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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

  • 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.
  • I have had my kidney/liver TP for 4 years.,I follow the number one bullet. Normal life with some extra hand washing and stress/fatigue avoidance. The only thing that makes me nervous is traveling out of the country with insurance issues, and language barriers...so, I haven't strayed too far.
  • Ed, so glad you shared your heart. This is hard to do with those on the outside. We all are different, post tx. It is ok, trauma changes everyone...EVERYONE! We then continue in this metamorphism, depending on much criteria. We all have our one road to walk: sometimes we walk gently, cautiously... sometimes we throw that very caution to the wind. Let yourself be who you are, where you are and let life be an adventure. Continue to ask yourself how being overly concerned, brings you fullness of life? Wait for your answer; it will come. Don't rush, don't force yourself to change, just leave room and breathe. Most of us feel like we are on a sailboat on the ocean where every day brings challenges or we are riding the wind with the warm sun on our facse. It is all ok, it is "our lives". Be free.
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