Honest Reason for NOT wanting a transplant

[jbeany]

Anyone with a high risk for cancer has plenty of reason to think twice about getting a transplant.  My transplant team made it quite clear that they pretty much expect the majority of their transplnat patients to at least end up with some form of skin cancer.  If I had a serious family history of cancer, I might have thought twice about it as well.

[Sunny]

I have had 7 years to mull this one over. I'd have to say I don't feel I'd want a transplant, though not absolutely sure.
I don't feel comfortable taking my sister's and I don't feel comfortable waiting for a deceased kidney because in the back
of my mind I can't come to grips with thinking someone dies young and healthy so I can have their kidney. Who knows
how I will feel when I really start feeling sick again. I've also been on prednisone before and know how yucky I felt on it.

[paris]

Don't know if I should type my feelings out or keep them to myself like I have been doing.............  Been on the magic list for 2 1/2 years. 6 living donors tested.  PRA of 100%. Listed at two centers and had testing done at Johns Hopkins.  Have FSGS.  So, I think I am coming to the point of accepting that a transplant won't happen.  Part of me just doesn't want to worry about it anymore.  I don't feel like I am giving up, but at some point I have to be realistic and move on.  FSGS can affect the transplanted kidney.   I haven't talked to anyone in my family about this.  They all thought this would be easy and quick.  Nothing is easy and quick.  And it is expensive to go through the tests each year to stay current on the list.  After paying your deductible and co-pays, it all adds up.  If my PRA prevents a transplant anyway, why bother to continue with the process?   I was so naive 3 years ago.  Now have to really re-consider where I am at and what I should do.   G-Ma and others,  I think I understand your thinking.  None of this is easy.  Thanks to all for your honest answers.  

[dkerr]

Thank you .....   I'm not the only one who feels this way ...   

[RichardMEL]

All opinions and views here are so appropriate. We each have different views, beliefs and circumstances and I approeciate everyone's reasons for either wanting or not wanting to go down the transplant treatment path. I certainly would not look down on someone because they decided not to go with tx. At this stage as we all know it's just another form of treatment, not a cure... and just because you get a transplant doesn't mean life is automatically wonderful or problems are solved. You could exchange one set of issues (dialysis) for another set.

For me though I'm in the "want" category. Here's my reasons why I've been on the list 2 and a half years and waiting....

1. Drugs - people talk about drugs - but I'm on drugs as it is with dialysis - heparin, iron, epo/aranesp, renegel, sensipar etc... to me there's no real difference in if I swap those for others - potentially loss.

2. Dialysis - stresses the body and causes its own issues over time as we all know

3. Dialysis is a pain in the ARM!! My life would be so much easier if I didn't have 3 chunks of 5+ hours taken out of it a week to sit on my backside and be bored out of my brain enduring this stuff. Added to which I find the fluid and diet issues difficult (specially fluid).

4. I love to travel, and while it's not impossible on dialysis, it isn't very easy and a real pain to schedule, not to mention extra costs if you're going overseas and the risk of something happening away from home and local care (and of course, if you're away and THAT CALL comes.... that is a fear of mine too).

5. Home hemo/nx isn't an option for me - I live alone and simply don't have the co-ordination etc to needle myself (even if it was allowed, which I am not sure it is - I think you need someone there). So I am stuck with in-center. Maybe if I could do it at home, nocturnal that would change things a bit since my lifestyle would be much less restricted, and impacted... but still.

6. Rejection/failure/complications with surgery. Yes. Absolutely a concern.. but you know what... I would take 3 months/3 years whatever away from the machine if I could. It's all about risk, and right now I'm healthy enough apart from the renal issues that I feel I would do OK with surgery and whatever else. The benefits would outweigh the cost in my opinion.

Others have mentioned the issue of live donation vs. cadaver donation and not wanting a live donor. You know what - I REALLY understand this one. While I would not reject a live donation, it has been a very real thought to me that if I did get one from a family member that I would feel very responsible for them - and would never forgive myself if something happened down the track that was a result of their donation/having 1 kidney etc... not to mention the issues that might happen if a live donation took place - and failed/rejected straight up (sort of like a wasted effort)... In those respects I would definitely prefer a cadaver donation because a lot of those issues aren't involved. I certainly understand those not wanting a live donation.

I've enjoyed this thread.

[okarol]

If someone is doing well on dialysis I think "if it ain't broke, don't fix it." I am grateful that that option exists and that patients have a choice (if they are listed, sorry Kit, you know I pray things change.)

Jenna was half awake and half asleep on dialysis. No big problems, just half there. Now she's got an alertness and stamina that is a huge change.

Someone said that dialysis hasn't changed much, but transplants have improved leaps and bounds the last few years. I guess the long-time dialysis patients could address that.

[stauffenberg]

Aside from the case of patients with some highly specific contra-indications for transplant, there is no rational argument for preferring not to have a transplant.  Countless large-size statistical studies have repeatedly proved that transplant doubles the life expectancy of most patients with endstage renal failure, and for diabetics, the life expectancy is tripled with a transplant as opposed to dialysis.  Those statistics allow the patient to assess all the downsides of transplant, from the risk of the surgery, the dangers from toxic immunosuppression, the chance of losing the graft, etc., since all these factors are combined into one by the life expectancy data, which prove that transplant is decisively better than dialysis.

Perhaps some people take the view that their particular psychological constitution is such that they would rather not endure the stress and the uncertainty of what might go wrong with a transplant, but to pretend that that is a good reason for not getting one is like a desperately poor person saying he doesn't want to be a billionaire because then he would have to worry all the time about possibly misinvesting or losing his wealth.

[Rerun]

Good Poing Stauff.

[thegrammalady]

i'm not interested in a transplant (can always change my mind, maybe) which some of my family just doesn't understand (they don't ask either) they think i'm living off the government. i worked 40 years and earned every penney of my disability, thank you very much. now if i were in my 40's and still had children at home it might be a different story. but i'm still thinking on it. i too feel, "if it ain't broke don't fix it" yes i'm sick, but on the dialysis scale of things i'm on the extremely healthy end of the scale. perhaps if things were to get worse....but then again maybe not. (can you tell i'm a pisces?)

[CatEars]

I'm affraid of getting a tansplant because I have settled back into my life so nicely.  Transplant means something new and dangerous and uncertain.  Plus, my nurse keeps saying "get ready for your transplant, it's [insert holiday] and there are lots of accidents this time of year" which really creeps me out.

[Meinuk]

Ok, gang, I'm in on this debate.  (which is ironic, as I am listed with UNOS since 6/05)

Someone said that dialysis hasn't changed much, but transplants have improved leaps and bounds the last few years. I guess the long-time dialysis patients could address that.

Karol, shame on you.  And in response to this quote, I only have one word:  NxStage

 ...but to pretend that that is a good reason for not getting one is like a desperately poor person saying he doesn't want to be a billionaire because then he would have to worry all the time about possibly misinvesting or losing his wealth.

And Stauffenberg, depressed misanthropic attitude aside, how dare you demean any person's conscious decision as "pretend".  You quote quickly outdated data to further your pro transplant agenda.  There is room in the world for many agendas, but no room for condescension of such magnitude.

[okarol]

Ok, gang, I'm in on this debate.  (which is ironic, as I am listed with UNOS since 6/05)

Someone said that dialysis hasn't changed much, but transplants have improved leaps and bounds the last few years. I guess the long-time dialysis patients could address that.

Karol, shame on you.  And in response to this quote, I only have one word:  NxStage
 

Shame on me? I have no experience with NxStage.
But I suppose it's true, and if it were widely available it would be great.

[Meinuk]

Karol, the shame is in perpetuating the "dialysis hasn't changed" chestnut when you are an administrator on a site that is filled with (and founded by) people who's lives have been dramatically changed by the introduction of NxStage on the marketplace. (and this is just the beginning)

One of the biggest reasons that NxStage is not as widely available is the perpetuation of the myth that "nothing has changed" - the industry is MIRED in this attitude, and slow to grow and adapt.  The truth is, we have the technology, we just need to educate people.

And ditto for incenter nocturnal.  (I'm just too lazy to type a diatribe on that as well)

[okarol]

I still think most dialysis patients do not have those options available to them and much needs to be improved. It's not an urban myth. That's just the way it is.
I am glad there are people here like you that give good testimony to the improvements that have been made.
I am always learning. Being an administrator just means I get to work more. It doesn't mean I am smart. 

[Meinuk]

I wasn't disparaging your intelligence (I hope that you are secure in the high esteem in which I hold you).  I am simply stating  - look around, you see examples of the advance in dialysis every day, yet you quote that nothing has changed.

This is the problem.  I agree, it isn't available, and I am saying that we need to speak up and educate these centers, teach them that it is there, they should stop making excuses and help people.

I will go so far as state that it is medical negligence to withhold maximum dosage for people on dialysis.  When Jenna was in center, she was given enough dialysis just to keep her alive, no wonder she was sluggish, with no energy.  The current incenter modality has put every single patient on a minimum diet for financial reasons - turning people into Dialysis Zombies. 

I am pro transplant, (actually pro transplant choice).  I am against the stagnation that exists in the M/W/F world of dialysis, and I would hope that others on this board (you included) would be just as incensed. 

I repeat, the technology is out there, it is just not being implemented on a wide scale, and in order for it to be implemented, we need to teach people, and not perpetuate the same old stick in themud, there is nothing we can do about it attitude, - which is how I perceive your defeatist quote "dialysis hasn't changed".  Because, I'll tell you, first hand, for me, it has changed.

[flip]

I agree that dialysis has improved and is continuing to do so. Some of the new membranes being developed look extremely promising. How soon these products reach us is another story. Dialysis has become a "cash cow" for the major companies in the business. To me, this equates to maximum profit and minimum treatment. Will these companies that are making all the money be willing to invest in research and new technology? As hospitals and medical groups "farm" out their dialysis business, the relationship between new medicine and dialysis becomes more distant and the patients are left to fend for themselves.

[peleroja]

I had no intention of pursuing a transplant when I started PD five years ago.  Four exchanges a day worked just fine for me.  Three years into PD they said it wasn't working as well as they hoped and I needed a bigger bag (2500) or more exchanges, so I went to 5 exchanges a day.  A year after that same conversation, so I went to 6 exchanges a day.  About 5 months later they virtually demanded I go on the cycler with the 2500 bags.  Well, since I had begun losing weight, but hadn't done anything to firm up my belly, 2500 worked out just fine.  I got to thinking, however, what's going to happen a couple of years from now?  To me hemo is just never going to be a part of my life, so I completed all the tests to get on the transplant list.  Basically I consider it a pre-emptive strike.  As long as the PD keeps on working, no problem.  Hopefully by the time it maybe stops working I will have received a transplant.  I guess what it comes down to is it's never too late to change one's mind!

[pelagia]

Ok, gang, I'm in on this debate.  (which is ironic, as I am listed with UNOS since 6/05)

 ...but to pretend that that is a good reason for not getting one is like a desperately poor person saying he doesn't want to be a billionaire because then he would have to worry all the time about possibly misinvesting or losing his wealth.

And Stauffenberg, depressed misanthropic attitude aside, how dare you demean any person's conscious decision as "pretend".  You quote quickly outdated data to further your pro transplant agenda.  There is room in the world for many agendas, but no room for condescension of such magnitude.

While I agree with you about Stauffenberg's wording Meinuk, I know that I went through a stage, prior to my husband's transplant where I was more or less trying to convince myself that it would be better for him to opt for dialysis.  And at that point, he hadn't even been on dialysis yet. Once he was on dialysis (in-center hemo), I had no doubt that the best option would be a transplant.  Now that he has a transplant, and all is going well, it's hard for me to imagine him going back to dialysis, although I realize that it is his safety net for the future.  And, I am encouraged when I read about how well IHD folks do on nx stage because that could be an option for my husband in the future.

It was never an issue for my husband. He wanted a transplant and never really thought twice because his job involves a lot of travel.  He is not ready to give up his career.  It was the same for his dad, who did home hemo for something like 5 years.  He wanted his freedom to travel and wanted to be healthy enough to run (he was always very athletic).  Of my husband's two brother's (both have PKD and failing kidneys), one wants a transplant and the other isn't sure what will be best for him. 

[RichardMEL]

Cat Ears - you are so right about people saying stuff about there being more accidents etc at holidays. That creeps me out too.. it's like I *want* some poor person to die so I can get an organ... which is the selfish view... and while yes that's what I *need* to happen - I don't want someone to needlessly die in some accident or from some random happening like a brain tumour or heart attack or something. I hate that split second thought I have when I hear about some kind of accident with multiple injuries/deaths "Will there be an organ?" because that's a horrible thing to think. Plus I don't think many transplants come of road trauma victims - the way bodies tend to get mangled I doubt  many organs would be in a suitable state for harvesting let alone the whole issue of getting family permission and so on...

very creepy for sure!

[Meinuk]

Pelegia,

I need to point out that you were not pretending, you were weighing your options, considering hemo versus transplant.  And you chose to support your husband's transplant.  I have no problem with whatever therapy someone chooses.  I want people to be healthy and happy by any means necessary.  My problem in in the constant belittling and competition between therapies.  THEY ARE NOT COMPETING THERAPIES people.  No one wins in this fight, ultimately, we all lose.

How silly that in a simple declarative thread about one woman's choice, it became a "which is better - and let me defend my point thread".  Yes, I am just as guilty, but hopefully I've learned that sometimes you should just let things be.

It seems that deep in each persons psyche is the need to defend their choice.  No defense is needed.  The pros and cons are out there for people to educate themselves and choose (for those lucky enough to be able to choose)

I'm saying drop the agendas and encourage everything - whether you have been transplanted or if you are on hemo or PD, you are still using modern medicine to live through each day.  We see the pros and cons in each story, there is nothing gained by taking sides.

[G-Ma]

meinuk...and I thought I was the only one using the term "dialysis zombie"....anyhow.......The FIRST day I was in training I asked """Why In The World Was NxStage Info not given to me as an initial choice either here or in ND?""  Well ND is not certified as not enough people interested...THEY DON'T KNOW....and in NC I was told quietly mind you...."we don't want everyone on it"..........to me this sounds like the initial lottery who lives or dies dialysis from years ago and that is not fair to ANYONE.  That leads me to believe there are probably people on in center dialysis in the same building I'm training in that have never heard of NXStage.  Shame on all.
By the way stauff...please please give me a billion dollars and watch me invest it and use it to fund kidney research and help...........that was something normally uttered by a really ignorant individual, which makes me sad as I have read some brilliant stuff that you have posted.

[stauffenberg]

Of course the poster was not 'pretending' about what was wanted.  For those who understand the English language, 'pretending' that something is a good reason when it is not does NOT refer to the speaker pretending something in a psychological sense, but proposing something which, in the logical sense, is not accurate -- i.e., which is a 'pretense' of what is true.

The very latest data on improvements in dialysis treatment show that the best form of dialysis is short daily hemodialysis, which has been found to produce results equal to those found in cadaver transplants.  However, this form of dialysis does not address the problem that 15% of dialysis patients eventually die from lack of vascular access for dialysis, but instead makes it worse by overusing the vasculature.  Also, the elevated rates of cancer and toxic cytokine release in dialysis patients are a function of the amount of time spent on the machine, and short daily dialysis is not an answer to these issues.  Further, since the half-life of cadaver transplants is about 20 years, while that for living donor transplants is 30 years, short daily dialysis remains far behind what transplant can achieve.  Finally, on short daily dialysis the crippling of the patient's lifestyle and freedom is intensified by the fact that the treatment interferes with life every single day forever, while a transplant recipient can live like a normal person, apart from swallowing a few pills twice a day.

It is also sad but true that since most transplant centers only use brain dead persons for organ harvesting, traffic accident victims are a major source of kidneys for transplant, along with stroke victims.  In fact the number of cadaver donor organs has been declining over the last few years in the developed world solely because the traffic accident death rate has declined due to safer cars and other safety measures!

[del]

For the most part dialysis treatment is the type that you choose to do (unless PD does not work anymore).  As I've posted in other threads it is an individual choice and people have different reasons for their choice.  My hubby does everything now that he did before he started dialysis 11 years ago.  more probably!!  I really don't like when people try to push there beliefs on other people by saying that only one type of treatment is the best.  Hubby had a really bad experience on Pd but I would never discourage anyone from doing PD.  I would however tell them that it doidn't work for hubby but for some people it works really well.  I started off trying to convince hubby to have a transplant.  I had all the tests done to donate one to him and he did not want to have the surgery.  I no longer try to influence him one way or the other it has to be his choice.  How would I fel f he had a transplant because of me pushing him and things didn't work out.  Maybe when hemo is not working well fr him at some point he may consider it but now it is not even an issue for him.  With nocturnal home hemo he has a way better quality of life than when he was in center (and he had a good quality then).  I agree people are not informed of all their choices when it comes to dialysis.  Nurses and people who work in the dialysis field are not always well informed.  last year we had to meet with a lady at our bank. While we were waiting for her we were talking to a friend who works at the bank about hubby's dialysis and how he was doing.  he was telling the fried about nocturnal dialysis that he was on. Duting the conversation the lady that we were supposed to be meeting with came out of her office and overheard part of the conversation.  When we went in the office she started asking us about dialysis and she was almost in tears when she told us her husband soon had to start dialysis.  The only types of dialysis the neph had mentioned to them was PD, in center and transplant. She knew nothing about the nocturnal program.  We gave her the names and numbers of people to contact .  She asked one of the nurses at the dialysis unit about getting into the program for nocturnal and she told her that someone would have to die for her husband to be able to be trained. That was totally wrong. What that nurse was talking about was him going in center for regular hemo .  The unit was full. Nocturnal training is done at another center.  Wish people would give out the right info.   I think everyone should be informed of all there choices up front.  We had to fight to even find out the info for having home hemo.

[Meinuk]

 For those who understand the English language, 'pretending' that something is a good reason when it is not does NOT refer to the speaker pretending something in a psychological sense, but proposing something which, in the logical sense, is not accurate -- i.e., which is a 'pretense' of what is true.

Condescending point made Henry.   It is great to have you around - it illuminates the fact that all of us plebes are so...  uneducated. Your command and use of the english language is only second to your pompous attitude.  (and I know attitude, I see it in myself every day)  If only I had read more in school, I wouldn't be such a mental midget standing next to you.  

But you know what, I'm ok with that, I wish you the best with your transplant and your various medical maladies, your voice adds depth to this tapestry of IHD.  

[del]

Stauffenberg may I suggest that you do some research on nocturnal home hemo where dialysis is done at least 5 nights a week for a long period ( 7 - 8 hrs). As for access people doing nocturnal usually use buttonholes which are supposed to make the a/v fistula last longer.  Supposed to be the cadallac of dialysis treatments!!!