Has anyone been to Tampa General Hospital for transplant?

I feel so bad that you r be treated like this, WHY would she not want to get him on the TP list and give him and you support. Does he have cirrhosis, has he had liver disease long. Yes I was tired a lot also make sure he drinks/eats protein protein very important when you have liver disease.
I was put on TP list immediately due to being in end stage liver disease. I was dx w/NASH cirrhosis 1/20 had my work up 8/20 by Oct 2020 I had a LTP. I was blessed 😇
I am so happy u have such good support from neighbors/family.

@lsheerin,
I had my successful liver and kidney transplant 14 years ago. I lived with the slowly increasing side effects of cirrhosis while being monitored my my PCP and GI. My disease, a rare one, was Primary Sclerosing Cholangitis (PSC ). after 8 years of monitoring I was referred to transplant center for evaluation. I quickly learned that the transplant process is complex and confusing. It is definitely not as Hollywood presents it to us! I began in Kentucky and was later transferred to Mayo Rochester where I received my successful transplant. I was actually evaluated twice, and each time I was reminded that the evaluation is one step - the beginning of my journey.
After my evaluation At both UofK and Mayo, the transplant center's selection committee met to discuss my situation to determine whether I was healthy enough to undergo surgery, or whether I had any health issues that needed to be resolved first. I remember that the waiting seemed like an eternity until I received notice that I was eligible to be listed for a transplant - when/if organ became available.

I want to share what Mayo Clinic says about liver transplant and the evaluation process.
"The goals of the evaluation process are to determine whether you:
- Are healthy enough to have surgery and can tolerate lifelong post-transplant medications
- Have any medical conditions that would interfere with transplant success
- Are willing and able to take medications as directed and follow the suggestions of the transplant team..."

Mayo Clinic Health Library
Liver transplant
https://www.mayoclinic.org/tests-procedures/liver-transplant/about/pac-20384842
lsheerin, I hope you will read and share this link with your daughter. Liver transplant is a complex and complicated journey.
When does your husband have his next doctor appointment?

Thank you, Rosemary. Congratulations on 14 years!!! Thanks wonderful. Luckily, my husband was fine with the entire evaluation. he is healthy enough for surgery, no other medical conditions and he is more than willing to take all medications. my biggest question at this point is when are they going to discuss him at the meetings to place him on the list. the coordinator I have is horrible. She gives no information, talks down to me, talks over me, says I ask too many questions, etc. I did call the social worker Friday afternoon. I'm hoping on Monday, I get some news that we have a different coordinator. I have no idea when his next appointment is. She tells me nothing. I have no direction and it's so frustrating. I hear of so many people having great outcomes and that keeps me going.
Tough times don't last, tough people do!!!

I am so happy you got your surgery!!! How are you feeling? Many Dr.'s have told us he will feel so much better, better than before he even got sick! I honestly don't know why this coordinator wouldn't want him on the list, but she is just so confrontational and outright rude. Not what we need right now. He hasn't been sick long at all. 3 months ago, I noticed his eyes had a yellow tinge to them. I told him to go to the primary and it evolved from there. Aside from being tired, he feels pretty good, Thank God. He spent about 12 days in Tampa General having the evaluation. No problems, all cleared for surgery. That's why I don't understand why he's not on the list yet. Hopefully, I'll have better information next week. I am so happy I found this site. Reading about other people's journey's really helps.

Isheerin, I am so glad he has the pre TP work up behind him. The good news is he has been approved for surgery so that must mean he was brought before the TP committee.
R his liver enzymes and meld score high.. They should tell you soon if he is on the list and how urgent he needs his TP.
He will feel better, but their r ups/downs in the beginning so he must do what his TP team tells him to do. It is definitely a journey to be given a second chance at life.
You r in my thoughts wishing u and your family the best. This is a lot on you for sure being the caregiver.💚😊 continue to let us know his progress.

Please go to Mayo Clinic Jacksonville. It’s the Only place to trust. I got my liver there. Orlando hospitals told me to go home and call hospice. They said no one would give me a liver. It’s unbelievable how badly I was treated at Advent Heath.
Mayo is the absolute best! Going on 8 years post-transplant.

Congratulations on 8 years! I am so happy for you. What an awful experience at Orlando. Can I ask why they would not give you a liver?

Congratulations, I am shocked at hearing the stories of how TP patients r being treated. Why would a Dr say that to you.. I hope u showed that Dr. 😊
So very happy for you. I am almost 3 years LTP..

Hi

That is nasty.
I live in Florida and my transplant was done at the University of Virginia Hospital in Charlottesville. Virginia. I used to live in Virginia and moved to Florida a couple of years ago. The transplant was done almost 4 and a half years ago.
I go there every year for my annual discussion with the hepatologist and the kidney specialist. I wanted to transfer my care to a hospital locally and only one hospital was willing to talk to me. That was the University of Florida in Gainesville. I did go there two years ago and they said they will work out a comprehensive plan. Today is the 20th of June 2023. Thus far no one had called. So I am sticking to the Hospital in Virginia.

Hi everyone,
I am new to this as I drove down to Jacksonville for evaluation for transplant of Liver. I have a long history of liver disease being diagnosed with Hemochromatosis in 1994 via punch liver biopsy. Treated for years until Hematology stop it.
They then said I have Polycythemia Vera, then NASH, then on and on. My GI doc told me one day, it really doesn’t matter what got you here, but this what we have to move forward.
He diagnosed me with cirrhosis. That was in the early 2000s. I requested 2nd opinions and started seeing Artium Health Charlotte. They have followed me for 10 plus years, and I have been off and on stable. Fall of 2022, I got COVID and ended up in the hospital but this was a blessing as they found I had blood sepsis with E. coli. I was like how in the world would I have gotten that. But it about took me out. I was out of work from 10/23 the day I was admitted until 12/15 when I returned to work. Was in and out of the hospital during this time. My liver not being in the best of shape, started failing and I have every scan known to man. MELD 29 with Bili 10.7. Interventionist GI did ERCP and EUS finding my common bile duct was blocked. They cleared this and placed the first stent.
I felt better than I have in years in Jan. 2023. But they have to mess with a good thing. Feb 2023 stent removed and another blockage found.
Early April 2023 full blown pancreatitis and back in hospital and again sepsis with E. coli. Third ERCP/ EUS and replacement of stent. But they noticed a growth in the bile duct. They biopsies that and it was positive for high grade dysplasia.
The Atrium Health liver team got involved and said this was a Cholangiocarcinoma, which is rare and has high mortality rate. But they said Mayo has a protocol for this with 5 weeks Chemo, twice per day Radiation, then transplant.
Thus why I am here. Due to aggressiveness of this disease my whole life has been turned upside down. My wife and I met with Oncology on 06/16 and I underwent MRI, MRCP, labs on Friday. Saturday morning was back for CT scan of chest to r/o Mets.
Then we came back home waiting on a treatment plan.
MD presented me to the Tumor Board yesterday 06/20 but transplant surgeons are also involved in that meeting.

Scans found no Mets outside the liver but they did find more involvement within the liver. Not sure if this will exclude me from the program as only way I know what I know is from the patient portal. MD did note the Tumor board wants additional biopsies which will be 3rd set since April. But not sure if they will have me come back to Jacksonville or have this done locally.
I am praying to get a call to inform me of some plan as I feel I have a ticking time bomb in my body. I want to start treatment wherever I need to go to receive it.
Has anyone else dealt with this disease??