A lot of things did not go as I expected.
When I made my last post, I had assumed that LVAD surgery was eminent. I went into the hospital on Wednesday and slowly learned what the time line was actually supposed to look like. Tests through Friday, then scheduling the surgery the following week, leaving me in the hospital for a week or so without even know when surgery was going to take place. But that's not how it panned out. I was released on Friday with the plan to meet again with the team the following Thursday (today). The reason I haven't updated the blog until today was because I really had no idea what was going on. Now I have some idea.
First of all, there's this. My doctors at Providence, given the fact that I had been deemed unsuitable for transplant at this time by a transplant team on the verge of collapse, and given their own judgment, have suggested a second opinion/evaluation with another transplant team may be in order. So the new plan has me being admitted to the hospital on Tuesday of next week, undergoing a series of tests (one long test, really) to check on the pulmonary hypertension that ruined my eligibility in the first place. Then, toward the end of next week, I'm either going to be referred to another transplant program, most likely in Seattle, or have the LVAD surgery the following week.
I can't begin to express how frustrating this is. Going straight to transplant has always been the priority, and finding out that I might still have a shot at that is very exciting, but it would mean scraping together the funds to spend up to a year in Seattle. There was brief mention of looking for a transplant program in a location where I had friends/family that I could stay with, but even then I'd lose all of the support I do have here. And I'd be away from Mel forever. I have so much unpacking of this mess to do still. At least I have the weekend to figure out how to save my life.
Weight: 212.0, Symptoms: Fatigue, dizziness, anxiety, depression, shortness of breath.
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