I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Amanda From OZ on August 15, 2006, 05:16:25 PM
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Hello ,
After reading a few posts of yours ......i am interested to know why you and others don't want a kidney transplant? I myself could not imagine spending the rest of my life on this machine ( i understand all the risk and complications.... but dint you think its worth the risk..... i would like to know what you all think about it..
also do i have read a few posts on here about transplants which were quiet negative (and even made me think twice) i think we should help promote transplants More, this might also help bring awareness for others abou the gift of life.
I love this site.. it is the best out there (i have been telling everyone at the hosp. about it..). but lets try to promote kidney transplant more than we do..... my father had a transplant 25 years ago, and my sister had hers 12 years and both r better than ever!! (TOUCH WOOD) They haven't had a easy life but they couldn't imagine anything any other way! there transplant has saved them, and made them live a healthy and full life. :)
Amanda
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Moved to correct section "Transplant Stories"
Rerun - Moderator
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I definitely want another one and as far as Im concerned it is worth the risk. I dont have a life on dialysis and I dont think I ever will if I stay on it. Even the nephs think Id be better off. I am more concerned about my quality of life, and I beleive a transplant may give me that, as it did the first time.
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hey..
yeah i totally agree..
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Hi I agree We (Hubby and me ) have just got the results of our cross match and he can't donate to me its abit dissappointing but I am still completing all my other tests so that I can get on the transplant list , but its a 5 year waiting list or longer. Apparently us Aussie's like holding on to our organs when we die .So far this year only 85 have been donated.
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an 8 year wait last I checked here in my Canadian Province.
I want another transplant myself but you have to understand why some people are worried and holding off. Everyone's situation is different and not every time you get a transplant will be successful. It would reject right there on the operating table! What a bummer that would be :(
But since my last one (the only one I have ever had) went well (11 years) I want another! I was working full time 12-hr shifts and working my way up the table and had a car and was renting a house and then when I lost it .. I lost everything! I want the chance to get all that back because how I am living right now is no way to live! I don't enjoy cabbing it or bussing it everywhere and I don't like living on government subsidized apartments that are so small that I have to get rid of half my stuff :( I want my life back! But I am hoping the medications are better with the next one than they were in 1990!
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If the kidney rejects quickly well Im prepared for that risk as well, at least I can say I tried. Plus my mum really wants to do it for me. Id rather the kidney didnt come from mum, but if it means not having to wait as long, and also being less chance for rejection, then Im prepared to do it. And I know she will probly be in more pain than me afterwards, and Ive got no problem looking after her as best I can.
Do you have any other family charee? Siblings are the best match you can get, or even better if you are a twin!
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Hello ,
After reading a few posts of yours ......i am interested to know why you and others don't want a kidney transplant? I myself could not imagine spending the rest of my life on this machine ( i understand all the risk and complications.... but dint you think its worth the risk..... i would like to know what you all think about it..
also do i have read a few posts on here about transplants which were quiet negative (and even made me think twice) i think we should help promote transplants More, this might also help bring awareness for others abou the gift of life.
I love this site.. it is the best out there (i have been telling everyone at the hosp. about it..). but lets try to promote kidney transplant more than we do..... my father had a transplant 25 years ago, and my sister had hers 12 years and both r better than ever!! (TOUCH WOOD) They haven't had a easy life but they couldn't imagine anything any other way! there transplant has saved them, and made them live a healthy and full life. :)
Amanda
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Bottom line is NO!, this site is not here to promote or discourage transplants, it's a place to get REAL stories and opinions from patients, sure there are transplant success stories, I know a few and on the flip side there are tragic stories, again I know a few. I really hate the term "A gift of life" because I don't have a transplant and I am still living, getting a kidney is not a cure it is just another form treatment for ESRD so how can it be called the gift of life, NOW if GOD himself came down and gave someone a new set of non-rejecting kidneys then and only then will I agree to the term "the gift of life". This site is here to hit people in the FACE with reality not to paint a pretty picture. A transplant can be a great experience and it can be a horror story, and THAT'S THE TRUTH.
Oh and to answer you question "why don't I want a transplant" well if you had read my threads as you say you have then you would already know my reasons. :) and I just may go for a transplant one day, I am not TOTALLY against it. ;)
- Epoman
Owner/Admin
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Epoman is correct! The newspapers do enough of that! But one thing I have learned about his sites is they are full of the truth that you cannot get anywhere else (even though I try on mine) and full of all the knowledge about a wide variety of things, all in one place, more than any place I have been to so far (and I have been to a LOT)!
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Yes i do understand what all of you are saying. But I PERSONALLY believe that anyone who is young and heathly, and doesnt want a kidney transplant is silly. Honestly everyone is scared... i amn terrified, but i need to do this for myself and my family.... i gotta atleast try.
But.. i do understand everyones opinion. :)
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Angie - When you hada transplant the first time what drugs were you on??
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Yes i do understand what all of you are saying. But I PERSONALLY believe that anyone who is young and heathly, and doesnt want a kidney transplant is silly. Honestly everyone is scared... i amn terrified, but i need to do this for myself and my family.... i gotta atleast try.
But.. i do understand everyones opinion. :)
This has NOTHING to do with being scared, it's about facing reality. It's your body and your right AND I wish you the BEST! :) I am not stopping you from encouraging members to try a transplant, but I will also not stop people from posting against transplants. Have I sometimes thought "what if, I had gone for that transplant 12+ years ago?" OF COURSE, do I regret not trying? yeah sometimes, but then I relize, I have seen people who have had transplants and DIE because of complications while I am still here, but again I also have seen people do VERY WELL with a transplant. I myself am only 33, well 34 this Thursday ;) and I am young, and I may go for it one day who knows ???
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I too was very enthusiastic about transplants after I received mine. I talked to two people that the transplant center hooked me up with because I was so positive. The one girl was really scared, but I talked her into it. She lived two weeks after her transplant. She was walking into her Nephrologists office and dropped dead of a stroke.
The other girl was 16 and not on dialysis yet. They had me talk to her parents (not her) I guess the girl was really in denial. Didn't think she was sick.... I was so positive and looked so good that I sold them on the idea. When the phone call came they had to pull her out from under the bed and drag her into surgery. She never came home. She died of complications.
When her father walked into my office, face streaked with tears, to tell me she died, I swore I would never talk anyone into a transplant again. You have to be "mentally" ready and no one should make you do it. You gotta WANT to do it. You gotta WANT it more than life itself.
I also think from that experience that everyone should experience dialysis before a transplant so you appreciate your new kidney.
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Angie - When you had a transplant the first time what drugs were you on??
Prednisone, Cyclosporine A, Imuran and a high dose of ALG which can only be given right after the transplant and only while you are in the hospital. Remember this was back in 1990 and things have improved since then. Good luck but please be informed and don't be surprised by the side effects like I was. There is nothing to be afraid of (unless there are complications like I had .. my lungs started to collasp .. but that is another story .. but at one point my mom was told that I might not make it. Just something to think about.) but it is just as silly to go into it blindly..
edit: After reading what Rerun said I have to say I agree with her 100%! You have to know what you are getting into and decide if it is worth it. Also I was not compliant .. and looking back I wish I was on dialysis longer than 2 months because I didn't really appreciate my transplant like I did once I lost it. Also I was only 16 so I thought I was invincible. You really aren't. Just realize that.
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My name is Rose and I'm Amanda's sister.
I personally think a transplant is a gift cause its something we are given and even if it changes your life for a year 2 years or 12 years then its given us a chance to change our life even if its for a short period. These people didn't have to give us Kidneys but its something they have either chosen to give us or the persons family's have chosen.
Maybe we should think of ways to create some awareness for it rather then be negative about such a wonderful gift.
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My name is Rose and I'm Amanda's sister.
I personally think a transplant is a gift cause its something we are given and even if it changes your life for a year 2 years or 12 years then its given us a chance to change our life even if its for a short period. These people didn't have to give us Kidneys but its something they have either chosen to give us or the persons family's have chosen.
Maybe we should think of ways to create some awareness for it rather then be negative about such a wonderful gift.
You could always start your own site but it is unfair to tell others how to run their site. Sorry. Just my opinion. With all the free sites out there it is not that hard and that way you have full control over how you want to run your own site and what for. I would visit. You could call it what ever you wanted. You should think about it instead of trying to convince other people of what to do to fit you. Sorry if I sound harsh but most of us have been going through this for years now.
Your sister has to do what ever is best for herself but telling someone how they should run their site when it is the fastest growing patient site on the net today and the most widely recognized is even "sillier" than someone not taking the chance on a transplant as your sister said of some people on here.
We are just being realistic .. which experience with this disease makes us VERY realistic. You both will see one day. Trust us on the advice we give. Don't automatically judge us as negative until you have been through it. I remember being like you at one time. And yes I had a great transplant. But just know what you are getting into. I did NOT know what I was getting into. If I did I would have been more compliant.
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My husband has many reasons for not wanting a transplant. I'll try to list a few.
He is 63 and he hopes to do well on daily or nocturnal home dialysis and leave the kidneys for the younger people.
PKD kidneys often retain residual function for a long time after dialysis is started, so the usual complications of dialysis and non-functioning kidneys will probably be delayed for a considerable amount of time.
He doesn't want to deal with the possible complications of the surgery.
He doesn't want to deal with the probable side effects of the anti-rejection drugs.
Since we don't have insurance getting a transplant would be extremely difficult and the cost of the drugs would be significant -- why waste a kidney on a person who after three years will not be taking the drugs necessary to keep it from failing?
My kidneys are both scarred from chronic infections before urethral stenosis was diagnosed and treated, so even if I were a match, I can't donate.
His son and daughter also have PKD which means they cannot donate and they will probably at some point be on dialysis as well and/or need a transplant.
He doesn't want to take a live donor kidney from a family member who may later be available to donate to his kids or grand kids at some point in the future. He hopes by that time the surgery and drugs may be much better than they are now. (Of course we're hoping the PKD drugs currently being tested are available soon and will prevent or delay their kidney failure.) Currently, out of the PKD patients who live to be over 60, half have kidney failure. Many die before age 60 due to other health problems caused by the genetic disorder.
He may have other health problems which may make him ineligible for transplant -- brain aneurysm, vascular disease, heart valve defect. Since we don't have insurance he has not had the other tests done; because he can't have contrast dye the testing will be more expensive. After he gets on dialysis and is eligible for Medicare, those will be investigated.
After his nap I'll edit this post if he wants me to add anything.
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I hardly see that the original post was telling how to run this site. Merely a suggestion on her part. Same as a number of other recommendations for different things to be added on this site.
I agree however that this site should stay neutral on the subject of transplants. Let the masses give the info they have on it and let the individual decide what is right for them.
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I have to agree with most. Having a transplant is such a personal decision. My transplant was donated by my sister. It just went out after 16 wonderful years. Fortunately I have six siblings who are all perfect matches. Does that make me feel any better about having a kidney readily available? No. It's a hard choice to take another living person's body part.
One has to be physically, as well as mentally, ready for the surgery, possible complications, drug side effects, etc.
Not real easy sometimes.
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deedee I think your choice is clear. Call the hospital and tell em to get two ER's ready. You don't want to wait any longer than necessary.
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My name is Rose and I'm Amanda's sister.
I personally think a transplant is a gift cause its something we are given and even if it changes your life for a year 2 years or 12 years then its given us a chance to change our life even if its for a short period. These people didn't have to give us Kidneys but its something they have either chosen to give us or the persons family's have chosen.
Maybe we should think of ways to create some awareness for it rather then be negative about such a wonderful gift.
You could always start your own site but it is unfair to tell others how to run their site. Sorry. Just my opinion. With all the free sites out there it is not that hard and that way you have full control over how you want to run your own site and what for. I would visit. You could call it what ever you wanted. You should think about it instead of trying to convince other people of what to do to fit you. Sorry if I sound harsh but most of us have been going through this for years now.
Your sister has to do what ever is best for herself but telling someone how they should run their site when it is the fastest growing patient site on the net today and the most widely recognized is even "sillier" than someone not taking the chance on a transplant as your sister said of some people on here.
We are just being realistic .. which experience with this disease makes us VERY realistic. You both will see one day. Trust us on the advice we give. Don't automatically judge us as negative until you have been through it. I remember being like you at one time. And yes I had a great transplant. But just know what you are getting into. I did NOT know what I was getting into. If I did I would have been more compliant.
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My name is Rose and I'm Amanda's sister.
I personally think a transplant is a gift cause its something we are given and even if it changes your life for a year 2 years or 12 years then its given us a chance to change our life even if its for a short period. These people didn't have to give us Kidneys but its something they have either chosen to give us or the persons family's have chosen.
Maybe we should think of ways to create some awareness for it rather then be negative about such a wonderful gift.
And that is just that, YOUR OPINION, and you are entitled to it and that is what is great about this site you may speak your mind, however I stand by my words I still hate the term "gift of life" because a transplant is just another for of treatment. I agree it is a gift but NOT of life, I have had no transplant and I am still alive and one of our members "Zach" has been on dialysis 24 years straight, NO transplant and he is alive. BOTTOMLINE IS THIS SITE AS AN ENTITY WILL NOT PROMOTE TRANSPLANTS, but you and other members are welcome to. Just as I and other members inform people of the reality.
Why do you consider it NEGATIVITY to have people learn all the pros and cons of a transplant, which is why my banner says "A Place To Get The Truth". I want people to fully be aware of what they are getting into so they never have to say to doctor:
"WHAT do you mean I could get steroid induced diabetes?"
"WHAT do mean the kidney rejected, I only had it a week?"
"WHAT I have to take this medicine for the rest of my life?"
"WHAT I thought with a transplant I would NEVER have to worry about ERSD again?"
"WHAT do you mean by lowered immune system?"
"WHAT do you by possible recurrent viral and bacterial infections?"
"WHAT but I thought it was ok to miss a dose or two of my meds, now my kidney rejected?"
"WHAT Do you mean the transplanted Kidney WILL indeed reject eventually?"
Those are just some of the hard truths that people need to be aware of here are some FACTS for you to read:
Protracted complications are commonly associated with the prolonged use of immunosuppressive medications as well as the chronic rejection of the transplanted kidney. complications associated with medications such as immunosuppressants can cause autoimmune diseases; recurrent viral and bacterial infections, and malignancies of the skin and lymphatic system. High dosage of cortisone leads to osteoporosis and other ailments, and cyclosporine leads to increased facial hair and gum disorders
Not all kidney failure patients can undergo kidney transplant. For patients with heart conditions, recent history of cancer and conditions like tuberculosis and osteomyelitis (infection of the bones), kidney transplant is not recommended. Old age should not deprive kidney patients from receiving a transplant; however, elderly patients in general have less tolerance to the surgical procedures and immunosuppressants involved.
Unless the transplanted kidney has been donated by an identical twin of the recipient, the recipient’s body will, eventually, reject the transplant. Many patients, mistakenly, believe that a transplant is the final and ultimate cure of renal failure. The transplant may survive for two, or even three, decades, but chronic rejection is inevitable. There is no clear-cut explanation to this phenomenon.
NOW what about the people who can not get on the "List"? If this site promoted transplantation and the "gift of life" (which it is NOT, again my opinion) what about the those people? they would feel like shit. Many "young" and "older" people can not qualify to get on the list due to other health problems. I am now on home dialysis with the nxstage and I feel that is the best option but I don't go around promoting it heavily on this site, because many people can not do home dialysis.
I hope I have made myself clear. As to my reasons. And remember it's NOT NEGATIVITY it's giving the truth, both sides of the story, being AWARE!
- Epoman
Owner/Admin
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I think I just heard my name being called. ;)
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I think I just heard my name being called. ;)
;D You are the official ihatedialysis "VETERAN" ;) You really are an inspiration.
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WOAH :o Is it just me or is it getting deep up in here?? :-\
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WOAH :o Is it just me or is it getting deep up in here?? :-\
Rolling up pant legs ;)
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Hello All...
i agree and disagree with some of your comments.....
It is a "gift of life" because its a gift from someone else, its a part of them... thats personaally what the phrase means to me....
and our opinion was mealy a suggestion, but some of you have said one day i will understand..... no i understand now already about the complications, i also have days where i question my decisions... but then i just pick myself up again and move on if you are healthy i will try to continue to promote Transplants and organ donation :)
The good thing is we all have our own story's and beliefs.. thats what makes these sites good.
Amanda
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I want people to fully be aware of what they are getting into so they never have to say to doctor:
"WHAT do you mean I could get steroid induced diabetes?"
"WHAT do mean the kidney rejected, I only had it a week?"
"WHAT I have to take this medicine for the rest of my life?"
"WHAT I thought with a transplant I would NEVER have to worry about ERSD again?"
"WHAT do you mean by lowered immune system?"
"WHAT do you by possible recurrent viral and bacterial infections?"
"WHAT but I thought it was ok to miss a dose or two of my meds, now my kidney rejected?"
"WHAT Do you mean the transplanted Kidney WILL indeed reject eventually?"
Those are just some of the hard truths that people need to be aware of here are some FACTS for you to read:
I hope I have made myself clear. As to my reasons. And remember it's NOT NEGATIVITY it's giving the truth, both sides of the story, being AWARE!
- Epoman
Owner/Admin
I agree that transplants should not be pushed. That is up to the individual.
However IMO those statements are well overblown, especially when compared to dialysis.
Granted not all can have a transplant and not all want one but dialysis itself has just as many risks if not more than a transplant does.
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Epoman for all he has done for the community has a very negative feeling toward transplant. By his own descriptions of his personal condition dialysis hasn't been kind to him. When I read his comments about the negative aspects of transplants all of which are true but in fairness affect a minority of patients I just have to scratch my head and wonder why. Why is he so opposed to transplantation? Why does he feel so compelled to bash it? You know no one goes into a transplant without knowing all of the risks and benefits. They are explained fully and in detail during transplant evaluation before a patient is ever listed. Yea I knew I could die on the table, reject before I ever woke up, contract cancer, be at increased risk for coronary artery disease, contract various infections, etc. When we went to the OR that night as usual I told them no sedation so I was completely with it up until the mask went on and they said "breathe deeply". I remember being scared shitless and saying to my wife at the very last moment "we don't really have to do this". She told me to go for it and I said OK. Now it is five years later and I have no regrets.
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Great imput livecam..... i couldnt agree more
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Epoman for all he has done for the community has a very negative feeling toward transplant. By his own descriptions of his personal condition dialysis hasn't been kind to him. When I read his comments about the negative aspects of transplants all of which are true but in fairness affect a minority of patients I just have to scratch my head and wonder why. Why is he so opposed to transplantation? Why does he feel so compelled to bash it? You know no one goes into a transplant without knowing all of the risks and benefits. They are explained fully and in detail during transplant evaluation before a patient is ever listed. Yea I knew I could die on the table, reject before I ever woke up, contract cancer, be at increased risk for coronary artery disease, contract various infections, etc. When we went to the OR that night as usual I told them no sedation so I was completely with it up until the mask went on and they said "breathe deeply". I remember being scared shitless and saying to my wife at the very last moment "we don't really have to do this". She told me to go for it and I said OK. Now it is five years later and I have no regrets.
Bash it? Negative feeling? Because I don't glamorize it I am bashing it? lol I PERSONALLY know people have wished they never got a transplant, just as I know people who would do it all over again. I just can't believe you call me speaking out on the possibilities "bashing" I have even said SEVERAL times I may go it one day. But please don't puts words in my mouth, when have I ever said to any member here "do not get a transplant" or "a transplant is the worst thing you can do" I would call THAT bashing, wouldn't you? I am simply pointing out the risks, there are risks or am I wrong? The kidney will reject eventually or am I wrong? How many times must I repeat myself I am not against transplants, it's funny I allow YOU guys to have your OPINIONS, but you won't respect mine.
Let me repeat one more time, I am not against transplants, they have improved much from 12 years ago when I started, and for many they work out great. But personally I don't like the fact of knowing that one day I would have to re-start dialysis all over again, after I restarted a career and got re-established, just ask "Rerun". It is my decision not to want a transplant and I will not try to stop anyone from trying to get one, BUT this site as an entity will not endorse transplantation. It will endorse Stem-Cell and Cloning research however.
But my members are free to encourage people to get a transplant and I and others are free to reply to those pro-transplant threads.
So please tell me where have I "BASHED" transplants? And where have I said I was against it? That really pisses me off? >:( All I have said was it's a "Crap" shoot, but I AM pretty lucky at "craps" :o
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i didnt use the word bashing
The kidney will not always reject.. that is my only other import lol we could go forever with this
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Hey Epo whats the use? I ain't ever gonna convince you and you ain't ever gonna convince me. Lets agree to disagree. This is a great site. The patient population is really lucky to have it and you. Thanks Epoman for all you do for us.
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i didnt use the word bashing
The kidney will not always reject.. that is my only other import lol we could go forever with this
No you didn't but "livecam" did and you said "Great imput livecam..... i couldnt agree more" ::)
But to your comment "The kidney will not always reject" WHAT? YES IT WILL, you just may die of something else before it does but it WILL this is documented all over the net.
Unless the transplanted kidney has been donated by an identical twin of the recipient, the recipient’s body will, eventually, reject the transplant. Many patients, mistakenly, believe that a transplant is the final and ultimate cure of renal failure. The transplant may survive for two, or even three, decades, but chronic rejection is inevitable. There is no clear-cut explanation to this phenomenon.
I have also heard that from when I went for a workup from my transplant team many years ago. I was approved but I decided not to go for it.
But since you decide to spread FALSE hope, what do you base your statment on "the kidney will not always reject" Even perfect matches reject, unless it is an IDENTICAL twin transplant.
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my grandfather........
nothing wrong with hope neway.
listen i was just saying my opinion... im over it.... lets just let ppl make up their own minds :)
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Hey Epo whats the use? I ain't ever gonna convince you and you ain't ever gonna convince me. Lets agree to disagree. This is a great site. The patient population is really lucky to have it and you. Thanks Epoman for all you do for us.
WHAT are you talking about? I am not trying to convince NO ONE or you, JESUS CHRIST It's like you can't read and I say that with respect. ;)
What am I saying that you and I can't agree on? You can't agree that a Transplant is a risk? You can't agree that a transplant is not for everyone? You can't agree that people should know all the facts?
Are you upset I decided against a kidney? I am not upset that you did receive one. I wish you well and I hope your Kidney lasts you until the day you die.
You are trying to convince me a transplant is the best way to go, you may be right but there is no clear cut answer as everyone's situation is different. Honestly I am not trying to piss you off. I have a lot of respect for you since you still come hear and contribute even though you have a very successful transplant. I just don't like the fact that you say I "BASH" transplants since I don't.
But thank you for the kind words.
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my grandfather........
nothing wrong with hope neway.
listen i was just saying my opinion... im over it.... lets just let ppl make up their own minds :)
Your Grandfather what? What does that prove? More information needed, is he still alive? Or did he pass? How long did he have the transplant? If he did pass he just died before it had a chance to reject. You can't go around telling people it's possible a kidney won't reject based on your grandfathers experience. As I have mentioned before a kidney may last 30+ years but the human body is very complex and eventually it finds a way to reject that kidney. Do me a favor and ask your transplant team.
Please don't get upset we are just having a conversation, I am not upset are you? And of course we are letting people make up their own minds, have I not made that point?
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Hey Epo whats the use? I ain't ever gonna convince you and you ain't ever gonna convince me. Lets agree to disagree. This is a great site. The patient population is really lucky to have it and you. Thanks Epoman for all you do for us.
I hate to tell you but the kidney will always reject. If you want to prove other wise .. find one person who kept their transplant over 40 years ... (that is not an identical twin)
Anyway, I am not against transplants myself as I am on the list again. Just because people speak against saying "get a transplant - there is no reason not to!" does not mean we are all against it. Just saying to have all your info.
When I got mine they did NOT tell me all the risks. Only some places do .. but of course that was in 1990 and hopefully things have improved since then. Plus since you are on the net, this is a GREAT place to get all the info you will ever need ;)
Oh and I would like to add that mine was one of the "perfect matches" and yes it did fail.
I was just talking to my boyfriend on Skype and I was explaining to him the mindset of a new person on dialysis who wants a transplant. The mindset I had anyway at the time was "ya ya ya .. I know there are risks but let's fix this already! Let's just try and move ahead!" .. I told him how I was told some things but do I remember what? No. I was just too eager to move ahead and get that transplant (I was 16). Of course I was told the basics but never did I realize just how it would be!
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I have 2 good friends who have had their transplants each for 13 years and going strong. One came from a daughter, the other received a cadaveric kidney. The one with the cadaveric is their first transplant, the one with the daughter's kidney is on their second transplant.
I also know many people who are back on dialysis after five or six years following a transplant.
A nephrologist at my center once explained what he called, The Cycle of Treatment for the Chronic Kidney Patient. In that presentation he said, in many cases, a kidney patient should expect to go from dialysis to transplant to dialysis to transplant during their lifetime. It was one of the most intellectually honest transplant presentations I have ever seen.
This is a very individual choice. Just have as much of the facts before the decision is made. :)
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To say all kidney transplants will reject isn't quite true. It would be better to say that all kidney transplants have the potential to reject or even possibly fail. The longer one has a transplant the less likely they will reject. As to my transplant it didn't stop because of rejection, it stopped because of glomerular nephritis.
Saying to find a person with a transplant over 40 years is like saying find a person that has been living on dialysis continuously for over 40 years.
Currently no one knows how long one will live on dialysis or how long a kidney transplant will function because as it is we are in no mans land and those that are on dialysis or have a transplant are setting precedent with everyday they live life.
The big jump in immune suppression didn't come until the 80's when cyclosporin was widely used. There are people with kidney transplants still going strong after 20+ years. In both areas (dialysis and transplants) technological progress is being made which is enabling patients of both areas to live far longer than they could have when both transplants or dialysis was introduced.
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In that presentation he said, in many cases, a kidney patient should expect to go from dialysis to transplant to dialysis to transplant during their lifetime.
This is a very individual choice. Just have as much of the facts before the decision is made. :)
Very true! And you just have to respect everyone's own choice as their own individual choice of what is best for them ;)
No one can promote one individual method of treatment given that even the hospitals equate transplantation as just an alternate temporary treatment to renal failure just like dialysis is. It keeps you alive for an unknown amount of time. What is best for you, only you can decide ;)
And I know Epoman has told people to post about their transplants, so I know he is NOT against them ;)
and to Bigsky, I truly hope they come up with some medical advancement where my next transplant will last forever because I hate dialysis :P And I was on 3 immunosuppressant medications (Prednisone, Cyclosporine A, and Imuran) and I still rejected my "perfectly matched" kidney after 11 years. But just like it is everyone's individual choice, it is also dependent on everyone's situation. But I won't go into why mine failed here ;) I will get another one! I know I will :)
Also ... upon reading other threads (the transplant waiting list thread) about oral hygiene .. and it gave me more to talk about (hope you don't mind)!
When I had my transplant, I could not go back to school because of how low my immunsystem was due to the medications. I could not go to the mall. I could not go to any public places for the first few months. I also could not kiss my boyfriend right after taking Cyclosporine but I forgot and then he got thrush (I think that is what it is called) and had to get medication (at least it was good tasting). When I did go back to High School I could not complete my co-op class for teaching grade 2 children because they got Chicken pox even though I had chicken pox myself years ago. I was told anyone with an immune system as low as mine could get it again. There is a lot to consider. Just wanted to add all that. For the first year any cold could put you back in the hospital. It seemed like the first year and a half in fact I was in and out of the hospital every month and considering the hospital was 4 hrs away (400km approx./ 260miles approx.) it got to be a pain in the @$$!
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Black, your husband is right on! Also, very giving and caring of others.
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Black, your husband is right on! Also, very giving and caring of others.
Thanks, Rerun, I think he's a pretty terrific guy. :)
I thought it was important to give his thoughts for the other older people on this list who are still trying to decide whether to get a transplant, for other PKD patients here, and for the younger ones to give them some perspective through the eyes of someone with more life experience.
As other have said, it is an individual decision and should be made only when fully informed -- we're very lucky to have this forum available to make sure they are INFORMED decisions. (Thanks, Epoman.)
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I thought it might be helpful for everyone to read some of the facts:
3 Months
Deceased Donor Graft Survival 93.9%
Living Donor Graft Survival 97.1%
1 Year
Deceased Donor Graft Survival 89.0%
Living Donor Graft Survival 95.1%
3 Years
Deceased Donor Graft Survival 77.9%
Living Donor Graft Survival 87.9%
5 Years
Deceased Donor Graft Survival 66.7%
Living Donor Graft Survival 80.2%
10 Years
Deceased Donor Graft Survival 40.5%
Living Donor Graft Survival 56.4%
3 Years = 2000-2003
10 Years = 1993-2003 --Yes, a lot has changed in the anti-rejection medications since 1993. But there is no magic bullet ... yet. :)
Source: OPTN/SRTR Data as of May 2, 2005.
http://www.optn.org/AR2005/default.htm
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Yes I have been told that as the years go on that the chance for rejection gets higher but with the statistics it is based on older transplants so who knows what the statistics will be like in the future :P
That is a really good post! Thank you for that!
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Well this has been a fun argument to read.
I am folding up the lawn chair and taking the beverage inside. Some of the BS brought out the flies!
Leaving the light on for anyone who wants to argue more.
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Hey, guys, what happens when someone has small children (in school, around other sick children) and they (the parent) gets a transplant? How do they keep from getting chicken pox or mono or whatever else kids pass around?
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Ummm...I was wondering what happens to my JOB as a teacher? I am around kiddos all day long. Am I going to be able to keep the job?
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Hey, guys, what happens when someone has small children (in school, around other sick children) and they (the parent) gets a transplant? How do they keep from getting chicken pox or mono or whatever else kids pass around?
If the person who has the transplant has already had chickenpox it shouldnt be a problem. They will already have immune response to it.
If not they should contact doctor or transplant center for what action to take.
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That is one reason I didn't have kids. You will get everything and keep it twice as long. I did fine because I wasn't around kids. If I was sitting in church and someone sat next to me and started to even clear their throat.....I got up and moved.
On the other hand, it may give your immune system something to do besides search for a foreign organ.
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Hey, guys, what happens when someone has small children (in school, around other sick children) and they (the parent) gets a transplant? How do they keep from getting chicken pox or mono or whatever else kids pass around?
If the person who has the transplant has already had chickenpox it shouldn't be a problem. They will already have immune response to it.
If not they should contact doctor or transplant center for what action to take.
Then how come my Neprhologist told me that I couldn't teach?
I had already had chicken pox before but since it was right after my transplant they put me in isolation when a kid on the same unit floor that I was on got it. :(
**BUT I have known kidney transplant recipients who have had children and are fine so I don't think it is a huge worry .. just a procaution they like you to take!
edit: And no I didn't get chicken pox the second time. I was in isolation so I was protected but the nurses told me that with my low immune system that I could get it again.
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OK ;) Here's my two Penny's worth ;D
Dailysis keeps us alive and that is all, for some patients who get longer dialysis life is better for them. But many patients only get 4 x 3 hours a week in centre treatment, which really is not enough. On dialysis over the last six years I have had a lot of complications. Including a heart attack. The problem with my leg, the trouble with that was increased because of haemo. I used to think CAPD was great, the answer, no need for a transplant on that. That was until that nearly killed me, I was on it too long I got Encapsulating peritoneal sclerosis (EPS)
I know about Transplants from both sides. when I had my transplant in 1980 the hospital tried out this new wonder drug on me. Cylosporine A my mum and dad had to sign for it to say I could have the new drug. But the Doctors were not too sure how much to give. So the Cylosporine A damaged my Transplanted Kidney. This drug is still used today, and it is know that it damages the Kidney? I have been on wards with patients who have had heart transplants and liver transplant, they are on dialysis because of Cyosporine A. Thats enough of a rant about Cyosporine A.
I had my transplant for nearly seven years, never worked right, always in and out of hospital. High BP, the Kidney rejecting and so on. But for that seven years I was not on Dialysis I could eat and drink what I wanted too. Plus for at least 5 of the seven years I was felt really well, and was able to do anything I wanted to do at any time that I wanted to do it. I have now been back on dialysis for over 18 years. I would have now hesitation in going for another Transplant. Just the chance of getting away from that Bloody Haemo machine. Plus the thing about the Drugs, we are already on drugs for life on Haemo. Plus dangerous ones at that. Just read your side effects on your drug packages.
There are negative things about a transplant. My God have have seen most of them first hand, for one my girlfriend died while having an Transplant. But I am still willing to go through that fight for that Transplanted Kidney for how ever long I may have it. I do not wish to die on Haemo. I hate being a puppet, that three times a week, when I have no choice but to go to Hospital for Haemo.
You can call a Transplant just another treatment for Kidney failure. Been reading Zack's stats, now you know how I feel about stats >:( But that 4 in 10 chance of keeping an transplanted kidney for 10 years looked pretty good to me. After that 2 in 10 chance with my leg.
Kevno
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YA! I mean ... you can only go by stats as a guideline but everyone will have a different experience than anyone else as everyone is unique. You just have to go in prepared and hope for the best. Try to live for today and take a chance! I know I want to give it another go!
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I did very well when I had a transplant. I hardly ever got colds or viruses or anything. I did have a virus not long before I started getting symptoms of kidney failure (undiagnosed), so I am wondering if that virus caused the transplant to fail. Then about a year or so before I started dialysis I had an extremely bad virus that lasted for over 2 weeks. I have never felt so sick in my life. Other than that I was in great health. The key is hygeine! Dont touch your face or mouth or any food unless you have scrubbed your hands. ESPECIALLY if you are dining out. When I come home from being at the supermarket/mall, the first thing I do when I walk inside is scrub my hands. It wont totally stop you catching anything, but it will certainly be a big preventative.
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Then how come my Neprhologist told me that I couldn't teach?
I had already had chicken pox before but since it was right after my transplant they put me in isolation when a kid on the same unit floor that I was on got it. :(
**BUT I have known kidney transplant recipients who have had children and are fine so I don't think it is a huge worry .. just a procaution they like you to take!
edit: And no I didn't get chicken pox the second time. I was in isolation so I was protected but the nurses told me that with my low immune system that I could get it again.
More likely because of the other things kids catch. Namely colds and the flu. Which you will have no immunity too. As to chickenpox they may have been trying to be safe. Personally I caught chickenpox twice. Once when I was a little kid and then again when I was about 10. That was without a transplant. It is possible to catch them twice but at the time I remember being told it was not all that common.
Here is a link to a site that gives out some info about different things concerning this chickenpox, colds, etc.
http://www.kidney.org.uk/Medical-Info/transplant/txinfect.html
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I did very well when I had a transplant. I hardly ever got colds or viruses or anything. I did have a virus not long before I started getting symptoms of kidney failure (undiagnosed), so I am wondering if that virus caused the transplant to fail. Then about a year or so before I started dialysis I had an extremely bad virus that lasted for over 2 weeks. I have never felt so sick in my life. Other than that I was in great health. The key is hygeine! Dont touch your face or mouth or any food unless you have scrubbed your hands. ESPECIALLY if you are dining out. When I come home from being at the supermarket/mall, the first thing I do when I walk inside is scrub my hands. It wont totally stop you catching anything, but it will certainly be a big preventative.
That's why a lot of folks are now using hand cleansers such as Purell. They carry it around wherever they go. It's referred to as a hand sanitizer. Hospitals and other health facilities are using them. They have dispensers on walls in the hallways, etc. They've become quite popular ... just beware of imitations that have inferior ingredients.
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Very good advice. Back when I had a transplant was before they had those hand sanitizers. All the hospitals love them!
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Very good advice. Back when I had a transplant was before they had those hand sanitizers. All the hospitals love them!
My cousin had a heart transplant several years ago when he was in his forties. He has bottles of the stuff all over his house and always carries one in his pocket. He uses it frequently when he's out in public -- after he handles money, shakes someones hand, touches the handle of a shopping cart, and always before he gets into his car and touches the steering wheel. It's a habit now and he does it without even thinking about it.
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Very good advice. Back when I had a transplant was before they had those hand sanitizers. All the hospitals love them!
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After I had my Transplant never thought much about catching anything, caught chicken pox off my little sister got put in isolation for two weeks because of her >:( Went back to school, went on school holidays sailing climbing and so on. Just treated myself as normal as possible, always took the tablets. Never have not taken tablets. Never will not have to take tablets. I suppose it is a lot different now, it was 1980 when I had my transplant. We were told to do everything a normal person would do (what ever that is :-\) Just to get on with our lives. Go out and have fun, but I knew my damaged Transplanted kidney would not last forever.
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The good thing Kevno was you LIVED your life to the fullest with the transplant, what if you had done nothing out of fear of your transplant rejecting and it still rejected? I am happy that you did those things cuz i live by: the only things we regret in life are the risks that we DONT take. Sounds like you had a blast and i am glad you got to experience that much.;)
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I was told I could do whatever I wanted, except for playing heavy contact sports like football. The hospital I go to has "debug" on the end of every bed and the doctors are to use it in between contact with patients. They seem pretty good at using it. Saves water too. I wish I could get that one for home use, its just like wetting your hands and drys with no residue. The one I get from gambro is gooey, and if you wet your hands afterwards they become slippery, which makes it difficult when trying to handle the lines during priming and what not. I dont bother using it anymore.
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That's why a lot of folks are now using hand cleansers such as Purell. They carry it around wherever they go. It's referred to as a hand sanitizer. Hospitals and other health facilities are using them. They have dispensers on walls in the hallways, etc. They've become quite popular ... just beware of imitations that have inferior ingredients.
I don't mean to interupt but I have tried a few of those antibacterial soaps and cleansers and they have all dried my skin out something awful. Does anyone know if any of these types of cleansers that has lotion in them?
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Purell® Instant Hand Sanitizer Moisture Therapy
Purell® with Aloe Instant Hand Sanitizer
From what I understand (and I may be wrong) products containing less than 62% Ethyl alcohol may not work as well (if at all).
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Ya some do dry your hands out but just looks for the ones he suggested or any that say they have moisterizers in them! ;) They are the only ones I use!
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Thanks Zach. I will check those out.
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Any soap is going to dry your hands out because the rubbing action is stripping your natural moisture. Its important to keep your hands moisturised in between washing with a moisturiser. Dry or cracked hands are a good carrier for bacteria, so keep them soft and supple!
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I try to amber, I really do. But it's not all that easy when your turning wrenches on motor vehicles for a living. What I have been doing is wear latex gloves when I work and I do wash my hands throughly once when I am ready to leave work and again when I shower. I have been trying some weird, no name antibacterial lotion but it has an awful smell. My cat wont even come near me when I break that stuff out. ::) I won't be buying that again. >:( Any recommendations?
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When I was working as a mechanic, there was this stuff called "liquid gloves"
A quick search, I found this http://www.alibaba.com/catalog/11163988/Hands_Plus_Liquid_Gloves.html
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You dont have kidney problems though do you sandmansa? Why do you wear latex gloves at work? If you are wearing gloves, put moisturiser on first, then a pair of plain cotton gloves, then your latex gloves over the top. See how that goes. Or instead of that, just wear a decent pair of garden gloves or those hard yakka type gloves you see in hardware stores.
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My hands would dry out a lot when the dialysis unit (when I was on PD) told me to use hand sanitizer instead of gloves as I had for years. I use a brand called one Step with Aloe. Of course that won't help Sandman ;) He should just take Joe Paul's advice ;)
When I started dialysis for the first time in 1990 my hands were always dry as you had to wash your hands (I was doing dialysis 4 times a day every day .. CAPD) for a minimum of 3 minutes I seem to recall.
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Working with any type vehicle, the grease and dirt get ground into your hands, and washing them allot makes your hands raw, especially when cold weather sets in. Also, wearing any type gloves, its hard to get the feel of what it is you are doing, kind of hard to explain, unless you've tried doing this kind of work. Thats why I say try the liquid gloves, worked good for me.
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When I was working as a mechanic, there was this stuff called "liquid gloves"
Thanks Joe Paul. I use to use some lotion my mom use to get for me when she was doing that avon thing. I think it was called "silicone glove" or something like that. I may give that a try. Is it only available online?
You don't have kidney problems though do you sandmansa? Why do you wear latex gloves at work? If you are wearing gloves, put moisturiser on first, then a pair of plain cotton gloves, then your latex gloves over the top. See how that goes. Or instead of that, just wear a decent pair of garden gloves or those hard yakka type gloves you see in hardware stores.
No amber, I don't have kidney problems and hopefully, I never will. I wear latex gloves to help prevent grease and grime from getting ground into my hands and under my finger nails. The chemicals that my hands are exposed to every day, can and will cause the skin in your fingers to dry out so severely that they can crack and bleed. Especially near the finger nails. It can get very painful, trust me.
You can't really ware anything heavier then latex gloves most of the time because you need to be able to feel what you are handling and need to turn small nuts and bolts with your fingers to get them started. Much harder to do when your wearing something like gardening gloves. Although, I do wear heavier mechanics gloves over top of the latex gloves when I need to handle bulky, sharp or hot to the touch meterials.
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Your welcome, and no, you can find it at the store, though I cannot recall what store I did get it at.
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I was doing 6 PD exchanges a day, so thats 36 minutes of hand washing!! I didnt do 6 every day though, it was just rediculous to fit it all in, have a life, and get some sleep as well.
sandmansa, surely you could find some cotton lined type glove that arent too thick? Are rubber washing up gloves too thick?
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Wow!! 6 PD exchanges a day?? I found 4 even hard to fit in! How did you ever do it? At what times did you do each exchange?
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I just fitted them in whenever I could, but most of the time I only did 4-5, or 6 with pretty short dwells. And what made it worse was that I had to go to bed emptyl, so that meant sitting up even longer to do the last bag. We pretty much said that it was impossible to do and thankfully I ended up with a cycler so I got to do the 6 bags on the cycler overnight.
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No amber, I don't have kidney problems and hopefully, I never will. I wear latex gloves to help prevent grease and grime from getting ground into my hands and under my finger nails. The chemicals that my hands are exposed to every day, can and will cause the skin in your fingers to dry out so severely that they can crack and bleed. Especially near the finger nails. It can get very painful, trust me.
You can't really ware anything heavier then latex gloves most of the time because you need to be able to feel what you are handling and need to turn small nuts and bolts with your fingers to get them started. Much harder to do when your wearing something like gardening gloves. Although, I do wear heavier mechanics gloves over top of the latex gloves when I need to handle bulky, sharp or hot to the touch meterials.
At the garage we used to put on a coat of go jo and let it dry before working. Made it easier to remove grease from the hands and nails at the end of the day when washing up.
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sandmansa, surely you could find some cotton lined type glove that aren't too thick? Are rubber washing up gloves too thick?
Are you referring to like those dish washing gloves? Yes, those are to thick and bulky to handle threading in bolts in to tight, greasy areas. BUT, are great for use in a parts washing bins or sinks. ;D
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I personally wash my hands alot, carry hand sanitizer, and have a push pump bottle of alcohol in the shop. Whenever I'm out and about and touching anything I visit that bottle, douse a paper towel in alcohol, and get clean. No matter how careful we are it is still possible to contract a virus. We were on a trip in June where everyone was required to use hand sanitizer on entry to the dining rooms. When we ate at a buffet I would use it on the way in and after bringing the plate back to the table before eating. On that trip the Norwalk virus was making the rounds of other guests and I think somthing like 130 people finally reported it. Anyway I was one of the people who became a lucky recipient. I spent all of 3 days either on my back or in the bathroom and afterwards had intermittant problems for another 10 days after we got back. Honestly being sick and dehydrated like that really scares me when it comes to the kidney. I may be full of hot air but it seems a time like that might be a ripe time for rejection. Anyway there were no lasting effects thank goodness, my last labs were excellent.
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... I spent all of 3 days either on my back or in the bathroom and afterwards had intermittant problems for another 10 days after we got back. Honestly being sick and dehydrated like that really scares me when it comes to the kidney. I may be full of hot air but it seems a time like that might be a ripe time for rejection. Anyway there were no lasting effects thank goodness, my last labs were excellent.
:o Now that is scary!! :o Glad the labs were OK :)
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If u are so sick that your dehydrated you probly should go and get some IV fluids to keep the kidney nice and flushed. Unfortunately you can still catch viruses via the air, and unless you want to wear a mask theres not much you can do. Buffets are probly pretty bad for catching things. I do love a good buffet.
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:bump;
Old thread but some great conversation going on!
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Good conversations.
Miss you Epoman!
:beer1;
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I was told a buffet or salad bar was a no-no for quite some time after transplant. I'd rather not take any chances.
My daugher in law got me several types of hand sanitizers with moisturizers from the Dollar Tree. They seem to work better than plan sanitizers without moisturizers and my hands aren't drying out.
Good thread to bring back, Okarol :2thumbsup;