I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Lillupie on November 02, 2009, 09:00:38 AM
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hey,
I was wondering why patients arent getting transplants? I keep reading/hearing about patients being on dialysis for several years. Why arent they getting transplanted?
Lisa
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people are getting transplants everyday.
The problem is way more people need transplants then there are organs at the ready. So many people with very common blood types makes getting an organ hard. Thus the waiting list.
Also people think if a person dies in a car wreck and has a signed donor card take his organs. it isnt that easy sadly. To donate an organ one must die (generally) in a hospital so they have time to harvest the organs. Once the body dies there is only minutes to save any organs for transplant.
This is what makes living donors so loved and valuable.
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hey,
I was wondering why patients arent getting transplants? I keep reading/hearing about patients being on dialysis for several years. Why arent they getting transplanted?
Lisa
Life is great!
Why mess with success?
8)
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1. Rather to bear those ills I have than go to those I know not of.
2. I'd miss the nurses, techs, dieticians and other staff at the center, not to mention many of the other patients.
3. I can do anything Zach can do! hehe
4. Haven't yet seen the statistics that say I'd be better off.
5, Have moral issues involving accepting the organ of a living person.
(Hey, its just me. Please don't beat me up.)
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Also, not everyone can get a transplant....could be due to health issues, too many antibodies, etc. I know one person who is unable to get a transplant because of the type of kidney disease she has.
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Lots of reasons. It can be a personal decision, some aren't eligible, antibody problems and of course, there are more who need organs than there are availble organs. It all seems so easy and then we learn all the reasons why we don't get transplants.
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I was told my BMI was too high. I think right now I am in denial and pissed over it. I feel discriminated against although I know the reasons behind it. Just have to wait and see what happens.
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I am sorry MissyKew :cuddle; That is one big issue with transplant centers. One of mine requires a BMI of 30% or lower. So many rules and each center is a little different.
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Over here (Oz) you go on the list when you go on dialysis (unless you request not to) and your taken off the list as soon as you stop (so that time i had off dialysis when i went back to 23% i was removed from the list) and it's not a 'waiting' list per-se. From what they told me its a best match/greatest need. I think time on dialysis is one of the last criterion. Also there are so few donors here. Look how poor the stats are for Australia and NZ For jan-dec 2007- 342 cadaveric donations in Oz and 65 in NZ. That is 407 Kidneys donated in two countries with over 22mil people (australia) and about 4-5mil for NZ. Living/related donation for the same period was even less 270 for Oz and 58 for NZ. I'm guessing that if you look at the stats in the USA it'll be the same (and if i understood the data correctly, they both work out at 14/15 kidneys donated for every million people- that's 7 people donating per million people). (care of anzdata.org.au) and the figures ar pretty stable for the 4 years before.
I have a friend who thinks i should 'manifest' everyday for a kidney. Honestly i'm not going to hold my breath, I prayed everyday for years and nothing happened so i figure everything happens when you least expect it or want it. So if i stop wanting maybe it'll happen.
I've always been a donor. I made the decision when i was 16 and healthy. The day I got my learners permit I ticked 'yes' to being a donor, so if a healthy 16 yearold girl can make that decision why can't others? - I still have donor ticked on my card...... I wonder how my organs will be when i go. I really hope at least some of them will be salvagable.
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4. Haven't yet seen the statistics that say I'd be better off.
(Hey, its just me. Please don't beat me up.)
Not beating you up- just showing the stats.
http://www.medscape.com/viewarticle/703426
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I cannot accept that the situation cannot be changed. About 6,000 on transplant list, and they are talking about 8,000 people dying annually from the flu. I acknowledge the math is no where near that easy but by simply having an "opt out" donor policy like Spain could clear up Canada's waiting list in short order.
I also think we should have a tax credit for donors of $10,000 per year -- it would not motivate donors necessarily but may every accountant and financial advisor an advocate for donation. (I can speak of that we will always tell clients of ways to save taxes)
Have a "quiet hero" promotion like some people do here where cards are sent to donors is also a great idea -- BTW when I mentioned it locally they got all up in arms about confidentiality. But that is alright "you can't because . . . " always tells me it is a great idea!
I have also been thinking of difficulties people are having in asking people (no judgement here, just it never occured to me but that is parly because my sister was demanding to donate less than forty eight hours of us knowing anything was wrong -- and she questioned -- hard -- when they squeeked that "but Mam, there are some tests . . . " she had allot of gold braid on at the time so"no" was not what many people would say to her. ) :-)
The best I came up was a buddy system to help families talk out the situation. Let people express fears, their right to refuse without judgement but get it out there so a quiet hero can step up that may otherwise be reluctant.
On the good side, we have had great success with "swaps" with as many a six transplants occuring so there may be a reduction of waiting lists.
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It is rare when kidneys are retrieved from non-beating donors. Deceased donors are hard to come by because they must have a unique set of circumstances the render them brain dead, such as an accident like a fall, car crash or aneurysm. They are not able to survive when life-support is removed. Even if every single person that died this way had signed up to donate, it would not come close to reducing the shortage.
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Pretty much what everyone else said.
I know here in Australia I reckon one of the big reasons for the low donation rates is because we have an Opt In system. I bet say 7 out of 10 people think to themselves if it ever comes up or they see a story or something "Yeah I should do that. That's a good idea" but actually getting off their butt and signing the forms at medicare... well that requires ACTION and a lot of people are apathetic unless it's something that has touched their lives through a family member or friend. I think the new donatelife.gov.au website is a good start since you can register online now which really helps I think as more people get connected it will be easier for them to sign up.
I don't pretend to think that even if we changed to an Opt In system that everything would be solved - of course not. As has already been discussed the situations where a candidate is viable for organ donation are quite rare - the popular belief is that every fatal car crash or accident means organs will be available to be donated - sadly that's not the case.
As someone who is in need of a transplant and having waited for over 3 years so far I know it will most likely be another year or more yet. I also know that it will happen when it's meant to happen. Obviously I dream of the day, but then again probably when it comes I will actually freak out and then the whole other set of worries will set in about hoping it works, and the changes that it will bring(hopefully) and all that.
For now I keep waiting and try to not get inpatient about it.
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4. Haven't yet seen the statistics that say I'd be better off.
(Hey, its just me. Please don't beat me up.)
Not beating you up- just showing the stats.
http://www.medscape.com/viewarticle/703426
Hey, "I'd be better off" means "me" and not "You" or anyone else. Believe me I've discussed with my nephrologist, seen staitistics both ways, and know about my specific case. Either way will work for me because of extra good health conditions. Hey, I just wanted to post something to make a good friend happy and tried to be as honest as possible. Plus, no decision has been made and I did list more than one reason, none of them considered in a vacuum. At my age, I'd probably need a live donor. Several are willing to test but (reason 5 is in play year). I must have lived a pretty good life to have so many friends, wouldn't you say. Wish it translated to here! <snicker>
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"Rather to bear those ills I have than go to those I know not of." - I like that a lot, thank you for posting it!
For me, I wasn't allowed a transplant because of BMI - although I am healthy with everything except kidneys. Seems to me I'd be a more ideal candidate since I am young, healthy and have many people willing to donate but what can I do other than try to meet their standards, even though I think it's wrong. I want the option to be there if times ever get really tough and dialysis isn't working as well anymore.
On the other hand, I worry about what a transplant will entail, the life long drugs, the rejection chances, the risk of death during surgery.. it's all scary stuff. It's hard for me to risk the happy life I have now for a CHANCE of a happier one. Seems like it's tempting fate to me, and it'd be a hard decision.
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For me, I don't want one. I written in here too many times why. I'm sure people are sick of it. Looking at your picture, you're young enough, you should get on the list as soon as you can if you haven't already. I just don't like going to the hospital and getting an operation for something that is temporary at best, eventually having another operation. I hate being in the hospital. I had a motorcycle wreck, fell off a faulty ladder, had a bad Cellulitis infection from a spider bite and had to lay around in the hospital for a long time, twice. Got cleaned up in the alcohol ward. Ive been in the hospital enough.
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Being that I transplanted before going on dialysis I can't weigh the options, but I do know that even with all the issues associated with transplant (and there have been a few) ie. my hair is FUBAR'd (f*#$cked up beyond all recognition/repair :D), weight gain, strange body changes due to the Prednisone, fat in places I've never had fat before, etc. I am very grateful for my kidney. True, I may lose it due to infection, rejection, time..., but I'll deal with that when/if it happens and life will go on. I'm blessed to have a really good support system, both at home and here at IHD.
Had I started dialysis and had to wait I would have made it through that, too. Personally, I could never have made the decision to not get a preemptive transplant and avoid dialysis. I think this was God's plan...for now anyway. He seems to switch stuff up on me a lot. I definitely have to stay on my toes. :pray;
We all make decisions for ourselves daily and the same decision made by two different people will rarely, if ever, have the exact same outcome. Life is strange. :) Good luck to you. I hope your wait is short! :pray;
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Well, UCLA won't put me on the transplant list until my weight gets down to 160. That's kind of difficult when my body absorbs 937.5 calories every day from my dialysate. I just heard of another woman who was told by UCLA that she has to have a triple bypass before they will consider her for a transplant, and even then it's iffy. So, there's two for you right there.
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I do cardiac ultrasounds and work in a 700 bed hospital. I am also part of Gift of Life on occasion when they call me to work-up a brain dead person. As I am making my way to the hospital room I am praying all the way that I will find a healthy functioning heart. I think about that phone call that some heart failure patient has been waiting for. Often times there is something that makes it impossible for any of the organs to be donated. It seems when I find a healthy heart, CT will find an undiscovered cancer in another organ or something else that renders all organs untransplantable. Many people die quick and their organs can't be tested before they are removed from the body. Like someone else mentioned, the person has to be kept alive until all the testing can be complete.
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My daughter had to have surgery to reconstruct her bladder before she was accepted as a possible transplant recipient. Her old bladder would have damaged a new kidney so this was required. It was a huge surgery, 10 days in the hospital and no food for 6 days, but it worked.
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Interesting:
The decision regarding a BMI cut-off is based on each transplant team's interpretation of related literature. Some researchers describe longer hospitalizations, more complications (wound and other), and high incidence of rejection in patients with higher BMIs (Meier-Kriesche, Arndorfer, & Kaplan, 2002). Others have reported a lack of complications in patients who have received a transplant even with very high BMIs (Marks, Florence, Chapman, Precht, & Perkinson, 2004). Because this is a very controversial topic, it is crucial for dialysis staff members to be aware of the local transplant center's position regarding BMIs. Consult your center to understand their policy and ask for references that support their decision. When weight loss before transplant is recommended, the patient will usually be given a target weight that meets the transplant center's BMI guidelines.
from: http://www.britannica.com/bps/additionalcontent/18/22972233/Nutrition-And-Transplant--How-To-Help-Patients-on-Dialysis-Prepare#
Seems to me that this suggests there's divided opinion on the subject. At our transplant seminar it was suggested that they wouldn't accept a BMI over 30 because it meant for more complications with the surgery and recovery - and the outcomes were usually not so good for folks with higher BMI's....
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They want a cyst out of my back before considering me for transplant. No way, so no go.
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Strangely, we have patients well over 30 BMI that received a living transplant (Canada again).
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My BMI is 33 and I was cleared for a transplant by my surgeon because my " fat" is in my hind quarters.... ( as big as a police horse) heheheh I am "skinny" in the abdominal area..... but I am still trying to loose... wish me luck.