New here and scared

13»

Comments

  • DanF
    DanF Member Posts: 12 Member
    #42

    Hello Kim,

    Again I am so happy you have a sound provider looking out for you because they literally make the difference on this journey and here is to hoping you/we all just kick cancers **** and move on quick into remission. My 11 year battle is getting old and tiring with so many challenges and even though I have never made it into remission I am still alive and not giving up hope.

    May I please ask, do you ever get muscle spasms or severe cramps in your abdomen (on the side you donated from) that feels like your side is just winding up and tightening and not letting go? Then the only thing I can do is lay out straight to fight it to get the spasm to subside eventually. It's quite the wild experience especially if in a tight space like a vehicle or plane where you can't alway lay back straight.

    Not sure if your donation was laparoscopic or left a lengthy scar like mine since I donated back in 1998. Back then there were only two places in the country that I knew who where doing laparoscopic transplants. Obviously a long time ago and things have changed and come such a long way.

    Way back then there was only Pittsburgh and Georgetown University. I did some pre-testing at Georgetown since I was living in northern Virginia just outside of D.C. at the time and was very lucky to have met the amazing Dr Vitkus who is a liver specialist there. He was kind enough not only to help with testing before he offered to get me in at Georgetown for the transplant. However my sister lived in West Palm Beach FL so she wanted it done in Miami which was great too with the founding father of kidney transplants being our surgeon -Dr Miller. Literally the very next day after surgery Dr Miller flew to D.C. and met with President Bill Clinton at the time to discuss national policy regarding transplants. I felt very lucky to have been operated on by someone of that stature and with that much knowledge. Still had complications back then prior to surgery like being put into anaphylaxis shock but this spasm thing is the only side effect that has lasted the duration.

    Sorry to ramble and hope you have a great day.

    Take care,

    Dan

  • DanF
    DanF Member Posts: 12 Member
    #43

    MI60,

    It is always great to chat and share with others in the same or similar shoes so do not be a stranger here or with other groups and organizations. Once I stabilized (after 7 surgeries) I then started getting involved with the National Kidney Foundation and Stupid Cancer prior to Covid. Even if just forwarding letters and requests to politicians for our cause or going the local walk/run fund raisers they are always great place to see others who share the pain and suffering physically and emotionally and yet we all just keep looking forward to sharing more time with others in a positive and productive and fun environment.

    We all have to keep going and find that beautiful opportunity that each day provides us. I personally will always choose to live laugh love and experience so many more wonderful experiences no matter how dark a moment may appear they always clear up like a storm just passing by. I send you the best wishes warm hugs and again am hoping for a smooth surgery with a super fast recovery and then back to LIVIN for you.

    Cheers friend, have an amazing day as well.

  • MI60
    MI60 Member Posts: 15 Member
    #44
    https://csn.cancer.org/discussion/comment/1719055#Comment_1719055

    You to as well.

  • DanF
    DanF Member Posts: 12 Member
    edited November 21 #45

    ****AMC society they keep screening and deleting my messages without anything negative. Good luck on your battles when even services like this suck.

Discussion Boards