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by Patricia Wagner
In this entry, I’ll talk about how the disease started and a look into how I was affected. Bear in mind that every case is different and you shouldn’t conclude that you’ll go through the same things I have. My case, in fact, is more dramatic than most.
I first suspected that something was wrong when I began to lose some of my mental quickness and my physical energy. I also had many other symptoms: bleeding gums, bloodshot eyes, flushed complexion, and abnormally long periods. I saw different specialists for each problem. Then a blood test ordered by my internist revealed very high red, white, and platelet counts. Referred to a hematologist/oncologist in my health plan, I was studied periodically by him but received no treatment. He thought perhaps I had Polycythemia Vera but wasn’t sure.
Before I had time to get a second opinion, I had a brain stem stroke due to high blood counts. I had a beautiful near-death experience but returned to a body that was now rendered deaf in one ear. Not to mention an inability to speak without struggle, an inability to stay upright without hanging on to walls and nearby objects, and several long lasting neurological problems.
After this, I was no longer able to perform in the business world I loved. So, with my husband, also in poor health, we chose to retire quite early in life. We would make the most of this by selling our home and taking off in our RV. Prior to the stroke, I’d been told I had less than 10 years to live, so who knew what was left? I was eager to enjoy it whether it was brief or not.
I travelled to Mayo Clinic for the first time, where a doctor definitively diagnosed me with PV and began treatment. Initially, I took Agrilyn and was phlebotomized regularly. Thanks to orders which I could present wherever I travelled, I could continue on in the RV with my husband for over 2 years. When my counts became unruly and I began experiencing TIAs, travel ceased and my intensive research began.
I’ll talk more about that in my next entry, but for now let me say that due to my research I changed my treatment to Interferon and Plavix. I also began flying annually to see specialists throughout the country. By that time my overabundance of blood cells changed to an underabundance and my diagnosis was changed to Myelofibrosis. It was a good thing that I knew what to do and who could help me. During that time, I experienced a fair amount of pain in my bones, joints and muscles, and I had debilitating chronic fatigue in spite of adding Procrit. I took 15 or more prescriptions, and had a long list of complicating issues. It took time to overcome this, but one issue at a time, I was gaining a toolbox of knowledge and techniques which eventually helped me reduce most of this and regain a pretty good life.
I’ll talk more about being your own best advocate in my next entry. . .
To read Part I of Living with Myelfibrosis – http://sharing.mayoclinic.org/2011/08/22/living-with-myelofibrosis-part-1-of-a-4-part-series/
Dear Patricia, I was diagnosed with ITP at age 37, when I was married with and had my only child, then a BMB showed i have MF. My husband and I divorced 2 years later; his inability to
deal with my illness and sudden needs were a prime contributing factor. Now I am 42. I only want to date marriage minded men. Does anyone have advice on how to expain myelofibrosis to a potential partner? Help! Thanks you most sincerely.
I’m so sorry to hear how things turned out after your former husband learned of your illness. I am blessed that my husband and I remain together, although there were definite adjustments due to my illness throughout the years. I suppose that each situation is unique to the individuals, but perhaps you could break the ice on the subject with a dating partner by describing the side-effects of your MF as well as the type of care that you are in need of. If this goes well, perhaps you could give him something more in-depth to read. I wish you much joy, whether you eventually re-marry or remain single!
Dear Patricia,
My hem/onc. tells me that bone marrow biopsies are not necessary for me after diagnosis because she gets all the information she needs from the blood tests i undergo.
Why does Dr. Mesa feel an annual BMB is of importance? what does he
learn that he cannot find in blood tests?
thank you
I can only respond to this question from my own experience, plus the shared experiences of fellow patients: There is variance of opinion amongst hematologists regarding the frequency of BMBs. One of our most respected experts, Dr. Silver of NYC, says basically that if you don’t look you won’t see. He’s a true believer that one will see indications in the marrow that do not appear in the peripheral blood. I subscribed to this belief myself, after evaluating his results with those of other doctors who were looking only at the blood. However, since I have been under the care of Dr. Mesa we have skipped a year. He will likely order a BMB for me only if there are changes in either my symptoms or my CBC results. I’m okay with this, but would be reluctant to go indefinitely. Anyway, there is variance amongst our experts, and as your own best advocate you should research WHY they have these differences and then decide what you are most comfortable with. Once you know what you want done, why don’t you bring it up with your hematologist?
i divorced female. how does one date with a diagnosis of low risk
CIMF? and vaugue life prognosis of …well who knows. diagnosed 5 years ago at age 40, so doc says too few people of my age to know accurate prognosis and also each case is individual. please give any advice!
Where can we turn for such information about dating and how and when to bring this topic up to a potential mate? we wouldn’t just want a date to google for information… i can’t find any advice on this topic and would like to remarry. i would like to hear how others have
successfully broached the subject? i am divorced with 2 school age children. what do your doctors, therapists, whomever advise?