The Standstill

I have prided myself on the level of detail and honesty I have been able to bring to this blog.  Last week was the first time I had a symptom I wasn’t comfortable sharing.  I still don’t feel comfortable discussing the specifics, but it is playing a bigger role in my overall health and wellness than I had originally anticipated, so I need to at least provide the basics:

Last Monday when I saw the “substitute” doctor, I had a few new symptoms (most notably a GI bleed) that had started the day before (Sunday, August 21st) and ended up lasting about 24 hours.  The doctor referred me to a gastroenterologist (GI).  I saw the GI specialist on Wednesday morning (August 24th). She was great – very thorough. She was able to take a topic that’s typically awkward and taboo to talk about and normalize it. I felt comfortable sharing with her, which is a huge part of any good doctor-patient relationship.  While she doesn’t think anything serious is going on, she thinks it is better to be overly cautious and double check anyways. With that in mind, she scheduled me for a colonoscopy at NYU Hospital on Friday, September 23rd. The procedure is routine and outpatient, but I will have to be under anesthesia, so I’ll be there a couple of hours. Hell, I’m more nervous about the anesthesia than the actual procedure.

Here is why this information has become relevant to my hematological condition… My GI and my hematologist spoke this past week and compared notes. By the time I saw my hematologist today he already had promised my GI that he wouldn’t adjust my Prednisone until after my procedure. That means another MONTH on 40mg of Prednisone before he will even consider tapering the dose. To add insult to injury, he told me the original plan was to have me tapered off by the end of September, but this procedure pushes the timeline back a full month (minimum).

I asked for an explanation and, to my dismay and frustration, his explanation makes logical and medical sense. Though my colonoscopy next month is precautionary/exploratory and the GI fully expects to find nothing, if there IS something out of the ordinary that needs to be biopsied, that can’t be done unless my platelets are above 50,000. Based on the way my hematologist explained it today, they usually won’t do the procedure at all unless the patient’s platelets are above 50. The only way to ensure that is the case is to keep my Prednisone dose the same (since it has been keeping my platelet count fairly consistent). He doesn’t want me to do all the prep work for the procedure, just to be told the day of that my blood count is too low to proceed.

I appreciate my hematologist looking out for me, I’m glad he communicated directly with my GI so that I didn’t have to play messenger/nothing got lost in translation, and I’m relieved that the Prednisone is keeping my platelets steady, but despite all that I’m frustrated. The Prednisone is still causing minor heart palpitations, extreme shortness of breath, hot flashes, and worst of all – weight gain. I get intense food cravings on the Prednisone and it’s making me balloon up. My face and stomach just look and feel so unnatural lately. I hate knowing I can’t even start tapering off of the Prednisone for another month.  The hematologist has already warned me that once I do start finally tapering off the steroids, it is going to be a very slow taper, so as not to cause a relapse of my original condition. In other words, I’ll be lucky if I’m off the steroids by Thanksgiving.

In terms of my counts, I have no definitive results from today’s appointment. Usually the machine spits out a platelet and hemoglobin reading in a matter of minutes, but today it seemed to malfunction. It showed my platelets at 69, which would be a slight drop (down from 80), but not unreasonable. It didn’t register a count for my hemoglobin at all, though, which is obviously inaccurate. The doctor is going to send the other vial to the lab (as per usual) and wait on both the full CBC work up and the differential (manual count). Since I don’t see him again until Tuesday, September 13th, he said someone from his office will call me with the results of the differential and the CBC results will be posted to the patient portal.