It’s been a while since I’ve done one of these, so to recap:
I’m now taking maximum doses of a bunch of heart medications–Entresto, Corlanor, the trusty carvedilol (Coreg), and lasix. I’m also taking pravastatin, levothyroxine, baby aspirin, and two different kinda of insulin.
Better living through chemistry!
Dr. Mackie is a genius, as are the transplant coordinators (who are super highly trained nurses) who work with him. The goal now is to keep my heart working as well as it can, and keep me off the transplant list. My ejection fraction is up to 25-30% on these meds, which is still lousy, but a helluva lot better than the 10% it was. I’m feeling pretty good. I’m not going to be running any marathons anytime soon, but that was never in the program anyhow.
My ICD is healed in after some issues, and is working fine. I owe this to Dr. Fradley’s amazing skill and expertise; he’s a genius, too. Because my healing was kinda complicated (a function of having Type 1 diabetes and being skinny), my scar isn’t Dr. Fradley’s prettiest work, but I don’t mind. I tend to live by the Poi Dog Pondering lyrics:
You should wear with pride the scars on your skin
They’re a map of the adventures and the places you’ve been
I’m going to get slightly political here for a paragraph. Feel free to skip it.
Having a serious medical condition–never mind four of them all at once–is an expensive proposition in the YouEssUfAy. Without health insurance, the aforementioned nine drugs I’m on would cost more than $6,000 per month. Without being required to cover people with preexisting conditions, I would not be able to get health insurance (which, for the record, is really expensive, but less than the cost of my healthcare without it). If you think scrapping the preexisting condition mandate for even a brief period is a good idea, I’ll tell you that my life–literally-depends on it. Healthcare is not some kind of theoretical discussion topic for me. It’s terrifyingly real.
Ok, back to my update…
Last year, I had a series of shots in my eyes because one of the nifty side effects of everything I have going on is that the diabetic retinopathy that’s been nonproliferative for decades has gotten more aggressive. The shots worked for a while, but on Christmas Eve, as I was sitting watching TV, a had a severe bleed in the vitreous. In a nutshell, that’s the gel toward the back of the eye.
As a result of this, I pretty much couldn’t see out of my right eye. So Dr. Mines, my terrific retina specialist, shot lasers into my eye (during which I very helpfully said, “Pew! Pew! Pew!), and we waited to see if it would clear up on its own. It got better, and I was optimistic.
Today when I saw Dr. Mines, though, the news was not good. There is blood caught in the gel in the vitreous, and I’m maxed out on the lasers. So now I have to have a vitrectomy, which is a surgical procedure to remove the vitreous humor gel.
More surgery. Fuck.
The good news is that it’s a relatively safe procedure that has a 90% success rate. Dr. Mines knows his onions and then some. And the vitreous humor gel is only necessary when the eyes are first growing; after that, it’s kinda like the appendix. So I’ll be fine without it.
Oh, and I get to wear a patch for three days. So side benefit: Pirate-ness!
I’m going to wallow in some self-pity this evening, and tomorrow morning I’ll get up and be incredibly grateful that I have work that I love to focus on. I’m grateful that I have the energy and passion to work on doing something positive in the world, because otherwise I would probably drown in sorrow. I’m also grateful that I have doctors and treatments that are making me well able to keep going.
The surgery is gawd-awful early in the morning next Tuesday, March 21. Your good thoughts, prayers, energy, and general mojo is always appreciated more than I can ever adequately express.
I’ll report back next week. Until then, be good to yourselves, ok? Be kind. Laugh and love and all that jazz because life is short and precious.