Well 18 months ago my platelets count were plummeting to zero; I needed absurd amounts of cortisone to be stay above 20k; IVIG stopped working and I was strongly resistant to take the treatments that could make me infertile. And then I took Mabthera and my count soared.
Since then I have been above 150k. Occasionaly 400+k. Once I dropped to 121k but went up again.
Since then (the 121k) I have been very careful to try and only do the count when I feel good and healthy; and when I feel uccky I try not to test unless I have good reason to be concerned!
And then on Tuesday, I had a headache did a platelet count (114k) went onto antibiotics crossed my fingers.
That night just after midnight I experienced rigors. I started shivering uncontrollably and feeling very very very cold. My wife took my temperature and I had no temperature. I was shivering so much I could not talk properly; and my wife rushed me to casualty at the hospital. By the time time I got to the hospital the shaking had stopped. I returned home.
I took a platelet count the next afternoon.
Not a happy moment. I have never been that low and not kept falling to hit zero.
I phoned my doctor and made an appointment for the next morning.
I did a count Friday morning.
I was really relieved. (Funny that the way one feels to a count is so relative!) Meanwhile I felt that worst of the virus was over. I was keeping my sinuses clear and sleeping.
I chatted with my doctor. She said that long term statistics were coming in on the Mabthera. That in Belgium patients were staying in remission 36 months, 48 months.
She said my strange rigors was probably because due to all the immuno-suppressants I have taken over the years my body does not react properly to viruses. (As well as being asplenic.)
I said I did not want to touch any cortisone or anything else unless I started presenting. She agreed, she said it was clear that cortisone for me was not a solution from my history. She said she would prepare the medical aid that I appeared to be relapsing and that I must test again on Monday (today) when hopefully the virus would be gone and lets all just cross fingers and press thumbs.
I tested at 6am this morning.
I immediately grabbed my tefillin and talit and rushed off to shacharit. (The Rav asked what my Mother’s Hebrew name was and I was not sure, better find out so he can get the special prayer said for me…)
And I then set off for the 45 minute drive to work.
Looks like I am still in remission! And I had been trying to decide what books to take with me to hospital.
Well hopefully this is a good sign for the new year!
Happy New Year.