This has been a tough week for me, so I haven’t posted.
June 10th is the anniversary of my heart surgery, my “rebirth day,” as we call it. This was my 12th.
Twelve years ago this afternoon, I had been moved from ICU to a “private” room. We’d requested a truly private room in advance.
Twelve years ago tonight, I had fluid on my heart and lungs.
Twelve years ago tonight, my surgeons were worried.
Twelve years ago tonight, my surgeons were unable to deal with my directly, other than two visits from a resident, because they were trying to save the life of a baby boy.
Twelve years ago tonight, my parents were worried.
Twelve years ago tonight, I was told to take several walks up and down the halls of the hospital, to get the fluid out of my lungs, or I might have to go back to ICU, if not the OR.
Twelve years ago tonight, I was screamed at by some obnoxious nurse–while one of my doctors was standing right there in the room–for getting up to walk.
Twelve years ago tonight, I said a rosary in a dark hospital room.
Dad said, “Yes, this is a time to pray.”
I said, crying, “I’m not praying for me. I’m praying for that little baby”
Twelve years ago tonight, a little baby boy died.
I’ve never heard of a Marfan making it more than 20 years without a second surgery (or death).
So, here I am at 12 years. In a lot of ways, thanks to Cozaar and dietary supplements, finding out I have Celiac Disease as well as Marfan, and having such a loving and supportive wife and family, I’m healthier and happier than ever. But it’s still hard. I’ve never quite gotten my INR straightened out–as soon as I do, I overdose and bleed everywhere. Last week, I had the happy news that it was a solid 2.1, but, as always happens when I get that reading, I had horrible kidney pain at the beginning of this week.
Just to do my “health maintenance,” I’ve had to do stuff in my 20s that most people don’t have to until at least their 40s, and, then, they often retire to do that stuff.
Plus, it’s been averaging in the 90s-100s already, and the heat is really giving me fits.
When I saw Dr. Stravrou (my cardiologist since 1989, save the period from around 2002-2006), he seemed a bit concerned about what I call my “pin strokes.” He’s always particularly concerned about my head, because he lost a post-operative Marfan to cerebral hemorrhage shortly before I started seeing him. He asked me if I’d been tested recently for brain aneurysms. Then he hesitated, given the question of whether I can have an MRI with my valve, and the fact that MRIs are only like 60% accurate in detecting brain aneurysms, anyway.
I said about the spells I get, where I get an intense, sharp pain in the right side of my neck or head, usually in conjunction with a migraine. The right side of my face goes numb. I have difficulty speaking. When it’s bad, the whole right side of my body goes numb. It lasts about a half hour–an hour, at worst. Aspirin always knocks it out, esp. if I take Aspirin early in the process. They come more when I miss a Coumadin or my INR is low. They also happen after dinner, particularly if I’ve had a fairly salty or fatty meal. All consistent with pin strokes or brain aneurysms. He agreed that it’s something to be concerned about, and all the more reason to be extra-viligant about my INR. However, neither one can really be accurately tested for.
Meanwhile, another help in my health has been a supplement I’ve been taking called Horse Chestnut. It’s supposed to help peripheral neuropathy, and, other than my pin strokes, taking it has taken away my peripheral neuropathy. Dr. Stavrou got out his PDR for Herbal Remedies, and pulled up the article. It didn’t show any reason it’s harmful, and, in fact, it’s a source of the compound coumarin, which may help explain my perfect 2.1 reading.
So, Allie had her follow-up to her eye surgery in Charleston on Monday. We scheduled her follow-up for Sept. 12, and rescheduled my appointment for the same day (hopefully, I’ll be able to get my lenses removed, too; they don’t interfere with my vision unless I look straight down or move suddenly, but they do effect eye pressure, threaten my retina, and make it difficult to read books).
We spent Monday & Tuesday vacationing in Charleston, partly to celebrate my anniversary. On Wednesday, I had to go back to Sumter for my echo. Afterwards, I visited some dear friends, the Schenkels. The Marfan I mentioned, who’d died of the cerebral hemorrage 20 years ago, was the brother of their son-in-law. They came to Augusta with us for my surgery. Mrs. Schenkel is recovering from a second bout with lung cancer last year, and then was bedridden with pneumonia for several months. I haven’t seen them since last July. Since I was in town by myself, I was able to visit for a while, which was nice and fitting, given the time of year. All through the various driving, I was listening to my favorite Barry Manilow albums — Here Comes the Night, If I Should Love Again, 1989’s Barry Manilow (later retitled Please Don’t Be Scared). Another factor in the Schenkel friendship is that they’re Manifans, too. On Nov. 12, 1989, Mrs. Schenkel’s birthday, my parents, the Schenkels and I went to see the Hurrican Hugo Benefit performance of the Live on Broadway tour.
Another elderly friend in Sumter, Sophie Ross, is connected to my surgery because she had an aortic root replacement a month before I did, and the two of us helped each other through the rehab, walking together and sharing. She’s been in a nursing home since a massive stroke a couple years ago. While she recognizes that she knows people, she doesn’t remember anything past her 40s. Like the Schenkels, it’s difficult to visit her with the children. So I was hoping that, being alone and being my anniversary, I could pay her a visit.
Unfortunately, a storm hit, keeping me at the Schenkels’ for an extra hour until I had to leave to come home to Columbia. So, I missed the chance to visit Sophie.
So, it’s been a very symbolic, retrospective and introspective week. All in all, I’ve been pretty depressed this week.