Wednesday, April 12, 2017

ITP-a year later

Last week, I went skiing with my girl. It was my fifth (and final) time this ski season, well more than I went last year, or any other year since my teenage days.

A year ago, (almost to the day, it was April 6, 2016) I received the results from a CBC that confirmed what was at that point my greatest fear. The ITP that had hospitalized me in February had resurfaced, and lowered my platelet count to a dangerous level of 9,000 platelets per microliter of blood (normal is 150,000-300,000 per microliter of blood). This development moved my diagnosis from the much hoped for "one and done" classification of acute immune thombocytopenia to the more persistent and more difficult classification of chronic immune thrombocytopenia.

I was discouraged to say the least.

We tried putting me back on high doses of Prednisone, which caused all the side-effect problems that Prednisone often does, but didn't provide any lasting increase in my platelet counts this time around. This was concerning and somewhat confusing to my doctor, because I had responded extremely well to Prednisone during my first exposure to the disease. We gave it a bit more time to work, and then when it didn't, we moved on from oral steroids to intravenous immunoglobulin.

And so it was, that last year, I spent most of April 13 and 14 sitting in the infusion center in the hospital, watching Madame Secretary on Netflix while crocheting and getting very expensive plasma-based antibodies pumped into my bloodstream. When I wasn't distracted by Tea Leoni or my crocheting, I worried. I worried about where this new road  was going to lead me, what kind of changes I was in for, whether my doctor(s) and I would ever find the treatment that would work, how we were going to manage it all financially, and a host of other fears and concerns.

When I would have those concerns, I would talk to Jacob or Mark, my brothers who also happen to be General Practitioners. (My father was on vacation in Israel at the time, didn't know what had happened with my platelets, and naturally I didn't want to ruin his trip with concerns over my health.) Jacob and Mark were both very helpful, particularly as they each assured me several times that in their experience, ITP was something that was manageable, something that lent itself very well to a normal life, something that I would get a handle on. I specifically remember Mark explaining to me that nearly everyone finds a treatment that works for them, and they are able to go on and live as they want to live, but that it generally takes time to find the right treatment. When I pressed him as to how much time it generally takes, he reluctantly gave a time frame of several months.

I remember at that point the clouds of doubt and despair in my mind kind of dispersed, and I asked something along the lines of the following:

"So, I'm going to need to plan on this being something I'll have to work on and deal with and be flexible about for a year or so, but chances are that within a year, I'll be in a place where it's more of an annoyance or inconvenience than anything else?" 

Mark assured me that yes, we had every reason to hope and believe that this would be the case. At that point, life got quite a bit better for me, because while the thought of this being my "new life" was very daunting, the thought of it being something I'd work on for a year felt manageable to me. I mentally set aside the next twelve months as "the ITP year" and got on with living it.

Within a month or two of all this, I was referred to  a hematologist who started me on another medication regimen (steroids again, but this time it was Dexamethasone in super-high doses for four days per month, for six consecutive months),  all the while confidently assuring me that we would be able to get this managed, and it would probably happen sooner rather than later.

The Dexamethasone treatment was difficult of course. I endured brain-fog, exhaustion, irritability, and a host of other side-effects as I went on and then had to withdraw off the medication each month. Still, it did its job, and I didn't have to look too far to see those who were worse off than me. So, all in all, I was grateful, and continue to be so.

As I mentioned, those days in the infusion center were April 13-14, 2016. Tomorrow it will have been one full year since I had that conversation with Mark, and I've been living a steroid-free, active, happy, rich, and full life since the second week in November.

These days, ITP is something I think about when I notice a new bruise or two on my legs or arms. If I get a few larger-than-average bruises in a short amount of time, I generally get my blood tested, but so far, all tests have shown my platelets to be well within the safe zone. I did gain about twenty pounds during those steroid months, and I'm finding those pounds to be more difficult to lose than I would like to be the case. All the same, I can honestly and joyfully say that at this point, ITP is a nothing more than a minor inconvenience in my life.

Mark and Jacob were right.

Boy, were they ever.


Jamie Younker said...

How have I forgotten that other people still post on their blogs!? This thing called Instagram has sort of taken over and made me feel like I'm staying connected with friends and family, but really it's just the surface stuff. I miss you! And I miss going deeper than the surface. I loved this post. You are such a bright and positive person! Perspective is everything!

Maimuna Hassan said...

Indeed you are an inspiration to all who are going through hard times! Best wishes for you.
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