CHRONIC TONIC posts on Thursdays at 9 p.m. EST. It is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
Tonight's diary by: MsGrin
My mother said, 'Really?!' - and she meant it - when I told her initially that they could put a zipper in since I would almost certainly have heart surgery repeatedly. Then she gets the joke. And realizes that at 25 and 3000 miles from my family that perhaps the idea of major surgery is kinda terrifying for me. To reassure me, she sends white lilies which remind me that I'm actually faced with my first, acute question of my mortality (why did my mother send funeral flowers to cheer me up?). Our relationship has always been like that. She wants to know if I liked the flowers.
I survive the first surgery, although it was unnecessarily devastating since a pharmacist miswrote my prescription for digoxin when I left the hospital, and in accordance with the label, I take a month's worth of drugs in the first week. Food and water go into me only long enough to squirt out one end or the other, a suboptimal accident for a time when my body has been sawed open and needs to get back to normal, pretending nothing has happened. It also causes me to hallucinate for about eight months. Oh, and they kinda rearranged my already imperfect parts when they wired my ribcage back together. I felt like Frankenstein, and the hallucinations (and nightmares) had me seeing wispy ghosts coming out of my scabbed-over incision.
The next three surgeries had far fewer focus for me on my incision. Actually, the fourth surgery improved it significantly. That surgeon was a woman, and I felt like she took special care to return me closer to the state I'd been in before all the plumbing work. But the third and fourth surgeries have serious complications, and odds were on my non-survival both times. I remember reading, 'rhythms inconsistent with life' as I later tried to understand what transpired as I lost consciousness before the fourth surgery.
I've just realized that last month marked marked the 20th anniversary of my first heart surgery. Wow. At the time, I had hoped that they would be able to repair my valve when they first went in (and by coincidence, I just saw a report on a hospital which apparently now really excels in repair jobs), but for that time, my situation was too far along to repair. So the second choice I had given them prior to the procedure was to have a pig valve, which I got. The pig valve had a benefit that it meant I would only need minor bloodthinning, which was great. The downside was that it would not last as long as 'mechanical' prosthetic valves. I had been told to expect 7-15 years out of that valve, and I had hoped it would keep me off of bloodthinners long enough to be able to have children. In my case, it lasted 3.5 years, and required replacement nearly immediately after my wedding. Apparently, people under 30 often get calcium deposits on the valve - I did, and mine ripped as a result.
I've written at other times about the more spectacular events with the other surgeries, two in one day when the pig valve was switched out. Apparently, I was on and off the heart lung-machine a half dozen times that day which added a massive amount of fluid into my body and made clotting a significant problem (I weighed 26 pounds more after surgery than I did before, so a LOT of fluid since there was no eating between the pre and post weigh-ins). I had some relatively minor episodes with hemorrhaging that first year, one of which required surgical intervention. Fun, fun, fun. The anesthesiologist that day told me I was whiter than the sheets I was on.
And then the last surgery happened when my insurance company refused to fill my doctor's order for bloodthinners and I clotted off the valve. When the 'old' valve was removed, there was a centimeter thick clot on either side of it which had prevented bloodflow and created a very uncomfortable situation for me in the aftermath of the miscarriage.
That was 15 years ago May, thankfully. Four surgeries in five years and since then I've had a good, long break... uh, for the most part. I mentioned the bloodthinners, right? The mechanical valves require warfarin, the heavy-duty stuff which makes a person into a chemically-induced quasi-hemopheliac.
And then there was this 'other' bleeding event where I lost half my blood volume and such. Compartment syndrome, respiratory arrest, trauma surgery.
So the bleeding and clotting thang can be kinda critical to me since getting this artificial valve. I have tests done all the time to see how thick/thin my blood is. Need to check it a lot when starting new medications or supplements. Not everything impacts (or doesn't impact) as the drug manuals state. The meds for Lyme have run me ragged trying to get the blood not too thin and not too thick.
Two years ago, home testing/monitoring became a Medicare-allowable expense. I learned about it last year. I'd tried it a decade ago, and it was really complicated back then. They've improved it so that it's easy now. The machines and tests look very much like the home glucose monitors.
I got a machine last fall. Cool. Medicare pays for one test per week. Saves a lot of headache for me to just be able to test if I feel unsure or see signs which are concerning. I don't have to drive. I get answers immediately and can change dosage quickly, if necessary. A company supplies me with the machine and I email them my results, they send it to my doctor. If it's way out of whack, they'll have a doctor phone me (that happened once over the holidays when I was stupid enough to test on a weekend).
But my current Medicare Advantage company is very confused about this whole bidness. The company which loans me the machine and monitors my results apparently had a meltdown in billing, and in the aftermath of absorbing another company, no one billed my new insurance for six months. Oooops. Pissed me off since I had been badgering them about getting the new insurance info inputted at the turn of the year (last year's insurance company left the region, had to get a new group) - they claimed they had and that there were no reasons I could not resume testing.
My insurance is an HMO. They claim that the company providing this service (pretty much the only one in the country) is not in network, therefore, no dice. They're first issue seemed to be that they misunderstand what the service is... they sent me to 'other' providers who were going to send home health aides to where I live to do the test. NO. NO. NO. NO. That's not it, guys. I assure you this is waaaaaay cheaper than that. And don't fight me on this because I WILL win and I know how to fight MA companies after another gave me some good experience, so you can save us both some grief by just frickin' getting with the program. Medicare covers it, so I can haz it. End of story.
My test today shows it way out of whack again since I started a new med. Big surprise. I phone the customer service of my insurance to let them know THIS is why it's important (and easier) for me to check at home. The customer service guy really doesn't understand the information, but he wrote down something. The jerk off who is apparently the person who rejected my getting this service is apparently the medical director of the company - it's his notes that people read when they explain why this isn't worked out yet.
Finally, someone in the billing department at the provider seems to know what's going on. They have someone else on service with my insurance, and the insurance pays it no problem for her. So maybe, maybe, maybe it can get worked out in a week or so.
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How is everyone?