So, I saw my doctor........

[JoGee]

Good news! Had my checkup today. Far different than I expected.
Today he was very focused, very friendly, and very informative.
Got all my questions answered, and got good answers.
We are going to decrease my meds one more time, but balanced this time. That, in my opinion, should give better results. He knows my fears of the Med reductions and possible side effects, and acknowledged that right away, and we will work together on that.
I am going to be looking up a new med......it is formulated to treat primarily my mutated gene, (and is named after it). It's side effects do not include this blasted "D"! That will be left up to me, if I consider it appropriate. So I can wean off the current med and onto it in the next couple of months. Meanwhile, I can change the time of day I'm taking the current reduced med, which may be easier on me (if I decide to take it at night).
I also asked him to explain what I'm being treated for if not PCV.......he said there are several names "under the same umbrella". What you call it only describes which and how many cells are being treated. So PCV falls under this, but he is looking at it as Myelo Proliferative Neuroplasm.
So it looks like he is treating the problem with the least necessary meds. My lab results came out improved. My white cells remain high, but I do not have the leukemia disorder.
I also learned that his head nurse will check me next month; he'd do it but he is on the Bone Marrow Committee. (A latent brain cell kicked me and said, "Hey. This has to be a good thing, since your problem is within your bone marrow, Stupid!" And my instincts agree, that while his first impression wasn't that great.....maybe he was having an extremely busy day?....., but he has the earmarks of the very doctor I need at this point if not the future.

[Paula A]

So good to read this!

[Nalani]

Sounds like you have a very good doctor. And that's good for you.

[JoGee]

Thanks, Paula, and Nalani.
I feel much better with this doctor now. His ego didn't show at all, and he made so much more sense this time. I brought E along, and I think the doctor was glad that I have someone who can understand the medical terminology...just in case.
As much as I try to keep understanding what affects me, the terminology at times throws me. He slowed down a bit to give me a simpler understanding, and wrote down the thing I'm planning to read up on.

My daughter who should have been a doctor is ahead of me, and looked it up the minute I told her. The drug to deal with the mutated gene I have, is still experimental, but extremely promising. I will still look up and read it for myself, but I already think it's worth giving it a chance. She also follows and understands my medical experiences, so if anything happens to E, I will have her to rely on.

Remember the days when a doctor's word was golden, they were the "gods" of health? Then somewhere along the line doctors became "specialized", and GPs became demi-gods. Now most doctors are specialists, and GPs are resigned to the small stuff and refer you to the specialists for specific larger problems. But in today's world, you seem to have to acquire the information you need about your health problems. You need to make informed choices in your own care, and are the catalyst in making the changes or choices you need! In some ways it's scary, but over the years I have found that even the "professionals" aren't always perfect. Be it doctors, school teachers and principals, or whatever. You need to know the facts to deal with the situations.

[cookielady]

So glad to read things went better than expected. You are WAY more patient and informed that I would ever be.

[JoGee]

Thanks, Cookie. Yes, I try to stay as informed as I can. Since this condition began, I've seen a LOT of doctors. Some were wonderful. Some not so good....and when they make a decision and your life is on the line, it gets scary!
I'd rather be able to talk to and work with the doctor I'm seeing.
This patience is because I took into account that my first appointment with him was at the end of the day; no doubt pretty tired, even though he came across as abrupt and terse. I admit I was disturbed and angry afterwards. Finding out all he does and is responsible for, well, I wonder how he is still standing upright in the late afternoon. This earlier appointment showed his caring side, and while he could talk with E in medical terms, he was glad to break it down further so I could understand. Plus, he is willing to work WITH me. That's a plus. So, I'll work with him more easily with him, since he can understand my concerns.
As I drop the dosage on my med, he now understands the concern for balancing the daily dose. I know the side effects that may hit, but by the time I'm ready for the new drug, which doesn't have the nasty side effect he tells me, I'll be doing good. It will be a relief if I can drop most of the drugs, and he's confident that I can.
We will be watching my lab work results closely, to be sure everything is working right.