Not sure if this is the place to write a follow up note. I have written before as ESPERANZA but the format for commenting is very unclear to me. SO if it needs to be placed somewhere else, please do so. I have been diagnosed with ET and positive JAK2 about 4 years ago (MAY2015). Here is the latest on what I have been going through.
It has been awhile since I commented here. I have been sick. My platelets have been higher than usual, since I have been on Hydrea (2 a day, 7 days a week) and they have been controlled until recently. So y Oncologist increased my dosage to 3 a day for the last 6 weeks. However, a strange thing happened. Back in January I had a bone marrow biopsy to see if my ET had possibly morphed into MYELOFIBROSIS and maybe it would explain the leg and hip pain I have had for almost a year. Well, it came back negative fo MYELOFIBROSIS but positive for MYELODYSPLASIA and some anemia. I was told I would have to start the VIDAZA injections 5 days a month for months or years possibly. I was approved by Medicare and scheduled for these treatments. A few days before they were to begin, I went back for blood work and my red and white cells were so improved that the Doctor postponed the injections fro 6 weeks. After 6 weeks, the MYELODYSPLASIA did not even show up in my blood work. I must give credit to GOD. I had prayed that HE take away at least one of my conditions, as I have quite a few. Well, even though I have had to increase the HYDREA, (platelets did finally come down to the 430,000's from the mid 600,000 where they were with the 2 HYDREA a day.
I spent a week in the hospital after that, since I had a terrible pain in my left shoulder blade all the way through to my chest. After waiting for it to calm down, it actually grew worse and after a visit to the ER they hospitalized me for a complete cardiac workup. Praise the Lord my heart was OK, no blood clots, no pneumonia, but after all that, all I could think of (I had had no falls or known injuries) was the VEST machine that my pulmonologist had sent and I had been using for about 6 weeks. I did not have the actual vest, but a wrap around. If anyone knows what this is, it is a machine that vibrates your chest and helps clear the secretions our of your lungs to avoid pneumonia and asthma exacerbation. Well, after the cardiologist sent me for x-rays of my ribs; sure enough, I had about a 2 week old fractured rib which was causing the pain. Now, I am on a waiting list for one of the other problems I have to be addressed which is a complete left hip replacement. So, I am praying my platelets stay stable, as well as everything else so I can have this surgery.
One of the concerns I have in the near future is that for this surgery I will have to be off of ALL aspirin and platelet medicines (HYDREA) for 7 days. Not sure how my platelets will react and will it affect my surgery and post surgery treatment?
I guess we will find out. My Oncologist has said I could hold one day of HYDREA and I have to tell her what the ORTHOPEDIC doctor says of holding all blood and platelet thinners for 7 days prior to surgery.
Oh, the complications that can arise when several things do wrong with these bodies.