artfulblasphemy

It’s hilarious (in the sobbing in a corner kind of way) that back in November (NOVEMBER!) I thought something was going to happen quickly. I thought that the Eldest having heart failure and aortic insufficiency was going to be addressed in an expedient fashion. Instead, nothing happened until the very end of 2019. True story.

There is so much medical bullshittery that happens in this horrid capitalist system, and I am literally too tired to fully recount it here (another reason to try to do this more regularly) at the moment. We were finally seen by UC Denver Anschutz Campus in Aurora, CO, on 12/30/2019. For the first time in this adventure, we encountered really knowledgeable and empathetic care. It was enough to nearly collapse my outer walls and reduce me to a puddle, honestly.

The main takeaways were as follows: Normally in such cases, there are stop-gap options to try to prolong a patient’s life as long as possible while they wait for transplant. There are two things: pharmaceuticals and what’s called a LVAD, which I’ll explain in a moment. Medication is always the frontline measure, but we have a problem, in that The Eldest is experiencing two separate, unrelated processes that are damaging his heart. One is heart failure, where only 20-25% of the blood that needs to go out to be oxygenated is leaving the chamber, causing the ventricle to enlarge and work harder and harder while achieving less and less. Two is the separation at the artificial aortic valve, which means that oxygenated blood that needs to go out is instead regurgitating back into the chamber. Drugs that help Heart Failure exacerbate Aortic Regurgitation and vice versa.

So there’s little to be done there. The other thing they do is an LVAD (I am too lazy to look up the acronym, you do it) that is a wearable bypass machine that takes the strain off your heart. Unfortunately, they feel that the condition of The Eldest’s heart is too weak to tolerate the surgery to install an LVAD. That means that transplant may be our only option, and that once he starts to deteriorate, our timeline for saving his life will be very compressed. How did I just type that without falling apart? I’m getting very good at falling apart on the inside while remaining composed on the outside. Also I cry all the fucking, time, honestly, I can pretty much carry on while my face leaks all over.

The Eldest is not my only child, he has a 27 year old sister and an 18 year old brother on our side, and so life isn’t just about him. A week before Christmas Eve, the 18 year old learned that a close friend had committed suicide. So I’ve been torn between trying to support and help The Eldest, and the family of the kid who died, and my kid. The funeral felt like a dress rehearsal for losing my own kid, and it has interwoven itself into my general sense of deep sorrow and helplessness.

Anyway. The next step will be to go back to Denver for about a week, where they will put The Eldest through all manner of rigorous, invasive, intense testing, then confer, then tell us if they are going to accept his case for transplant and what priority they will assign him. We won’t have more than a week or two notice before we have to be up there, and it’s likely that The Teenager and my husband will be headed the opposite direction to Ouray, CO, for the Ice Climbing Festival they’ve been attending for four years now.

Everything is uncertain, terrifying, sad, immutable. It’s a tough place to reside for any long period of time, and yet it’s my new address for all intents and purposes.

This, then, will function for me to vomit all my internal garbage that I can’t say out loud without losing it, or wanting to stuff it back in my mouth because no one gets me. You’ve been warned. It won’t be pretty.

What can I do while we wait for a phone call? Mostly, worry. But then yesterday I thought, I could start really purging the guest bedroom (better and more accurately known as the Overflow Studio) so that once we are on the other side of this disaster, the Eldest will have a more welcoming place to stay while he is with us. Also, once he gets on a list, we will have to break his lease and his stuff is going to have to go somewhere.

That, naturally, led me to the Gameroom, as during the Endocarditis/double valve replacement, I had moved a bunch of stuff in bins from said Overflow Studio and under the pool table, where they have remained ever since–at the time, he still lived with his girlfriend so his household didn’t have to come here–now, he doesn’t, so it does and that’s a bigger order.

The bin full of boxes I might use to ship fiber art if sold online? To the recycling. Costume elements from a movie that never got made (the producer, for whom I was working, didn’t even tell me they shelved it, that’s how professional that outfit was)? Put in a pile for a junior costumer I know who might want them. Etc, etc. Clothes sorted into bags by size and advertised for $10 a bag? Three are sold, one is lingering. It goes to the thrift store on Tuesday.

The Youngest was conveniently home skipping school [yes, you’ll need info, I get it. So, A) our school district was hit with ransomeware so all computer related classes can’t, er, computer at the moment, so someone doesn’t see it as a big deal if he skips watching Hackers for the third time and B) he’s proudly managed to never attend an assembly and I’m kind of rooting for him in this department] so he got to take bins of textiles down from the closet, then put them back up, etc, lather, rinse, repeat until, whaddya know? He went back to school! I’ve cut about 5 bins worth of hoarding and emptied two dressers.

It looks like chaos but it isn’t. Mostly. It’s on the way to better things. Now I have to get the spouse and the Youngest to move furniture tomorrow. Then we can swap some furniture and other boring as fuck stuff that is useful only to fill time since there’s little chance the transplant team will call on a weekend. Otherwise I really have no choice but to give in to my brain eating anxiety and that won’t do anyone any good.

The Eldest has finally been referred to UC at Denver’s Heart Transplant Program. Now we wait for them to call and set up an appointment for evaluation. Ninety percent of all medical experience is comprised of waiting. It’s how they screen you out–can you afford (mentally and financially) the endless waiting? Can you go through your daily life tethered to your phone? Are there any circumstances under which you would *not* answer the phone? Prepare yourself now to set down your diva cup and accept the call–you can wash your phone and your hands later.

I’m not kidding.

Waiting also makes my mind race as I try to anticipate what will happen next, and plan for something that, being not a real thing yet, I can’t plan for. Thoughts I’ve had since yesterday while waiting for The Call:

1. I have no stylish winter clothes, I have hardly any unstylish winter clothes for that matter, we live in Southern NM. Am I selfish for thinking about clothes? No, of course not, I do have to wear them, right? Yes. But I can’t buy a wardrobe for Heart Transplant, so what will I do?

2. Does the Eldest have an appropriate coat? Should I buy one now? Should I wait until we get the call? What if the call says, “We reject you out of hand, good bye” then what? We’ll be stuck with a coat, that’s what.

3. What will we do all day for months in Denver if he does, indeed, get on the list and we have to move there? I can’t move my studio to Denver. Right? Will we rattle around a crappy apartment getting on each other’s nerves for months on end?

4. Would it be possible to carefully pack up my entire Poshmark operation and take it with us? Get a little Uhaul and then I could keep making money and have something to do? How would I unload the UHaul? We neither of us can do that. Who would do that? Should my husband and younger son come up to move us in?

5. If that’s possible, surely I could take a sewing machine? Just one. Oh, but wait, what about not having the serger? Is there any project I could complete without the serger? Could I take them both? I would have to do this without forgetting a single thing, because buying redundant supplies would be terrible. What are the odds that we will find an affordable and spacious rental with studio space in Denver? Zero, they are zero, you are insane.

6. If I’m there for months and then I go home for a week for a break, what if he gets a heart while I’m not there? Sure, my mom will be there, but I NEED TO BE THERE. But I also need to take care of myself, I can’t just not go home for like, a year or something. That’s totally unrealistic. But I know how I felt during the Endocarditis and heart valve replacement nightmare, it was all I could do to leave him at night, even.

7. I will kill anyone who gives his worthless POS father money to travel to see him before surgery. That’s terrible of me, what if he needs to see his worthless, POS father? But pay for him? He’s not staying with us, that’s for sure, and he’s one broke dick all the time, he won’t be able to get a hotel. Fucker. If he does you know he will have stolen his mother’s credit card again (she has Alzheimer’s). Bastard. I’m mad just thinking about this. Why am I thinking about this?

8. What about cooking? Will I be the mom servant cooking three meals a day for my adult child? And cleaning up? WTF will that look like? While my family here subsists on the good restaurant across the street and we go broker and broker? Plus I’ll have to cook low salt for the Eldest–my cooking is cemented with fat and salt, that’s the way it works, we can’t possibly manage without butter and salt.

9. I literally have no clothes for harsh winter. It’s already snowing in Denver, for heaven’s sake. I have one snowboarding coat that I got on clearance in AZ when we visited the Grand Canyon during a freak Spring Break snowstorm. I wear it once a year to a friend’s solstice bonfire because it’s not a fashionable party, it’s an outside being cold party. Why am I so narcissistic that I care about how I look? What is wrong with me?

10. Why can’t I stop thinking? My whole life, I’ve been looking for the STFU switch and my brain does not have one. No one has even called yet. Maybe I should call them, will that make them mad? Will we get a demerit right out of the gate? Oh my god, be quiet.

I am sure we won’t hear from them until next week, so who knows what knots I will have tied myself into by then? This is all just so incredibly, unforgiving HARD.

We await a call back from the Albuquerque Surgeon’s office to confirm that they will, indeed, refer the Eldest to a transplant program. Maybe they are busily scurrying about, doing just that, and a phone call would slow them down, so if I wait (if I am a good, good girl and don’t bother them) they will call in a day or so and all will be done.

You’re right, I really should write fairy tales, shouldn’t I?

Today I took the Eldest to see a new therapist as his last one has ghosted us–and while if only the Eldest had evidence of this I would assume that he missed a text or a call due to his ADD, but I myself directly texted the former therapist and said, “He is in heart failure, he needs to come in” and………crickets.

It’s funny because we live in a small city. Will the therapist rest securely, knowing there is no chance that he will ever see me again? Nope. Our paths will cross, and then what? Excellent question. I will glare, at a minimum. But, no matter that, we have a new one and he likes her and that is what we need to have happen. Next I have to find a prescribing psychologist (we’ve been rejected by two so far) to help with the depression, anxiety, Tourette’s Syndrome and ADD–none of which are properly managed at the moment. Given the situation anyone’s issues would be in a tizzy–I haven’t stopped itching since they diagnosed heart failure, so I can only imagine what it’s doing to him.

“Someone threw up in the sink in the bathroom at work today,” he told me last week. Because the only job he could find is in a horrible call center where, apparently, there are no boundaries. I can’t imagine this being all there was to his life, a long series of crushing disappointments, failures, sadness and loneliness. I know there’s more, but there’s not a lot more and this heart failure business is too much. We already did the thing where he nearly died and I had to essentially manage everything because everyone is stupid and healthcare is not interested in you surviving, I already saw him immediately post valve replacement and spent that awful 10 or so days in the Cardiac Surgical Unit. We should not be here.

But we are.

In the meantime, life goes on. I have two sewing students, my granddaughters both have softball games at 6:00 pm tonight, dinner is ready, I have things I want to sew and art I want to make and, yet, 50% of me is just waiting for the phone to ring. And whatever they say–if they say yes, we are referring him to a transplant program and X program has accepted him or if they say no, we changed our minds, sorry, or if they say we tried, but no program would take him—-none of that will be any sort of reward for waiting by the phone. Or, as it is in today’s world, waiting WITH the phone. Panicking because I left it in another room, obsessively checking to see that I have it and the sound is on.

It’s the slowest emergency in the world, which is awful, except it’s also awful when things start moving along at a good clip.

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.