Getting nowhere with current Hematologist

I put up with the same for one full year being on HU. The Dr acted like the great oz and never seen me after the initial visit unless I was sooo upset with the PA because everything to her was nothing to her how I felt by the roll of her eyes. Then he would come in and go through his scare tactic and leave it at that, that I will be on HU for life and have to put up with the side effects, and what really irritated me that it was probably all in my head. All I did was sleep on my couch after getting up from bed. I would try so hard to go out to lunch with my sister and it was a total force. I felt I was aging at a rapid speed in the year on HU. My Primary care told me of another hemo/onc and decided to go for it after thinking about it for months. I then called my Primary care and told him I can't take another day on HU and if I stopped it that day would it be a risk because I finally got the apt with the new Dr but not for a month. He said there would be no harm. I stopped HU in middle of Feb/25 and had my new appt in middle of March/25. I was petrified everyday until seen the new doc and I still felt just as sick off of it while it was coming out of my system. My blood was drawn at the visit and I expected the platelets to be sky high and they were normal. I have had them drawn four times since and even once in ER for a unrelated problem and still normal. I am not on HU since I went off on my own in Feb and will never go back on it. This new Dr understands how sick it made me feel and is so much kinder and understanding as well as his PA. He would like to see me on something down the way and said he will research a new med out of the chemo family. I have been on baby aspirin for 20 yrs + because my parents both had heart problems and I just started taking it. I drink 100 percent grape juice and drink green tea daily as well as take a turmeric every so often, all that are suppose to make the platelets not sticky. I see my PA in two wks and then my Dr in late August and each time I go in with my fingers crossed that all is still well. I do have ET as the new Dr said but he said we will wait and watch and see for awhile regarding meds. I know this could end at anytime but for now being off HU gave me a good portion of normalcy back as how I felt. I wish you luck in finding a new hemo/onc! it took me a year to make the break from the other heartless one I had, if he saw you in the elevator he wouldn't even acknowledge you as he had his big bag of lunch in his hand. I am very friendly with all my Drs we laugh etc and this guy was total opposite. At first I gave him a chance and thought oh well as long as he's good BUT he wasn't he had a one track mind and he was very arrogant. I had looked up his reviews as time went on and he was given reviews I wasn't really shocked with he is really not liked! Again, good luck in finding someone new and being able to feel better. Janet

I once had an informal lunch in the hospital cafeteria with some doctors and lawyers. One said, "There goes doctor death." I looked up. It was my (fired) oncologist who had prescribed Lithium for Leukemia😱.

He is either my past onc/hemo or related to him.!! Some of these Drs think they are gods and are killing people. It's always hard to switch to another Dr because no one wants to start over but it is our lives they are dealing with and we just become a number to them, It took me a year and that was it as I was getting sicker and sicker by the day and I switched, so far I am happy with my new hemo/onc. I also in the past worked with a surgical asst group and always told me which Drs to run from even if taken to an ER and certain ones came near me. They used to say about one Ortho Dr even if you can't walk if taken in the ER just slowly fall off the gurney and crawl out because he was known to have patients die in surgery for a simple back surgery. I worked in the health field for years and seen so much. Have a good day.

I have had several pt/,ptt's with my blood draws and in ER for an unrelated reason. One checks the velocity of the blood and the other shows how long it takes you to stop bleeding. I do have on and off BP problems which I am on Lisinopril but it is mainly for my CKD also. Like I mentioned I take a baby aspirin and dietary things to also prevent stickiness of the platelets. I started eating some plant food as well and it brought my cholesterol and trigs down to almost text book numbers as my cardio said. I quit taking the COVID vacs because I read they raise the platelets also and could cause blood clots. But now it is all one day at a time and I still cringe when getting my cbc for the platelets reading but I have had four draws since going off HU and all have been norm my last result was 382. In two wks I will get my next draw and I am holding my breath already. My platelets were never real high at around 500+600 and once in my life they hit 700. Now they are 400-300's. Hope this helps your question. Janet

Thank you, Janet. I did not realize that the COVID vaccine had an impact. My numbers are around 1 mil for some time now. I continue to try healthy lifestyle management (diet, exercise, supplements, acupuncture), but nothing has worked so far. I have been approved for Besremi so will start that soon. Glad your numbers have remained stable and relatively low. Have a great day!

Please do verify the effects of COVID (and flu) vax on ET with your hemo, and weigh this against any dangers of getting COVID. I am CALR+ and have had the vax every six months and noticed no change in my platelets. But people do respond differently to all these things.

I am so sad to read that si many people also had bad experiences with their first hem/onc. I had a lot of faith in specialists and it took me quite a while to fire mine. No one ever teaches you to advocate for yourself and it doesn't always come naturally.
So if you're reading this and thinking about your current bad experience, please talk to your family practice about a second opinion.