as you.


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## Bilby (Feb 16, 2009)

You know how happy I am for Jim, Dawn and I hope he springs back quickly. If Tara and Jim are anything like me, they will be pushing the limits as soon as they can!!  I got into some strange looking positions so that I could do what I wanted to without damaging my surgery!  The steroids can give you a false sense of ability too - sometimes a good thing, sometimes not!


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## DawnT (Mar 30, 2009)

Just wanted to update all of you.  Tara went back to work on the 18th of March, and Jim went back to work on the 24th with his doctor's blessing.  He is doing so wonderful!!  I know I owe a lot to all of my family here at DC for all of your prayers, so *THANK YOU!!!*  You couldn't begin to imagine how blessed I feel at this time.  My prayers go out to all of you everyday.  Thank you for all the support, words of encouragement and shoulders to cry on.  *Thank you, thank you, thank you. :>)*
Dawn


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## kadesma (Mar 30, 2009)

Hi Dawn,
 it's so good to see you and see how happy you are. I'm happy everything is going so well and life has become more peaceful and calm. Please come visit more often, you've been missed.
kades


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## ChefJune (Mar 31, 2009)

That's wonderful news, Dawn!


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## DawnT (Feb 5, 2010)

Just wanted to drop a quick note.  It's hard to believe, but it has been a whole year since the transplant!!  Everything is going wonderfully, Tara is doing great, and Jim is back to normal; well as normal as one can be on meds for the rest of one's life!  We are back to a very busy life, I am working fulltime, our son is in college fulltime, the "devil dog" is still alive and not so much of a problem and Jim is enjoying the life of leisure currently.  He haas been laid off since October and should go back to work in March, I hope!!  I just want to thank everyone again for all your prayers and words of encouragement during one of the most trying years of my life.  *Thank You!!!*    ;>)


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## Alix (Feb 5, 2010)

Oh Dawn, how lovely to hear from you! I'm so glad life is settling for you and that all is well. Thanks for posting and updating us. Take care and pop in to say hello when you can.


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## kadesma (Feb 5, 2010)

Good to hear from you Dawn. Hope all continues to go well for all of you. You are still in my prayers and thoughts. Take care and great big hugs to all of you.
cj


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## DawnT (Sep 7, 2019)

Update..our oldest daughter gave my DH a kidney 10 yrs ago and it has been a wonderful fit. He is still healthy, on the lowest dosages of drugs to keep him from refusing, our daughter had a baby girl 7 years ago and is very healthy!  Life is good. Thank past friends for prayers, good vibes, positive thoughts and love!


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## GotGarlic (Sep 7, 2019)

DawnT said:


> Update..our oldest daughter gave my DH a kidney 10 yrs ago and it has been a wonderful fit. He is still healthy, on the lowest dosages of drugs to keep him from refusing, our daughter had a baby girl 7 years ago and is very healthy!  Life is good. Thank past friends for prayers, good vibes, positive thoughts and love!



Dawn, it's so great to hear from you and that your DH is doing well! And you have a granddaughter! How wonderful!  I hope you are able to hang around here more and share what's going on with you and your family.


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## dragnlaw (Sep 8, 2019)

Dawn, just read this whole post from start to finish - what an amazing story of hope, courage, determination, love and the support from so many here at DC, more than half of which are new names I'm just coming across.

Best wishes and ongoing happiness to a wonderful family.


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