To Accept a transplant...that is the question..

[Krista]

Hi!! I was just in the mood to write. So I felt I should write to some people that would more likely understand my situation. So here it is. I am scared to death of getting a transplant. But of course not for the obvious reasons that many would think of. I am not afraid of the pain, or needles, or any part in the recovery, or even being dependant on meds for the rest of my life. I have been through that. I had my first transplant in April of 1994. I was 9 years old. But being at that age I guess it just messed with my head a bit. I gained weight. Like serious weight. i was humiliated in school and grew up feeling like a loser. Ha! The prednisone was evil! I'm just afraid that if I do get a transplant again that all those old emotions will come flying back into my life making for one hairy recovery. I have been on dialysis for 6 years. I'm used to it and most of the time don't mind it. Then my access will clot and the fear sets in that I have no other alternatives. All areas that can be used have already been utilized. I'm not trying to Sound negative. I just have been dealing with this my whole life. I was born with polycystic Kidneys. Lets hear it for PKD!!! yay! I guess I just get down sometimes because non of my friends understand why i get so tierd and they get irritated that I cant do as much activity as they can. But hey i get mad too but they don't get it. I thank God for this site. It gives my a place to go to feel wanted and accepted. I'm just so tierd of doing this. I'm 25 but i feel 95. My bones hurt. My heart hurts. Why cant God just heal me?

[twirl]

you are a beautiful girl
I am PKD but had no problems until I was older
Stasie-- 24 has it
Missy - 20 has it
Allen - 18 we do not know
Trasie - almost 2 - has it
new baby Scott, has questionable kidneys on sonogram, he will come in about 2 months
look at my family ---- My family------ member section
I think you are so young you should get the transplant. I have never had a transplant so I do not know anything but if I was your mom I would want you to have it.

[okarol]

My daughter is 22 years old and it's been 18 months since her transplant. She is on a steroid free protocol - no prednisone after the first 3 days - and she's doing great.
I am sorry for what you've been through, but twirl is right - you are a beautiful girl!
Best wishes to you whatever you decide. 

[circleNthedrain]

Hey Krista, you sound pretty positive to me!  You are so young, I vote 'go for it'.  I have had 2 transplants myself so I can certinly understand your hesitation to take prednisone again...it really is evil!  Have you checked with your neph, maybe you wouldn't need to take pred this time.  Whatever you decide, I wish you the best.  You have a lot of life to live!

[rose1999]

Kristna you are beautiful and you will still be beautiful even if you get fat, when you get old etc ................I get so upset by people who think thin is the only way to be and that looks are everythign.  I'm not 'fat' but I could lose 10-15 lbs, but if people can't like me for who I am then I don't want to know them.  

Kristna and Twirl (and everyone else in the IHD family) I will love you for who you are, not what you look like, that's only the shell and it's what is inside that matters - so Kristna if that inside can include a working kidney then you go for it, life is for living so please give yourself the best chance you can.  

[KT0930]

I also got my first transplant very young, but thankfully never had huge issues from the prednisone. If the fear of the weight gain is the only thing holding you back from going forward with a transplant, perhaps you could talk to a counselor or psychologist (not a psychiatrist, you don't need meds for this!) who specializes in body image issues. This is obviously a fear that goes back many years for you, and you may need the help of a professional to make yourself believe what all of the above posters have said...thin is not the only way to be. Good luck no matter what you decide, and let it be the right decision for YOU.

[fluffy]

i understand completely, even though i've never had a transplant im very reluctant to get one. The medication scares the hell out of me, i got teased enough about being fat when i was a kid and i dont even wanna think about putting the weight back on, but yeah i can relate im 25 and i feel like shit and its hard to keep up with my friends and easier to stay home  hugs for you.

[twirl]

you are a beautiful girl
get a transplant and live your life dialysis free
I' rather you get a transplant than me
good luck
"Forever young"

[willieandwinnie]

Krista Find a transplant center that offers a steroid free protocol. Keep posting, that's why we all are here.

[MyRenalRomance]

I am 5 weeks out from my first transplant.  I am so happy to be free of my dialysis! I was on the nighttime cycler, so I really did not mind, too much, but now that I'm off it, I LOVE being free of it!

I am taking prednisone (currently 7.5 mg and tapering off w/ an end date in Dec.).  I am not having any problems w/ my prednisone.  I took it back in the 80s for my scleroderma until the doc stopped it when I got pregnant in 1989 (don't recall the dosage).  I did not gain weight back then, but did experience a very slight "moon face".  My hubby did not care, and still thought I was very beautiful.  In fact, he's hoping the current prednisone rx and transplant will help me gain weight, as I'm currently about 30 lbs underweight from my usual weight.  Unrelated problem that my doctors can't figure out - lost the weight, gradually over the past 2 1/2 years prior to ESRD.  

I can understand that at age 25, your body image is important to you.  But, no matter your weight, you are/always will be the same beautiful and wonderful human being!  Everyone is different - we all come in different sizes, shapes, colors, etc (and we are all beautiful!)  I see all human beings for who they are as a person (their personality) and I do not see them for their outer appearance.

KT0930's suggestion regarding seeing a counselor or psychologist to help w/ body image issues is a good suggestion, since your issue began at a young age.

Good luck with your decision. You will know what's right for you.

[KT0930]

I hate to be the voice of "doom and gloom", so to speak, but chances are, with this being her second transplant she may not be able to go with a steroid-free protocol. The chances of rejection go up with each subsequent transplant, and so most teams will err on the side of caution and use a more rigorous immune suppressant schedule. I will remain on 5 mg/day of prednisone for the life of this (my third) transplant. Also, my prograf level is being kept higher than the typical first-timer's. At six months post-transplant, they like mine to be 8-10 instead of 5-7 like most patients.

[Robby712]

I can totally identify with my friends just "not getting it"...I get tons of grief from them for not going out as much as I used to.  Then when I do, I get harassed for going home earlier than everyone else.  Oh well, I've learned to live with it...they will to.

I also understand where you are coming from when you say you are scared when it comes to being transplanted again...I got my first transplant when I was 17.  The weight gain and the CRAZY mood swings due to all the steroids are something i am not looking forward to.  But I look at it like this, after a year or so all that dies down...and I can deal with that when my other option is an infinite number of years on dialysis.

*Oh, I started dialysis when I was 25...and before long I totally felt like I was 95.  It doesn't help that almost everyone else in center actually IS 95.

[stauffenberg]

Since with a transplant your energy level will be vastly improved, your life expectancy at your age will be more than doubled, and your risk of developing dialysis-related co-morbidities will fall to zero, it would simply be suicidal not to jump at the chance for a transplant.  The dreaded prednisone 'moon-face' and prednisone-related weight gain should only last for about a month post-transplant, until the prednisone dose is tapered to its maintenance level.  At the maintenance level of 7.5 mg/day or 5.0 mg/day you will not be taking enough to develop the cosmetic problems or weight gain associated with the initial heavy dose of around 30 mg to 60 mg/day.  Even if you get a bit hungrier for a while, surely the self-discipline required to limit your eating will be an infinitely smaller strain on you than that required to cope with a dialysis diet and the whole oppressive regimen of dialysis treatments.

There may be some unavoidable facial rounding from the cyclosporine, but that is not so serious a cosmetic problem as to justify prefering to cut your remaining life expectancy in half by staying on dialysis!

[twirl]

please listen to Stauffenberg

[petey]

For the first time in a long time (maybe ever), I agree with Stauffenberg.  As much as Marvin and I prefer home hemo to the other modalities of dialysis treatments, we'd still take a transplant over it ANY DAY.

[lruffner]

Krista-

I have just been handed a transplant packet, because my diagnosing nephs sat on their ass and didn't try any treatment for a year, and now it is too late to do anything. My kidney function keeps dropping every 2-3 months, so it shouldn't take long to hit the magic listing gfr of "20". I have very mixed feelings about getting a transplant, due to having FSGS, as well as watching what my mother has gone through with her transplant. I am sure I am having a little bit of a pity party, but more like I feel there is no use. My biggest fear is recurrance and the fact that I don't think I would go through with it again if it happened. I also think of all of the people who could get by with one good kidney for a long time and I absolutely hate the thought of ruining/ wasting a perfectly good kidney.

I am sure that I will go through with it at least once, but those are just a few of the things that consume my mind. You are still very young and should go for it. My mother has never been on a steroid since her transplant, except for the initial 3 days as well. A lot of transplant facilities are trying to go "steroid-free" because most patients have a better quality of life and do better medically, so just find one and go there.

[Chris]

If you do decide to get a transplant, do research on the centers in your area to see which one is a steroid free protocol. That was a concern I had when I was looking into transplantation. I may have had it post transplant in an IV drip for a couple days, but no pills have never been taken.

But the issue I see here is the emotional toll that your first transplant put you through. That may have some difficulties to get over like a phobia. When the time is right, you will make that decision. It is not an easy decision to make But if you do take that step forward, tell your transplant center your concerns due to past experience with meds, ask questions, and do as much research as possible.

[angela515]

Hey Krista, you are BEAUTIFUL... Honestly I don't see a prednisone face on you... lucky you. I will post a picture that better shows my prednisone face so you can compare, and really see you don't have one and your gorgeous!

I had my first transplant at age 21 from my mom, and unfortunately I was on prednisone for that one, and had already been on prednisone for the previous 8 years for my Lupus... so there was major damage in my body from the evil evil prednisone which I despise. However, 2 glorious things came from that transplant and that was my 2 children which I had directly after the transplant. They are the joy of my life and make living worth it.

So when the time came to choose to go on the list or not, I of course chose yes because I know life with a transplant is WAY better than life on dialysis. (At least for me.) This time, I am on a steroid-free protocol, which means I do NOT take prednisone. YAY. However the damage to body is done and can't be reversed and neither can my "moon face" due to how long I was on it.

Not everyone can go on a steroid-free protocol even if that hospital does them. It is based on an individual basis and certain critia to which you need to meet to go on it. My PRA was 0% and so I got to go on one. I didn't need to meet any critia because I met something which gets you automatically on it and that is very low PRA, or in my case o%.

However, if I had to go back on prednisone, I would. No matter how much I *HATE* that drug, I would go on it to get a transplant just because of the quality of life i would get than being on dialysis.

It is a personal choice though... and you have to make it. Some suggestions would be to make a list of pros and cons for yourself and see everything in black and white. Ask around with transplant hospitals and surgeons and find one that you can discuss this with and let them know your concerns about prednisone and your others issues, and I am sure they can help in whatever way possible to get you a kidney and a happy outcome.

Goodluck hun.

 

[Krista]

everyone you guys are so awesome! All your advice has made feel so much better about getting a transplant. Yay the fear is leaving!!! Thank you!

Krista

[RichardMEL]

Hi Krista,

Darnit I wrote a big long post which didn't seem to make it into this thread. Perhaps I didn't flirt enough in it.... 

I'll try to recount the great points I had the first time around

First of all I think medical science and medication regimes have changed a great deal since 1994 when you had that initial transplant. As others have written, you may only need the steroids for a few months and at a lower dosage, so the affects on you weight wise, and so on may not be as pronounced and scary as the first time around.

MOST IMPORTANTLY...

I want to stress this to you. If your friends or whoever freak out about you gaining weight, going pudgy around the face etc because of the meds well they're clearly not very sincere friends are they? I know your family and real friends around you who care and love you no matter what won't care and indeed will be so over the moon (pun intended) about getting a successful transplant that having any of that stuff won't matter versus having energy and freedom from that bloody machine!! You're a beautiful young lady and you deserve to enjoy life as normally as possible!

I do understand there must be a lot of a self image thing in there for you, specially after your experiences 15 or so years ago, but I know for me that I couldn't care less how I looked (hey, mooning it up might actually me an IMPROVEMENT for me!!!! ) if I had that special chance at a more normal life with a transplant and freedom from the machine... plus I am confident from all I have read that with the new ways of doing things you can get over that weight stuff pretty quick.

Anyway you should know down here in Oz a major personality (Bert Newton) is known by the nickname "Moonface" - because that's how he looks.. and he's greatly loved!!! (http://en.wikipedia.org/wiki/Moonface)

so smile, look forward to something wonderful - which you deserve to happen very very soon!!!!
 

[Lori1851]

Krista,
God love you hon. My son Dustin did the pred through his Jr and SR year it was Hell but,,,,,,,,,,,,,,,, we got through it together.
Hon, please go for your transplant you see my son's bestfriend was a match and  we had filled out his paperwork to get evaluated again. He was so excited and scared but was looking beyond all the negative he wanted his freedom again. While I say this Krista , Dustin was 22 he lost his battle to kidney disease July 13th just a   few weeks back.
Try and think of the positive. Im sure your parents do a great job of encouraging you. Write me anytime hon I promise to listen

Lori/Indiana

[Romona]

Krista,
You can take all the time you need to make the decision that is right for you. When I get upset about weight gain, friends remind me how much healthier I look. I also think about how much stronger I am and can do so much with my kids. Plus you have everyone here that knows what you are going through. I met Angela recently and she is gorgeous. I don't see the moon face on her. 

[monrein]

I understand your worry Krista and I share it.  My first transplant lasted 23+ years (I was 26 at the time) but I'm now back on dialysis and hoping for a second.  We're testing donors at the moment.  Life is full of so many risks but our lives come with more than our fair share.  You may just need time to come to the decision that is right for you but as for the how you look part, please know that the inside really is far more important than the outside.  I'm sure you already "know" this but as I've gotten older I both know it AND feel it.  People who only want to be with you because of how you look don't actually deserve to be with you because you are so much more than that.
RichardMel and the others here have it right.   The way we experience and live our lives is far more important than how we look to others as we do it.  Besides, all you'll ever have to do is SMILE and everyone will see your beauty. 

[pelagia]

Krista,

As someone who has battled weight gain all my life, I understand your concerns...  But, I have to agree with what others have said about friends.  The real ones will stick with you through "thick and thin."

My husband, the transplant recipient, confirms the points Stauffenberg made.  Stephen's prednisone dose has gone down to 10 mg a day, his appetite is dropping, his weight gain has stabilized and he has only a hint of anything I would call a moonface.  Actually he already had what I would would consider a moonface before his transplant, so maybe you wouldn't even be able to tell.   (<-- he looks just like Smiley!) He is 10 weeks post-transplant.  He feels great and is enjoying every day.  He is not questioning his decision to have a transplant.

 

[kitkatz]

The solution to moon face---- whenever anyone mentions it, clobber them with the big stick!