At times I have trouble remembering all of my medical issues. I don't ever forget migraines or diabetes. Those stay with me. But I'm on like 20 medications. Its easy to forget that I take one for environmental allergies... even though I continue to list having NO allergies. Its easy to forget that I take one for GERD or acid reflux (recently I don't forget that as my new meds seem to be messing that up). I'm on enough meds that when a nurse goes to confirm my medications before a doctor's visit, her eyes will widen in surprise. As if she's saying mentally "Jesus Christ that's a lot of meds!".
Lets try to list all of my medical diagnoses that are relevant. Diabetes. Migraine. Depression/Anxiety. Seasonal Allergies. GERD. High Cholesterol. BPH. COPD. CAD. High Blood Pressure. Obstructive Sleep Apnea.
I have my general practitioner, Dr. M. He's like the quarterback of my medical team, keeping all of my specialists in order. He directly manages my seasonal allergies, my GERD, my COPD, and my BPH.
I have my endocrinologist, which is changing from Dr. H to Dr. R, that manages my diabetes. Dr. H used to manage my blood pressure and cholesterol as they were at higher risk due to my diabetes, but that's changed.
I have my two neurologists, Dr. W and Dr. C, that manage my migraines.
I now have a mental health nurse practitioner that manages my depression and anxiety. I also have a therapist, but I don't really consider G as part of my care team.
I now have a sleep doctor that manages my obstructive sleep apnea, though this may not last all that long.
And the newest member of my care team is my cardiologist, Dr. M. He's managing my CAD, cholesterol, and blood pressure.
I guess I should go over my conditions.
Migraines
This is the condition that's most discussed here. They are finally well managed, though I'm on Propranolol, Emgality, Namenda, low dose Naltrexone, Quilipta, and Zonegram for them. I see Dr. C this coming Monday and it should be a short visit. I'll thank him profusely for helping out this year (my first visit with him was in January!) and let him know that I'm down to just several migraine days a month and now consider them well managed. I'm even seeking work. As I was referred to him by my primary neurologist, Dr. W, I'll continue my migraine management with him (next visit in October) and will only see Dr. C if the need arrives.
Hopefully going forward, this will just be an annual visit to say that the migraines haven't changed significantly and there doesn't need to be any change in treatment.
Drug Side Effects
I know this isn't one of my conditions, but its worth noting as it's a major issue this year. Between October last year and May of this year I started and/or changed about eight different medications. The primary result of these was changing my mental health from near suicidal to 'normal' and my migraines from debilitating to manageable. In other words, I don't want to have any chance of changing those outcomes.
Unfortunately, these good results came with a host of side effects. Which med specifically caused each of these side effects? Who knows. It would be a royal pain to figure it out and each change would have the chance of undoing the good work for my mental health and migraines. So, now I get to deal with increased prostate issues (difficulty starting urinating, inability to fully empty my bladder, dribbling), disturbed sleep patterns (sleepy during the day, waking early, going to sleep early or late...), night sweats, change in appetite, muscle tremors, and occasional dizziness.
So far these side effects are annoying but not problematic. We'll see how they affect me when I'm working again.
Diabetes
For the most part, my diabetes is well managed. I have a good A1C, and my endocrinologist reduced my insulin use this year. I'm on a continuous glucose monitor that helps me see my blood sugar at any point during the day and has honestly helped me by letting me know how diet and certain activities are affecting me. The only real downsides of the glucose monitors are cost (a six month supply is like $300) and when I put a new one on it tends to read dangerously low glucose levels at night for a couple nights. That means it will alarm me and wake me up. The first few times that happened, I'd get up and take an actual blood glucose level using my blood, as its more accurate than the cellular fluid that the continuous glucose monitor uses, and see that my glucose level was fine. Now I just take a moment, self assess to see if I'm symptomatic, and if not I turn off bluetooth on my phone so it can't get the alarm signal from the monitor (otherwise it will alarm every 30 minutes all night).
I'd be down to seeing my endocrinologist a couple times a year BUT my endocrinologist, Dr. H, retired in June. He referred me to another endocrinologist, Dr. R, and I'll see him a week from Tuesday for our first visit.
Dental
Yeah, something else I didn't mention above, but something that should go under medical care. My teeth are just bad. My dentist and I had a pretty good plan going, but my migraines issues these past couple years basically put that on hold. It just hurt to bad to get any dental work done. I also lost dental insurance earlier this year (COBRA ran out).
There is one dental issue that needs looking at sooner rather than later. On my upper right side, my rear most molar, seems to be cracked or even broken on its back edge.
I should get my dental insurance back when I start working again so when I see my hygenist for my next cleaning in November we'll be able to schedule my next dental work. As all four quadrants of my mouth need work, I'll just point out that the only area that I can personally feel is my upper right, so we should probably start there.
Insurance differences (payments)
Another thing not on my list, but obviously is a big part of my medical worries. I mean, I have to pay for all of this, right? I currently pay almost $800 a month for my insurance and it's not as good as the insurance I had while working. I pay more for co-pays, I pay more for deductibles, I pay more for lab work and specialists and just about everything. Plus the max amount I have to pay has gone up significantly and I won't likely hit that number this year before I get a job and switch back to that insurance.
Now, when comparing insurances I saw that this one was the best, but still had higher copays and such. So it should be baked in that I pay more, right? Well, no. You see, I pay more AT the visit for my copay. Then I get a bill later when the insurance doesn't cover the full visit cost and have to pay more. Then I get another bill when the insurance doesn't cover all of the tests and/or lab work. Before, I'd pay like $20 for a normal visit. Now I feel like I'm paying well over $150 for that same visit and it's spread out over three months. It's more expensive and more random at the same time. NOT COOL!
Sleep
When I saw Dr. C, my neurologist, I complained of headaches that I got each morning and generally lasted all day. I've had them longer than I've had migraines and honest, I don't think about them all that much. They're as much a part of me as being overweight or having bad vision. It's just a part of me. But being a neurologist he of course didn't want to leave it alone so we talked extensively about it. He finally suggested I see a sleep doctor as bad sleep apnea could be causing the headaches. He was doubtful of this, but figured it was best to just knock it off the list of possibilities.
I'm normally all for doing medical tests to confirm something ISN'T there. It's peace of mind. I take a sleep test, see that I don't have obstructive sleep apnea, know that it isn't causing my headaches, and move on. But that's not how sleep tests work. Both as a nurse and as a friend/family-member helping other people through sleep tests, I've NEVER seen a sleep test that didn't end up with a recommendation for a CPAP.
Even before going to a sleep doctor, here's what I know about my sleep. I snore. When I was more overweight I snored VERY loudly and had obvious episodes of apnea where you stop breathing. When traveling as a photographer I had to share a hotel room with enough other photographers that I was told this on MANY occasions. At the same time, when I lost weight down to what I'm at now, my snoring goes almost completely away. As A put it when we shared a room on our recent vacation in Austin, I 'purr' in my sleep more than snore.
But my heart conditions, diabetes, age, and just being a man, put me at risk for having obstructive sleep apnea. On the other side of that coin again though, I wake up well rested most of the time and besides the recent drug issues, don't get tired in the middle of the day.
In short, I'm sure the 'risks' would suggest I need the CPAP but unless it showed me a benefit for the headaches, I wouldn't bother using it.
My thought going into the evaluation with the sleep doctor was that he's going to recommend a sleep test. That test is going to show that I need a CPAP. I'd accept the CPAP and use it for awhile (a month? a couple months?) and evaluate it using my headaches. If the headaches didn't improve, I'd thank them for the help but return the CPAP.
The sleep doc was at least honest. He focused almost entirely on my risk factors. He was doubtful that even if I had obstructive sleep apnea, that it was causing my headaches. He still recommended a sleep test.
The sleep test could at least be done at home. It consisted of a belt that you put around your chest and would measure your chest moving when you breathe in and out. It also had a nasal canula to measure how much air was moving in and out of your nose and a pulse oximeter to measure your blood oxygenation level. It wasn't comfortable having all this equipment strapped to my body, but it didn't prevent me from sleeping. I even did my best to stay in bed for the recommended 7 hour minimum.
When the results came back I learned a lot about sleep tests. It's measured using AHI, apnea hyopnea index. Basically the number of times per hour that you either stop breathing or breathe too shallowly. An index score of less than 5 is considered normal. 5 to 14 is mild obstructive sleep apnea. 15 to 20 is moderate sleep apnea. 20 to 30 is severe.
My score was 39. Fuck.
That's an objective number that's hard to ignore. I still find it worrying that I have no outward symptoms of sleep apnea like trouble sleeping at night, difficulty waking, and daytime sleepiness. But it gives me even more reason to give using the CPAP a good college try. I picked it up yesterday and used it for the first time last night.
I'll say this, CPAPs have come a long way since I've messed with them as a nurse. Just incase you don't know what they are, its a device that provides positive pressure over your mouth and/or nose that forces you to breathe fully when asleep. It can include water to humidify the air and even heat to prevent the machine from fogging up. The ones I've messed with before were noisy as all fuck.
Mine is all digital. It has an app on my phone that measures all kinds of data points each night. It starts at low pressure which helps you fall asleep, then ramps up as you need it during the night. It even has a quick release on the mask so you can take the tubing off. That allows you to get up and use the bathroom and even get a drink of water (with a straw).
Last night I set it all up, put the mask on, turned the machine on and found the first problem. When I lay down, I tell my Google Next 'Good Night' and it does a series of tasks from turning off the lights, to telling me the next days weather to setting an alarm to playing some music. But when I have a mask on, I can't talk to it. So even before laying my head on the pillow, I have to disconnect the tube and say through the mask 'Good Night'. I have to wait a few seconds while it works, then tell it that I don't want an alarm in the morning, and then finally when the lights are out, I still have to wait to see if its playing the music right (it gets that most of the time but lately it's been confused and plays teh wrong thing, meaning I have to tell it what to do all over). Only then, can I connect the tubing back up and lay my head down on my pillow.
Now, a lot of these annoying things I'm sure I can get used to. Like how it feels to roll over with the tubing connected to my face. Like how I can't open my mouth wide for a big sigh or yawn. Like having that feeling of pressure when I breathe out (when it starts, I don't notice it when I breathe in). But what I'm not sure I'll be able to get used to is the full pressure experience.
My sleep doctor recommends I let the machine use its 'auto' feature between 5 and 20 (I'm not exactly sure what it's measuring.... cm?). When I turn it on and lay my head on the pillow its starting out at 4. When I woke up 2 hours later and felt like there was a hurricane blowing into my nose and mouth and not letting me breathe out, it was at 11. I seriously felt like I couldn't breathe and was panicking. I had to disconnect the tubing to 'breathe'. I tried connecting it back up a couple times but couldn't get back to sleep or even out of a panic state. So, I got up and used the bathroom, got a drink of water (no straw, so I had to remove the mask to drink), and then started over with the CPAP. As it was at the low 4 to start I didn't have trouble getitng to sleep.
An hour and a half later I woke up to the hurricane again. It was the same result, with me being unable to get back to sleep. I simply turned the machine off and took the mask off at that point, going back to sleep without it.
I'll still try it. I'll still put the damned thing on tonight. But I'm not sure how long I'll be able to keep trying this if it wakes me up in that panicked state. I mean, I guess I could just turn it off and turn it back on to get back to sleep. But waking up every few hours like that? That would just suck! And I don't have another visit with the sleep doc to evaluate until October.
If I were a betting man, and I do like to bet, I'd wager that after a week of trying I'm going to ditch the CPAP. I don't imagine even being able to make it through a night.
Cardiologist
Finally, the cardiologist. When I saw my doctor recently, I told him I was experiencing most of the drug side effects. We agreed to simply monitor most of them and we'll discuss them at our next annual visit in November... except for the dizziness. While it's most likely that's a drug side effect, it could be something far more severe. So he referred me to a cardiologist to eliminate that as a possibility.
The last cardiologist I saw a few years back was an asshole. I hated dealing with him and would avoid him at all costs. Thankfully I got a different, newer, cardiologist. Even before he came into the room, he had the medical assistant get a EKG so that he could rule out some things. When he came into the office, he said my EKG was normal for me (I have a heart murmur and it shows up on an EKG), and after we discussed my symptoms he agreed that it was unlikely to be cardiac in nature. Most likely, a drug side effect.
If we'd stopped there, I'd be fine. But he said he should go over my chest CT that I had to check for lung cancer back in December, just to make sure nothing untoward was there. He noticed the COPD and said I should probably see a pulmonologist for that, but was fine with me just seeing my doctor and having him manage that. But he also noted that there was some buildup in my coronary arteries. Enough that just using that, he could diagnose me with coronary heart disease.
Now, that's no real biggie. I'm not specifically symptomatic. But he said I had to take my cholesterol even more seriously, so he quadrupled my Lipitor dose and ordered updated labs in six weeks to make sure it was working. He also suggested a specific CT exam for the blocked arteries so that we could better quantify my CAD.
Assuming that the CT doesn't find anything worth discussing and that the lab work in six weeks shows a proper reduction in my cholesterol, I'll see my cardiologist (as yes, he's now MY cardiologist) in a year. The only real scary thing is that the CT COULD show more blockage than either of us suspect. That could mean suggested procedures like angioplasty.
Overall, none of these are big major things. The migraines WERE a big problem, but they're now well managed again. I'm ready to just go back on coasting for healthcare. See my doc, my endocrinologist, my dentist, my neurologist, my nurse practitioner, my therapist, and now my cardiologist (fuck the sleep doc), once or twice a year each and nothing more.
But I'm a realist. Each of these things alone can get worse and take me down a bad path. Having multiple health issues like this skyrocket my risk of a major health crisis. Heart attack, stroke, death.
I've known for a long time that I'd die on the younger side. I just thought it would be around retirement age. 65 or 67. But now at 51 I can make an argument of me not making it another 5 years. Is it LIKELY that I die in the next five years? No. But it's FAR more likely that I'll die in the next 5 years than just about anybody else I talk to will.
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