I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: neonblue on June 03, 2007, 01:02:02 PM

Title: My Transplant Decision
Post by: neonblue on June 03, 2007, 01:02:02 PM
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.
Title: Re: My Transplant Decision
Post by: MyssAnne on June 03, 2007, 01:09:40 PM
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.
Title: Re: My Transplant Decision
Post by: keefer51 on June 03, 2007, 03:16:22 PM
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.
Title: Re: My Transplant Decision
Post by: okarol on June 03, 2007, 03:17:53 PM
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?
Title: Re: My Transplant Decision
Post by: kitkatz on June 03, 2007, 08:30:25 PM
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!
Title: Re: My Transplant Decision
Post by: Bette on June 03, 2007, 08:55:53 PM
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.
Title: Re: My Transplant Decision
Post by: RichardMEL on June 03, 2007, 09:02:12 PM
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..
Title: Re: My Transplant Decision
Post by: Sluff on June 04, 2007, 05:09:08 AM
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.
Title: Re: My Transplant Decision
Post by: neonblue on June 04, 2007, 05:25:21 AM
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.
Title: Re: My Transplant Decision
Post by: Sara on June 04, 2007, 05:34:48 AM
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.   :cuddle;
Title: Re: My Transplant Decision
Post by: neonblue on June 04, 2007, 06:19:18 AM
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.
Title: Re: My Transplant Decision
Post by: keefer51 on June 04, 2007, 07:04:13 AM
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.
Title: Re: My Transplant Decision
Post by: tweetykiss on June 04, 2007, 07:21:53 AM
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......
Title: Re: My Transplant Decision
Post by: livecam on June 04, 2007, 07:42:41 AM
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.
Title: Re: My Transplant Decision
Post by: RichardMEL on June 05, 2007, 10:21:23 AM
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.
Title: Re: My Transplant Decision
Post by: okarol on June 05, 2007, 10:39:07 AM
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?
Title: Re: My Transplant Decision
Post by: keefer51 on June 05, 2007, 07:21:20 PM
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.
Title: Re: My Transplant Decision
Post by: RichardMEL on June 05, 2007, 11:22:18 PM
awesome story!!!
Title: Re: My Transplant Decision
Post by: Lucinda on June 06, 2007, 03:05:35 AM
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. 
Title: Re: My Transplant Decision
Post by: goofynina on June 06, 2007, 08:35:45 PM
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 ;) ;)
Title: Re: My Transplant Decision
Post by: angela515 on June 06, 2007, 08:53:29 PM
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
Title: Re: My Transplant Decision
Post by: thegrammalady on June 07, 2007, 08:27:23 AM
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.
Title: Re: My Transplant Decision
Post by: George Jung on June 07, 2007, 09:02:42 AM
If anyone wants to donate their would be kidney to me I will be forever grateful.
Title: Re: My Transplant Decision
Post by: okarol on June 07, 2007, 10:17:06 AM
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.
Title: Re: My Transplant Decision
Post by: st789 on June 07, 2007, 06:48:14 PM
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.
Title: Re: My Transplant Decision
Post by: neonblue on June 07, 2007, 07:08:05 PM
There are some great post's here and I am alway's interested in everyone's input whether I agree or not.It is a matter of respect as I have seen a little of everything in my 4 year's of dialysis. But whatever path you choose, everything, I feel personally, is a roll of the dice.I am just glad that some of us get the choice of transplant or not.I have met alot of patient's who don't because of one reason or another.
Title: Re: My Transplant Decision
Post by: angela515 on June 08, 2007, 02:34:49 PM
transplant does not last forever. 


Depend on what age you get it... depends on alot of things actually... it could. :)

Of course in most circumstances it don't... but it an last a long time... and anytime off dialysis and living normal... is good enough for me. :)
Title: Re: My Transplant Decision
Post by: goofynina on June 08, 2007, 03:38:50 PM
transplant does not last forever. 


Depend on what age you get it... depends on alot of things actually... it could. :)

Of course in most circumstances it don't... but it an last a long time... and anytime off dialysis and living normal... is good enough for me. :)


Forever is a long time, us ourselves will not last forever either, let's say you get a transplant and in 5 years, you unexpectedly die from something else and your kidney is still working, well, that was your forever right?  So i think it depends on how you look at it (i think) i think i have just confused myself  :urcrazy;
Title: Re: My Transplant Decision
Post by: st789 on June 08, 2007, 03:56:06 PM
Now think of it, I think I confused myself too with forever??????????????????????????????

Title: Re: My Transplant Decision
Post by: Wattle on June 08, 2007, 06:30:38 PM
I have grown up around KD. PKD being the culprit. I have seen the good, the bad and the very very ugly side of both dialysis and transplant. My father died at 41 yrs after only 10 years of dialysis. In that time everything that could be thrown at him was. He was also a home haemo patient so I saw it first hand. He had two failed transplants that only lasted a few weeks. He also gave PD a try. He was very compliant but his body wasn't!

My point is, I have made my decision to take a chance on a transplant after every thing I have seen. Every way you look at it... its ugly. Renal disease is ugly and for life. Dialysis and transplants are only treatments. But if a transplant works for a while to give me a more 'normal' life I am going to give it a go. The whole transplant process has improved so much in 25 years and I believe it will lengthen my life.

It is a personal choice and everyone is different. Some of us will do very well on long term dialysis and some will not. I don't want to see which one I am. I will take the chance at a transplant and see what happens. Wish me luck. Waiting....waiting.....waiting.... Is that the phone?    :P
Title: Re: My Transplant Decision
Post by: tamara on June 08, 2007, 06:50:45 PM

I have grown up around KD. PKD being the culprit. I have seen the good, the bad and the very very ugly side of both dialysis and transplant. My father died at 41 yrs after only 10 years of dialysis. In that time everything that could be thrown at him was. He was also a home haemo patient so I saw it first hand. He had two failed transplants that only lasted a few weeks. He also gave PD a try. He was very compliant but his body wasn't!

My point is, I have made my decision to take a chance on a transplant after every thing I have seen. What every way you look at it... its ugly. Renal disease is ugly and for life. Dialysis and transplants are only treatments. But if a transplant works for a while to give me a more 'normal' life I am going to give it a go. The whole transplant process has improved so much in 25 years and I believe it will lengthen my life.

It is a personal choice and everyone is different. Some of us will do very well on long term dialysis and some will not. I don't want to see which one I am. I will take the chance at a transplant and see what happens. Wish me luck. Waiting....waiting.....waiting.... Is that the phone? :P


Yeah it was the phone Wattle, but it was just some bloody Indian Telemarketer ! :banghead;  ;)
Title: Re: My Transplant Decision
Post by: Wattle on June 08, 2007, 06:59:38 PM


Yeah it was the phone Wattle, but it was just some bloody Indian Telemarketer ! :banghead;  ;)

 :rofl; :rofl; OMG How true! I hate those telemarketers!
Title: Re: My Transplant Decision
Post by: angela515 on June 08, 2007, 08:19:50 PM
 :lol; Susie!

I persoally believe transplant as a treatment... and dialysis as life support, not really a treatment. Idunno, I just like to view it that way... maybe it cheers me up, i'm not sure.  :urcrazy;
Title: Re: My Transplant Decision
Post by: jbeany on June 08, 2007, 10:25:08 PM
I'm on the list, and hoping for the call, so I'm in the "want a transplant" group.  I've not encouraged my sister in her thoughts about giving me a kidney at all, though.  I just can't wrap my head around risking her life to make mine easier.  Add in a family history of adult diabetics; the money issues, including the fact that she might even risk losing her job, let alone the cash she'd lose by not working during the recovery period; the fact that I would likely not be able to get a pancreas transplant after getting a live donor kidney; and finally, that she has a child who needs his mother far more than he needs his aunt, and I just can't see enough good reasons for her to be a donor.  With a cadaver transplant, I'm not risking anyone's life but my own.
Title: Re: My Transplant Decision
Post by: st789 on June 08, 2007, 11:05:17 PM
Wish you luck on waiting for a kidney Wattle.

Just like everyone else.  Good Luck...
Title: Re: My Transplant Decision
Post by: George Jung on June 09, 2007, 09:34:00 AM
I would never ever push someone into donating.  That being said, if a person were to come into my life and offer to donate I would be moved by the offer.  Even more, if they are educated (about donating) and sincere in their wish I would most likely not turn them down.  The risks are minute for a living donor and the reward must be beyond what one would imagine.  Hell, it makes me feel good knowing that when I die I may be helping someone, if I could do it while I was alive and live to see the life I helped provide, that would be priceless.

If you receive a transplant and die 5 years later in a car accident can they use that kidney again?  I have never heard of such a thing happening and I doubt it could/would take place but what do you think?
Title: Re: My Transplant Decision
Post by: LightLizard on June 09, 2007, 11:48:08 AM
Of course, this is a decision everyone must make for themselves.

For me, I have no desire for a transplant, but I can see and appreciate the concept from the perspective of someone younger than I. As I've said elsewhere, I have had a fairly good life and at the age of 58, I have no complaints about my life. It would be nice to live longer and in a healthier condition, surely, but there are so few donor kidneys available, and many who are in need that have not lived as long as I have.

Both of my daughters offered me one of their kidneys. I could not accept such a gift from them.
Unless my condition deteriorates suddenly, and it is the only option, and one becomes available, I might accept a cadaver kidney, under those conditions.

But my condition is due to a different cause than most people's kidney problems, I think. My kidneys failed because of my having hepatitis C from the age of two, the effect it had on my blood pressure and eventually, my kidneys.

Since I've been on dialysis, the doctors have not metioned my hep C once, and since the interferon almost killed me, there has been no mention of any treatment options for it.
 It is likely, that if I did receive a kidney transplant, that the hep C would simply do the same thing to it that it has done to my kidneys already.
I'm (relatively) happy on dialysis!

love

~LL~
Title: Re: My Transplant Decision
Post by: mixplix on August 07, 2007, 07:19:25 AM
I know this is kind of an old thread, but I hope you don’t mind me adding my comments.. I also find myself not wanting to get on the transplant list, again. I have already had one transplant, donated by a friend. It didn't last very long, due to I couldn't pay for the pills. I was worried about this before the surgery, but everyone like the social workers and everyone said to just get it and worry about that stuff later. My rejecting kidney swelled up to 3 times the normal size and had to be removed, it nearly killed me. Now everyone, including my Doc, is bugging me to get back on the list. The transplant center is four hours away. I don’t have a car. I can’t even make it to my transplant evaluation, let alone leave at a moments notice. They also want to see you every week for a while after. This was a problem last time as well. All things considered, I just don’t think it is worth it to me. People think I am crazy, they think when you get the transplant it’s a cure. Well, we know that is not true!  At my age, 35, a twenty year transplant would only last to 55. Then I would need number three. If it only lasts the average of 3 to 5 years like usual, then I would need lots of transplants.  People have no idea how hard it is to be disabled, suddenly you get a kidney and you are no longer disabled. You will lose medicare, and or state Medicaid, at least I did. I lost my disability too. Suddenly you need a job to live, it is very hard to get a job, a good job, after being gone from the workforce for years. No recent references.  There are many factors people just don’t understand, unless they have been there. I have, and it wasn’t that great.
And I hear some saying that there are places to get your pills from, cheap or free. Well, I checked that. Didn’t work. Why? Well, the Doc wouldn’t write me a prescription refill. He wanted to get paid for it, I had no insurance anymore, so free pills with no RX is worthless. It’s certainly not as easy as it sounds. I am not trying to stop anyone from getting a kidney, especially young people, but keep in mind what may happen to you after. There’s a lot to think about.
Title: Re: My Transplant Decision
Post by: livecam on August 07, 2007, 07:52:11 AM
I know this is kind of an old thread, but I hope you don’t mind me adding my comments.. I also find myself not wanting to get on the transplant list, again. I have already had one transplant, donated by a friend. It didn't last very long, due to I couldn't pay for the pills. I was worried about this before the surgery, but everyone like the social workers and everyone said to just get it and worry about that stuff later. My rejecting kidney swelled up to 3 times the normal size and had to be removed, it nearly killed me. Now everyone, including my Doc, is bugging me to get back on the list. The transplant center is four hours away. I don’t have a car. I can’t even make it to my transplant evaluation, let alone leave at a moments notice. They also want to see you every week for a while after. This was a problem last time as well. All things considered, I just don’t think it is worth it to me. People think I am crazy, they think when you get the transplant it’s a cure. Well, we know that is not true!  At my age, 35, a twenty year transplant would only last to 55. Then I would need number three. If it only lasts the average of 3 to 5 years like usual, then I would need lots of transplants.  People have no idea how hard it is to be disabled, suddenly you get a kidney and you are no longer disabled. You will lose medicare, and or state Medicaid, at least I did. I lost my disability too. Suddenly you need a job to live, it is very hard to get a job, a good job, after being gone from the workforce for years. No recent references.  There are many factors people just don’t understand, unless they have been there. I have, and it wasn’t that great.
And I hear some saying that there are places to get your pills from, cheap or free. Well, I checked that. Didn’t work. Why? Well, the Doc wouldn’t write me a prescription refill. He wanted to get paid for it, I had no insurance anymore, so free pills with no RX is worthless. It’s certainly not as easy as it sounds. I am not trying to stop anyone from getting a kidney, especially young people, but keep in mind what may happen to you after. There’s a lot to think about.


Mixplix you are so right, there is much to think about.  I like to advocate in favor of transplants because of what one has done for me. 

Kidney disease is one of the most debilitating conditions around.  People just don't get the concept of how this disease can wreck a life until it happens to them. 

I've discussed the issues you mentioned in your post with others who have the same questions.  Where is employment and insurance going to come from after the transplant?  What about work and the years a person couldn't? 

Then you have to think to yourself about what is life going to be like on permanent dialysis.  How long will a person last?  How much satisfaction will a person get in life on long term dialysis?  In my case I never wanted those questions answered...I went for the transplant and didn't look back.

The issues of insurance and coverage for the meds I think can be solved.  Once a patient leaves Medicare at 36 months out I am certain that most state's plans will cover those needs if there is no other way to do it.  I just can't see any responsible state government allowing a patient to reject over lack of ability to pay for those meds.

A life on dialysis where transplant is an option is no way to live.  The other stuff is solvable.  A good transplant is better than a pot-o-gold. 

I'm not going to tell you what to do..well maybe I am because I would say screw it and try again!
Title: Re: My Transplant Decision
Post by: okarol on August 07, 2007, 08:41:38 AM
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.

Epoman was actually considering getting a transplant. He asked his brother, which was a disappointment, but I think he was coming around to the idea that perhaps it would be worth doing.
Title: Re: My Transplant Decision
Post by: st789 on August 07, 2007, 09:31:15 AM
Mixplix and Livecam u 2 brought up a very important pt. the many factors must consider after a success kidney transplant.  Jobs with benefits to pay for medications and the stress come with it.  Outsiders have no clues of these factors.

As for decision to go for transplant, I am not pro or con.  As mentioned in one of the early post by Rerun, She has her for 20 yrs. and a friend of her   passed away after 1 month.  Is a tough call. ??? ??? ??? ??? ??? ??? ??? ??? ??? ??? ??? ???
Title: Re: My Transplant Decision
Post by: okarol on August 07, 2007, 09:34:18 AM
Recent news is that Medicare may change the drug coverage rules after transplant http://ihatedialysis.com/forum/index.php?topic=4505.0
Contact your Representative today!
Title: Re: My Transplant Decision
Post by: Amanda From OZ on August 09, 2007, 09:15:53 PM
I missed this post. I have said my opinion on this subject so many times (on other threads) so i won't go into it again.

But all I'm going to say is if someone who is eligible for a transplant does not want one, they must be  :urcrazy;.

Title: Re: My Transplant Decision
Post by: Romona on August 10, 2007, 07:26:12 PM
I am new to this just joining today. I can't belive I have posted this much already. I got a transplant last year. I am so glad I did. I'll be 42 in September. The last 2 and a half years have been a wild ride.
The transplant hasn't been a walk in the park, but my quality of life is so much better. I'm glad I made the choice I did.
I can completely understand the choices people make. It has to be right for them.
I was give three options: Transplant. Dialysis or do nothing. I wanted the do nothing, I felt I had a good life. But as a Mom with 4 kids I just couldn't do it.
Title: Re: My Transplant Decision
Post by: livecam on August 10, 2007, 07:45:24 PM
Good thing you didn't take the "do nothing" option.  Your kids would miss you terribly.  Welcome to the site!
Title: Re: My Transplant Decision
Post by: Romona on August 10, 2007, 09:25:41 PM
Everyone here is so great! I wish I would have found you guys a long time ago. I think when you are very ill, you don't think clearly. If I would have found this site earlier it would have made a big difference. Friends and family can sympathize, but unless they experience it themselves they can't relate. I felt really strange around the anniversary of my transplant and started talking to people I've met online. The support is incredible. I've been so inspired by so many.
Title: Re: My Transplant Decision
Post by: st789 on August 10, 2007, 09:58:42 PM
Yep, families and friends can show sympathy but unless they experience what we patients go through day to day with dialysis and the uncertain come with it, they are outsiders.

IHD is the best discover that I ever make for myself in term self-educating about kidney related and for unconditional supports.
Title: Re: My Transplant Decision
Post by: rimbo74 on August 11, 2007, 12:36:37 PM
I just recently had a tranplant, I'm a week and a couple of days removed from the surgery.  The way one feels after having the transplant is indescribable.  I no longer feel sick on a daily basis, have tons of energy where I never had much while on dialysis.  The aches are slowly going away and the surgery and hospital stay was truly uneventful.  Not saying its that case for everybody, but to be able to not be tied onto a machine and have energy to do stuff means so much.

For my brother, he is already driving, going to the pool.  He has a couple of little scars and one that is about 4 inches long on his lower abdomen at the waist line.  He feels its truly an honor to have given me his kidney knowing how much better I feel now.
Title: Re: My Transplant Decision
Post by: okarol on August 11, 2007, 05:55:29 PM
It's been 6 months since Jenna's transplant and I just watched her as she walked out the door. She is walking up to the market to get some food. She looks so good, her eyes, her hair, her skin -- everything looks normal and healthy - it's hard to believe she struggled with 6 years of kidney failure. She goes to the gym and she walks all over town - her energy is great and she's the most physically fit she's been EVER! If there could be a walking/talking advertisement for transplant -- she's it!
Title: Re: My Transplant Decision
Post by: angela515 on August 11, 2007, 08:26:57 PM
I'm blessed to have had 2 successful transplants, I just pray if I need a 3rd I get it and its great as these 2. :)