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

[Steve-0]

I was diagnosed with ESRD in a whirlwind of an ER trip on New Years Eve, 2002.  I went from being a wild, carefree fun 24 year old who'd felt sick for a while, to a 24 year old sitting in a dialysis chair. 

That's a life changer, and getting used to that was hard.  I was lucky; I had my first transplant in November of 2003.  My father donated, and everything looked great - but two months later, they had a lymphatic fluid collection problem, so they went back in to correct it, damaged the kidney - it never worked right after, my creatinine levels and BUN hovered high for three years, keeping me off dialysis but ultimately it failed and I returned to dialysis.  I was on dialysis for four and a half years this time - I learned to live as a patient.  I rarely felt well, but did my best to get through life.

The last year of my life was rough; I was in and our of the ER a lot, and I honestly believe I would not have made it through the year - but I recieved a kidney from a donor.  He was on life support, and his parents donated his organs.  I got the call Friday, July 22, and I was in surgery at 3:30 AM that night. 

Getting a kidney transplant is a miracle, and mine has worked amazingly since that day.  My creatinine at one point was .6 - it's settled into .9-1.1 now.  Still, amazing.

But what they don't tell you is how to get back to living life..... I'm kind of directionless here.  I've been sick for so long, and I got sick at a point in my life before I'd established anything - a career, a family..... I feel like I'm kind of drifting here now.  Everyone talks about what a miracle it is, but it's not as easily emotionally to just jump back into life.


~Steve

[fearless]

I can see that it would be a problem, with your being so young.  But it does sound like a good problem to have.  (sorry if that's insensitive)  I just have a lot of confidence that you can "get up to speed".  You have an outlook that others your age won't have, not having gone through the intense difficulties that you have.  Maybe you can use that to your advantage - you know what you value and don't need to waste time on the useless stuff.  For myself, when i need to get in touch with what I really want after having been "out of touch" because of the stress of trying to live and meet basic needs, I find that meditation can help me "remember" my true self: the things I dreamt of as a child.

[Restorer]

I'm afraid of that too, once I get a transplant. I don't have any family or career to hold me down - but I don't have the immediate support that many people do, or the career to go back to. I still have to finish college if I want a job with health benefits. I have more than a year of college left - and I somehow have to do that in the year after my transplant before I no longer qualify for SSI (and probably Medi-Cal, and on the same criteria, probably my mother's Aetna plan too).

On top of that, I've been - as Steve-0 said - "living like a patient" for the last couple of years, and potentially a few years more. I've lost my grip on my field, a rapidly changing field that's now so far ahead of me, thinking about catching up feels like starting over. Until I have 10 years of job experience, I'll have to answer the question, "why did it take you 10 years to get your degree?" or "what did you do from 2005-2008, and 2009-2013?" - assuming I get a kidney anytime soon - and by that point I'm fighting the odds to keep the kidney. I don't have the professional network that many engineers have when they graduate, or the option to spend more time to make one.

I have a vague plan, but no idea how I can do it financially or realistically.

[Steve-0]

Well, it's not a good problem to have - but it's a better problem to have than having to deal with dialysis.  But there is almost an amount of "Survivor's Guilt".  I have friends who are still on Dialysis.  I hate telling them how well I'm doing, by the numbers.

That's just the thing; the numbers are good - yes - and being able to pee is amazing.  But there is some emotional baggage to it all; it's not just "pop a kidney in me" and I'm ready to go.  They don't tell you that.  And I remember, how it was to sit in dialysis and be jealous of others around me who got transplants - and I never once thought about any emotional issues they may go through with the procedure.  I just thought about myself and my own anguish in the chair.  I'm actually rather upset about my selfishness and insensitivity.


~Steve

[coravh]

Steve - you weren't selfish or insensitive. You simply had no point of reference. It's hard to get back into the swing of things. I found that part of getting me back on track, especially in the beginning, was something as simple as walking the dog. I hadn't been able to do that before. Work on taking one small step at a time. I can't advise you on your career options, but know that with hard work, the sky is the limit.

Best of luck. I know it's hard to adjust, but with a bit of effort you will be able to get over the hump. Don't waste time on guilt. Your doing well will be wonderful news for the donor family and you will make them happy by everything you do that is not in the chair.

Cora

[willowtreewren]

Steve, I might advise that you consider going back to school to learn a new skill. You have a life ahead of you and the sky truly is the limit.

As for the guilt, that you got a kidney was not your choice, so let that guilt go. 

Aleta

[jbeany]

If you haven't already, read the "Starting Again after Transplant" post.  It's a very, very long discussion about and among those of us having issues retraining our brains and re-adapting our thinking to being relatively healthy again after years spent ill. 

It does seem like everything should be better after.  Unfortunately, while a lot of things ARE better, some things haven't changed and some things have gotten - well, if not worse, certainly a lot more terrifying. 

If you are going through this in the States, that 3 year eviction notice from Medicare is a huge worry. 

Thinking about dating is a touchy issue, too.  I'm not sick, but then again I'm not well.  Do I get involved with someone who hasn't seen me at my worst?  Is that fair to them, when transplant failure is looming, no matter how close or how far in the distance?  Plus, of course, the issue of how your looks have changed with the side effects from the meds.  Hey, I was a nearly bald woman with half my guts hanging out for the better part of the first 2 years after transplant.  Last I checked, most dating services don't have a checkbox for that under "Description."

And then there's going back to work.  With health issues.  In the crummiest economy in years.  Wheee, what fun after a decade without a job.   

Funny, isn't it, that there's all that grilling pre-transplant about your mental health and stability, and no one ever asks how you are coping after it?

You aren't alone, Steve-O, if that helps any!

[fearless]

jbeany, you sound like one tough lady.  I have been on D for 8 years and it has totally trashed my appearance (such as it was to begin with).  i gained a lot of weight on PD, then developed Sjorgren's, so the sides of my face puffed out.  (these have both resolved somewhat on hemo)  but then there are the ever-present dark circles under the eyes, and the puffy droopy eyelids that show up when the fluid gets a little high.  LOVELY!  Your blunt statements reminded me of the courage that always has so much appeal, regardless.   

Sorry Steve-O,  I know I'm off topic.  I should probably shut up because if and when I get my own transplant, I have a feeling I will be out-of-sorts too!  So, let me just wish you success in getting on track, and let us know what you sort out...
cheers

[RichardMEL]

Interesting topic.

As I was reading Steve's original post I was thinking things like "Oh, but this totally opens up the possibilities to do whatever..." but that's very simplistic and as you point out doesn't come close to addressing the emotional issues after dealing with D specially with all those complications of ER visits etc - all you'd have known for those years was medical stuff rather than really having a chance to settle into anything. I was lucky - I had a steady job, I had a steady lack of love life( ), I had my home, my cat etc and because I had a career, had done all my schooling years ago etc, that from that point of view I was "set" and since I was stable on D I could still do work, get rejected by girls when I asked them out, and stuff and D was mostly a annoying part of life, not what consumed life. Now I have the tx I am blessed to pursue more of what I want to do - like travel, get rejected by girls, work more hours, pay more taxes and feed my cat The usual.

About the guilt - try not to feel bad that your turn came up. This is the lottery of life, and your number came up. I am greatful that when I got that call that I have the opportunity to live more normally. I thank the generosity of that person, whoever they are, to sign up to donate and that my match came up. It's easy to say then that's why you should try to make the most of it - but I know it's not easy for you.

Perhaps start slow, think about the things you like to do - your interests.. where could that sort of thing lead? look for some education as suggested, or training, or something to help achieve those goals. As for other things you want like a family... I can't help you there mate - I can't even get a date!!! sorry ! 

I do feel though if you feel more settled in your life, as in building a path towards doing something you ike, or getting some work etc that self confidence etc will follow and the other things will fall into place over time.

good luck!

[Restorer]

Another thought I just had: the title doesn't even work. "Transitioning Back to Life After A Transplant." That implies that you have a life to go back to, someplace to pick up where you left off. I really don't. If I did at one point, I've left it behind, and going back would be difficult. It's literally starting over, and I have no idea where to start, and no one to help me get to a starting point and push me in the right direction.

[RichardMEL]

I suppose it depends on how you define "life" - I never really thought of it that way for myself (and sorry, I hate writing about myself so much) but everyone's different and has different experiences. I think your idea of "starting over" applies very much to Steven also given where he's at. In a way it's like a blank canvas - full of possibilities. Scary yes - but potentially full of many rewards!

[rsudock]

This reminds me of the thread "Starting again after transplant" I believe CARIAD started it....it is hard to find your footing after transplant....but when we are young we must! Forgive me Steve-O I haven't read your introduction yet so, I don't know where you are from yet, but in the US once you have a transplant you are kicked off of Medicare in 3 years....we have to have a plan B. Private message me and I can help you plan out some possiblities if you like. I helped my one student on D the other day with a life guide/plan thing....

Hang in there!
xo,
R

[bette1]

This topic touches home to me.  As many of you may know, I started D at 19, and it's affected my life and the choices I've made ever since.  I don't have an answer, because I'm still working through it. 

[Steve-0]

I'm actually very fortunate in two areas: I met a girl while on dialysis - she married me, and was my NxStage partner for two years.  She's also a Nurse at the VA hospital - and thusly, we have very good private insurance.

I guess I'm just dealing with a lot of emotions, as anyone who's suffering from ESRD - on dialysis or not - is.  I guess even I, who feels himself quite practical, had the rosey colored vision that a transplant would change everything for the better.  Not saying it didn't, because not doing dialysis is a miracle - it just comes with a handful of other issues you have to learn to deal with.

If anyone's curious about my backstory, it's covered at length in my blog - http://thekidneyboy.blogspot.com - The Kidney Boy Blog.

I really appreciate everyone's insight here.  It's just good to see what others who have gone though this, and have yet to go through it, have to say.

Thanks all!

~Steve
 

[Deanne]

As someone on the transplant list, I'm very glad you're talking about this. I haven't been on dialysis and am hoping to avoid it, but I really don't know what post-transplant life will be like. It's great to read about different perspectives. I mostly assume that my surgery will just be a small bump in the road and my life will continue the same as it is now. Maybe so. Maybe not. I won't know for a while. Hearing other peoples' experiences will help me face whatever comes.

[olivia]

I totally understand what you are saying Steve-o. The expectations that come with the transplant is high from everyone, especially our own expectations.
I was lucky, didn't do dialysis yet, had a transplant just in the nick of time. My job and family are still here for me. I work full time, have teenagers at home, friends and family that want attention. I cant seem to keep up with it all. But I am grateful and lucky to have all this.
First after transplant being nothing but a patient drove me nuts. And after a year of transplant the sideeffects of the drugs, the infections, the viruses all seem to be a bit overwhelming.
I expected more from this transplant, more energy, more healthy feeling ( even though labs are perfect)
What I'm trying to say is that even with my life still in order, I still think" OK what now"." Can I handle all this?" "Wish I worked part time."" Am I expected to do something super great with this super kidney?" "OK, so I look great, I dint feel so great, is that ok with everyone".
I do plan on exploring life more, one day at a time.
In our area we have a careerlink, which helps people find jobs , prepare for interviews, do resumes. Anything like that in your area.
I have spoken to other people who have joined gyms, or bookclubs, yoga, meditation classes, music classes, hiking clubs, cooking classes, college classes, art classes.  volunteered at hospitals or non profit agencies ( that's a good way to get your foot in the door for employment.
Starting over, or starting again is very difficult.
Getting to this point took a long time and getting a life again will take time as well. Hope this helps you.
Olivia

[Steve-0]

Olivia,

Thanks for the wonderful and insightful post! 

As much as some people may think, "pop and organ in and get on with an amazing life", it's a little more complex than that.  Though, I'm not going to lie - after not peeing for almost five years, it's good to pee again!


~Steve

[olivia]

Ahhh yes, The Joy Of Peeing!!!!
Makes it all worth while!!

[jbeany]

I agree with Olivia.  The upsides are fabulous.  No more D, no more giant needles, more free time, more energy most of the time - it's all good.  It is the stuff they don't warn you about beforehand that gets to you, though. 

Like the fact that your hair is never going to be the same, if it's there at all.  My latest discovery on mine - it now has an end point for growing.  It used to be down to my waist and grew really, really fast.  After 5 months without so much as a trim, it's still at chin length.

Or the fact that prednisone makes the fat in your body shift around.  So my face is rounder - and my boobs are flatter.  Peachy.

I knew from reading on here, but none of the docs ever mentioned that the first few months of prednisone at high doses was going to triple my appetite, either.  No one on the transplant team said a word about the fact that most people gain huge amounts of weight - like 30 plus pounds for many of the people who have talked about it on IHD.  The prednisone appetite, combined with the freedom to suddenly eat what you want, is a baaaad combo.

Come to think of it, none of them mentioned the possibility of crazy mood swings, either.  I was bawling at TV commercials for a while.

That initial month or two of diarrhea while your body adjust to the meds is a real joy, too.  So is the fact that it comes back every time they start mucking around with the doses.  And if they really screw things up, you get to add constant nausea to the mix, too.  That's been my last month.  I'm constantly carrying a barf bag in my purse for emergencies, and I ALWAYS know exactly how far it is to the nearest restroom these days.  But hey, they did want me to lose some more weight, didn't they?  Good thing, because the only sure-fire cure I've found for constant nausea is to stop eating more than about a cupful of food at a time.  If it's not there in the first place, you can't throw it up.

It's not that I'd have said no to the transplant if they had told me these things - but if they had mentioned them as possibilities, it would be a lot easier to handle them.  "Oh, they said this might happen." is so much easier to cope with than "What the @#$%@ is going on now?"

[edersham]

I experienced pretty much all the guilt, emotions and frustrations, fears and worries expressed above for the first 16 months after transplant . I kept networking and trying to find more than just part time work in my chosen field even though I am 64  yrs old. Suddenly a discussion about a short term consulting opportunity blossomed into a one year opportunity for full time employment. the knowledge that for at least a year I'm now a provider first and then a patient has improved my feeling about myself and my disease tremendously even though uncertainty still looms in the future,
Doesn't it always. I think using some of the advice offered above to find a career choice that provides motivation to relentlessly pursue an opportunity can be tremendous therapy for a transplant survivor and turn your focus from the challenge of being a transplant patient to pursuing a career challenge.

Ed




 

[Sunny]

I have found it very difficult transitioning to work. Nobody will give a 51 year old woman with the last 6 years not working a second look. I trained to enter a new field post transplant, yet I can't even find a volunteer job in the field. I also have great difficulty with memory, neuropathy, and carpel tunnel syndrome post transplant (15 months now, yippee!). I keep myself moving forward regardless, and life is oh so much better now. You are young and hopefully that will make a big difference for you in your chosen field.
P.S., Don't tell prospective employers about your transplant.

[RichardMEL]

Reading some of the responses here underlines for me that everyone's transplant experience WILL be different. For example my plumbing has been fine, and while I had extra appetite from the preds, I put on 7kg and pretty much have stayed there give or take a bit. Some people have better experiences than others absolutely and some of our, shall we say, more experienced campaigners have had difficulties getting back into working and the like - and I admit fully that I have not had that issue, but then again I worked right up till my tx and then continued on afterwards with very supportive managers. I am very lucky.

I sit here though and I reflect that I just came back from a lunch where I had a honey soy chicken on rice with veggies and a milkshake and did  not ONCE think or worry about the potassium or phos or whatever in there, or having the fluid. Having that freedom and that I could enjoy a lunch with my co-workers where the only decision was what did I feel like, not what would the renal diet allow... that freedom is wonderful.

I understand living with transplant is different for everyone and everyone's situation is different. i wish those with tx and those on the way there as good an experience as I have had (so far, anyway!)

[Lovebelle]

I have not had a transplant yet, and I still work, although VERY part-time. But I do worry at times what life will be like after transplant. I work in an environment with sick people. Everyone comes there with strep, weird infections (some very contagious) and the flu. Plus we administer the Flu-mist (which is the live flu virus). How am I suppose to function in that work environment. So there is a part of me that is coming to a realization that I may have to change jobs post transplant. I guess I will have to cross that road when the time comes, but its always at the back of my mind. I work for a good company and I like my job, but realizing it may be a bit too hazardous when the time comes.

[KraigG]

Are they still using Prednisone as one of the anti rejection meds?

Sure hope not, because then you have the weight to deal with. I put on over 100 lbs after my transplant. Then the Pred will make hair grow. Everywhere. Your eyebrows triple in size.

And your face turns round. Moon face, we used to call each other when we met in the waiting room for our blood results.

[willowtreewren]

Are they still using Prednisone as one of the anti rejection meds?

Sure hope not, because then you have the weight to deal with. I put on over 100 lbs after my transplant. Then the Pred will make hair grow. Everywhere. Your eyebrows triple in size.

And your face turns round. Moon face, we used to call each other when we met in the waiting room for our blood results.

Kraig, we call that round face the "chipmunk cheeks." My husband is down to 5mg of prednisone/day at one yer post TX. He was lucky. He did not gain any weight, but he could have used a bit more meat on his bones..... 

And he is certainly much fuzzier than he used to be. 

They started him out at 20mg/day. 

Aleta