Thanks for all the lovely birthday wishes!
Just wanted to post a quick update from my doctor's appointment yesterday. It went really well! I met with a Rheumatology Fellow for about 20 minutes reviewing my history and answering a zillion questions. She went out to brief one of the big guys and they both came back in to talk with me some more. The good news is that they've basically ruled out Lupus (which was a pretty slim possibility anyway) and said they they it is pretty unlikely I have any of their "bad diseases".
But, they ordered about a million blood tests just to be sure.
So, it is looking more and more like I've just got ITP -- the first word of which is idiopathic meaning we don't know why. And, ITP is totally manageable and something I can live with for a very, very long time.
Even after all this good news they gave me even better news -- they agree I should be coming off the prednisone (steroids). But, they weren't willing/able to actually do it. I'm back to see the Hematologist on Thursday (tomorrow) and am planning to insist that I start coming off them. My understanding is that I can come down about 20mg. a week so here's hoping I'll be steroid-free by mid-July! (Just in time to be puff-free for that wedding!!)
Showing posts with label ITP. Show all posts
Showing posts with label ITP. Show all posts
Wednesday, June 4, 2008
Wednesday, May 14, 2008
I'm here
Here. I'm home. I'm back on-line. But, not myself.
Two weekends ago we went away for our anniversary. It was such a great time and I was looking forward to telling you all about it...the rest and relaxation, the spa, the meals, the wine, the lilies of the valley growing outside our room.
But that Saturday night I wasn't feeling very well. It only got worse. Such that Monday morning I made an appointment with my primary care doctor. Before my appointment my nose bled for 3 hours without stopping. That on top of the strange rash all over my torso and my fatigue and my doctor ordered a blood workup. Call Tuesday around 10am for the results, he told me.
Instead the phone rang at 6:30am (which we didn't hear) when the first person arrived in the office and saw the test results. My doctor called as soon as he go in at 8am and very seriously told me that I had to go to the nearest emergency room immediately.
Normal platelets are 150,000-300,000. Mine were less than 4,000.
There is serious concern for spontaneous bleeding. This is very dangerous.
Okay.
We got Lucas dressed; took him to daycare and drove to an ER (note to self and others, when you live in an area with many hospitals, might be worth giving some consideration in advance to which one you'd choose if you had a choice).
The rest was both the longest and shortest minutes and hours and days of my life.
Officially admitted; diagnosis: ITP; residents and interns and medical students troop in and out to see my rare rash; CAT scans because of a headache and an enlarged lymph node; ER doc tells me that I might start hearing the word cancer because there are many abnormal lymph nodes; I'm a mystery "residents love mysteries"; move into a real room (after 12+ hours in the ER); spend first night in the hospital; spend next day feeling pretty good; spend next night; platelets are going up; surgery--lymph node removed and bone marrow taken; spend another night; platelets up into normal range; initial pathology shows no malignancy; you can go home.
NO MALIGNANCY!
The initial look at my lymph node and bone marrow showed nothing abnormal. I can't quite wrap my head around it. We'll know for sure tomorrow when I go in for my follow-up and the full pathology report.
In the meantime, I'm exhausted just writing this so have to sign-off.
Just wanted to let you know, dear internets, where I've been. I'm been thinking of you, I promise. Do me a favor and think of me tonight and tomorrow. I really need that final pathology report to be clean.
Two weekends ago we went away for our anniversary. It was such a great time and I was looking forward to telling you all about it...the rest and relaxation, the spa, the meals, the wine, the lilies of the valley growing outside our room.
But that Saturday night I wasn't feeling very well. It only got worse. Such that Monday morning I made an appointment with my primary care doctor. Before my appointment my nose bled for 3 hours without stopping. That on top of the strange rash all over my torso and my fatigue and my doctor ordered a blood workup. Call Tuesday around 10am for the results, he told me.
Instead the phone rang at 6:30am (which we didn't hear) when the first person arrived in the office and saw the test results. My doctor called as soon as he go in at 8am and very seriously told me that I had to go to the nearest emergency room immediately.
Normal platelets are 150,000-300,000. Mine were less than 4,000.
There is serious concern for spontaneous bleeding. This is very dangerous.
Okay.
We got Lucas dressed; took him to daycare and drove to an ER (note to self and others, when you live in an area with many hospitals, might be worth giving some consideration in advance to which one you'd choose if you had a choice).
The rest was both the longest and shortest minutes and hours and days of my life.
Officially admitted; diagnosis: ITP; residents and interns and medical students troop in and out to see my rare rash; CAT scans because of a headache and an enlarged lymph node; ER doc tells me that I might start hearing the word cancer because there are many abnormal lymph nodes; I'm a mystery "residents love mysteries"; move into a real room (after 12+ hours in the ER); spend first night in the hospital; spend next day feeling pretty good; spend next night; platelets are going up; surgery--lymph node removed and bone marrow taken; spend another night; platelets up into normal range; initial pathology shows no malignancy; you can go home.
NO MALIGNANCY!
The initial look at my lymph node and bone marrow showed nothing abnormal. I can't quite wrap my head around it. We'll know for sure tomorrow when I go in for my follow-up and the full pathology report.
In the meantime, I'm exhausted just writing this so have to sign-off.
Just wanted to let you know, dear internets, where I've been. I'm been thinking of you, I promise. Do me a favor and think of me tonight and tomorrow. I really need that final pathology report to be clean.
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