I’m Back…Again

In May, when I last posted, I thought we were finished with the ongoing medical disaster. My son had healed, moved back to his place, and started looking for a job.

As in any story, there are a lot of variables at play. This eldest child of mine is different, and it became increasingly clear that perhaps he wasn’t just “a late bloomer” and was going to have ongoing struggles. He and his long term partner broke up and she moved away, and I slowly realized that she had been covering a lot of the adulting in the relationship. There was inter-family drama over whether or not helping him was helping or enabling. My mother criticized me for being too hard on him, my daughter felt I wasn’t hard enough, I felt like nothing I could do was right.

I had him evaluated by a psychologist who found that in addition to having Tourette’s Syndrome, he’s extremely depressed, his ADD is completely unmanaged (and in many ways mimicking Autism) and his anxiety is also very high. So I had to look at this human I bought into the world and recognize that he’s not late blooming, he’s not blooming at all. He may never, but things were going from bad to worse. He nearly lost his place to live, then finally found a job at a crappy call center. It was good in that they pay higher than minimum wage, and he can walk to it (he doesn’t, and likely won’t ever, drive). For a second, things seemed to stabilize.

It was clear he didn’t like the job. Who would? Then, on September 10th, the day after his 29th birthday, he went to the ER with chest pain and shortness of breath. The hospitalist casually mentioned to us that his EKG showed “some enlargement, but then again, I don’t know what’s normal for you.”

Yes, I did think, “I am not aware of an enlarged heart being normal for anyone.”

His cardiologist ordered an Echo (ECG) and told him, also very casually, “Your Ejection Fraction is around 25-35%, which is kind of low, technically heart failure, but don’t worry, you will be fine.” I was not there for that conversation. I was there the next day when they did a Trans-Esophageal Echo (TEE) to get a closer look at the valves that had been replaced. The cardiologist again said that he was in heart failure (but not a big deal!) and that he saw a dark area around one of the valves that concerned him. He said the disk of the scans would be sent to Albuquerque where the surgeon is right away for comparison.

If you guessed “they didn’t send them” award yourself a shot of whatever you like most.

Finally, three weeks after he had been admitted, I requested the records and overnighted them myself to the surgeon’s office. Meanwhile, the Eldest was enrolled in Cardiac Rehab and we found out that the very hospital at which he had been admitted has a Heart Failure program with a DEDICATED NURSE, to whom we were not refereed during his stay because, “Some of the doctors think we are poaching their patients.” If you just choked on your shot and said, “WTF?” Have another shot.

Meanwhile the surgeon’s office called to say that they got the records, but the surgeon was out for two weeks. If you aren’t going to drive anywhere anytime soon, and you just said, “But can’t someone else in a huge practice read the tests?” Have another shot. Then have a glass of water, we aren’t done yet.

So there we were, I was suddenly back in a major care-taking role and the system was once again actively working against us. It wasn’t until I got the records myself that I learned that one’s ejection fraction isn’t expressed as a range, it’s a number. And, no surprise I guess, his number is very low (25%) but the cardiologist didn’t want to tell us that. It’s so low that there is a 74% mortality rate within 3 years. Yeah, have another drink.

The surgeon was supposed to be back on the 14th, and I politely waited until the 17th to call the office. I mentioned to the nurse I was transferred to that the Eldest’s mortality stats were still on their plate, so they might want to be bothered about this. Then the surgeon called. I had been told earlier in a call that “you need a cardiologist for the heart failure, that’s not the surgeon’s issue” so I immediately told him I knew he wasn’t the guy for the heart failure but there was the concern about the valve. He said, “Yeah, I think there’s a little separation at the aortic valve and it’s leaking a little bit, but that’s a moot point now. Your issue is the heart failure. We had no anticipation that this would happen, he left with a seemingly stable, healthy heart. You’re going to need to get him on a transplant list as soon as possible, that’s too big a decline in a short time to think that rehab will change it. There’s no way we can go in and deal with the valve, his heart’s too weak.”

Short version: he changed the course of our lives and scared the shit out of us–but at least someone leveled with us. At the time, we had an appointment with the cardiologist the next Monday, and it being Thursday, that seemed okay. We would just ask the cardiologist on Monday to make the referral. I dropped this incredibly heavy news on the Eldest on the way to Cardiac Rehab and then talked a bit with the HF nurse about what to expect.

Monday morning the cardiologist’s office called and said, “The cardiologist is out of town for two weeks, sorry.” The Eldest asked for another appointment and they said that November 25th was the soonest. Nay, nay, said I, holder of Medical Power of Attorney, that will not do. I called. I asked who was on call for the cardiologist? No one, a PA told me. Really? I asked, what about the other doctor in the practice? Oh, well, yes, sort of, she said. GREAT, I said, we need to see him. She put me on hold, them came back and said, “Dr. said no, he’s not comfortable seeing the other guy’s patient.” Okay. Okay. Okay that makes no sense, but okay. She offered to call the cardiologist in El Salvador (“He will yell at me, but I guess I will call” to see what he might suggest).

You and I know I don’t give a flying fuck if she gets yelled at. I mean, whatever IQ test you have to fail to work in this cardiologist’s office means you probably are stupid and people yell at you a lot, you’re used to it. She later called back triumphantly to say she got a referral to the surgeon for us. You know, the one in Albuquerque, who is ALREADY OUR DOCTOR and said that the cardiologist needed to refer to transplant. So, once again in her bewildering experience of life and thinking, someone was unhappy with her instead of delighted.

Meanwhile I contacted the surgeon’s office and said, hey, hey guys, can we see a cardiologist through your practice? We can drive just under 500 miles round trip if that will get us where we need to go. They called back and said, “Yes! Yes of course! But, however, so, they don’t take your insurance, so you would have to self pay.” Since I’m not in the 1% and the expense of this situation is going to destroy three generations of finances already, I said I didn’t think that would work. Finally, I asked if the surgeon would refer us? Yes, he would, but records……and I admit, I gave up. I got overwhelmed and tired.

In less than two months time I’ve learned that my child, my first born, is really disabled and will never be what I’d hoped for him. While my therapist has suggested I used a word other than “weird” (we are using “different”) I have to come to terms with a kid that I thought would get the hang of social stuff. I thought he’d catch on to adulting. He won’t. And then, as I was barely even figuring that out, we got Surprise! Heart Failure! And I was back to shuffling him to appointments three or more times a week and making calls and researching stuff. And before I could possibly fully process that, too, we got hit with Must Have Heart Transplant. Oh, and no prescribing psychologist will take him on because his case is complicated, but one did say, “Well, God bless you for what you are doing for him.” A statement I imagined shoving straight up her ass for all the good it did me. His regular therapist has ghosted us. I finally got an appointment with someone new for this coming Monday, and it’s not a minute too soon since he’s texting me saying, “I’m afraid I’m going to die. I don’t know how to feel about this. I feel like the system doesn’t care about me, like they’re going to let me die.”

That’s enough for today, though, you’ve probably needed six drinks to get through it and you should absolutely go lay down. It’s too much, it really is. I promise I’ll come back around to tell you more.

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