What They Don't Tell You - Transitioning Back to Life After A Transplant

[KarenInWA]

I've been lucky with the prednisone. I was on high doses of IV pred in the hospital, I believe it was 500mg, then 250mg, 125mg, 75mg, then oral 50mg (only once), then 20mg for a few days, then 10mg for just over a month. I am now on 7.5mg, and soon, will be on 5mg. No moon face or extra hair here!  I did sport quite the goatee in the hospital, which I took care of when I got home, but that's about it. The one thing I haven't had is extreme hunger. I think that is because of side effects of the myfortic, which has been cut in half twice now. I absorb it well.

KarenInWA

[Poppylicious]

Three months post-transplant my Blokey is down to 5mg of prednisolone every other day.  He was so worried about taking it as when he's been on it before he did have the moon-face.  It just didn't affect him this time though.  He's also managed to only gain a maximum of 3kg since the transplant (which may actually be due to something else going on, grrr ... complicated story). 

[natnnnat]

I was bawling at TV commercials for a while.

When gregory was going through pneumonia last year they upped his prednisalone to 100mg a day.  You're not kidding that got exciting.  He was jumpy as a cat, and couldn't eat his cornflakes either:  they'd shake off his spoon, for his shaky hands.  I found the mood swings surprising, but watching his cornflakes fall back into his bowl made me cry.

He was 19 when his kidneys failed, and had a transplant by 24.  He had dropped out of highschool, worked as a concreter's labourer, and then became a full time patient.  I don't know how it was for him when he got his kidney as I wasn't there, but I do know that at some point, he went back to school.  Finished highschool, did a degree, and then a TAFE certificate to become a library technician.  Then he got himself a job in a library.  I don't know how hard any of that was. 

But I can remark, if it makes any difference at all, that I was directionless and at a loss, too, until I was about 35 years old, maybe longer, and I'm pretty well healthy as a cow.  Sorry to say, I think the main issue was that I just didn't like the way the world worked, for a very long time.  So I worked in silly jobs and traveled the world, for the sake of looking around.  Eventually while working as a night shift newspaper reader, I suddenly started finding the economics pages interesting, and after that I felt like getting involved in this crazy world.  And that was hard, because I was really broke, and I had a really crappy looking resume, and it was about 2004.  And I had a major depression going on, for I wanted to "do" something, but had no idea what to do and felt pretty lost, useless, friendless and out of place.  That was probably the hardest time of my life so far, but eventually I worked out a plan (it took a long time to do that) and then stuck to my guns.  Luckily, it has turned out to be a rocking plan.  Or maybe... when you have a plan, and stick to it, it turns out to be a rocking plan, regardless of what it was.  Something about finding what you love, and being passionate about what you do.  Sounds like some hippy poster.  Anyway.  Hopefully you can come up with a rocking plan.  I'd recommend it to anyone.

I just read Ed's post and notice he said the same thing about getting a plan and then "relentlessly pursuing it" can be the best thing.  Dialysis patients can be determined, they've gone through hell and back, so the relentless part may not be too hard to conjure up.  The plan is the harder part.

[RichardMEL]

Some tx units do now have a steroid-free protocol.

I have to say I think I've done ok with the prds - between the post-tx doses, and a few days of high IV preds (1000mg/day) when I thought I might turn into a blimp I've put on about 7kg and pretty much stayed around that mark give or take a bit. Hard to take off, but then again I do enjoy some more fattening stuff now that I can *blush* Down to 5mg and prob going to stay there. I don't think it's causing me too many problems.

[okarol]

Transitioning to dialysis was a real challenge, but since it was thrust upon Jenna she had no choice, at 18 years old. The transplant was planned (she was 21 years old) and she knew what to expect, but even 5 years later its been tough for her to take action and take charge of her life, to be autonomous and independent.

[bette1]

I don't know if it's easier to transition back to life if you're older or younger.  When I went on dialysis at 19, and had a transplant at 26 I jumped right back into life.  I had school, a job, and a fiance to go back to. 

After my transplant failed in 2006, it was much more difficult.  I think the job market made it a lot harder.  I was planning to go back to work, but I haven't found anything.  My health is not as good as it once was, so I also have to be much more particular about what kind of jobs I can take.

I'm lucky that I have family support, but being a homemaker is not very fulfilling.  I keep myself busy and I have a bunch of hobbies, but I would rather be doing something that I feel makes a bigger contribution to society.

[KarenInWA]

I'm 38, established in the sense that I have a good union job, a home of my own, a car that is almost paid for. I am lucky that I am able to work OT at my job if I need extra cash. Between that, my tax rebate that I never spent all of, and my short-term disability insurance, I was able to make it on my own while out for transplant. I am now back at work PT, doing that for 2 weeks, then will move up to 6 hrs a day for 2 weeks, then back to FT. I think it is easier to do this if you already have a job that allows you to do FMLA, because they then have to accomodate you while you're out recovering (up to half a year, I believe). So far, I have had no issues, and I even get to park in the "special" spot that is normally reserved for the "Top Tech" in my department! My supervisor, management, and co-workers have all been very supportive.

KarenInWA

[Ladystardust24]

I had my 2nd transplant July 28 2010.

after which, Lots of good things happened. Also, lots of bad things. In some way, it's been much over a year, but there's days I'm still really adjusting to life with a kidney.

I think on some level, I've done very well. But, I have days I just can't get out of bed. (After long thought, the depression is due to normal circumstances of stuff that has happened. Also, the transplant meds have a side effect of depression. Doesn't help that this runs in my family and I have a very long term anxiety disorder and PTSD)

Since 2006 then months of Late October to February have always been very hard for me due to things that had happened.

I was on dialysis 5+ years from ages 14-20(month short of turning 21) I found myself in that time. (More or less, as I like to believe we are constantly learning and relearning things about ourselves in life) I know many of the basics of who I am. But, some are very much missing.

I have found things that keep me going. Many of them outside of medical things. But also, my medical life is never too far out of my mind. A lot of my Occupy mingling and the help/groups i lead focus on living fulfilled lives (Fulfilled lives that include many aspects of what our human life is complied with)

Because one thing I refused to do on dialysis and now. Settle. As in, Yes, I was a "patient" but that was never who I was. (And, I've been this my entire life of 22 years) I never felt okay with being a "patient". I like to tell my doctors that being called a "patient" in normal context is not okay and a "hard limit" so to speak. I am above all else, HUMAN.

My medical life, a hard life. But has helped me in my life. The life I live of friends,family, work... My peers respect me. I refuse to just be part of "the system". Because, besides being a "patient" I'm a young woman. I like super dorky/geeky things. Like Anime/Manga. Web comics, Flash games, video games. Fashion, reading great pieces of literature, Redefining a society that's built on distrust of one another. Of hate rather than love. I love to write. I enjoy art museums, Star Trek and Star Wars Did I mention huge nerd?!) Travelling, documentaries, british shows, Sci-fi/Fantasy things of all kinds. Cosplay. I take all those things, and do the best to make my life.

Whenever I get icky thoughts about my donor, about whether I was worth this gift? I think about my friends, the ones that held my hair when I threw up from dizziness. The ones that at least once had my graph leak on them. My family of the same. I think about even now, when a waitress asks to refill my water, I wish to cry(And have on occasion teared up)

I think of the simple things I could not do before. At times, I think the road is so wide, and so long, we look out, and it feels like a greyhound bus just dropped us off at this road. Where do we go? If we go, where will it lead? But, if we sit there, we will never know.

Right now? I'm hoping to get a job as a receptionist at least for a bit. At least until I figure out my next step in life professionally.

Thank you for posting this, It's been hard not having anyone to talk about this with.

[Steve-0]

Yeah, I've gained about 40lbs (18 kg) since my transplant six months ago.  Combine Prednisone with a return of an appetite - and, man, do I like to eat....  but the kidney appears to be working well.  Blood pressure is great, labs are good.

Trying to get back into the working world.  Gives me anxiety.... but, I'm trying.  Sending out resumes now.... it's just nerve wracking.


~Steve

[jbeany]

Ah, yes, the joys of prednisone!