Well, it is not a bad morning anyway; I am alive and feeling well, well enough. Feel the same that I have felt for the last several weeks since I was last admitted to the U. I guess that is actually the problem:
My echo yesterday morning showed no improvement in the LV function since my last echo 2 weeks ago (and it should be normal by now), and, at my doc's appt. at 1pm, my heart rate was very high. SO the Docs were concerned enough to have me admitted, though they really do not know what is going on.
This morning, I am supposed to have a right heart cath to test the pressures in the heart as well as another pericardiocentesis (removal of the fluid around my heart) by catheter in my chest below sternum (had that last July).
Docs are doing these two things to help them assess whether to do another procedure called plasmapheresis (sp?) which is essentially dialysis of the plasma to clean/remove any antibodies that may be in the plasma. Four weeks ago, I tested negative for antibodies, but because my heart function is still not normal, they are not sure what is going on. Having antibodies present could be a cause of my problems (the antibodies essentially conflict with antibodies from the donor's heart, a sort of rejection), and apparently there can be antibodies present but not detectable on the blood test. Docs are thinking they need to be a bit more unorthodox or aggressive because of the continuing issues. The removal of the fluid is intended to make the plasmapheresis more safe. So, I continue to be an "interesting case" or, as I joke, a freak of nature.
On the personal front, I am totally bummed for myself, but mostly for my boys (big and little). Mason has been having a tough time dealing with my health stuff ever since my last hospitalization 4 weeks ago in Sept. But we are dealing, we are thankful for help from our Utah family, and we'll all be okay.
In case you want to visit or call, I am in room 4106 and the room ph. is 801.585.8355. And I have my cell too. I expect to be here about a week, give or take. FYI, I like to keep my door shut to keep out noise, so don't hesitate to knock!
Thanks for your continued prayers, thoughts, energy, love, and support,
Em
Thanks for your continued prayers, thoughts, energy, love, and support,
Em
2 comments:
Hi Emily,
I am so sorry you're going through this mysterious ordeal, and that it's getting to be so hard on your fam. We're thinking of you here in Brooklyn for sure.
I don't know if you like or don't like reading other people's illness narratives, but if you like them, I can't recommend more highly "The Two Kinds of Decay", by Sarah Manguso. She was my college roommate, is a beautiful writer, and had a mysterious autoimmune disease that led to many, many rounds of plasmaphoresis (I think dozens--she had to have a central line installed because all her veins collapsed from the transfusions). She eventually went into remission and her book is a great narrative of coping with illness, especially one with mysterious ups and downs.
Good luck--your spirits sound very high from your blog posts, I hope they are.
lots of love,
Charlotte (and Nick & Linus)
Emily, Hey it's Tanya from class!! Just letting you know that you are in my thoughts and prayers!! If you get bored and you txt you can txt me anytime.. 435 890-0584..
Get beter soon!!
Loves
T
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