Has anyone been to Tampa General Hospital for transplant?

Posted by lsheerin @lsheerin, Jun 15, 2023

Has anyone been to Tampa General Hospital? My husband learned he needs a liver transplant and the nearest hospital to us that does the procedure is Tampa. Everyone has been great while he was there for the evaluation, but since he has been home, he has an out patient liver coordinator that is really not good. She talks down to us, she says I ask too many questions, she has told my daughter her father may not get a liver, so don't count on it. She has all but called my husband an alcoholic, which is far from the case. Just curious if anyone has encountered anything like this. This is stressful enough and I really don't need someone who is suppose to be helping to make things so much worse.

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myfablife | @myfablife | Jun 22, 2023

I am LTP patient I am so hopeful that you will get some help. I unfortunately I do not know anything about your disease , just wanted to give you the best with getting some thru this difficult time.
💚😊

cfknowles1999 | @cfknowles1999 | Jun 27, 2023

Have you spoken to your doctor regarding your coordinator? I had an issue with my kidney transplant coordinator at TGH year and a half ago and mentioned it to my nephrologist and he said it was not the first time he had heard of issues with that particular person. Since then my coordinator has been changed. I believe you can request a new coordinator. During Covid they were understaffed but I think they are in good shape now.

jamesduaiswamy | @jamesduaiswamy | Jun 28, 2023

Hi
This is a very sad state of affairs in Tampa Hospital.
The transplant coordinator is your point of contact for everything and 98% of them are just fantastic.
I had my transplant done at the University Of Virginia Hospital in 2019 since I use to live in Northern Virginia. The service and the personnel are the best in the industry. From the best advice to aftercare is still the best.
I move to Florida a couple of years ago and wanted to transfer my aftercare to any hospital in Florida.
Unfortunately, no one will take me in, since the transplant was done in Virginia, except for the University of Florida Hospital in Gainesville. Florida
We visited the hospital and after a comprehensive consultation process and the hospital said they will call me with a plan of action.
That was in January 2022. Until now I never received a call.
I am not sure if this is the quality of service offered in Florida which is of course disappointing.
I have stuck to my hospital in Virginia since it has been almost 4 and a half years after the surgery, I visit the hospital just once a year.
If they find some anomalies they will request me to go to the local hospital for procedures like, CT scan or MRI. Thus far I have been only once for a CT scan in Orlando and that’s about it.
I sincerely hope Mayo will take care of you. This is an arduous process but with no alternatives.
It is not fair to judge anyone, especially with a liver-related problem that is life-threatening.
I sincerely hope that you will be taken care of ASAP

myfablife | @myfablife | Jun 28, 2023

You would think that someone would want to help even tho u did not have the TP in Fl. You would think they would work w/you. Seems so wrong.
I hope you will not have any problems..

jamesduaiswamy | @jamesduaiswamy | Jun 29, 2023

Thanks for the kind words.
Yes indeed. That is the state of affairs in the hospitals around, perhaps it is a dollars and cents issue.
Typical Liver Transplant Surgery and aftercare for both the patient and the live donor would cost in the range of a million dollars. Thank God we do have private insurance in the USA and it does help.
Most probably if a hospital cannot make any monies out of the patient who has already gone through the process, then why bother?
This makes sense from a business point of view.
After multi-national companies’ takeover of the hospitals, the non-profit format seems to be a thing of the past.
Regardless, I am very thank full to the hospital staff and my transplant team at the University of Virginia Hospital.
Every breath and day is a blessing.

juli175 | @juli175 | Jul 1, 2023

I got a liver transplant at TGH in May 2023. My wait on the ‘list’ took almost 1 year. I understand why they are reluctant to provide details since there are so many factors that go into finding the right match. I had all but given up when I got the call. I had no issues with my coordinator but was frustrated with not knowing when/if the transplant would happen. I liked my coordinator though. Sounds like you just got a bad one and I’m sorry to hear that.

lsheerin | @lsheerin | Sep 29, 2023

In reply to @juli175 "I got a liver transplant at TGH in May 2023. My wait on the ‘list’ took..." + (show)

Hi,
Just read this. How are you doing? I am so happy for you that you got the surgery. Can I ask your MELD score at time of transplant and how far are you from Tampa General. My husband was finally added to the list last July 11 and now his MELD is 25. We live 145 miles from Tampa. I drive for a living. We own an airport transportation company, so a trip up to Tampa is a piece of cake for me, but I hope they don't think we are too far. You start to get nervous about everything. He was in the hospital for fluid retention a couple of weeks ago and they told him they had a liver for him. You can imagine how excited we were. A few hours later, they told him it went to someone who was sicker. I don't ever think I have been more disappointed. How did you deal with the wait? Almost a year...it's only been 2 1/2 months and it seems like an eternity. We jump each time the phone rings. Any information you can give me about the process at Tampa would be more than appreciated.