Connect
Getting nowhere with current Hematologist
Guess I just need to vent a little bit here… I’ve been seeing the same hematologist for over two years and I’ve made zero progress as far as getting proper treatment for symptoms/side effects for my PV!
This hematologist’s main focus has ALWAYS been my “numbers”. We began treatment with phlebotomies but they did not help. Then I took Hydroxyurea for 18 months which caused multiple problems and side effects and more - but this doctor was “satisfied because my numbers came down.” During those 18 months, my quality of life greatly diminished to the point of me being wheelchair bound and needing home-nursing care for the last 14 months. Nothing I said or requested or discussed with this hematologist ever helped. Whenever I was in need, she was often unavailable or would not respond at all. Plus whatever we discussed at my appointments was often mis-quoted or not acknowledged at all in her summary notes. Needless to say, in addition to now being chronically ill, the added stress and frustration from dealing with this particular doctor has been unbearable!
At my last appointment, her only comment was: “well I guess we were too aggressive with treatment and your quality of life stinks but (she) has no answers as to what to do about that now.”
Unbelievable!!
I typically am a very positive person and I do not like to share negative experiences…. but as I said, I just needed to vent. I kept praying that this hematologist would eventually understand what I was going through and would help me, but I was wrong about that.
Just wondering if anyone else has had similar experiences with a very “incapable doctor” and what did you do that was helpful?
My options for finding another specialist are minimal as the closest ones are 6-8 hours from my home.
Any suggestions?
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
Based on what I read here from so many patients is that ET patients need oncology clinics to provide some info about HU to patients newly prescribed before they start taking it. Discuss nausea, diarrhea, hair loss, skin changes, dosing strategy, importance of blood monitoring, proper handling and storage of pills, alcohol and smoking risks, need for condoms, long term effects and how those could be addressed. My original oncologist told me the chemo nurse would do a phone consult. She never called, so I phoned in. She just about laughed in my face. "We don't counsel for HU. Just go get your pills and start taking them." I get that a 60 year old with an indolent chronic cancer doesn't need as much hand holding as a teenager with acute lymphoma. But geez! I got more info and reassurance from the Rite Aid pharmacist when I picked up my HU.
-
Like -
Helpful -
Hug
6 ReactionsThanks, Lori. I’m OK with the Connections I have for right now.
-
Like -
Helpful -
Hug
2 ReactionsAs another 77 year old I appreciate your comment. I’ve lost several friends because they could not get their heads around speaking up when they disagreed with their doctor and get second opinions.
Time has taught me there is very little that is perfect in this world. I consider myself lucky that there are so many more innovations, treatments and cures for diseases than there were years ago.
-
Like -
Helpful -
Hug
4 ReactionsOne of the Doctors I respected the most during my 40 year career was The Chief of the Medical Intensive Care Unit. Not only was he an excellent clinician he was very insightful. He would always say, "don't look at the numbers only.....look at the patient!" How very true! And witnessed it many a time. He was so comfortable in his role as a physician clinically, morally, ethically. He would even speak with his patients even if intubated....the eyes can say so much, questions answered by hand squeezes! A true physician......BTW not trained in the USA...trained in the Netherlands.
-
Like -
Helpful -
Hug
1 Reaction