My Transplant Decision

[neonblue]

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.

[angela515]

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.

[goofynina]

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 

[st789]

Now think of it, I think I confused myself too with forever???

[Wattle]

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?   

[tamara]

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?

Yeah it was the phone Wattle, but it was just some bloody Indian Telemarketer !  

[Wattle]

Yeah it was the phone Wattle, but it was just some bloody Indian Telemarketer !  

  OMG How true! I hate those telemarketers!

[angela515]

  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. 

[jbeany]

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.

[st789]

Wish you luck on waiting for a kidney Wattle.

Just like everyone else.  Good Luck...

[George Jung]

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?

[LightLizard]

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~

[mixplix]

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.

[livecam]

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!

[okarol]

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.

[st789]

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.

[okarol]

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!

[Amanda From OZ]

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  .

[Romona]

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.

[livecam]

Good thing you didn't take the "do nothing" option.  Your kids would miss you terribly.  Welcome to the site!

[Romona]

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.

[st789]

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.

[rimbo74]

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.

[okarol]

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!

[angela515]

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.