[krisakira]

I know it's not the case for every single case of a person in need of a transplant who has a mental illness. But it is a negative factor, as is obesity and history of suicide attempts or self injury, or drug addictions. I know logically they think the healthiest people, the ones who are most likely to survive the longest, should get the transplants. But why isn't my life worth saving? It worries me, because something could happen any time... and they would just let me die... anyone else have worries about this? I don't think its fair. I don't know what they deem as "mentally stable," i mean I am on disability for it, so does that make me unstable? cause i can't hold a job?

This website i just read, says the reason that people with mental illnesses or even a predisposition to psychotic or depressive tendencies sometimes can't be organ recipients, is because the surgery is so stressful to the patient that it can make them mentally unstable, so I guess they think if you already are mentally unstable then you somehow won't survive the healing process... here's the link.

I don't know.. it's not like I'm constantly dwelling on it, but I do think about it sometimes, and also because of my obesity, I'm sure i'll be deemed unworthy of a transplant. I hope I never need one, because it may be the end of the line for me.

[SophiaG]

I thought this thread was about brain transplants for people with severe mental illness. Don't ask me why I thought this. LOL

[Perna]

Krisakira, there are all kinds of things we can think about that seem unfair but they have nothing to do with us; I thought you needed a transplant now but you're just out there in your imagination. How do you know you will be obese and mentally unstable if/when you need a transplant? You don't. Work on the problems choose from the ones you have in front of you, not the imagined ones!

[Lexi232]

o_o!!
This is the first I've heard of it!
That's not fair! because what if someone has a mental illness due to the way their liver is processing things and they dont know it? or they have a gi tract problem and they can't absorb a good emount of b12 vitimin and end up anemic or with diagnoses of schizophrenia? we know someone who actually was done that way and ended up she severly low in b12 in her blood.

But even still!! a life is a life!! no matter what!! Everyone should be given a fair chance!!
That's not right what they are doing!!
mental illness isn't something one WANTS, and obviously isn't something that can be cured or we would all be okay. so it's no ones fault for having such things... erm.. well... speaking in the whole chemical makeup and genetics of a person. there are things that are to blame on certain parties, but .... it's just not right.

[krisakira]

Originally Posted by Perna

Krisakira, there are all kinds of things we can think about that seem unfair but they have nothing to do with us; I thought you needed a transplant now but you're just out there in your imagination. How do you know you will be obese and mentally unstable if/when you need a transplant? You don't. Work on the problems choose from the ones you have in front of you, not the imagined ones!

Well I never said I needed one. I said that anything could happen. This is just my opinion that I think it is unfair, and that I hope it never affects me. It's not really imagined, because it is the world we live in.

[Lexi232]

someone has to stop it... and usually it's a person who thinks just like Krisakira who ends up stopping it.

But whether it happens to me where I need a transplant at one time or another, or not. It needs to be changed so it's not discriminating. because if its not stopped... it very well COULD be me.

But I also believe I see where your coming from Perna. such as not being paranoid, or overly worried about something we have no clues that point to that we would even need it in the future, and to not base our lives around this. and letting it become a huge fear which controls our lives, and consumes our full attentions.

[Straywolf]

As someone currently in kidney failure (not complete yet..but.yeah) who will be facing a transplant sometime in between 7-20 year (yes, this is the estimate they give me!)
I reccommend doing what lots of people in my position do. Lie.
Basically, being suicidal is the only real rule out and most doctors will actually fight /for/ you. The commissions just have it hard because there are so few donors and so many needed they need to prioritize. :/
I think thats only for non live donation though. If you have a friend or family member donating it's a lot easier.

[krisakira]

I would think they look up your medical history though, and in mine, there are 7 recorded suicide attempts and hospitalizations :\ I don't think i could lie about that. I know its hard for everyone to make decisions with so few resources. thanks for bringing that up

[DenisDonnacha]

I never heard this before, but that is absolutely shocking and it's amazing they can get away with something like that. Petitions against this need to be signed now.

[Perna]

There are only so many transplants; people die daily waiting for them because there are not enough; only the healthiest and most likely to benefit get them, there is a whole set of criteria as to one's place on a list. It has nothing to do with being mentally ill or physically ill or and individual's "deserving" them, it has to do with not wasting the transplant!

Read the current facts about transplantation instead of somebody's personal ideas and opinion about how it works and whether it is equitable: http://www.unos.org/donation/index.php?topic=optn

My sister underwent a bone marrow transplant a little over a year ago. One thing I learned in watching her go through the process is how incredibly demanding, stressful, debilitating, and completely structured your life MUST become during and after transplant. She gained huge amounts of weight initially, then lost over a third of her body weight after the transplant as she was unable to eat, which was very stressful in itself. She fought severe depression during the process. She lost her short term memory completely due to a virus that attacked her brain. She had over 40 pills to take each and every day at very specific times. She had to be at the hospital for 35 days initially, and then every other day after discharge for extensive bloodwork and treatments. There is a list several pages long explaining everything you can and cannot do, from foods to eat to when you can have sex.

Honestly, I can completely understand how people with severe mental illness should be excluded from the transplant list. I read constantly here of people who willy-nilly just stop taking their meds, who are unable to handle the stresses of everyday life, who cancel appointments because they don't feel up to going, who don't follow their doctor's expressed orders because they think they know better. You CAN'T do those things in transplantation. That would be a HUGE waste of an organ. It may seem unfair, but the transplant list is a long one, and there are plenty of candidates out there who are able to deal with the process and with the protocols for transplantation. There are many reasons for exclusion from the transplant list. Mental illness issues are just one of many criteria.

There are no guarantees in transplantation. My sister was an ideal candidate. She did everything that was asked of her to the letter, but still there were complications. Even under the best of circumstances things can go wrong. My sister died after months of deterioration. They have to limit who they offer transplants to because even in the best of circumstances, things don't always work. They have to at least offer the transplants to candidates that show the best chances of survival. That's just the harsh reality of supply and demand. If people really want to open up the pool of candidates for transplantation, then many, many more people are going to have to be willing to donate organs. Until that happens, the system will have no choice but to continue as it is.

[WobblyWombat]

Wow.....

There is so much discrimination in this world and when you are too unwell to stand up for your rights, it makes it all even more painful.....

My Dad needs a Kidney Transplant and he has a long history of depression but he already accepts that he will never be offered a stransplant, mainly because of his age (over 60) and the fact that his heart has been weakened by years of dialysis...

which to me is so wrong... A life is a life.....but sadly my dad has no other options....

[Elysium]

Mentally I'll does NOT equal mentally unstable, just as physically I'll does NOT equal physically unstable. As a Nurse, it frustrates me to see such misinformation as "people with mental illnesses can't get organ transplants" out on the Internet. This is absolutely NOT accurate information. Krisakira, I'm not sure who the "they" is that you are speaking of or what website you have been reading, but please consider the source of the information you are getting. I've been in Healthcare for 15 years and have never seen someone denied an organ transplant due to a mental illness. I've seen the Surgeons and Doctors require people to have professional support for their MI's before they go through with the transplant, but I've never seen or heard of anyone being declined for that reason.

[turquoisesea]

That upsets me. It depends on the situation, but a lot of people go through depression and I feel that reaching out for help during that time should help you not hinder you.

So how do you know someone wasn't really depressed and suicidal and never got help? I just feel that they're punishing the people who do reach out and help themselves.

*hates stigma* *hates this type of discrimination*


farmergirl I'm sorry about your sister. And I do see what you're saying. but I'm also imagning myself on the transplant list, or my friend who has OCD of some type... she's only in her low 20's and already her doctors are treating her like she's stuck for the rest of her life and less of a person. and it's just not fair, and it breaks my heart. I makes me afraid of ever being sick because I might not be treated well. My doctor doesn't listen to my physical symptoms because he knows I've been depressed in past... but they're there and my therapist says it's not like depression to have this happen. so I have to find another doctor.

I guess, it's different in each case and I'm scared.

[Aslan]

Old saying, not what you know, but who you know

[elliemay]

This is a very very complicated issue. It's pretty clear to me that there are no steadfast rules determining who will and will not get a transplant, if a matching organ becomes available.

It is quite capricious actually.

I have a friend who smoked her entire life, was in her late 60's, had profound COPD, was diagnosed bipolar in the late 80s, and got a double lung transplant because she had polio as a child.

I have another friend who used cocaine once, had a hypertensive crisis which destroyed his kidneys. Oh yeah, it can and does happen. He's in his 20s, on hemodialysis, and not even considered for a transplant in this state because of drug "abuse". Oh yeah, he's african american and has no insurance.

A sickle cell disease patient deemed "too sick" for a non-ablative bone marrow transplant from a matched unaffected sibling. Also, no insurance.

A heavy drinking minister gets a liver transplant.

Really, its up to the review board and sometimes their decisions can be biased, and sometimes absolutely incomprehensible to most.

A lot of lobbying, back room politics, and monetary considerations get thrown in. I've seen it first hand.

Bottom line? More people need to become organ donors and communicate this wish very clearly and in writing to their families.

A "check" on the driver's license is not a legally binding agreement and ultimately it is still up to the patient's family to allow the organs to be harvested.

[Umbral_Seraph]

Of course, even if you meet the health criteria you still have to have enough money to pay for everything...

[Caretaker Leo]

If you haven't done so yet, please volunteer to become an organ donor.

((((farmergirl)))) - thanks for sharing your story. I am sad for your loss.

Yes, there is a lot of criteria that a recipient has to meet. Some of it is due to the fact that there are not enough donors for the number of potential recipients. Some of the criteria is rightly put into place because many potential recipients would struggle to handle the stress and changes from a transplant. Some is put in place so that potential recipients will take ownership over certain lifestyle choices that they can change.

My husband was on the waiting list for over 5 years. His health reached a point where he was close to being on his deathbed and was moved on to the top names on the UNOS waiting list. We lived in a hotel for 5 weeks, far from home and hoped a donor organ would become available.

Finally, one did - but someone even more ill (with the same blood type) ended up getting it. It was mentally and emotionally devastating for both of us! We were exhausted and decided to go home.

One month later, we were racing to catch a plane. This time my husband did get the transplant. Another 5 weeks living in the hotel while he recuperated - every day he had to go in for tests to check whether his body would reject it. He became temporarily diabetic and the Prednisone made him crazy hyper... the list of other reactions and complications is long.

We are lucky because 5 years later my husband is still with me. But, each week our kitchen table looks like a pharmacy as we fill his daily pill containers for the following week with about 20 different meds. He has to check in with doctors every month. Much of our life revolves around the residual physical effects from the transplant.

p.s. My husband was signed up to be an organ donor for all of the years before his transplant.

[mgran]

I remember them telling us that my mother couldn't get a liver transplant after a suicide attempt. She had a whole tribe of people around her to support her, children who loved her and needed her. But she was "Mental", so she didn't matter. And because there was no transplant, she died.

And more recently I remember being told that I can never adopt. If I'm ever to have another child I'll have to risk my health by coming off my meds. I've been nothing but a good Mum, my son is thriving, on the cusp of adulthood, all is going well... yet I'm eternally an unfit Mum.

This is never going to change, we are always going to be the objects of prejudice.

[Brokenwings73]

I am absolutely stunned! That total discrimination. Mental illness is just as much a disease as cancer or heart disease and because of bipolar disorder or depression or BPD or anything you have should NOT disqualify you. If you were an addict with hep c or alcoholic that won't stop drinking Thayer should disqualify u. Not your mental health status. A petition must be started immediately. If you agree I've set up a private email just for this purpose I hope it ok with the moderators. ( k.browning_1@aol.com )

I know vice president Joe Biden I'll get it to him. My father went to school with him I know his kids. We can fight this insanity