Only 5% of dialysis patients get a transplant??

[DialysisGoneFOREVER]

I recently spoke to my EX dialysis dietician and told her I finally got a transplant. I was on PD for a few years but it stopped working so I spent the last 5 months on hemo. I was shocked that in those 5 months I was the ONLY person who got a transplant despite some others there were in their 40s or younger!

She was very happy I got a Tx but I was shocked when she told me only about 5% of patients at her clinic get a Tx! She told me that the reasons why 95% don't get a transplant range from no insurance, insufficient insurance, inability to pay for meds, and patients smoking in addition to medical issues of course.

What have you noticed? About what percentage of dialysis patients in your former clinics went on to get a transplant and what were the reasons most just stayed on dialysis till death?

[Michael Murphy]

In my case every year I have a malignent melanoma removed from my body usually my back.  Fair skinned as a youth we were always thrown out of the house and told go out side the Suns good for you.  No sun screen, just go out and bake.  Worse I would go from neon white to neon red and 4 or 5 days later back to neon white.  Now dialysis sucks but not as much as dead.

[coravh]

I don't buy that 5%. Maybe for that one clinic, but so much depends on the demographics. And let's be honest - an awful lot of dialysis patients are older and have a lot of other health issues. Of the 20 or so in my time slot (back in 2001 - T/Th/Sa am) there were 5 of us that I know were transplanted over about a 3 year period. then I lost touch. But most were not eligible for transplant either due to age or co morbidities.

[Simon Dog]

I don't buy that 5%. Maybe for that one clinic, but so much depends on the demographics.

Demographics is everything.   When I was in-center most of the people were much older, many came in via ambulance, and a couple had to be Hoyer lifted into chairs - not exactly prime transplant candidates.   The RN running the clinc once told me "Look around .... most of these patients could never take care of themselves".

The real metric is what percentage of listed patients get planted?

[DialysisGoneFOREVER]

In my case every year I have a malinent melanoma removed from my body usually my back.  Fair skinned as a youth we were always thrown out of the house and told go out side the Suns good for you.  No sun screen, just go out and bake.  Worse I would go from neon white to neon red and 4 or 5 days later back to neon white.  Now dialysis sucks but not as much as dead.

Can't you get it treated? Then once you're cancer free for 5 years you can get a Tx!

[DialysisGoneFOREVER]

I don't buy that 5%. Maybe for that one clinic, but so much depends on the demographics.

Demographics is everything.   When I was in-center most of the people were much older, many came in via ambulance, and a couple had to be Hoyer lifted into chairs - not exactly prime transplant candidates.   The RN running the clinc once told me "Look around .... most of these patients could never take care of themselves".

The real metric is what percentage of listed patients get planted?

Yeah that's true. There are 100K people on the list and only 16K transplants a year so it can't be more than 16% from the list who get transplanted every year.

[DialysisGoneFOREVER]

I don't buy that 5%. Maybe for that one clinic, but so much depends on the demographics. And let's be honest - an awful lot of dialysis patients are older and have a lot of other health issues. Of the 20 or so in my time slot (back in 2001 - T/Th/Sa am) there were 5 of us that I know were transplanted over about a 3 year period. then I lost touch. But most were not eligible for transplant either due to age or co morbidities.

Yeah, I think it's higher than 5% nationally but that's what it was at my former clinic. I read that African Americans get transplanted at quite a lower rate than others. I assume it's due to financial reasons and blood pressure & related health issues that are higher among blacks.

[Michael Murphy]

In my center transplants seem to run in batches, none for 6 months then 3 or 4. As far as the 5 year rule it's hopeless.  From my waist to my neck I have hundreds if not thousands of moles.  The last time I had one removed was this spring and I am due back in sept.  I can't complain though because for some strange reason they itch when the start becoming melanoma.





sp mod Cas

[cassandra]

I don't buy that 5%. Maybe for that one clinic, but so much depends on the demographics. And let's be honest - an awful lot of dialysis patients are older and have a lot of other health issues. Of the 20 or so in my time slot (back in 2001 - T/Th/Sa am) there were 5 of us that I know were transplanted over about a 3 year period. then I lost touch. But most were not eligible for transplant either due to age or co morbidities.

Yeah, I think it's higher than 5% nationally but that's what it was at my former clinic. I read that African Americans get transplanted at quite a lower rate than others. I assume it's due to financial reasons and blood pressure & related health issues that are higher among blacks.

African-Americans or in the UK called Black Britains and in the Netherlands Non Western Foreigners are also an awful lot less transplanted because African-Americans and Black Britains and Non Western Foreigners are an awful lot less likely to donate or to be on the donor registration list.

[iolaire]

In 30 months on my afternoon M/W/F (third) shift three patients have been transplanted (two appeared Hispanic and the third was either mid-Eastern or north African).  One patient from the second shift who would get off when I was there passed away - he appeared mentally changed and I believe he was in some sort of care facility, so he had other contributing factors.  I feel my shift is full of healthier people who either work or could work.  When I come in for other shifts it seems like at least 50% of the patients are fairly or severely infirm due to age related or health issues.

Also from the various people that have sat around me I'd say maybe 50% have talked about being on the list.  Many others there is not talk of that.

[Simon Dog]

I don't buy that 5%. Maybe for that one clinic, but so much depends on the demographics.

Demographics is everything.   When I was in-center most of the people were much older, many came in via ambulance, and a couple had to be Hoyer lifted into chairs - not exactly prime transplant candidates.   The RN running the clinc once told me "Look around .... most of these patients could never take care of themselves".

The real metric is what percentage of listed patients get planted?

Yeah that's true. There are 100K people on the list and only 16K transplants a year so it can't be more than 16% from the list who get transplanted every year.

That's 16% including those with live donors, which means a lower percentage of people who get dead meat.

[DialysisGoneFOREVER]

In 30 months on my afternoon M/W/F (third) shift three patients have been transplanted (two appeared Hispanic and the third was either mid-Eastern or north African).  One patient from the second shift who would get off when I was there passed away - he appeared mentally changed and I believe he was in some sort of care facility, so he had other contributing factors.  I feel my shift is full of healthier people who either work or could work.  When I come in for other shifts it seems like at least 50% of the patients are fairly or severely infirm due to age related or health issues.

Also from the various people that have sat around me I'd say maybe 50% have talked about being on the list.  Many others there is not talk of that.

Talking about being on the list is a lot different from BEING on the list. I know because I went through HELL just to get approved eventhough I'm PERFECTLY healthy other than the kidney. I've won athletic awards for running a mile in 5:45 and 400m in 57 seconds yet they STILL gave me hell!

So based on your info it seems like around 10% to 15% patients actually end up getting a transplant at your clinic?

[DialysisGoneFOREVER]

That's 16% including those with live donors, which means a lower percentage of people who get dead meat.

But the list includes people who get living donors. I was on the list but when I got a live donor they took me off the list. You need to be approved and get on the list even if you have a living donor.

But with the list growing every year you could have only 10% or 12% getting transplants in 5 to 10 years!

[Simon Dog]

But the list includes people who get living donors. I was on the list but when I got a live donor they took me off the list. You need to be approved and get on the list even if you have a living donor.

My point exactly.   If 16% off the people on the list get planted each year, and 5% of the people on the list have live donors, it means only 11% get cadaver organs.

Talking about being on the list is a lot different from BEING on the list. I know because I went through HELL just to get approved eventhough I'm PERFECTLY healthy other than the kidney. I've won athletic awards for running a mile in 5:45 and 400m in 57 seconds yet they STILL gave me hell!

What kind of hell?  All I had to do was about a dozen blood tubes; an infectious disease consult (mainly making sure I had up2date vaccinations); cardio echo and stress test; an email clearance from a hemo doc who had treated me for an unrelated issue; and a meeting with a social worker and an RPh to gave me an overview of post xplant meds and costs.  I assume there was a wallet biospy in there somewhere as well.  The hemo doc had to re-submit his approval when I went back on the list after going inactive for a couple of months for a hip transplant.

It was a very straightforward process, and the big city medical center allowed me to have the cardiac tests done at the local community hospital.

I was asked to have anther echo and stress test after a couple years on the list.

[iolaire]

So based on your info it seems like around 10% to 15% patients actually end up getting a transplant at your clinic?

Only on my shift that has more healthy people.

Talking about being on the list is a lot different from BEING on the list. I know because I went through HELL just to get approved eventhough I'm PERFECTLY healthy other than the kidney. I've won athletic awards for running a mile in 5:45 and 400m in 57 seconds yet they STILL gave me hell!

What was the hell? 

It was very painless for me, one half day of tests, one half day of counseling on the various subjects.   I also met with the surgeon, I think that was after the counseling. And at three year market I had to meet with surgeon again and get lab work. I will say that I am healthy, happy, married, have employer insurance (now with Medicare primary), and am financially stable - all factors that likely made it easier.  I also live very close to the hospital so visiting the hospital was minor.

[DialysisGoneFOREVER]

I had a VERY different experience!! I was railroaded at Northwestern!!  I was PERFECTLY healthy yet they turned my psych exam down eventhough he only talked to me for 15 minutes and I answered everything correctly! Northwestern's Tx program is run by evil PSYCHOS & I recommend everyone STAY AWAY from there!

Then Mayo Clinic did the same thing! I finally got approved at U. of Illinois at Chicago which happens to be on the best hospitals for kidney transplant in America!

I also went to UPMC in Pittsburgh and they made all sorts of crazy demands like wanting to drain my lungs of fluid eventhough they admitted they couldn't hear any fluid during the exam! Until I got to UIC I got the feeling they were doing everything they could to turn me DOWN!!

UIC was the ONLY place that acted SANE and rational  the entire way through. I'm not the only one who has had trouble. I've heard many Tx centers make it hard to be approved because there is a limited amount of kidneys and the list is only getting bigger.

But I've NEVER heard of anyone who's gotten RAILROADED as badly as I was!!! 

[cassandra]

Maybe after a year of presumed consent in France, January '17 (friends and family no consultation (so can't say no)) and in Wales, September this year (family can say no, like in Spain and Belgium) the world (as in taxpayers) will see which system is a good alternative to the inhuman, expensive, unfair and plainly ridiculous opt-in system. The biggest disgrace of the systems at the moment is that a donor codicil or registration can be overturned by family and friends.


   

[DialysisGoneFOREVER]

Maybe after a year of presumed consent in France, January '17 (friends and family no consultation (so can't say no)) and in Wales, September this year (family can say no, like in Spain and Belgium) the world (as in taxpayers) will see which system is a good alternative to the inhuman, expensive, unfair and plainly ridiculous opt-in system. The biggest disgrace of the systems at the moment is that a donor codicil or registration can be overturned by family and friends.


   

Can you please expound & give some background context on this?

[Simon Dog]

Resistance to xplant donation is high.

My wife is an RN, and works with transplant patients post-op.  She is adamant that if she dies, none of her organs are to be donated.  It she were to die at a young enough age to be a donor, turning down the harvesters would be a difficult thing for me to do, but I would do it - since it is her decision morally (though it would be mine legally).

I have told her that if I die, I want her to honor my decision and donate my liver. The only problem is that my liver doesn't get much exercise since I am an almost total non-drinker.

[cassandra]

In countries where there is an 'opt-in' system, (where people have to register if they want their organs to be used after they have died) the amount of available organs is low. Then when a person dies who IS registered to be a donor, in around 60% of cases friends and family still refuse.

In countries where there is an 'opt-out' system (presumed consent) as in Spain, Belgium, Austria, everyone who has died is a potential donor, however friends and family can still object against 'harvesting' of organs. Availability of organs is significantly higher.

In France there will be not only presumed consent, but also that friends and family can not object.

http://ec.europa.eu/public_opinion/archives/ebs/ebs_333a_en.pdf

The low availability of organs is one of the main reasons that transplantation rate is low. Also the opt-in system makes it up to a person to opt-in first. In most countries most people have never thought about organ donation, so they won't opt-in, don't discuss it either.

In countries with an opt-out system people discuss it more, and when people don't want to, people can register so.

People in need of organs like skin, lung, liver, heart, eyes, kidneys are in most cases suffering, in need of help or treatments and restricted in contributing to society.

I found it shocking to hear from a transplant surgeon (while I was in an NHS med. council group when I still had dad's kidney) that he would not 'harvest' organs
If friends and family were against it, even if the deceased had registered to be a donor.

Maybe after a year of presumed consent in France, January '17 (friends and family no consultation (so can't say no)) and in Wales, September this year (family can say no, like in Spain and Belgium) the world (as in taxpayers) will see which system is a good alternative to the inhuman, expensive, unfair and plainly ridiculous opt-in system. The biggest disgrace of the systems at the moment is that a donor codicil or registration can be overturned by family and friends.


   

Can you please expound & give some background context on this?

[DialysisGoneFOREVER]

Resistance to xplant donation is high.

My wife is an RN, and works with transplant patients post-op.  She is adamant that if she dies, none of her organs are to be donated.  It she were to die at a young enough age to be a donor, turning down the harvesters would be a difficult thing for me to do, but I would do it - since it is her decision morally (though it would be mine legally).

I have told her that if I die, I want her to honor my decision and donate my liver. The only problem is that my liver doesn't get much exercise since I am an almost total non-drinker.

Why is she so adamant?? It's not like she still uses her organs after she dies!

[jackiemich]

During my 4 years on dialysis (hemo) there were about 5 or 6 on my shift that received a kidney.  The reasons most didn't want a transplant was because of age or other medical conditions that wouldn't allow them a transplant. 
In my case, at the time a transplant sounded like a great idea.  Although I am extremely grateful for the gift I received (3/6 match and 0.9 creatnine at last labs), I'm not so sure I would do it all over again if I knew what I know now back then.  For me it is difficult to find a job that provides full time work with medical insurance. I'm in a rural area where jobs are scarce.  Right now I am with vocational rehabilitation trying to find full time employment.  I worked at WalMart before dialysis started and had health insurance with them.  Now they only hire part time with no insurance.  I have a degree in criminal justice but it is a really out of date (1994) so I don't have anything current to put down on an application.  Same with computer skills.  Voc rehab won't send me back to school to update skills because I already have a degree. My time with them is running out so I"m at a loss as to what to do.  I still get Medicare and disability because of the program. 
So in hindsight not sure if I would get a transplant or not.  Maybe if I was married and had insurance with my husband or if I had a job to go back to that had insurance it would be different. 
I'm sure a lot of people are in my situation.  How can you afford to keep your transplant if you don't have insurance or a high paying job to pay for the meds?