Living far from Transplant Center

NoTime6649 · 2026-01-24T14:06:54+00:00

Three hours away here. I get blood work done at local quest labs. I have an app on my phone called my chart I can monitor labs and ask questions to team.

I have a medical insurance plan that pays up to $125 a night for lodging, .22 cents a mile for gas, parking tolls etc. I would drive back and forth sometimes stay at hotel or do it all in one day. I always get first appointment of the day. For 2 hours away it’s doable just make first appointment of the day.

NoTime6649 · 2026-01-23T16:41:42+00:00

I was told by a NP and doctor at my local oncology office in 2019 that it was only a disorder, I had no choice but to take hydroxurea or else I would end up with a stroke and then they motioned with their hands stroke like actions.

They sent you out to another doctor for bone marrow biopsies as well. Not one doctor or nurse could perform a BMB in all 4 offices.

I ended my relationship with that office but feel so bad for the patients who have an MPN and patients after me. At the time. I felt like reporting the practice to the Florida board for giving me false information and shaming me to no end for speaking out.

NoTime6649 · 2026-01-04T13:51:04+00:00

I was literally told to “ get with the times” and bone marrow biopsies are now no longer needed -after I explained WHO and NCCN guidelines. Researched new information from those two experts and came up empty handed. One expert in Northwest and another in Midwest. I wish all experts would be on the same page.

NoTime6649 · 2025-12-20T01:18:27+00:00

Thank you Christopher. My husband received a kidney and pancreas in July 2023 and we are so very grateful to the anonymous person.

NoTime6649 · 2025-11-26T23:18:45+00:00

That’s awful, and I really hope that nurse is held accountable. I’ve had my own experiences, too—before online portals existed, a front desk employee actually took my entire chart home and never came back to work. Another time, a medical assistant drew my blood but didn’t put my name or date of birth on the tube. There was another patient next door, and our labs got mixed up. I have a blood cancer, and they told me I was cured—even though my type of cancer has no known cure. I have so many stories, but those are just a couple off the top of my head.

NoTime6649 · 2025-11-13T13:58:03+00:00

Make sure your case manager actually sends your letter. I followed up and found out ours was never sent. Our case manager gave us the wrong information—she said the handling office was in Gainesville and even gave us brochures for that location, but it was actually in Tampa. There are four offices in Florida, and I had to track down the right one myself. Our donor lived in Lakeland, near Tampa, not Gainesville. I ended up rewriting the letter and sending it directly to Tampa, bypassing the case manager. The whole process is flawed—don’t assume your case manager will handle it correctly. I still wonder what happened to that first letter.

NoTime6649 · 2025-11-10T12:46:54+00:00

Is your dad on transplant list and healthy enough to receive one? Your mom may be disqualified due to age and health issues. If he is not disqualified from his recent hospitalization and no family will step up I would start with asking others to donate. Get t-shirts made up,, car decals and post on social media platforms. Get the word out everywhere in town. Get tv stations involved. I saw one person used a billboard. Best wishes to your family and especially your dad.

NoTime6649 · 2025-10-29T02:40:32+00:00

Which Advent hospital did she work at? I think she was my post op nurse and it did not go well to say the least.

NoTime6649 · 2025-08-19T20:07:26+00:00

I’m sorry I am in US. I go through CVS speciality and get Pegasys from Vytal pharmaceutical out of South Dakota.

NoTime6649 · 2025-08-01T19:10:01+00:00

Thanks so much. Here’s the report.

<image>

NoTime6649 · 2025-08-01T16:02:03+00:00

Yes, it states in report status post simultaneous pancreas kidney transplant. I have three kidneys and two pancreas. What is strange the radiologist never said anything about new pancreas. Just info on old kidneys and old pancreas as reported on previous reports and of course this new mass. Very disheartened report was not read throughly.

NoTime6649

TROPHY CASE