I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Steve-0 on December 11, 2011, 03:50:09 PM
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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
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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.
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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.
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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
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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
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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. :cuddle;
Aleta
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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. :P
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!
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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
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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( :rofl;), 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 ! :rofl;
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!
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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.
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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!
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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
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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.
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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
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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.
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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. :rant;
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. :waving;
Olivia
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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
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Ahhh yes, The Joy Of Peeing!!!!
Makes it all worth while!! :beer1;
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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?"
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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
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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.
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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!)
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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.
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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.
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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..... :rofl;
And he is certainly much fuzzier than he used to be. :rofl;
They started him out at 20mg/day. :o :o :o
Aleta
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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
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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).
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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.
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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.
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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.
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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.
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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
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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.
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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
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Ah, yes, the joys of prednisone!