EPOMAN... Promoting Transplants.. MUST READ!!

[Amanda From OZ]

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

[BigSky]

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.

[livecam]

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.

[Amanda From OZ]

Great imput livecam..... i couldnt agree more

[Epoman]

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" 

[Amanda From OZ]

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

[livecam]

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.

[Epoman]

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.

[Amanda From OZ]

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

[Epoman]

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.

[Epoman]

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?

[angieskidney]

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!

[Zach]

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.   

[BigSky]

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.

[angieskidney]

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 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 @$$!

[Rerun]

Black, your husband is right on!  Also, very giving and caring of others.

[Black]

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.)

[Zach]

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

[angieskidney]

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

That is a really good post! Thank you for that!

[kitkatz]

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.

[Sara]

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?

[kitkatz]

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?

[BigSky]

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.     

[Rerun]

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.

[angieskidney]

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.