I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: goofynina on July 06, 2006, 05:16:09 PM
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Has anyone else had second thoughts about getting a transplant, I am not sure if it is for me, i am scared of all the side effects i hear about, i am scared of it failing and i dont even have it yet, i am scared of something going wrong with my donor, i am scared for MY life. Is it normal to have second thoughts?
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I have second thoughts all the time, too. I think about how life is now and what it would be like if I had a transplant. What about side effects, do I want them? What about all the meds and expenses with it? So the answer is yes, I definitely wonder if I am making the right decision in going for it.
Katherine
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Well I never had a transplant, because I was scared of the side effects and I am a constant worrier so I know I would be living in fear that todays the day my kidney rejects and I will have to start dialysis all over again. What to hear something funny? My wife and I are a match! :o BUT I want her to save it for our son if he ever needs it. Hopefully he will not need a kidney, but in case he does has my wife as a backup. We are all O+.
But it's a BIG decision that some people don't even stop to think of the consequences. Now a days the risks are alot better than 13 years ago. But bottomline is it's still a crap shoot. :-\
- Epoman
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I am not really considering transplant for lots of reasons - 1. there is no list in this country, although at least two people have had transplants (one in US and one in UK) It takes a lot of doing 2. I don't like the need for so many meds. 3. I wouldn't ask anyone in my family since my brother was on dialysis and my father died of kidney failure.
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Thank you guys, i thought i was all alone with this one, i am comforted to know that i am not... LOVE TO YOU ALL
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I am going to come out with a completely different response so I hope no one will hold it against me.
Costs associated with a transplant are something I hear a lot of you say but .... isn't a transplant much cheaper to maintain than dialysis?????
Sure it's not cheap but it's most certainly much cheaper!
I realize none of this is easy to handle from a financial perspective for people in the United States.
I feel so lucky that all my ESRD treatments in France have not cost me a single penny! Yes that's right zero, nada, zilch. And this includes hospitalization, doctor visits, meds, transportation ( taxi ), and basically anything related to the disease is paid for by social security.
Now before I respond to your question I will say two things that are important we keep in mind.
Yes whichever path we will take to treat our ESRD will never be perfect and will always be full of compromises but isn't a lot of it self inflicted fear? We tend to know sometimes too much, while this is to make a better judgment of the situation it doesn't always work in our favor from a psychological point of view.
Secondly I am sure anyone here will gladly voice their opinion but keep in mind that at all times the decision remains yours even faced to your closest peers ( friends and family ) as well as faced to any form of medical staff. The final word is yours and yours alone.
This being said I will say that the decision for a transplant was the most natural thing for me to consider.
I want to live independently and even if most days I feel like I am trying to fly with clipped wings I know that a transplant gives me a bigger chance of getting off the ground.
Since there were doubts about possible ESRD phrased in 1997 where the possibility of needing a transplant one day was mentionned till the time I knew it for a fact in november 2004 this disease was always in the back of my mind ( despite little to no contact with the medical world be it through doctors or medication during these years ). Has this long period that was a crossover between my teenage years to the beginning of my adulthood helped me mature my decision? I honestly could not say.
But back to november 2004 when I knew my "time" was up, a transplant was immediately the first option in my mind.
Don't some of us feel that dialysis isn't living but just surviving??
When I came back to france end of january 2005 I did hemo for a month or and then pd till may 2006 when I had to return in hemo due to ineffective treatment and life endangering blood lab results. It may have been a coincidence, but weeks before I learned about my need to return in hemo I finally came to understand and accept the fact that one day I would be going back to hemo ( I was thinking in a long time after I had had a transplant and that one failed ).
Let me tell you that the month I spent in hemo was hell. Low bp, headaches, sleeplessness etc.
I accepted hemo as it was but my body could not tolerate it.
I got the call for my transplant 6/20.
Since my transplant I honestly haven't felt any better in years.
As a new transplanted person I realize it is too soon to voice my experience as a success story but so far so good!
I will finish by saying that my time in the hospital for the transplant was the most positive experience I ever had while in the hospital. I was in a transplant patient only service and I met a lot of people who were first and second time transplanteds and the positive vibe in the air was surreal.
I had a lasting smile on my face for the first time in a what appeared to be years but I was merely a reflection of the others.
I also accept the fact that one day I will have to go again through the hell of dialysis but until then I will live my life to the fullest with what I was lucky enough to be offered for the time being.
In conclusion if I were to compare dialysis and a transplant I would say with dialysis you have no outcome, no light at the end of the tunnel ( apart from a potential transplant? ). Every week a chunk of your life sucked away, like living in a jail without walls to which you continuously have to return.
With a transplant I have liberty to look forward too. A fresh brand new start that will be a blessing regardless of the length it lasts.
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Jdat. How much "Prednisone" do they have you on! GEEZ >:D (Just Kidding)
I'm so happy for you! I know what you are feeling, and when I read your words it made me remember the exhilaration. My comparison of dialysis to a transplant was: A zombie in Dawn of the Living Dead to Julie Andrews in The Sound of Music! (sorry, I don't know if you have ever seen those movies)
When I was 25 and on dialysis, there was NO doubt in my mind that I wanted a transplant! And, I had a great one that lasted 17 years. The hardest part for me was losing it. It was a year and a half of walking the plank. I just wanted to die and die fast.
I'm on the list again, but I'm not as anxious to get one. I know I can't top the last one.
A lot of it depends on "HOW MUCH YOU HATE DIALYSIS."
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haha Rerun.
I was dreading the return on the prednisone but I am already down to 30 mg ( from 70 at first right after the transplant ) and I have unfortunately already gained some weight.
When I was in the hospital I said WOW I FEEL SO GREAT and they said the prednisone could be to blame for that :D
The post was so long as I typed it during my train ride to the hospital this morning for a post-transplantation consult and I just put it online now that I got home.
And what a nice comparison with the movies. I love the sound of music! Actually thanks for nothing for reminding me that I don't own the movie! I wanted to buy it before I left the US and I didn't get around to it :D
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I have had a transplant before and it was literally like waking from a dream since I was sick since birth. I had not known the "awake" feeling that healthy people take for granted. I will never forget what transplant is like yet the msn group I belong to (Dialysis & Transplant City) always goes on about how at-home hemo dialysis is Superior to transplantation because of the pure fact that it is temporary. But I know from first hand experience what it was like .. being on PD... getting a transplant .. all the medication side effects ... the rejection that could be saved .. more years with my transplant .. knowing my time was running out ... putting work before my health because I was trying to get the promotion before I would have to lose my job (it was a 12-hr shift job .. no way you can keep that with dialysis!!) .. and then ultimately rejection ... PD ... peritonitis ... and then HD ... low BP ... cramps ... and a hard time finding my correct tissue weight since with my Peritonitis I became malnourished.
Through my experiences ... I would say ... yes a transplant is better than dialysis ... but that is only for me and everyone feels differently. D&T City seems to think that people should hold of on transplants because of all the terrible side effects of the medications.
I do have one question which it seems no one will answer: How many transplants can a person have?
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I have had a transplant before and it was literally like waking from a dream since I was sick since birth. I had not known the "awake" feeling that healthy people take for granted. I will never forget what transplant is like yet the msn group I belong to (Dialysis & Transplant City) always goes on about how at-home hemo dialysis is Superior to transplantation because of the pure fact that it is temporary. But I know from first hand experience what it was like .. being on PD... getting a transplant .. all the medication side effects ... the rejection that could be saved .. more years with my transplant .. knowing my time was running out ... putting work before my health because I was trying to get the promotion before I would have to lose my job (it was a 12-hr shift job .. no way you can keep that with dialysis!!) .. and then ultimately rejection ... PD ... peritonitis ... and then HD ... low BP ... cramps ... and a hard time finding my correct tissue weight since with my Peritonitis I became malnourished.
Through my experiences ... I would say ... yes a transplant is better than dialysis ... but that is only for me and everyone feels differently. D&T City seems to think that people should hold of on transplants because of all the terrible side effects of the medications.
I do have one question which it seems no one will answer: How many transplants can a person have?
I don't think there is a limit. I knew one person he was on his 5th. He finally died.
But to jdat, nice post and don't worry I won't ban you for being so positive. :o ;D ;) I am just glad that you are happy and everything is working out for you. Thank you for all of your wonderful posts recently. But now you got me wishing I had tried the transplant route. :'( Oh well, maybe if I HAD gotten a transplant I would have never created this site. :)
- Epoman
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But to jdat, nice post and don't worry I won't ban you for being so positive. :o ;D ;) I am just glad that you are happy and everything is working out for you. Thank you for all of your wonderful posts recently. But now you got me wishing I had tried the transplant route. :'( Oh well, maybe if I HAD gotten a transplant I would have never created this site. :)
- Epoman
And that would be UNTHINKABLE!!!!
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Epoman. I would think that a transplant is still an option for you. What am I missing?
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Oh well, maybe if I HAD gotten a transplant I would have never created this site. :)
- Epoman
I totally understand what you mean by that but at the same time it frustrates me that there tends to be this gap in the Esrd community.
We are all going through the same troubles but we handle it through different means. I know some transplanted people who have alienated the dialysis community once they got a transplant but that's just being in denial!
What I most appreciate about this site is there's an option to discuss anything related to the disease. You know as much as me that we can't close this thing into a small box.
Not sure if you will understand the metaphor but it is quite similar to deaf parents refusing that their kid gets a cochlear implant because otherwise he would miss out on the deaf community.
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I know some transplanted people who have alienated the dialysis community once they got a transplant but that's just being in denial!
What I most appreciate about this site is there's an option to discuss anything related to the disease. You know as much as me that we can't close this thing into a small box.
I had done that. But I was just a teenager and really wanted to finally fit in since I was sick literally since birth. This time around however, I realize I must put my health first and not pretend I am like everyone else. This time I want to spread the knowledge about dialysis and transplantation and organ donation!
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I was very scared to the side effects of the anti-rejection meds, but I was more scared of dialysis. I was on hemo for a year and I had a very rough time. I'll tell the long story another time.
I had my transplant in October of '02. My half cousin gave me a kidney on her birthday. Isn't that amazing! What I discovered is that while I did have some problems with the meds, I was way better off than on dialysis. I also had a lot more time! lol. The thing that a lot of people forget is that there are about a half a dozen different meds out there, and if you have a really rough time with one, they can switch you.
I am lucky though, in that I chose a transplant center that offers a steroid avoidance protocol. I am on Myfortic (a drug similar to cellcept but with fewer side effects) and Rapamune. I was on Prograf but it caused some slight kidney damage which has reveresed itself since I switched to the myfortic.
I dread the thought of dialysis again, but could probably do it if I thought there was the chance of getting another kidney. I have a life again, which I didn't fully have while on dialysis. My last 6 months on dialysis I thought I was feeling quite well, but after the transplant, boy did I turn out to be wrong.
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I was very scared to the side effects of the anti-rejection meds, but I was more scared of dialysis. I was on hemo for a year and I had a very rough time. I'll tell the long story another time.
I had my transplant in October of '02. My half cousin gave me a kidney on her birthday. Isn't that amazing! What I discovered is that while I did have some problems with the meds, I was way better off than on dialysis. I also had a lot more time! lol. The thing that a lot of people forget is that there are about a half a dozen different meds out there, and if you have a really rough time with one, they can switch you.
I am lucky though, in that I chose a transplant center that offers a steroid avoidance protocol. I am on Myfortic (a drug similar to cellcept but with fewer side effects) and Rapamune. I was on Prograf but it caused some slight kidney damage which has reveresed itself since I switched to the myfortic.
I dread the thought of dialysis again, but could probably do it if I thought there was the chance of getting another kidney. I have a life again, which I didn't fully have while on dialysis. My last 6 months on dialysis I thought I was feeling quite well, but after the transplant, boy did I turn out to be wrong.
exactly! :) I couldn't say it better myself! I belong to another site where it is all mainly nurses and they keep trying to say that since kidney transplants are temporary that people should just stay on hemo home dialysis but there are so many who can't have that for various reasons making transplantation a desired thing. I remember when I had mine! Nothing made me feel as well as a transplant and I was able to do a pretty difficult job for 9 years and if only the transplant lasted just a bit longer I could have had job-given benefits and a very good raise and more!
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When considering transplant all sorts of thoughts race through our minds. The decision for me was an easy one becasue I knew well at 43 years of age what life was like before dialysis and I expected to get it back with a good transplant. I hated being captive in that chair three evenings a week while holding down my job during the day. I hated not being able to travel easily or eat and drink what I wanted. I opted for transplant from the beginning and was very proactive about making it happen. The dialysis unit although a very good one was a little chamber of horrors. I remember vividly the older patients, some suffering from dementia, the screaming, the blood spills, the alarming machines, the deaths during treatment, and the pain. It truely was hell on earth and it was to be escaped from at any cost. Some prospective patients worry about the side effects of transplant and I say what side effects? I remember the side effects of dialysis really well, the blood pressure swings, the bloated sick feeling of having taken on too much fluid, the weakness, the yellowing of my skin, being one of the living dead. The experience was in a word disgusting. Transplant changed all of that. I got my life back. I go wherever I want whenever I want. I feel good again. My life is intact and as it was before. I hated dialysis and never want to go back. Transplant you say? I would say yes again without a second thought.
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Some prospective patients worry about the side effects of transplant and I say what side effects? I remember the side effects of dialysis really well, the blood pressure swings, the bloated sick feeling of having taken on too much fluid, the weakness, the yellowing of my skin, being one of the living dead. The experience was in a word disgusting. Transplant changed all of that. I got my life back. I go wherever I want whenever I want. I feel good again. My life is intact and as it was before. I hated dialysis and never want to go back. Transplant you say? I would say yes again without a second thought.
Ya I am on the transplant list :) THe only thing is after the first transplant it gets harder to get another transplant once the first one rejects because of the antigens.
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Here's something to think about when worrying about losing the kidney before you even get one. When I had my transplant, I met a lady that got her second kidney the same day I did (Oct. 2002). She had been on dialysis for one year before she was able to have this surgery. Her first kidney was from a cadaver. She received the kidney in 1971. It lasted 30 years! There is no way to tell how long your graft will last, but there is always hope that you and I will be like this lady.
Cora
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Yes there are many life threatening and very unpleasant sideffects associated with transplants. Yet the upside is immesurable. I certainly was able to live a relatively happy, productive, and healthy life away from dialyis for almost 24 years out of 30 years thanks to the deceased donor. Given the immensely advanced immunosuppresing technology since then you all should give it a good thought.
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My only reservations about having a second transplant are the steroids. If it wasn't for that drug I would happy about another one. As it is I am going through the hoops to get on the list in Spokane this time. I would rather hold out until the medical community reaches the no steroid protocol for second transplants like is being done in some places in Europe but that may be a long as* wait. They probably will clone kidneys before that protocol reaches the US nationwide.;D
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They probably will clone kidneys before that protocol reaches the US nationwide.;D
Lets hear it for cloned kidneys .. no rejection, ever!
:beer1;
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They probably will clone kidneys before that protocol reaches the US nationwide.;D
Lets hear it for cloned kidneys .. no rejection, ever!
:beer1;
I hate to be a spoil sport, but even identical twins will have to take some antirejection meds if one gives a kidney to another. They do stand a much better chance of having a longer lasting graft though.
Cora
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I'm looking back on five good years with a good transplant. There is no comparison to the years I was on dialysis and the years I was sick before starting it. Jumping through all of the hoops during evaluation and listing is a piece of work. The thought of going to surgery is scary. I remember looking up from the table at almost the last moment and saying that we really didn't have to do this. As a patient I could have pulled the plug on it right there, its our right. Good thing I didn't. No more dialysis.
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I'm looking back on five good years with a good transplant. There is no comparison to the years I was on dialysis and the years I was sick before starting it. Jumping through all of the hoops during evaluation and listing is a piece of work. The thought of going to surgery is scary. I remember looking up from the table at almost the last moment and saying that we really didn't have to do this. As a patient I could have pulled the plug on it right there, its our right. Good thing I didn't. No more dialysis.
Livecam I know the feeling. I'm so happy for you! When is your anniversary??
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My husband and I wondered -- what if they can grow kidneys soon, should we wait?
What if Jenna has trouble from the surgery, an infection, or worse? What about the meds, the side effects, the cancer risk? It's pretty overwhelming. Jenna is so young, we just knew that dialysis for her was barely keeping her above water. More will be revealed as we watch how her transplant works out.
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Carol, dialysis was not only keeping Jenna "above water".....it was keeping her alive. The "what if's" are just as great for dialysis.
What if her fistula breaks open during the night and she bleeds to death?
What if her blood pressure drops too low during dialysis and she goes into cardiac arrest?
What if she gets hit by a truck tomorrow?
I guess you never know.
I would rather have a transplant one day and die than be sentenced to dialysis for the rest of my life.
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Rerun...it was November 8th of last year.
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Carol, dialysis was not only keeping Jenna "above water".....it was keeping her alive. The "what if's" are just as great for dialysis.
What if her fistula breaks open during the night and she bleeds to death?
What if her blood pressure drops too low during dialysis and she goes into cardiac arrest?
What if she gets hit by a truck tomorrow?
I guess you never know.
I would rather have a transplant one day and die than be sentenced to dialysis for the rest of my life.
I agree! And I hope that with how 2 members already got a transplant that more of us will this year! :2thumbsup;
The medications are supposedly better now then years ago with my last one! Some places even go No Steriods! :thumbup;
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I agree! And I hope that with how 2 members already got a transplant that more of us will this year! :2thumbsup;
The medications are supposedly better now then years ago with my last one! Some places even go No Steriods! :thumbup;
No steroids here!! :thumbup; I took Prednisone the first 2 days then none... woohoo.
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Angela, how can they go steroid free? How do they explain that to you? :urcrazy;
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Whatcha mean how can they go steroid free? They just do. LOL, uhm my surgeon told me before the surgery his plan was to use Prograf and Rapamune and Prednisone for the first couple days but then go steroid free. I was VERY happy with that since I was taking prednisone since age 12-18, then again after my first transplant until it failed and I started dialysis. So I hate the drug... and I am very glad to not be on it. The medicines i'm on work wonders, no need for prednisone.
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Same with Jenna's transplant - she had prednisone
in the hospital for 3 days - then no more - ever!
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Whatcha mean how can they go steroid free? They just do. LOL, uhm my surgeon told me before the surgery his plan was to use Prograf and Rapamune and Prednisone for the first couple days but then go steroid free. I was VERY happy with that since I was taking prednisone since age 12-18, then again after my first transplant until it failed and I started dialysis. So I hate the drug... and I am very glad to not be on it. The medicines i'm on work wonders, no need for prednisone.
What was your PRA percentage?
My understanding is that the steroid free protocol is for the most part for those with lower PRA percentages.
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Oooh I want to know more about this as well! Please more detail about how going Steriod Free is better or worse for certain people and why don't all hospitals go Steriod Free! :2thumbsup;
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Angela, how can they go steroid free? How do they explain that to you? :urcrazy;
I had my transplant in October 2002. I had my work up in 2001 and at that point they discussed the steroid avoidance with me. I have no idea what my PRA was, I just know that I was on prednisone for about a week, and that was it. I have been steroid free ever since. I started on prograf and rapamune, but last January my creatinine shot up (it had been creeping up for a while) and we discovered that there was some minimal scarring from the prograf. I've now been on myfortic (similar to cellcept but fewer side effects) for almost a year and my Cr. has been perfectly stable and at the level it had been the first year after my transplant.
I just love the steroid avoidance.
I'm now getting listed for a pancreas too. At Fairview in Minneapolis they are now doing pancreas transplants without prednisone. I'm a sucker for surgical punishment! lol
Cora
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Good luck! That is great news! :thumbup;
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The PRA is a factor in the steroid use. My transplant center has a 3 day protical for steroids, but I have been told that mine would be longer because of my PRA - I don't care, just give me a kidney. :thumbup;