Wednesday, April 25, 2007

My health issues

So I keep trying to post info on DU, without soliciting advice, but there is at least one poster on that site that keeps messing me up and getting my threads locked so I will post my stories here.
First of all for the last couple of years I have had a couple of chronic conditions that have been pretty well controlled. One is sleep apnea. Through medications and a CPAP that is under control. The other condition is a rare blood disorder called Essential Thrombocythemia (ET for short). Its part of a group of disorders called Myeloproliferative Disorders (MPD's). Basically its a group of disorders in which the bone marrow makes too much of a particular type of blood cell. In my case, its platelets, which are the cells involved in clotting. Not only does my bone marrow make too many, but they are often made wrong (too big, incorrect structure ect) which can lead to both bleeding and clotting issues. A normal count on platelets runs between 100-400. On meds I am about 450ish. I start feeling unwell at about 700ish. To put things in real perspective on my illness my last count was an all time high of about 974! When it gets this high I get fatigue and headaches and tingling in hands and feet.
A couple weeks ago I started feeling ill. At first I thought it just was a stomach bug but it got worse. Crippling fatigue to the point now that all I can do is work on my computer in bed, just getting up and walking around is exhausting. Trying to run errands is difficult. And my job in the lab..impossible. I have been on indefinite (unpaid) leave for almost 3 weeks. Maybe I could work, but I don't want to push it and I have noticed that I seem to be good for about 2 hours before I wear out and then I pay for it later. Anyway, also I noticed it becoming harder for me to eat and then when I would eat a regular meal, I would vomit it up several hours later. For weeks I had noticed diminished appetite but had attributed that to stress. Now it is much worse and I noticed pain in my left side as well. My first thought is, my ET which I have been off meds for since last July is flaring up, simply going back on my meds (hydroxyurea) will solve it. Called my hem. Had a quick bloodwork exam. The bloodwork at that point was a little elevated (platelets at 630) but aside from the soreness in side there was nothing visibly wrong. My hem sent me for a CT scan to look at my spleen since enlarged spleen could have accounted for the symptoms. Nope. Negative. I went to my GP who had me do some bloodwork. Well my complete bloodwork showed everything is going crazy! Thats where I got the 974 platelet count along with high wbc's, high hemoglobin, high hematocrit, borderline high blood sugar, high blood pressure! My gp has simply given me meds to treat certain symptoms and referred me back to my hematologist and to a GI specialist. After confirming my blood counts with another test (and sitting there literally with his head in his hands in confusion) he also is waiting for my GI results. Finally after talking to my GI specialist he says he needs to look at both my stomach and large intestine. So on Friday I go to get not only a colonoscopy but and endoscopy of my stomach as well. In fact after 8am tomorrow morning (Thursday April 26th) I must start fasting in prep.You do not want to know what I need to do Thursday night to clean myself out in preparation...yuck! And I thought drinking banana smoothie flavored barium was bad...I will update my blog as things go on.

2 comments:

annduk said...

I really hope that they will get to the bottom of the problem and sort out a treatment that helps!

Good luck with the tests!

Ann

neuralgourmet said...

Best of luck with your health issues. Glad to hear you're getting treatment though.

FWIW: I have sleep apnea as well and I tried a 100X homeopathic solution... er, not! I got treated with BiPAP a few years ago and it's amazing what a diff it's made in my quality of life. The altie-woowoos who insist that "Western medicine" and "big pharma" are worthless parasites and everything can be cured with snake oil really piss me off no end. Sleep apnea aside, I wouldn't be alive today if it weren't for modern scientific healthcare so I rather view the alties as the parasites not modern medicine.

Keep up the good fight.