Something I've been thinking about lately.

[SheilaW]

Note: I'm not trying to upset or offend anyone.  It's just something I've been thinking about lately.

I'm a relatively new hemodialysis patient.  I've only been doing this since the beginning of August.  I'm just now starting to get into the groove of things, and I'm still learning a lot each day I'm at the center. 

I have learned that many of the older patients there are not ever going to get a transplant.  I have learned that some of the other patients that aren't terribly old aren't candidates.  I have learned that some of the patients have had transplants, only to have them fail after a few years.  I have learned that some of the patients have had several transplants but are back for various reasons. 

So that's left me a lot to ponder.

I'm 33.  While I'm not an immediate candidate for transplant, my doctor told me that if I lose the weight I will be a candidate.  So I'm losing.  But what if?  What if for some other reason I'm not a candidate?  What if a kidney never comes through for me?

I have yet to accept the fact that dialysis may be in my forever life.  I still hold hope that I can and will get a transplant. 

I feel sad for the people who are forever dialysis patients.  I don't know how it would be knowing that "this" is it.  Until you die. 

Some of the people in these situations at my center have great attitudes and outlooks.  But the vast majority seem depressed.  And some are depressed.  I even overheard one elderly gentleman ask his (I'm assuming) wife to stop bringing him here every other day....just let him go. 

I don't know.  I'm not ready to accept the possible permanence of how my life is right now.  I hope I can get The Gift one day.

[livecam]

First of all Sheila you aren't upsetting anyone.  You are expressing the thoughts and emotions that every dialysis and transplant patient has.  Yes there are lots of variables and what ifs and it is only natural to think long and hard about them and consider all the options.

There are patients for whom the prognosis isn't terribly positive and in an in-unit setting you have to see and deal with that.  What you may see there can break your heart but unfortunately it is all part of what we have to deal with.

Looking more now at reality I wouldn't be thinking of being a lifelong dialysis patient if I were in your shoes.  You're young and except for a few pounds there is nothing stopping you from getting a transplant!  Not to worry about a kidney not coming through.  If you are listed for transplant a kidney will come through for you at some point, the hardest part being you never know exactly when that will be.

You mentioned people being "forever" dialysis patients.  Remember that listing criteria varies from center to center.  Some people have other issues that need to be resolved before they are listed.  They just take care of those.  One center may say no but another might say yes..no problem.

Being new to dialysis things probably look overwhelmingly negative to you.  Don't let them.  Check around this site and see how many members here have been transplanted this year!  Be positive and plan to add your name to that list sometime soon.

[rookiegirl]

Hi SheilaW,

I know exactly how you feel.  I'm 37yrs. old wife and mother of 2 girls (13 & 17).  I started Peritoneal Dialysis on 10/22/07.  I struggle with acceptance of my condition each day.  Everyone around continue to tell me "It will get better".  Easier said than done.  I have heard the same things as you.  I'm scheduled to meet the transplant team on 01/08/08 to go over the preliminary of transplantation.  I don't know if I will be a good candidate because from what I heard, you will have to take lots and lots of tests.  You must pass all of these tests in order to qualify.  I'm so scared.  There is nothing else wrong with me except for my kidneys.  But you never know.  I'm afraid they will find something new that will un-qualify me for a transplant.  I get so sad and depress when I think that I will have to be on dialysis for the rest of my life.  I wish I could be like some of the people on IHD.  They are all so confident and hopeful.  I hope one day I will get there.  So my advise to you my friend is "HOLD ON" and be strong.  We are here and you are not alone.  Every since I found this website, it has given me so much hope and love from everyone.

Prayers goes out to you my FRIEND.

[Sunny]

I hope you can get the gift of a new kidney someday too. However things work out , though, you will find you do your best to adapt to your health situation. There are things in life that make it worthwhile, such as your children.  People are willing to continue with dialysis because it provides the gift of life and the ability to see the life around. I am pre-dialysis and used to wonder if I'd be willing to have dialysis. What I have learned from this site is that people manage to have a wonderful life regardless, so it gives me hope should my time arrive for dialysis.

[livecam]

My first day on dialysis started with an emergency treatment to get my potassium down and then an ambulance ride to the hospital.  I was 43 1/2 years old at the time.  The day was a blur of doctors and finally that first dialysis carried out through the femoral artery in my groin.  I remember my new nephrologist that day looking at me after putting in that line and starting dialysis and saying "we're going to get you a kidney".  He wasn't kidding..they did.

[brenda]

I'm not upset or offended but you have to remember not everyone in this world see's a transplant as the ultimate answer. It is my choice that I am one of those "forever" dialysis people. It is my decision that I do not want a transplant. I have my own reasons and thought's on transplant. So please don't feel sorry for me. And I will be happy for you when you get one because that's what you want.

[Sluff]

I'm not upset or offended but you have to remember not everyone in this world see's a transplant as the ultimate answer. It is my choice that I am one of those "forever" dialysis people. It is my decision that I do not want a transplant. I have my own reasons and thought's on transplant. So please don't feel sorry for me. And I will be happy for you when you get one because that's what you want.

I'm with you Brenda. When and if I lose my kidney function, I don't plan on a transplant either. Maybe I would change my mind when put in that position but for now I have my reasons and feel sure that, that would be my decision.

[SheilaW]

I'm not upset or offended but you have to remember not everyone in this world see's a transplant as the ultimate answer. It is my choice that I am one of those "forever" dialysis people. It is my decision that I do not want a transplant. I have my own reasons and thought's on transplant. So please don't feel sorry for me. And I will be happy for you when you get one because that's what you want.

Ok, that's something new I just learned.  I didn't know you could opt out of a transplant if you wanted to. 

I was referring to the patients that want a transplant but aren't eligible (for whatever reason) that I feel sorry for.  There are quite a few of those in my center. 

[brenda]

Ok Sheila now you're worrying me. Everthing to do with your body is your decision including dialysis and your treatment. It's good to trust your medical people but it's really all about trusting your gut feelings.

[SheilaW]

Once again, I'm newish to all this and still learning. 

A transplant is something I want and something I feel good about, but me not knowing one could opt out isn't something that should worry you.  It's something else I will look into and learn more about.

[George Jung]

I was referring to the patients that want a transplant but aren't eligible (for whatever reason) that I feel sorry for.  There are quite a few of those in my center. 

I feel like that too, I feel like that for the people who do everything they can for themselves and still fail to qualify.  For the people who sit outside of the center smoking a cigarette or eating a fast food meal with a giant size cola I am a little less sympathetic.  Those who want a transplant but would rather point a finger and blame someone else for what has to be done rather than accept the way it is, I am less sympathetic.  It is the people who take life head on, who make sacrifices and who will die trying to get listed that I feel sad for.

[paris]

And then there are those of us who get evaluated, put on the list--but my realization is that due to a PRA of 100%, I will not get a transplant without a living donor who is a good match.  5 people tested-- no one is acceptable.  So, chances are getting slimmer by the day of getting a new kidney.   I have had to re-evaluate my thoughts and accept where I am at.  But, I am ok with all of it.  I educate myself on everything related to my health.  Take the best care of myself I can.      Being on the list isn't the magic answer----this whole disease is so complicated.  Good post, Sheila!  We all love a good exchange of opinions and it takes a lot to offend any of us.  This is one place you can ask anything.   I have learned more from the  people here than any of my doctors. 

[kellyt]

Paris, were the "5 people tested" relatives or just people testing for you?  Why were they not eligible, if I may ask?

I have two brothers that are going to be tested when the time comes and I was just wondering what are some of the reasons that would make them not eligible - other than the obvious illness and blood-type.

 

[paris]

Hi Kelly, Thanks for asking.  My children have been tested and a friend.  Because my PRA is probably due to 4 pregnancies, it seems that is why my children aren't a match. My body developed the anti-bodies during the pregancies;  my body saw them as a foreign body and made anti-bodies.  So, now I still want to reject them!  Isn't it all crazy? Now, I am not sure I would want them to donate a kidney, but they all said it was their decision --not mine!   And one son (the healthies, most fit of everyone) was told by Johns Hopkins that they considered him pre-diabetic even though his local doctor has run several tests and his blood sugar is always  below 100!  I am glad they run such stringent test because I would never want to put anyone in danger.  In my nephs office, I am the only patient they have had with a 100%PRA--aren' I special?

Siblings are suppose to be good matches. My siblings (twins) have different blood types and platelet disorders.  I hope one of your brothers is a prefect match and the transplant happens as soon as possible.  Several  people here have had a kidney from a sibling---I hope you join their club!  Please let us know how all the testing goes.   Wishing you good results!

[Wattle]

And then there are those of us who get evaluated, put on the list--but my realization is that due to a PRA of 100%, I will not get a transplant without a living donor who is a good match.  5 people tested-- no one is acceptable.  So, chances are getting slimmer by the day of getting a new kidney.   I have had to re-evaluate my thoughts and accept where I am at.  But, I am ok with all of it.  I educate myself on everything related to my health.  Take the best care of myself I can.      Being on the list isn't the magic answer----this whole disease is so complicated.

I know how you feel. My PRA is o.k its my HLA Antigens that I am having trouble with. I have rare Tissue Typing. I have been told that I will not receive a kidney on the cadaver list by matching. No one is going to match me. So with a family history of PKD there are not many options of a live donor. I am now just going day by day. Trying to keep my chin above the water. I just tell myself I can do another year and try not to think too far into the future.

[oswald]

my PRA level was at 97% because of two previous transplants.  i still got a transplant from a perfect 6 point match from a cadaver.  so it is still possible to get transplanted, although a long shot. 

[kellyt]

Thanks for the info and encouragement.  I wish you all luck, as well.

Now...what is PRA?   

[okarol]

Thanks for the info and encouragement.  I wish you all luck, as well.

Now...what is PRA?   

PRA stands for Panel Reactive Antibody
Here is a good description of approaching a living donor transplant
with a positive crossmatch. http://www.umm.edu/transplant/kidney/highpra.html

[Romona]

It is hard to absorb everything that is thrown at you. No matter where you are in your diagnosis or stage of disease, things can get confusing and overwhelming. No matter what form of treatment you choose it is a gamble. I wish I would have known about all of you at this site when I was first diagnosed and struggling with decisions. 

I long for the days when my main decisions were "Paper or Plastic?" or "Do you want fries with that?". It was so hard to make the transplant decision. Sure it is a treatment that leads to a better life, but opens up the doors for other health problems like cancers. None of this is easy at all. All of you are my heroes.
 

[pdpatty]

I am one of those for lifers. I started the testing for a transplantat the Cleveland Clinic (Cleveland Ohio) and got to the transplant nurse for an evaluation. She said two things,first I had to loose weight and second I had to get a good drug insurance plan because if I could have a way to get the meds I would be on the rest of my life,the doctors would not even discuss this with me.

Now, what insurance company would insure a person with ESRD?

I also have a genetic disorder of the bodies collagen. This is rare so maybe there could never be a match.Both my childern offered one of their kideys but I have Polycystic Kidney Disease and they have a 50% chance developing it themselves.Both my parents are deceased and my sister has cysits already although her doctor say it is not polycystic,my neph says  healthy kidnes do not have cysits on them.

It ain't so bad,at least I am alive. A hundred years ago,this would have been a horrible death!

[kitkatz]

Welcome to my world.  I do not know if I can do dialysis the rest of my life.  God.. the forever it ness of it is going to make me nuts.  One day at a time, one day at a time, one day.... argh!