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

[Amanda From OZ]

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
xx

Moved to correct section "Transplant Stories"

Rerun - Moderator

[Panda_9]

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.

[Amanda From OZ]

hey..

yeah i totally agree..

[charee]

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.

[angieskidney]

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!

[Panda_9]

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!

[Epoman]

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
xx

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

[angieskidney]

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)!

[Amanda From OZ]

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.

[Amanda From OZ]

Angie - When you hada  transplant the first time what drugs were you on??

[Epoman]

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 

[Rerun]

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.

[angieskidney]

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.

[Amanda From OZ]

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.

[angieskidney]

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.

[Black]

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.

[BigSky]

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.

[mmmmdeedee]

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.

[livecam]

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.

[Epoman]

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.

[Epoman]

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

[Zach]

I think I just heard my name being called.     

[Epoman]

I think I just heard my name being called.     

  You are the official ihatedialysis "VETERAN"  You really are an inspiration.

[goofynina]

WOAH    Is it just me or is it getting deep up in here??

[Joe Paul]

WOAH    Is it just me or is it getting deep up in here??

Rolling up pant legs