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  • My name is Robert, and this is my first post. I've never done this before, so bear with me. I am a 68 year old, single and live in Tampa, FL with a family member.  I mid 2013 I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF). At that time my symptoms were hardly noticeable except when doing strenuous activities, and I didn't even realize the seriousness of my condition.  Gradually, I became unable to do more and more activities, and about a year ago I began taking Ofev, which is a drug which can slow down the progression of IPF, but not cure or reverse it.

    About 6 months ago, I was referred by my Pulmonologist to the Lung Transplant Team at Tampa General Hospital (TGH). Being accepted as a transplant candidate is easier said than done. Before they accept me, they need to be sure that I am healthy (other than having IPF). A month ago, I had to have 2 arterial blockages repaired with stents, and next month I must have  a colonoscopy.  I also have had lots of blood work done (I assume) to check for any other possible problems.

    In addition, before TGH will even consider me as a candidate, I need to have my post transplant support team lined up. This seems to be a major obstacle for me since the following requirements must be met:

    1. I will require round the clock (24 hr.) care 7 days per week for a period of at least 3 months, therefore having 2 to 3 caregivers is advisable;
    2. The care givers must be able to drive me to my doctors appointments at the TGH Clinic about 2 times per week and also get me there in an emergency;
    3. They must be willing and able to administer 8 to 12 new medications to me up to 4 times per day;
    4. Professional in home care is not acceptable to TGH since they prefer family or friends who would have an emotional tie to me and consider care giving as "not just a job":
    5. Being in a skilled nursing facility for the 3 months is also unacceptable since the nurses will have other patients, and these facilities are considered to be breeding grounds for germs and bacteria, which could be fatal to a transplant recipient.

    This leads me to ask the following questions:

    1. What suggestions do any of you have for helping me to round up an acceptable support group? 
    2. If I'm accepted as a candidate, how long are the waiting lists (time wise)?
    3. If I was to receive a transplant, what should I expect during recovery?
    4. Assuming I made it through recovery, how long could I reasonably expect to live (barring unforeseen problems) and what would the quality of my life be (restrictions, medications, etc.)   

    Answers to any of these questions would be appreciated.



  • Is there anyone who takes liquid oxygen, and is it safe for liver transplants?

  • I am 1 1/2 years out from kidney transplant and I have something called the BK virus also known Polyomavirus. I have 14000,00 in blood and 10 billion in the urine. I don't really understand what this is and why I got this but the doctors said it is common in transplant patients.
    • Hi Karen,

      I'm going on 13 years with my kidney transplant and I had the BK virus for several years while taking meds to help reduce and eliminate it entirely.  Thanks to my transplant team at Tampa General Hospital I am now free of BK virus.  Feeling great.  God Bless

  • I had my kidney transplant 1/4/2017 at University of Washington in Seattle, WA USA. To date my team has been wonderful. The testing and screening was very thurough and time consuming but now I understand why: they want a great outcome!

    I was part of a paired kidney exchange. My wife & I have stayed in touch with "our partners" and it's great to compare notes with them. Stay informed, never let your gaurd down regarding your Rx's & care.

                                                        ANY DAY WITHOUT DIALYSIS....IS A GREAT DAY!!!

  • I had my liver transplant at Johns Hopkins Hospital MD. Dr Cameron and his crew are the best
  • My liver transplant was at Florida Hospital Orlando by surgeons with Florida Hospital Transplant Institute in Orlando.I am about to celebrate my 59th birthday (9/13) and then my 7 year anniversary (10/26) of my transplant and being cancer free. A blessing like no other.


  • I had my double lung transplant at the university of Wisconsin in Madison, Wisconsin, fantastic doctors and nurses and they have a real good success rate on their transplants, I am just over 1 year out so my medications are still being adjusted up and down, in the last few months they haven't changed much, guess everything is finally coming together.
  • Received a living donor liver transplant from my Son on 08/15. I ended up at Northwestern Memorial in Chicago after visiting Mayo and Madison, WI. I Chose well.
    • I had my liver transplant at NMH also ----- it is a great place -- I am 6 years out!! Good luck to you always.

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