another newbie to this site - now with transplant

[AlexK]

Hi, All! 

I'm no longer on dialysis, thanks to a working transplant of some 2+ years duration.  So far, so good, knock wood.  But did I HATE dialysis?  You had better believe it!  I did manual PD exchanges, 3 times a day, for almost a year before my transplant.  From the minute I had my PD catheter inserted, I suddenly looked at least 5 months pregnant, and after a fill, I felt (and looked) ready to deliver that non-existent new addition to the family...  Honestly, I had to change my wardrobe to accomodate the huge bulge.

Otherwide, I guess I looked pretty normal (even with the bags under my eyes), but I got mighty sick of being asked "when are you due?" Healthwise, I felt like garbage most of the time - exhausted, totally sapped...  I was vomiting every day (morning sickness, anyone?), getting Epo shots every other day, getting iron infusions to the point that I thought I was going to rust, and following a vegan diet that I hoped would help delay the inevitable. No chocolate, no alcohol, no caffeine (there goes my coffee!)  Needless to say, none of that worked too well, and while I was sort of on the fence about getting a transplant, I did join the registry, and when the call came, I gave it a shot.

Is life post-transplant a bed of roses? Well, to be honest, nope, it isn't...  I take tons of pills every day, worry about what they're eventually going to do to me, still feel exhausted a lot of the time, still get Epo & iron (tho not as often), and wonder how long my new kidney will last.  Even so, tho, I am thrilled to be free of dialysis, thrilled to have a somewhat flat abdomen again (tho you should see my surgical scars! forget the bikinis - I have railroad tracks everywhere!), and happy to just be living my life as at least a semi-normal person these days.  Would I go back to dialysis?  Yes, probably.  I don't know how long my transplant will last, so it may be in my future again, and I'm down to earth enough to accept the fact that dialysis may again be inevitable.  The prospect sucks, for sure, at least compared to where I am now, but I'd do it again if I had to.  After all, it DID keep me alive for a while there.

In short, I guess you could say that I HATE dialysis, I HATE kidney problems, and I'm not too keen on kidney transplants, either - BUT - you do what you have to do to keep on going.  Best of luck to ALL of you out there who are fighting the fight.

Alex

[Epoman]

Thanks for joining our board and welcome. I hope you come back often. I was wondering though, you still need Epogen? Shouldn't the new kidney be making your hematocrit stay normal? And Epo and Iron shots hurt. I get Epo and Iron through my dialysis lines. One time they forgot to give me my Epo shot and they gave it to me in my arm and it really hurt. So I always make sure they push the Epo before they start taking me off.

You mentioned "and wonder how long my new kidney will last" That is one of the main reasons I decided against the transplant. I know myself, and I would always be wondering "is today the day" or when ever I would feel sick I would think "oh man this is it, REJECTION" I like stability in my life and even though dialysis is a terrible way to live at least I know what to expect.

What about infections and your immune system? does a simple "Cold" wipe you out? Also you didn't mention your age and what caused your kidney disease? and I am assuming your a female? because you said "I suddenly looked at least 5 months pregnant"

So answer those questions so we get to know you better. By the way, I hope your new Kidney lasts you the rest of your life.

[Rerun]

Hi Alex,

I started on hemo and then went to CAPD and then received "The Gift of Life."  It lasted 17 years and it was cadaveric.  But, it is true, you take tons of pills and that prednisone is a double edged sward.  It is also true that you wonder everyday how long it will last.  If they could have told me on day "one" hey this is going to last 17 years.... man my life would have been different.  But, I still feel very blessed to have had it so long.  I started back on hemo dialysis Sept 5 of this year and I hate it, but it has improved a LOT in 20 years.

Just a warning... you may not be able to go back on CAPD (God forbid you have to dialyze again).  Too many abdominal surgeries can cause too much scar tissue for the CAPD to work.  That happened to me. 

Best Wishes for a LONGGGGG Second Chance!

[LifeOnHold]

Hi Alex,



I did PD for 3 years, and had the same pregnant feeling.  I had irritable bowel for the entire 3 years, which made eating in restaurants a bigger hassle than it was worth.

During my 3 years with the transplant, I had zero immunity from anything-- I used to come home with a cold every time I went grocery shopping, and when I got the flu it lasted 3 weeks and I broke a rib from the constant coughing.  Between the constant colds, flu and infections, plus the psychotic  hallucination episodes from the prednisone (not to mention the male-pattern hair growth on my face!), I can definitely say that my transplant did NOT improve my quality of life.

So even though I hate dialysis, for me it's been the best way to treat my kidney failure.

I had to laugh at your 'railroad tracks' comment-- I've got the same thing on my abdomen!  To get the kidney in there, they had to cut across my c-section and catheter scars... I look like that "Operation" guy, scars everywhere!