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Author Topic: I need some encouragement!  (Read 5548 times)
tigtink
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« on: April 27, 2016, 04:28:00 PM »

I try hard not to complain about all the hoops I have to jump through to get on and stay on the transplant list, and I know I am very fortunate to be approaching three years since my fistula surgery and still avoiding dialysis, but this one has me frustrated. In order to get on the U of MI and U of WI lists more than two years ago, I had to lose 20 pounds. I did so and have worked very hard to keep it off. Because of the change in allocation rules, I got bumped down on the list at Madison and will probably have to wait another year and a half there and even longer at MI. There is a very good chance I could get a transplant this year if I get on the list at U of Toledo and transfer my time.

Well, I went yesterday to an orientation at Toledo, and it turns out that not only do they have a rigid BMI standard, there is an even stricter BMI for deceased donor transplant than a living donor transplant: 35 for living donor and 32 for deceased donor. The 35 is no problem for me but for 32 I need to lose an additional 20 pounds on top of what I lost to get on the other lists. That seems so unfair to me. Isn't the surgery essentially the same whether you have a living or deceased donor? What possible medical reason could there be for the lower BMI for a deceased donor? It feels more like a penalty for not having a living donor.

So far my egfr is holding steady at 18% but it dropped to 14% last fall, and that was a big scare for me. I will work as hard as I can to lose the additional weight but it is a huge struggle and a slow process. I'm already going to the gym every day and really restricting my eating just to lose 2 or 3 pounds a month. I was so frustrated yesterday I wanted to walk out of the orientation. They won't even proceed with the listing process until I meet the BMI requirements.

Sorry to vent like this, but the waiting and twists and turns in this process are really stressing me out right now.

Debbie
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Michael Murphy
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« Reply #1 on: April 27, 2016, 04:33:46 PM »

Sucks,  the weight nazis are a pain in the butt.
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PrimeTimer
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« Reply #2 on: April 27, 2016, 06:31:03 PM »

I see TV commercials talking about the importance of organ donation and showing recipients all smiling and leading a "happy normal life". On one hand I like the commercial because it is speaking about the importance of organ donation but on the other, it kind of angers me because they don't show what a recipient must REALLY go through just to be listed, not to mention what they are currently going through and the decisions they have to make in order to stay alive. And that's with or without a transplant. Maybe it's just me but sometimes I think if people really knew what a person on dialysis goes through and the challenges they face each and every day, perhaps more people would truly understand the importance of donating. Perhaps friends and relatives would be a little more understanding and offer encouragement. Hats off to YOU tigtink and to all the rest of you folks, including my own husband, who no matter what, choose to face each day's challenges.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
DialysisGoneFOREVER
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« Reply #3 on: April 27, 2016, 08:04:15 PM »

Tightink, how could you have fistula surgery 3 years ago yet you're NOT using it?? I would think that fistula would no longer be viable if you haven't used it for 3 years!

PrimeTimer, you are SO right! Transplant centers can put you through HELL but then STILL deny you for almost ANY reason! The worst part is you really have no recourse. It's not like you can take them to court or anything!
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kickingandscreaming
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« Reply #4 on: April 28, 2016, 05:42:29 AM »

Quote
Transplant centers can put you through HELL but then STILL deny you for almost ANY reason!

So that's who the REAL "death panels" are!
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
iolaire
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« Reply #5 on: April 28, 2016, 05:47:35 AM »

Tightink, how could you have fistula surgery 3 years ago yet you're NOT using it?? I would think that fistula would no longer be viable if you haven't used it for 3 years!
Mine was put in a few years in advance.  I had to get angioplasty once prior to dialysis and once after start of dialysis.  All that blood pumping through it made it nice a strong/big by the time I needed it.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Charlie B53
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« Reply #6 on: April 28, 2016, 11:30:11 AM »


I've been on PD threee years this month and never tried listing as my Neph had me taking one of the anti-rejection meds in attempt to 'stimulate' my kidney to possibly work a bit better.   Instead it mad3e me DEATHLY ill.   I actually could not get up out of bed.  I swore I was going to die.   At about 10 days I stopped taking that med and within a few days started feeling my usuall rotten self.   I told him if I had to take that med in order to have a TX I would surely die and waste the kidney.  Give it to someone else.

I recently had second thoughts about listing and are just now about to find out what all will be required.   This BMI thing and I are NOT compatible.   I may be close, once I am dead and all my innards are removed.

By then I won't need a kidney.
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DialysisGoneFOREVER
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« Reply #7 on: April 28, 2016, 01:15:45 PM »

But don't you think it's worth it to lose the weight to quit DEPENDING on a machine to live?

Are you saying either Prograf or Cellcept made you deathly ill?? I've never heard that before. Maybe you could look into taking cyclosporine or some other immunosuppression.
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kickingandscreaming
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« Reply #8 on: April 28, 2016, 02:20:16 PM »

BMI is BS.  It has been pretty well repudiated as a way of gauging degree of overweight. Since muscle weighs a lot more than fat, many very fit and well-muscled people come out with high BMIs and it's not because they are over-fat.  It ignores muscle mass, bone density and overall body composition.  There are lots of very small-boned women who have lots of fatty tissue but don't weigh much.

"A 6ft-tall Olympic 100 meter sprinter weighing 90kg (200lbs) may have the same BMI (26) as a couch potato of the same height and weight. A BMI calculation would class both of them as overweight." http://www.medicalnewstoday.com/articles/265215.php

It is an outmoded method of measuring overweight.  It's as misguided as renal dietitions urging kidney patients to eat a lot of margarine.  They haven't been keeping up with research.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
DialysisGoneFOREVER
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« Reply #9 on: April 28, 2016, 03:46:28 PM »

But it depends. Sometimes it's accurate.  Even usually it's accurate. I'm a big time weightlifter and only about 15% of Americans lift weights on a reguar basis.

It's the exception to have someone have a BMI over 30 or 35 due to muscle mass. Usually it's due to fat and don't forget that America has the most obese population on earth!
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kickingandscreaming
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« Reply #10 on: April 28, 2016, 04:54:51 PM »

Lifting weights isn't the only way to have a lot of muscle mass.  Some people are just naturally large boned or muscular.  And that BMI number doesn't tell that story.  And to have one's transplant future based on a potentially bogus number is downright unfair. For example -- in another context-- I happen to be quite well-muscled.  Always have been.  I'm a 74 year old woman and most creatures of my vintage are not know for being muscular. But I am.  When my kidneys were going down hill, my nephrologist always lowered the import of my creatinine score because it is a waste product of muscles.  Had she classed me with typical old ladies my kidney status would have looked worse than it did when she adjusted it based on my substantial natural musculature.  Men are allowed to have a higher creatinine score because they are --usually-- more muscular than women. But not always.  We're all individuals.  Not numbers.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #11 on: April 29, 2016, 05:37:28 AM »


As a lifetime mechanic I wasn't 'fat' but I did have small 'love handles'.   I could dead lift 400 pounds and carry it where ever needed then squat and shuffle under the Mack Dump Truck and set the spring pack into place all by myself.  Everyone else needed another person as none could pick one up.

I would carry a heavy tool bag up and down hills all day running service calls all around the lakes to the private docks behind the homes on the water.

I was a muscle bound ape that still had speed and agility by playing racket ball regularly.

BMI never came close, I was always 'technically' obese.   No way.  The system needs to change to better take into account individuality in build and condition.   We are human beings, not sacks of grain, all of set sizes.

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Michael Murphy
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« Reply #12 on: April 29, 2016, 06:37:30 AM »

The goal of a transplant is worth the struggle.  My first two years on dialysis no one here I knew got one in the last year several have graduated and every looks Ike they won the lottery. Very happy people.
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DialysisGoneFOREVER
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« Reply #13 on: April 29, 2016, 07:26:14 AM »

Charlie, I agree with you. You're the exception to the rule. So did you ever get your transplant?

Michael, I TOTALLY agree it's worth the struggle! It took me 4 and a half years to find a living donor! But I agree with those on here who say transplant centers can be VERY unreasonable!!
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tigtink
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« Reply #14 on: April 29, 2016, 08:38:24 AM »

Thanks everyone for the support. I agree that there might be a good medical reason for a weight requirement, but there should be some leeway. The person who designed that ridiculous BMI chart could not have been a woman who has gone through menopause. Also, they should take into account how you carry the weight and how it would complicate the surgery, not to mention the fluid retention that occurs with late stage kidney disease. I can lose 8 to 10 pounds in a day just by restricting my fluid intake, yet my doctor wants me to stay well-hydrated! And from what I've heard, it is next to impossible to lose weight while on PD, so those folks have an even harder time getting on the transplant list. I don't even think a BMI of 32 is that unreasonable, but why the higher allowance of 35 for a living donor transplant? And why a 20 pound difference between three transplant centers? It just seems so arbitrary. They don't want to let our hemoglobin rise to even normal levels, yet we are supposed to exercise and lose weight.

PrimeTimer, thank you so much for pointing out how misunderstood the transplant and dialysis process is by most people. I've heard people say stuff like "What's the big deal about sitting in a chair 3 times a week and getting dialysis?" without any comprehension of the risks or the side effects, or the psychological toll of depending on a machine for your life. And over and over again, people seem shocked that I don't have a living donor, as if it were easy for just anyone to volunteer to give me a kidney. The twists and turns of a living donor are an additional level of an emotional rollercoaster beyond all the hurdles of getting on and staying on the list. The average person has no idea of how hard the transplant and dialysis process is. The media makes it sound like you can just go in and get the surgery or let a machine do all the work. They also think a transplant is a cure and have no understanding of what a crap shoot it really is.

DialysisGoneFOREVER, my fistula is going strong after three years, and my nephrologist says it is ready to use if I need it. I'm trying hard not to need it.

I WILL lose this weight, whether it takes me 3 months or 9 months is the question. I do what they ask me to do, but I reserve the right to kick and scream about it once in a while.
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Simon Dog
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« Reply #15 on: April 29, 2016, 11:51:01 AM »

The unfortunate reality of the situation is that there is a limited supply of organs, and these rules are designed to boost the xplant centers success statistics by sending them to their best possible forever home (to use the term from the dog adoption world).    It may not be "fair" to the excess BMI person, but may very well serve to maximize the number of expected "functioning kidney years" from a transplant.

There are lots of tough decisions for those in power to make.   Where should a scarce kidney go?  To the slim person whose medical stats indicated an expected kidney life in excess of a decade, or the overweight person where the medical stats indicate (for the sake of argument) an expected life of only 5 years?  It gets more complicated if the overweight person has been waiting 10 years and the thin person only 3 years.    No easy decision, everyone has their own definition of "fair", and it's generally one that suits their situation.  It's sort of like "tax the rich" - everyone takes that to mean "tax anyone making a lot more than me".-
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Michael Murphy
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« Reply #16 on: April 29, 2016, 11:56:26 AM »

One more thing after my fistula was installed I had two wonderful years before I started dialysis the only annoying thing was having to go to the nephrologist and listen to another argument that I needed to start dialysis. Ido know a women who has had her fistula bout 7 years and is still avoiding starting. My advise let the doctors worry about your lab results and you enjoy your life.  When it's time you will show symptoms and dialysis will come as a relief since you will feel better almost imeadiately. Good luck.
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raramorgan
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« Reply #17 on: April 29, 2016, 07:06:20 PM »

 Hi I have not yet started dialysis but some of the things I read on here are so good to know. I am a nurse but have never done dialysis and have never known anyone on dialysis. The topic about transplants and BMI are really good because I never would have thought of that. The info about the muscle mass is so true. My son is very muscular  and his BMI was high when he went into the Air Force Academy and they have had to make an exception every time he has his physical. Even if he gets below the wt they want his neck is still to big and makes him overwt for the physical. I didn't know about the BMI I have heard of transplant teams making it really hard for some people to get their transplant. They should be able to make exceptions for the muscular problem some people have. Good Luck in your pursuit of a transplant.
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Charlie B53
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« Reply #18 on: April 30, 2016, 05:03:18 AM »


TX?   No,  I've only just decided to try to list.   My regular Clinic is this coming Monday.  We will talk and I will listen mostly to learn what, where, get paper work started, and get the ball rolling.   I don't expect anything for years, at least.   I've been on PD three years this month.  My labs are close to perfect every month with the exception that my potassium is usually low despite my taking 60 units supplemental pills daily.   They keep telling me to eat more potatoes and tomatoes.      I don't eat a lot since I started PD and lost 100 pounds of water and FAT since I started.   I was way overweight, retired for years before starting sure put a lot of extra weight on me.   I could still stand to lose another 25 to 30 pounds yet.   Those aren't going to be so easy to drop off.

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