Happy Thanksgiving Eve.
As I wrote in last weeks post, I had my annual Cardiology appointment on the 15th. Turns out, I had good reason to be scared…
Tiny back story: Last year, I went to see my Cardiologist at my PCP’s recommendation. Made sense considering most people that die from MCTD, die from pulmonary hypertension and other heart related issues. When my appointment came, doc and I talked about the MCTD and what other ailments that stemmed from it, medications, and family history. Typical stuff. He didn’t seem too worried based on my age and my current health but did an echo to be on the safe side. Echo showed nothing, awesome. See you next year.
I was expecting the same outcome. I have a problem with making assumptions. I didn’t even get past the intake portion because my blood pressure was low, which never happens. The nurse got a reading and then had another nurse take my blood pressure without telling her what she got. Same numbers, still low. I have no idea. I just want to see my doctor and get the appointment over with. Aside from that, the appointment started out as it did last year. We went over what’s been going on with the MCTD [and the other issues], we go over my medications, and I volunteer information on my dad’s recent cardiac surgery. He asks me if I’ve had any cardiac issues such as shortness of breath, dizziness, or notice an irregular heartbeat. The only thing I could think of, is the palpitations I’ve been having over the last six or so months. I told him that they generally occur when I’m dehydrated and normally go away after I hydrate. He starts probing a bit, asking how often I have them, what is going on before and during them, and what do they feel like. Well, they do tend to happen when I’m dehydrated [as I mentioned] but also happen at other, random times. Sometimes it’ll happen if I overdue it and sometimes I’ll be doing nothing, and they happen. I don’t get the racing sensation often enough to think twice about it, but I always get the hard, pounding sensation. I saw the look on his face and thought “oh fuck, why didn’t I lie and say everything was fine”. He’s typing and clicking away at his computer and writing things down while I’m over here sweating bullets. He says he wants to do an echo (which I figured would happen anyway) and for me to wear a 24hr heart monitor [belt]. Seriously? Oh joy. What he did next impressed the hell out of me. He told me that he wants to do some research about how often echoes can/should be done and what the exact correlation between MCTD and cardiac events are. His willingness and sincerity mean more than he’ll ever know. It’s not often that you find a doctor who invests personal time in order to be more versed in your health issues. I scheduled my echo for the 28th and the office will call me if they get a belt monitor in before my appointment.
I left feeling absolutely defeated. A year ago, there was no cause for concern about my heart. And now here we are. I know the palpitations will show on the monitor because they’ve been happening regularly. I really haven’t been worried about them; I always chalk them up to dehydration, medication, or anxiety. No big deal right? Wrong. On top of how that appointment left me feeling, I find out that another woman from my support group passed away from MCTD related complications; at 35. This is exactly why I get irritated when people tell me not to worry about certain things because “I’m so young”. Do you really think MCTD gives a flying fuck how old I am? What, is my body going to have a group meeting with my organs and conclude that it won’t do too much damage because I’m “only 31”? My body can’t even figure out that it shouldn’t attack itself. Ridiculous. BUT, that’s not all, because why would it be?
I scheduled an appointment [like every month] to get a new script for my Ativan. I literally just forgot what day I had my appointment on; I had to look at the bruise on my arm to figure it out. Anyway, I go in and do the usual medication update, blah blah. The nurse (who I don’t know or like) takes my blood pressure [which was normal this time] and puts the heart rate monitor thingy on my finger. Then she tells me that my heart rate is high. Fucking seriously? No joke, she put the damn thing on three fingers before she realized that the numbers weren’t going to vary enough to make a difference. Then the PA comes in and she starts playing with the freakin thing. I’m just trying to get my damn prescription and go home; can we not make this into something? As she’s puttsing around with that, I tell her that at the moment [given my current stress level] I don’t feel comfortable doing a taper this month. She hesitantly agreed, and I told her straight up that if I tapered down, I would be short medication and I really didn’t need to be in the hospital again over this shit. That shut her up. Meanwhile, she’s still messing with the damn monitor and telling me that the anxiety of the appointment was the cause. I had to laugh, I’m not sorry. I practically live there and enjoy being child free for however long an appointment lasts. Then, she asks if I’m ok with her doing an EKG. Sure, why not. The nurse comes in with the machine and I mention that my stimulator implant may interfere with the readings like it did last time. She had zero clue what I was talking about and even less of a clue as to where the leads need to be placed. This moron took three readings before taking them to the PA, who comes in, replaces the leads, and takes three more fucking reads. For the first time, I felt like the smartest doctor in the room. After I’m allowed to put my tits away (yup, had leads right up under the girls) she says she wants to do some blood work to check my hydration levels. Whatever go ahead. Nurse dipshit comes in and gets a vile for the labs before she leaves me in the room trying to control the bleeding from the injection site. That never happens. Bitch gave me a lovely bruise also. PA gives me my script and said she’d call me tomorrow with the results. It’s the end of day two and no phone call.
I’ve been trying so hard to process all this that I’ve been keeping my distance from everyone. When Ava is awake, obviously, she’s center stage, but once she’s asleep (for a nap or bedtime) I crawl into bed, put my head phones in, crank up the volume on my girl Halsey, and shut the world out. I don’t really know what else to do that’s not self-destructive. I’ll be completely honest, I’ve had to force myself to not do stupid shit in an attempt to [once again] run from reality. This year has beat me up pretty bad. Between advancements with my MCTD, surgery, and strange, abnormal blood work, I’m exhausted. And I’m afraid that someone is going to tell me that there’s something wrong with my heart. I’m not expecting for it to be anything major, but damage is damage ya know. My PTSD gave my OCD permission to override my thought process and I decided to clean the whole house today. Yupppp. Now I’m in pain AND in isolation mode. Happy fucking holidays yalllll.
The only good thing that happened this week, is my dad coming home from the hospital. He’s having a rough time recovering, but he’s a trooper. Ava is so excited to see him after 2 weeks, which to her, is an eternity. They’re such an adorable duo, my cold little heart can’t stand it.
I will update once I get the results of my lab work and after I’ve had the monitor and echo done. Fingers crossed for minimal damage.