Am I the only one who...

[Adam_W]

....gets frustrated by all of the assumption that a transplant is a complete CURE for kidney disease? I mean yes, a successful transplant is the best form of treatment (I emphasize SUCCESSFUL), but I sometimes get discouraged by so many people thinking that all my problems will go away if I get a transplant. Sometimes I think the importance of dialysis is downplayed by the general public and the news media. Obviously, I'd rather not have to be on dialysis (who the heck would?), but right now I owe my life to that machine that I sit next to for twelve hours a week, and I wish that we had a little bit more respect for what we have to go through. I wish more people knew that a transplant is just not for everyone (I am most likely NOT going to get one for several reasons), and that even with a successful transplant, the patient will NEVER be free from kidney disease, and that even the most successful transplant usually won't last forever. Sorry if I upset/bothered anyone here, I just wish us dialysis patients would get the same recognition for our ordeal that transplant recipients receive. Take care.

Adam

[okarol]

It's also frustrating that many people think dialysis is a cure for kidney failure. You're right, a transplant is another treatment, not a cure. Dialysis has it's drawbacks, because the filtering is not as good as a kidney, so the side effects and damage that occurs is continuous. Same with a transplant, the immunosuppressants can cause side effects and other problems like cancer and loss of bone density. Unfortunately there's no perfect solution. But with a "successful" transplant the patient can have more freedom and live a closer to "normal" life. I love that Jenna did okay on dialysis, fatigue was her biggest problem, thankfully. But knowing she can eat and sleep and travel and have babies and perhaps do more with her life is great. I know it may be temporary, but that's the life of a kidney patient. If she has to go back on dialysis then she will. But for now I think she feels better than she has in 6 years.

[thegrammalady]

kidney failure is a terminal disease, it will eventually kill each and every one of us. i'm lucky i don't look sick, which doesn't mean i'm not. i think the only people in my life (other than those on this board) that understand that are my immediate family. and sometimes i wonder about them. i'd like to work, at least part-time, but it's just not financially feasible. i'd have to make $2000 a month just to start to pay the medical bills, not worth it. i don't think you have a single thing to be sorry for. the general public has no clue. and yes we should get more recognition.

[goofynina]

kidney failure is a terminal disease, it will eventually kill each and every one of us.

So can the water we drink, the air we breathe, the food we eat, the soap we use, the global warming, the gangs, the violence, drunk drivers, heck, even the sober drivers that are acting stupid.  I believe we have a better chance of being killed by one of the above before this damn disease takes us.  Please everyone,  whatever is going to take us, find it in yourselves to LIVE UNTIL YOU DIE!!!  If you dwell over the disease your going to miss out on so much, time is going by so damn fast it is crazy.  Just try and be as happy as you possibly can and just LIVE until you Die... Love you all 

[angela515]

kidney failure is a terminal disease, it will eventually kill each and every one of us.

Not everyone with kidney failure, dies of kidney failure, or the prob lems related to what kidney failure has caused... however yes, most do... but not all.

[George Jung]

The thing is, even if I dodge the bullets from from outside forces I am still left with one that will do me in for sure.  Eventually if I get to meet toe to toe with my enemy after all of the other battles  and confrontations won there is only one left to defeat.  He will ultimately win me out and my time will be complete.

[aharris2]

The thing is, even if I dodge the bullets from from outside forces I am still left with one that will do me in for sure.  Eventually if I get to meet toe to toe with my enemy after all of the other battles  and confrontations won there is only one left to defeat.  He will ultimately win me out and my time will be complete.

hey George, i just notice that pic on your avatar....is that you mate? is that after a day of going back to work?


cheers,

Rolando

[George Jung]

I was thinking about this some more.  I think the reason people give "special attention" (my words) to those who have undergone a transplant for their treatment is because it is the so called last level of treatment (also my words).  Most transplant recipients do not get a free pass on dialysis.  A transplant is the only form of treatment that frees one from a manual process.  Not that there is anything wrong with choosing whatever treatment one decides on, but I think is is perceived that while dialysis can be great form of treatment, one is somewhat of a slave to a machine, where as with a transplant the person is a slave to medication.

This freedom from a manual process is what draws the focus.  Although I can share some of your feelings I don't think it is anyones intent to downplay hemo or pd.  I think everybody is yippy skippy about transplants too but I don't think they don't respect any form of treatment.

[livecam]

Kidney failure is not a terminal disease unless you decide it is.  There are people on this site who have been on dialysis for 25 years and more and are far from terminal.  Transplant patients have lived that long and longer with a single transplant. 

It is true that transplants get more attention than dialysis but that is because of the drama and sometimes heroism associated with them.  Dialysis is something the average person doesn't know much about.  None of us knew much or cared to know much about it until we had to do it ourselves.  The public in general is even less interested in the subject.

Sometimes it is hard to maintain a positive attitude in the face of a major breakdown in the body.  Kidney failure affects every aspect of our lives and most of the time for the worse.  Transplants offer the closest thing to a cure for kidney failure that is available today.  A good transplant will give you your life back in every way.  I can't understand why anyone wouldn't want one.

[jbeany]

Not only do they think the transplant is a miracle cure, with no problems or risks, they think just getting on the list is some wonder cure as well. 
(I'm still laughing after being asked if getting on the list meant I didn't have to go to dialysis anymore!  Poof - like writing your name on magic scroll.)

[angela515]

Kidney failure is not a terminal disease unless you decide it is.  There are people on this site who have been on dialysis for 25 years and more and are far from terminal.  Transplant patients have lived that long and longer with a single transplant. 

It is true that transplants get more attention than dialysis but that is because of the drama and sometimes heroism associated with them.  Dialysis is something the average person doesn't know much about.  None of us knew much or cared to know much about it until we had to do it ourselves.  The public in general is even less interested in the subject.

Sometimes it is hard to maintain a positive attitude in the face of a major breakdown in the body.  Kidney failure affects every aspect of our lives and most of the time for the worse.  Transplants offer the closest thing to a cure for kidney failure that is available today.  A good transplant will give you your life back in every way.  I can't understand why anyone wouldn't want one.

Well said, I agree. 

[st789]

Very good topic to talk about, I agree wholeheartly about dialysis and transplant side effects.  Out side of renal community, people automatically assume one you have kidney transplant then you are perfectly normal.  Damn those people......

[livecam]

Very good topic to talk about, I agree wholeheartly about dialysis and transplant side effects.  Out side of renal community, people automatically assume one you have kidney transplant then you are perfectly normal.  Damn those people......

Well if the guy making that assumption is my employer then lets not damn him!

[Amanda From OZ]

....gets frustrated by all of the assumption that a transplant is a complete CURE for kidney disease? I mean yes, a successful transplant is the best form of treatment (I emphasize SUCCESSFUL), but I sometimes get discouraged by so many people thinking that all my problems will go away if I get a transplant. Sometimes I think the importance of dialysis is downplayed by the general public and the news media. Obviously, I'd rather not have to be on dialysis (who the heck would?), but right now I owe my life to that machine that I sit next to for twelve hours a week, and I wish that we had a little bit more respect for what we have to go through. I wish more people knew that a transplant is just not for everyone (I am most likely NOT going to get one for several reasons), and that even with a successful transplant, the patient will NEVER be free from kidney disease, and that even the most successful transplant usually won't last forever. Sorry if I upset/bothered anyone here, I just wish us dialysis patients would get the same recognition for our ordeal that transplant recipients receive. Take care.

Adam

Adam i am very understand of your situation but...

I am sick of people who are always being negative about transplant.  I myself could not imagine spending the rest of my life on this machine, i understand all the risk and complications.... but don't you think its worth the risk??

Many posts i have read on here about transplants are quiet negative (and even made me think twice) i think we should help promote transplants More.

Also it annoys me most when everyone keeps saying  a transplant wont last forever..... my doctor will beg to differ! 

Maybe we should think of ways to create some awareness for it rather then be negative about such a wonderful gift. 

Just my  .

Amanda

[bluedove57]

I'm facing a transplant this fall and am aware of all the risks. I would rather take medication than be hooked up to a machine. I will be able to travel again and visit my kids without worrying about how to get to dialysis. This is wonderful for me. I believe things happen to us for a reason and I'm fortunate enough to have a transplant that I will take it with open arms and let God direct my steps. I'm tired of the needles. I'll pop a pill over a needle. I'm aware of the side effects but to free up my life and get back to work is a blessing for me.

[keefer51]

When i was faced with the fact that i had kidney disease i had some very personal decisions to make. I kept hearing my wife, family, and friends say "If you love us you will go through with this." Out of love my brother donated one of his kidneys. Alot of money was donated to help with the costs. Everyone told me that this was a miracle cure. I was led to believe that this will change my life forever. Not one person asked how i felt. I have very high blood pressure if it is not in check my kidney will fail. After the transplant my life did change. My wife divorced me after moving to another state. I was with out my medication for four years due to the lack of medical insurance. I would call my brother every year on the anniversary of the transplant and thank him for what he did. I could not and would not let him know what really was going on. i had tried in every way i could to get my medication. After four years i was finally given the anti rejection medicine i needed. I learned the hard way that a transplant is not the answer. How ever if you have spouse or children or even a partner you can with a transplant enjoy the time you have been given. In hindsight i would have spent alot more time with my children and family. Transplants aren't a miracle cure. the just give you a second chance. Try and enjoy the time you have. Don't get a transplant for someone else. Get a transplant so YOU can enjoy someone else.

[Romona]

After a transplant everyone thinks you are "cured". People with transplants are still consider End Stage Renal Disease. It is a treatment.

I agree with Amanda that organ tissue awareness should be promoted. 

[rimbo74]

I'm a couple of weeks into breaking in my gift from my brother and it is working out great.  I had to take just as much machine when on dialysis than I do now, except now I have energy and feel great with the exception of a little soreness from the surgery.

TRANSPLANTS rock!  It's even more special that my brother gave me a gift of life.

07/31/07