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Well, my doctors still don’t know what is wrong with me, and have ruled out vasculitis for now- which is both a good thing and very frustrating.
I had another bone marrow biopsy yesterday (boo!) and the preliminary results show that my marrow is the same as the last time the test was done in the fall (which is good news).
I’m going to do a trial run on a immunosuppressant and see if that helps at all. It is a bit of a shot in the dark- since we don’t know what is wrong with me- but it could help.
xo
B
Well, last week I got some frustrating news, which was that my hemoglobin at slipped to 7.2. Dr. J. quickly got me set up for a blood transfusion and two units later I was feeling much better. Thanks J-mo and Mom for keeping me company!
My blood work is also now showing all sorts of antibodies, which is actually good news (though it makes it hell for the blood bank to find a match for me) because it gives the doctors more hints as to what is really going on.
The newest theory is that I have vasculitis and we are planning a nerve biopsy, down by my ankle, in the next week or so to confirm. Vasculitis is treatable, but the treatment is very harsh, so we want to make sure before we do anything.
I’ll keep you all updated. While the drop in hemoglobin is frustrating, since I’d gone so long without a transfusion, I’m hopeful that the new symptoms will lead (finally!) to a conclusion to my days as Dr. J’s medical mystery.
I know- I promised I would update y’all on the site and I have been slacking. But the truth is there isn’t much to tell. Still seeing lots of doctors, still feeling relatively fine, still without any real answers.
Doctor says I should settle in for the long run and I have this feeling deep-down that this is auto-immune and not MDS, but only time will tell.
So for now- no news is good news.
xo
b
Well my hemoglobin is still hovering in the 9’s which is good news so long after my transfusion.
In the next two weeks I have an MRI, a Catscan and a bone marrow biopsy scheduled. So, fingers crossed, maybe some more news soon.
xo,
b
The Spinal Tap came back totally normal. So we continue testing…
Hi all-
Well I survived the spinal tap (Ari and I even watched Spinal Tap this weekend!). I’m sore today- and feel like there is a weird amount of pressure around the base of my spine, but the actual test was much less painful than a bone marrow biopsy. It was also kinda cool, my spinal fluid was totally clear (the way it was supposed to be) but I was still amazed that it looked like water. I also had an MRI yesterday, which was fine and I have a bunch more MRIs and Cat scans scheduled. So hopefully some more concrete information will be forthcoming shortly.
Happy turkey day to all!
xo
b
Hi all-
Sorry for slacking on the updates. Here is what is going on. Dr. J still is not 100% convinced this is MDS and my counts remain stable. So on Monday I am having a series of MRIs done and a spinal tap, lucky me. I am, of course, nervous to have someone stick a needle in my spine, although I am told it hurts less than the bone marrow biopsy. Speaking of the biopsy, I have one scheduled for the beginning of December and likely a cat scan at that time too (if the spinal tap does not show anything conclusive).
So, while I am feeling almost totally normal some uncomfortable tests are heading my way.
On the bright side, I had the most amazing time at the wedding I attended last weekend and I am counting the days until Thanksgiving when I get to see a lot of my family.
xo,
b
This is really hard for me to write but Eric Trowbridge, the boy who’s story I’d been so closely watching, passed away Friday evening. I continue to send my love to his family, who must certainly need it in this trying time.
Ironically, I who can usually wax poetical about anything and everything, am not sure what else to say.
Hi all-
I had my monthly visit with Dr. J yesterday. My counts have been the same for about a month now and that means I am not getting better but I am also not getting worse. Dr. J is still not convinced I have MDS though because I have some lab results and symptoms that are not typical for MDS. Before they treat me for MDS, which involves compromising my immune system, they have to be 100% sure I do not have an autoimmune disease. Since I am relatively stable and can be supported by blood transfusions (speaking of I am having another on Friday and I am super excited) it is worth taking the time and making sure we have ruled everything else out.
So that’s the news for now. Check in with me Saturday when I am full of new blood and feeling great 
xo,
B
Hi all-
I can see from the stats that you are still visiting- still checking up on me. Muchly appreciated.
Unfortunately- or fortunetly (I’m not entirely sure), I have nothing to report. I’m still in a holding pattern- still having my counts checked reguarly and now they have started to test me for rare diseases that may be causing the underlying anemia. Nothing has shown up yet- but since there are about a trillion rare diseases it could take awhile.
Anyways, I just wanted to say thank you for looking in. Alls well for now- besides being a very tired and frustrated Becca- and I’m quite happy not to be spending the month of October in a hospital.
xo
b
