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Hi guys,

I wanted to ask to see what type of attitude you find to be most effective, at least in living life to the fullest, despite the issues that come with post transplant.

Would love to hear your thoughts.

Basically, I'm a type A kind of guy, which I know from experience isn't the best.

I tend to worry quite a bit, especially when it's lab time. But there are also times I find myself just not living life because of fears of what may happen or worrying.

As a result, I know I haven't "gone all out" (at least without abusing or doing anything stupid) so to speak when it comes to living my 2nd chance.

My question comes as I attended a retreat over the weekend, and we were made to reflect what we've done. achieved, enjoyed, etc. over the past year.

While reflecting, I went back further, all the way back to from the time I got transplanted.

Unfortunately, this made me realize that I didn't do as much as I should, considering the blessing I've received.

Over the years, I've heard different people take different approaches,

  • Some live like they normally would with some precautions. 
  • Some live with a ton (probably too much) precaution
  • I've also seen some, go through life as they did, then worry about the issue (be it infection, lab result problems/anomalies) when they come.

Would love to hear your suggestions and experiences, as I try to change my attitude/way of living or approaching life as a tx patient.

Thanks.

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Replies

  • I've just found this post from over a year ago, and I am going to use this opportunity to lance an emotional boil.  My apologies for being so self indulgent.

    I became an emotional wreck during the decade before I got a transplant; my kidneys were failing because of fsgs.  I'd go to my neph for lab results 4 times a year or so, and I was well aware of the fact that my numbers were never going to reflect an improvement, rather, they'd only reflect how rapid a decline of function I was experiencing.  It was a nightmare.  I did everything I could think of to cope, from therapy to exercise to biofeedback.  The only thing I didn't do was go onto anti-depressants because I just didn't want to have to take one more pill.  So far, it was the worst period of time in my life.

    I was so blessed to get a cadaveric tx before I had to begin dialysis.  I'd had a functioning fistula for two years, but I got a new kidney before I had to use it.

    I'm healthy.  I do whatever I want.  I travel abroad and all over the US.  I have never used a mask, but I do wear gloves while gardening.  I probably should be more careful while eating out.  I've had my tx for coming up to five years, and I've done very well.  I've not even had a cold!

    But those pre-dialysis/pre-tx years took their toll on me.  I didn't realize just how much until several months ago when all of a sudden I had a rise in creatinine and a decrease in egfr.  This past month my numbers were much better, but right now I am awaiting the most recent results which are for my BIG annual check up.  I had to take a Xanax earlier today because I am so anxious. 

    But here's the thing, and if someone could help me out or share some thoughts, I'd be truly grateful.  As far as I can tell, I am perfectly healthy.  I feel just fine.  I have the strength and energy to do anything I want to do.  I have no rational reason to be so anxious.  My bp is perfect, I have really no side effects from the meds...everything is fine.  But I am a basket case.  I try so hard to "live in the moment", but it's as if I NEED to worry because if I don't, if I let my guard down, then I'll be sandbagged by some bad news.  That's what happened to me late last year.  My numbers had been so steady for so long, but then BANG!  Up goes the creatinine, down goes the egfr, and to this day, no one knows why.  And because of that, I have no idea what to expect with this new set of labs (I should get the results tomorrow).  Just as I was allowing myself to feel steady and confident, BANG!

    So, something inside of me insists on staying anxious because that anxiety gives me some warped sense of psychological protection.

    "Living in the moment" and "live in hope" is just asking for trouble.  Try to do that and BANG! 

    It's stupid because there is no evidence that my kidney function is going pear-shaped.  But to allow myself to relax is to make myself vulnerable.

    I'm REALLY going to have to work on this.  It's almost like PTSD.  I still have nightmares about having to go on dialysis even though I didn't have to in real life.  But my mother lived the last five years on dialysis, so I'm very aware of that particular horror.

    Again, apologies for my outburst.  I think I feel better, though!

  • I have found living in the moment and live in hope has worked for me.
  • Hi Everyone - I am 4 months post double lung transplant. I try to live normally with precautions. Every time I go to Clinic, my Dr asks me " Got any trips planned?" I recently flew to Nashville, saw 4 of my Grandkids, then drove with my oldest daughter to Ocean City, MD to see my other daughter and Grandkids. I'm living life to the fullest. I believe we all have a designated time to die, and onlyGod knows when that is, so just live life until your time is up. Find your passion and go for it!! Dancing and music is mine!!
    • You go, girl! I am so with you. I think it is important to treat each day as a special gift. Thanks for being you. :)
    • That is so AWESOME  Luanne! I am so Happy for you!

      Thank you for inspiring us!

  • Hi Ed- Hey, nice to meet you.  Im New here. Just realized this isn't that new of a post, but I think it is a great question. Sorry if this ends up long, I am wordy...

    I had my tx at age 13 and I am now 40, so my answer might be a little different.  As a kid, Im not really sure having a transplant changed my philosophy on life, as I dont think I had developed one yet!   It was all I knew, I didnt have much to compare it to. And as a kid I wasn't busy contemplating my mortality, I was hoping that my scar wouldn't show too bad.   

    I do think it affected how much I open up to people about my health issues, though,  Being a sick kid with little control over what was happening to me and having no say in who was told about my kidney tx, as an adult I am a very private person and do not share this with anyone but my closest friends.   It just seems sort of sacred and personal to me.  My sister who also had a kidney tx  is the opposite- telling complete strangers!

    And my Mom always made sure that I never let having a tx stop me from doing anything I wanted to do.  When I got sick and people commented how they wished doctors caught it sooner, she said she was glad we didnt know about my kidney disease until I was already in complete kidney failure, because it meant I was able to have a normal childhood growing up.   

    But as far as my attitude on life, I do tend to live large, in the moment, as a general rule,.  I have lots of stamps in my passport to show for it and have never shied away from adventures like skydiving.   I finally went to south africa this summer, which was a bucket list trip forever, and as my kidney just had its 27th anniversary I kind of felt like if I didn't go soon I might not get the chance.

    I do think there is probably a correlation between this life philosophy and me not having much savings to speak of, as I would rather do it now in case I don't have another chance.   But I do have a good job, a retirement fund and a pension when I retire, so Im not too financially irresponsible, even though I don't really think Im gonna need $ to live to 90 or anything...

    To be honest, until recently, I think I have been much less worried about my kidney function and much more concerned with my mental health, as my anti-rejection tx drugs have resulted in some pretty severe episodes of depression in the past.   But surviving that has also made me appreciate things more and expect some greatness in my life.   

    Take care all.  -R

  • Attitude is the most important
    Thing to have in post transplant. I have been in and out of the Hosp since Nov of last year . I have gone in every
    month except Jan. And it left my body deconditioned . And that left me unable to walk for 8mo and I had to go back on oxygen 8mo ago I am praying to get off of the oxygen soon
    I still can"t walk very far but it's getting better everyday.
    I don"t like it but I look at it as getting my car checkout. I believe that God has brought me this far and I know he will
    Not give up on me. A good can do attitude will take you a long way with this area of transplant
  • Hi Ed,

    I had my kidney transplant in 2013, coming up on three years in September. Until recently I was extremely phobic about germs, going to events in crowded places, eating in restaurants etc.I always carried masks and gloves and used them frequently. I still do on planes. 

    I was invited to see a concert in a 60,000 seat venue. My first reaction was "no way". I couldn't even bear to sit next to someone I didn't know for fear that they were sick.

    I asked my nephrologist's nurse what she thought about going out etc. She said, based on how long I've been with the new kidney, I should just go out and enjoy life. It took a while but I've managed to overcome my fear. I went to the concert and survived!. Been to the theater many times without masks and gloves, go to the restaurants, travel domestically with a good supply of my meds, etc. I do use hand sanitizer quite a bit and wash my hands frequently, but that's about it. I feel so much better, living life as normally as possible.I don't worry about infections, rejection etc. I've had CMV, but that came from my donor. What good does worrying do? Enjoy life, it's so fleeting.

  • Hey Ed...did I miss how long you've had a transplant. Been doing this transplant thing along time. My third kidney is going on 26 and I'm going on 60. Been doing it since I was 15.
    I'm easy going and little freaks me unless I feel like I'm not being listened to or feeling brushed off. Stress and worry are not good for our immune systems. I'd get some help if you're a real worrier. We are all doing the best we can and are "good enough." It's tough living in a culture that focuses on health, beauty and wealth.
    Peace of mind to all of us!
    • Hi Victoria, I just want to know who are all the 3 Donors for your New kidneys.
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