My Transplant Decision

[neonblue]

I have pondered for 4 year's now on if I wanted a transplant or not, and it has been a hard thing weighing all the pro's and con's, but finally I have decided that although ,yes, I hate dialysis, I do not want a transplant.Last week I had an appointment to go up to see the transplant doctor and find out how it all worked.As I read some of the info on my paper's ,I made the decision that it was not for me.I have no relatives to donate and honestly, I just do not want to go the transplant route, but am happy for people who do choose it and receive a kidney. It is a very personal choice and one that is not easy to make sometime's.

[MyssAnne]

I commend you for being honest. I am still wrestling with the issue of deciding. I hate dialysis, but I fear the cons of the transplant. I HAVE been encouraged by the success stories on here though.  It is a personal decision, either way. Only you can make it for yourself.

[keefer51]

It is a very difficult decision. I had a transplant about thirteen years ago. It lasted ten years. When i was on dialysis my brother gave me one of his. It was the greatest gift of love. But i will tell you i didn't want to go that route. I didn't want him to make that sacrafice. When i told everyone how i felt they all had thought i was crazy. This is what they would say: "If you love me you would do this." I caved in and well, read some of my posts to see what happened. I now sit on dialysis again and by myself i have no one saying anything. I don't want another kidney, I am getting used to the madness.

[okarol]

It is a very difficult decision. I had a transplant about thirteen years ago. It lasted ten years. When i was on dialysis my brother gave me one of his. It was the greatest gift of love. But i will tell you i didn't want to go that route. I didn't want him to make that sacrafice. When i told everyone how i felt they all had thought i was crazy. This is what they would say: "If you love me you would do this." I caved in and well, read some of my posts to see what happened. I now sit on dialysis again and by myself i have no one saying anything. I don't want another kidney, I am getting used to the madness.

I'm not sure I ever read... how is your brother that donated?

[kitkatz]

It is a big decision to make and it can only be left up to you to make the right one for you.  Do what is right for you and make your life the best it can be!

[Bette]

I understand your decision.  It is hard to give up the stability of dialysis, even though you hate it for the uncertainty of a transplant.  Some people have great success, and others transplants only last a few years. 

I had a transplant that lasted 13 years and I am on the list for a second transplant.  My husband doesn't want me to get a transplant because he is afraid that I will get worse.  I have to try for the transplant.  It's a tough call.  I support you either way.

[RichardMEL]

I think it would be really hard to say no to a transplant given that if everything goes well you could have 10 or more years of a mostly normal life free of dialysis, fluid and diet restrictions and all that stuff... However the big question for me is of the living donor... My MAIN concern is not so much for me (if it fails, it fails... and that would totally suck but that is life) but more what MIGHT happen to my donor.. I believe the decision will shortly (as in this week) be taken out of my hands when the docs decide it is too risky for my sister to go ahead with her wish to donate... but that's not the point really. I'd feel responsible/horrible if I did take a kidney from her and then something worse happened to her because of the missing kidney or the surgery or something.

If it was a cavadeer transplant I wouldn't worry about it. I mean it would be horrible that someone else had to pass away for me to have that opportunity, but it's not like something WORSE could happen to that donor (sorry if that seems rude or something or disrespectful) and hopefully it would be a good thing if the kidney could give me some extra time and function further.. it might give some small relef to the donors family specially if they died as the result of a car accident or something else senseless like that.

Still, I feel each to their own and what they are comfortable with..

[Sluff]

Epoman felt the same way and chose not to have a transplant. You may change your mind in time. It is your choice to make.

[neonblue]

I do understand everyone's points of veiw and support each decision all of you have made.I have had family member's ask me about them donating, but no I would not want them to , because of the diabetes issue in the family.As for a  donor who has passed due to an accident or something, I am unsure about the ethic's of it myself, but would not dream of  blaming anyone for making the choice of taking that route at all.If the donor/family has made the choice to give someone a new chance at life, then that is wonderful! I guess my issues with transplant is more along the line is it would fail and I would reject it, and the surgery itself and all the test's and the medicine you have to take, and how long would it last, and on , and on, so many thing's ,lol! I know that dialysis is crappy and I hate it with a passion, but right now, I am alive, even with all the health problems,I am still a person who want's to live for now.Even if I got a transplant , I would still have all the other health issue's.I can barely walk across the room without stumbling or falling and a transplant would not change that.If it was just one thing, the kidney failure, I might go for a transplant, or if I were younger, maybe. I'm 43,but with all the other thing's ,I just don't want to go through a transplant.

[Sara]

You probably already know this, but you can be listed and then when your turn comes up, you can turn it down if you want.  You're not obligated to go through with the surgery just because you're on the list.  I mention it only because if you change your mind down the road, it might save you some waiting time.  I respect your decision either way.   

[neonblue]

Hi Sara, we had discussed that at my dialysis  center, and it does bear thinking about, as a person may at some point and time change their mind, thanks Sara.

[keefer51]

Karol, my brother greg donated one of his kidneys to me. He is a advocate on being a donor. He is healthy and just has the big "worm" scar around his side. I am thankful for the 10 years but i can't stand to look at him in the summer when we go swimming. I see that scar and i feel so bad. The things that happened after the transplant should have never been. Sara i was led to beleive that the transplant would last forever. Some of them do. Mine i believe would have lasted longer. I don't know how your relitives feel about your decision. Mine of course beleive i should get help. So i did. I sat with a shrink for a week and told her what was on my mind. She gave me lexapro for depression. I said i'm not depressed i just don't want to go through that again. Sara i could be a very wealthy man if i taught a class on compassion. These health care workers need to take one. Again Sara i am on your side.

[tweetykiss]

Do you have any family or relatives who want to donate to you....I know this is a big decision for you....here I am ready to donate to my husband any day but the doctors keep telling us we are not at that point yet but he is at stage 4 though and his creatinne is 3.7 so I cannot understand what the holdup is.......I really don't want him on dials....now ir the roles were reversed, I would take the dials route for myself since I would have no problem with hemo and sitting for 4 hours since I can then sleep.....but I don't want my husband going through it......

[livecam]

A decision against transplant is nothing more than self denial of a normal, fulfilling life.  Life with a transplant vs. life on dialysis is incomparable.  A life on dialysis is a minimal existance where life with a transplant is complete life without rigid schedules, disability, deterioration, and all of the other side effects of dialysis.

I can not understand why any person would prefer to remain on life support when they can chuck the needles, the diet, the fluid restrictions, and the short leash that dialysis keeps them on.  Dialysis is ok when a person can't have a transplant or while waiting for one but it is hard to understand why anyone would want to live that way.

I remember the people who sat on the fence for years wondering if they should or shouldn't have a transplant.  What could they have been doing if they hadn't been tied to a machine or a garage full of PD supplies?

If a person is listed and then called for transplant the surgery can be cancelled at any time.  Why not get listed and wait to make that decision until after the phone rings?  Saying no is no problem at the last minute.  The transplant coordinator just picks up the phone and calls the next person on the list. Just sitting on the fence thinking about it only makes us older and sicker and wait times are long enough.

 Life makes sense and a transplant is life.

[RichardMEL]

I can certainly understand the OP's reluctance to accept a donation from a family member where there is a history of diabetes...there's a chance that donor could wind up with some form of kidney failure because of that... and who in their right mind would wish that on a fellow person, let alone a loved family member, if it could be possibly avoided?

While I agree mostly with what livecam says - certainly a transplant offers a far more normal life - for whatever period of time it works for - 5 months, 5 years, whatever... but I strongly support anyone's personal decision to go or not go as the case may be. It's our bodies and our lives.. and should be for each of us to decide what we want.

My only real concern would be that when a decision is made to be comfortable with that decision, but perhaps also to be open to the idea of changing ones mind should things change.

As for cavadeer donations... I'd go for it.. even with the surgery and the risks and whatever else.. frankly I'd rather give a shot at a more normal existance for whatever time with the rare gift that would present than stay on dialysis. If I reject... well I reject and yes that makes life much more difficult from thereon, but I also know of people who have had multiple transplants... and if something went wrong during the surgery? Well that is the risk you take. Heck, something could happen during my next dialysis session! I'd rather 6 months of a "normal" life than 6 months of dialysis anyday.

But that's just me. Everyone's mileage differs.

[okarol]

Karol, my brother greg donated one of his kidneys to me. He is a advocate on being a donor. He is healthy and just has the big "worm" scar around his side. I am thankful for the 10 years but i can't stand to look at him in the summer when we go swimming. I see that scar and i feel so bad. The things that happened after the transplant should have never been. Sara i was led to beleive that the transplant would last forever. Some of them do. Mine i believe would have lasted longer. I don't know how your relitives feel about your decision. Mine of course beleive i should get help. So i did. I sat with a shrink for a week and told her what was on my mind. She gave me lexapro for depression. I said i'm not depressed i just don't want to go through that again. Sara i could be a very wealthy man if i taught a class on compassion. These health care workers need to take one. Again Sara i am on your side.

Many living donors refer to their scars as a "badge of honor." Over and over I hear the same sentiment from them, "I would do it again in a heartbeat."
Keef, there are lots of wonderful living donor stories here http://www.livingdonorsonline.org/experiences/experiences.htm - maybe your brother would like to add his experience?

[keefer51]

Karol here is a funny story about his scar. My brother and his wife were out at a local bar having a few drinks. My brother got up and went to the mens room. As he was standing at the urinal he picked up his shirt with his free hand and started to scratch his scar. He noticed a man staring at him at the sink. Greg felt uncomfortable he felt he had to say to the man if he approached, "I'm sorry I'm not gay." Instead the man smiled and said lift up your shirt again please. Greg did and the man lifted his showing the scar from donating to his brother. Greg and this gentelman came out of the mens room arm and arm. Their spouse looked astonished. But everyone in that bar bought those guys a beer.

[RichardMEL]

awesome story!!!

[Lucinda]

I feel that everyone has the right to make their own decision about having a transplant and I certainly don't think it is a form of denial if you chose not to have one as Livecam has suggested.  My whole family has renal problems and some have done well on dialysis and others have don't well with a transplant but I personally would not even contemplate a transplant after seeing what members of my family have been through.  I applaud anyone who goes down that road and those who donate but I could never take a kidney from any of my friends who have offered me one.  This is my cross to bear and I can live with it.  Granted I have not started dialysis yet but I have had numerous access ops and I haven't had a good time of it thus far but I am certainly not going through denial.  I have had a terrific life and every day now for me is a bonus.  I have made a really personal choice and nocturnal dialysis I am sure is the best path for me. 

[goofynina]

Just know we are always here to support you in any decision you make Lucinda, we love ya girl and i hope no matter what, you stay happy

[angela515]

I personally respect anyones opinion and decision on having a transplant or not. It's obviously up to the person if they want one or not, but I do agree with livecam's post... I don't see why anyone would chose life support, instead of trying to live without it. My kidney from my mom lasted 5 years, I felt bad at first because i felt I maybe let my mom down, but she said she would do it again in a heart beat because she just wants me to able to live a normal life for as long as possible.. and besides, she got 2 grandkids out of it, and if I didn't have the transplant, my kids would not be here today. So I chose to be listed again, and I got the kidney in Jan, a perfet match, and they say if taken care of, could last a life time, or at least 20 years... I am only 28, so 20 years would only make me 48, I would get listed again if and when that time comes... I can't see myself choosing life support over the chance at a normal life. If you take the chance and it don't work and your back on dialysis, at least you tried.

Again, I still respect your decision, and it's brave of you to post it.

Angela

[thegrammalady]

i too have decided not to have a transplant, something my three kids are having trouble understanding. they are all willing to donate. my uncle thinks the entire family should step up and say "take mine" i'm sure if i was younger, i'm 56, i might feel differently. i no longer work and even though i'm not fond of getting up at 4am, dialysis fits quite well into my current schedule. when i want to visit my family in oregon, i can just pick up and go and stay as long as i want. the center there is great and i don't have to worry about getting back to a job. or finding available time to go in the first place. i can play with my grandchildren whenever i want, and i'm available to help my kids whenever needed. if i feel i "need" to work there are plenty of volunteer opportunities. it's a matter of choice, i've made mine and i'm comfortable with it. whatever choice you make, i'll back you 1000 per cent. and no livecam i'm not in denial.

[George Jung]

If anyone wants to donate their would be kidney to me I will be forever grateful.

[okarol]

The choice is an indvidual one... one size does not fit all.
The things I worry about with long term dialysis are bone density loss, resulting in brittle bones. There's also an increased risk of heart attack. The dialysis filters do their job, but the natural benefit of the chemical balance that a kidney provides is missing.
Of course, there's no free lunch regarding a transplant as the immunosuppressants can put you at risk for infections. Also an increased risk for skin cancer.
I think leaving your options open, and educating yourself, is best.
Each person has the right to choose what fits for them.

[st789]

Many factors and circumstances play into making this decision.

Like Epoman said transplant does not last forever.  Either way individual result is different for dialysis and transplant.