Florida Cancer Specialists & Research Institute — Attraction in Gainesville

I have been referred to this practice, SPECIFICALLY dr Vijay Patel, SIX times over the last four mos from pcp from er from other spec. I have even seen Dr Patel once for low iron saturation but then moved all care to UF (don’t do that.) Myself and my pcp keep getting the same response:”Dr Patel thinks you’d be better off at UF” when they KNOW I refuse to treat there, and denied scheduling being told practice mgr will call me back. During these 4 mos, I’d say about 1/4 of my hair has fallen out, I have no folate, my ferritin is high and rising, lipids high with blood clotting disorder and fibromuscular dysplasia,very low vit k and b12, calves burning crampinghistory of iron infusions, methylation inborn errors, and now er and urgent care over Xmas (no celebrating this year) for hypotension not explained by ekg or heart labs. I have asked the practice manager to provide me a letter in writing why I am being denied an appointment at Florida Cancer specialist, and I have not received any explanation or any letter over the last four months while my labs continue to get worse, and while I am going bald. I have NO idea why I’m being denied an appointment there. I Who knows. They won’t tell me. Seems purposefully cryptic . FCS seems to have a monopoly on hematological care in Gainesville so now I’m forced to seek an urgent appointment in another city, when I can barely make it to my appointments in town, and now I may need to be hospitalized bc of hypotension likely caused by hematological problems. I cry every time I take a shower bc my sinks are clogged with hair and I’m losing weight and so fatigued with NO answers or appointment offered. This has caused me so much emotional duress. In general , Gainesville is a medical wasteland. Get out of here if you are a rare/chronic disease patient, and if you want to have your basic medical needs met and patient rights kept intact. Funny they responded to contact them update: Denied an appt after mltpl referrals to Gainesville practice. Called for months leaving msgs concerned about symptoms and the fact that a pcp took me off my blood thinner. The reason I was given for denial , over and over again, “Dr Patel thinks you’d be better off at UF” to which I kept replying “I don’t want to treat at UF I have pulled all my care from there” t office mgr just kept repeating her reasoning. I finally make it to a hematologist. My labs are jacked: elevated lipids cholesterol high low b12 factor 8 (I have a blood clotting disorder and a prior DVT and my dad had a stroke at my mid age) other labs off: high homocysteine high ferritin low folate low k. I’m lucky I didn’t have a stroke while waiting for fl cancer spec to give me an appointment, which they were never going to do apparently.

This practice either discriminated against me bc I have mild cognitive impairment and ptsd, or they were told by the va not to help me, either way they UNLAWFULLY denied me an appt. I was put on high dose of blood thinners right away and told never again to come off of them. Now working to restore my labs with supplements and careful monitoring. I’m seeking legal representation. It is worth driving out of Gainesville to find another practice, unless you’re okay with literally risking your life....

What the heck was today at this place!? I had three appointments today 9, 10 and 2. The 2 o'clock appointment being at the cancer center to see Dr Patel and then after I was supposed to have an iron infusion. My daughter has juvenile indopathic arthritis so I write down all my appointments bc it's a lot and to remember them without confusing everything and so far it has worked great for me. Today Dr Patels office called me to confirm the appointment at 2 o'clock. I told them I didn't understand why I was being scheduled for 2 more iron infusions bc the last time I came for blood work it was shown I was in normal levels. I was glad I was seeing the Dr today bc I am having a colonoscopy and endoscopy to see why my iron was low. It may be internal bleeding and an explanation for why my iron dropped so low.....so I had questions for Dr. Patel. I was told on the phone I needed an extra boost and other numbers I didn't quit understand. I was okay with this and when getting off the phone I said at 2 today right and she said yes at 2 today. I got there extremely early I was there at 1:15 but I didn't mind waiting and if I got in early that would be great too. I watched the waiting room fill and empty like three or four times and was still patient bc I knew it was early. Then it went after appointment time....2 and then 230 I went up to the desk a few times and it was oh they know you're here they will call you in a minute. One lady even said oh your early your appointment is at 3. Huh? I was like I am early for a 2 o'clock appointment. That was the first time I heard of a 3 o'clock appointment. It was even confirmed for 2 a few hours prior and I have it wrote down everywhere. They call me back to the infusion center at 230. I was about to leave and I told the lady I was waiting 5 more minutes then I was leaving. That's what I said then the lady was pissed. She tells a man in the back you can help her. She is cussing and I'm not dealing with her attitude and throws my papers in front of a man in the back. Her embarrassing performance given to all the patients in the infusion room. I was like ooooookay. That was me cussing I guess and Im almost 39 years old so try treating me like and adult please. I told the man I was supposed to see Dr Patel before my infusion today and he had no idea and said that was probably what the confusion was with the appointment time bc they have me down for 3 for the iron and nothing about seeing the dr. Okay I don't know either bc thats what I was told was happening today at the appointment. I told him I just want to go home. The crazy nurse was exactly what I didn't need on top of it all. I have questions unanswered. They can cancel my next two appointments. I don't like playing guessing games and nobody is on the same page and changing appointment times and not seeing the Dr when your supposed to what a nightmare. I think the usual response is sorry about your wait not getting so upset you can't help a patient and what a liar. She was upset like someone was cussing her and thats all I said. Anyways.... ooooookay. Be professional but its not my job to go there with her. I hope to not have that...

First of all... Where is Dr. Patel and his entire team???

Yesterday was my first bad experience. FCSR reached out to reschedule my appointment (which would have been the first visit with a doctor, not a NP, since January). I show up at the time provided to be told they had me down for a different time and thus could not see me. I communicated the concern about possibly being at a precarious place in my health journey, upon which the receptionist called the doctor (new to me because.... well, where is Dr. Patel??). I was offered a blood transfusion. I've never had a blood transfusion in my life. A transfusion at this facility, no, but I have received medical infusions.

I explained this to the receptionist (very helpful) who repeated it to the doctor, who again made the same offer. I finally asked if they could get me another appointment as early as possible (I will be back in 2 weeks). I also asked if I could at least get my lab work done and they accommodated.

While waiting for my results I learned that since January one critical test has been eliminated from my lab panel. (When did Dr Patel dissappear, around January perhaps??) After explaining to the lab tech my concerns and a bit about my complex and multiple diseases, he called the doctor to get the needed test added. He, not a doctor, called with the result from THAT test this morning. It was not good. (This tech is awesome and went more than out of his way to help me). This will be discussed with the new doctor, I hope, when I return.

I used to work in medical administration (on an executive level) and realize that change and transition can be difficult so I hope that yesterday's experience was just an "off" day. I've only heard good things about the new doc (even though she offered care that I did not need and/or that could have possibly -???- complicated/compromised my health). I"m both optimistic and anxious. We'll see how things proceed from here.

Final note... Dr. Patel has left VERY LARGE SHOES TO FILL. He has my gratitude for his care and I wish him the very best...