The hematologist has been monitoring our daughter's platelet counts. Last Tuesday, it had dropped from 44K to 29K. So, he saw her last Friday afternoon where her count was 39K. Higher than Tuesday and (probably) due to her Remicade treatment on Thursday. But, of course, way under what it should be. They had a hard time getting her to stop bleeding when they removed the Remicade IV so that was not fun for her. He told her that he initially had three potential plans to deal with her if the IV-Ig did not work. He has had to rule out one of those (Rituxan) since her platelet count tumbled so far and so fast a week after the IV-Ig. Those options are a weekly injection of N-plate or removing her spleen. N-plate is a drug that encourages her bone marrow to produce platelets. Side effects are negligible. She'd have to have weekly blood draws and if her count was under 50K, she gets the injection. If over, then wait a week, do a blood draw, and go from there. Goal would be to keep her at or above 50K. He said some patients do this for years and for some, it loses it's effectiveness. As for a splenectomy - I guess it's generally a laproscopic surgery these days. They would give her a massive IV-Ig treatment the day before the surgery to get her platelet count up to a normal range, then do the deed. If it's not "open surgery"; i.e., they get the laproscope in and all looks well, then hospital stay would be about two, maybe three, days. If it is open surgery, then 5-7 days. And, naturally, she would have some restrictions on heavy lifting, etc., etc. The usual surgical post-op stuff. Down side to removing her spleen is that she would need a yearly flu shot (which she gets now for the ulcerative colitis), pneumonia shot, and she would be more susceptible to meningitis. And, she would have to be very careful if she suspected she might be getting sick since she would have lowered resistance to all the "crud" that is floating around.
So, her call now on what she wants to do. For the first time ever, after leaving a clinic, she broke down crying and "had a moment". She told me she is bone tired of all the doctor visits, being stuck with needles and IV's, worrying about herself, missing work, being a burden on everyone, etc. She has scheduled an N-plate for this week but is seriously considering the splenectomy.
I'm not sure I know which decision I hope she makes. I guess splenectomy would be the court of last resort unless she could get the N-plate to work long term. I can appreciate (well, actually, no, I can't) not wanting to be a human pin cushion with non-stop visits to the hematologist for blood draws and injections. But major surgery....Eeek.
She has a really big decision to make. Wish this was happening to me instead of her....
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