Post op, and other fun of a bendy body

Things have still been great since surgery. I'm not having the spinning and near-syncope and weird and horrible crap that I was before.

But I have had some new stuff (or stuff I didn't notice before). I've only had two very small dizzy spells since surgery, which is great compared to before. I've been having issues related to my heart rate and blood pressure. My heart rate has been higher since surgery. In the 80's on average. So it takes less time/activity to raise it to 100, at which point I start getting jittery. And my blood pressure has been a little higher. 130/80 ish. While that's not a scary number, at 24, my diastolic number shouldn't be 80. And both numbers are at least 12 points higher than they were before.

This leads to jittering, body temp regulation issues, some trouble getting to sleep...it's not fun. It's worse on work days because I'm on my feet, so my body is stressed. But all the same, it's not easy to deal with. I follow up with the surgeon soon and I'm going to bring all of this up and see what his suggestions are.

I've been back in PT and it's been great. Learning a lot of exercises and ways to move without killing my body and dislocating joints. When I'm done with PT in a couple weeks, I'm going to join a gym to keep up with it and do other exercise as well (they have a pool!!).

Work has not been great for my pain. Seems like it gets worse every day. It's lower body more than upper body - because lower body has to take on the work of holding/supporting everything - and it gets to the point where I can't walk at the end of the day. I really don't like that part. I've been taking muscle relaxers on bad days just to get some rest when I get home at night. I have an appointment with an orthopedist next week and I'm really looking forward to that. I don't know how much he'll be willing to do, but I gotta start somewhere, and his nurse made it sound as though he was willing to give it a try (because she wouldn't even schedule me at first because she wasn't sure if the doc had worked with EDS enough that he felt comfortable with it, he had to think on it for a day before saying yes, which I do appreciate).

And this morning my mom said that maybe someone at the EDNF conference this summer would be able to lend some pain management insight. And yes, I was hoping for that, but it felt good to hear it coming from her too. I know that she takes my illness seriously, but to hear her getting involved made me feel a little better just because not many people know what the hell to do with EDS, much less try (doctors, family, friends, it's endless). So my mom thinking proactively was a cool moment for me (because I think that's the first time I've ever really had anyone be first to think proactively before me about my EDS...I know I'm constantly thinking about it, but it's nice to know when I'm not the only one).

I'm just about to the point in my day where the pain is creeping up and not stopping, so I should vacate my chair in protest now....

Little update, from the comforts of a restful day

So, in the hospital, I was taken off the calcium channel blocker the next day and a cardiology specialist (an electrophysiologist) visited me. He and the attending cardiologist discussed my case and thought I should know my surgical options.

Doing something called an electrophysiology study would help map the heart and show where the problem was, allowing the doc to ablate it. I agreed that it was worth trying, especially if it was successful and could free me from symptoms and meds.

After that week, I never improved and I remained on medical leave, on near bed rest, while I waited for surgery.

A very LONG 6 weeks spent sitting in my recliner or napping (I tried to keep the bed rest/napping to a minimum...it was bad enough that I couldn't walk to the bathroom without feeling faint, but I didn't need my heart getting weak from positional change as well). I gained 12 lbs because I was getting absolutely NO exercise - I let the dog out to pee 2-3 times a day and microwaved food a few times a day, but that was it.

My parents came into town for surgery. They picked me up the night before, I went to the hotel with them, and they took me in early for surgery.

I got in at 0630, went through pre-op tests, labs, questions, etc. Busy morning. And a very helpful and committed group! They answered all my crazy questions and did everything they could be accommodating to my EDS and other concerns.

I was taken to the procedure room at 8 and a thousand stickers for mapping, monitoring, and cardioverting were stuck to my chest and back. My fluids and potassium were started, I was given an oxygen mask, and finally, a fun little cocktail of propofol and fentanyl (it's hilarious because I knew this time what to expect from the propofol...you only get a second to experience it, but there's a wicked floating, tingling, spinning sensation right before you drift off, and you wake up very quickly afterward).

My parents were given an update at 11 that the trouble was located and two spots were ablated. I was waking up as I rolled into recovery at 11:50. By noon my eyes were open, no oxygen, and I was talking (poorly...because the intubation really did a number on my throat). I was also shaking violently. I was conscious, not cold, not in pain, but my body wasn't ready to wake up without a fight, so I got some additional fentanyl to take the edge off and was much more comfortable after that.

So then I just had to survive the bedrest part of the recovery. Perfectly flat for 5 hours. Not something EDS joints want to hear.

By the time the 5 hour mark was nearing, I was being wheeled to a cardiac floor for a couple hours monitoring. And I was in pain. And I had to pee. And especially that I had to pee (my belly was distended and it HURT). I tried the bedpan in recovery, but between laying flat, anesthesia, and being cathed in surgery (so I wouldn't wake up with a full bladder), I was very unsuccessful. Even after I got upstairs with an additional half liter of fluids added to the 1.5 I'd had already so far, it took me a while to go on the bedpan. I didn't empty my bladder until I got up though.

Then I got to eat. And lo and behold, I was ABLE to eat. So apparently a lot of the stomach and digestion issues were hidden beneath a heart issue for a long time. (granted, I'm still adjusting to a lot of foods and things because I haven't really eaten much in the last 2 years)

Got to go home that evening with a prescription for aspirin to help the vein and artery heal, orders to take it very easy for 5 days, and return to work in a week. First couple days were rough because not being able to bend and twist and get comfortable in weird EDS ways was painful. But once that was over, I was great.

I went to my GP and got a new script for physical therapy, and was able to get in my first session that same morning. So I returned to work Sunday with no restrictions. It was certainly a rough day given how sedentary my life has been this year, and because I started my period (I don't have periods anymore, so this was not expected nor well-tolerated), but I survived it. I was in a TON of pain, but I survived it.

I'm still having some issues with my heart, some mild palpitations a few times a day, and my resting heart rate is much higher than it's ever been (about 80), so any activity brings it up quickly (yesterday that was irritating because I start feeling jittery around 100 and I was busy enough that it was up most of the day). But given that my heart has been through the wringer, I've gotta give it time to adjust before I go getting worried. Every surgery has a recovery period.

Other things related: I had my doc do some blood work. I stopped taking my vitamins a few months ago because my GI doc was finding minimal signs of malnutrition/malabsorption and taking a junk ton of pills every day was only contributing to the nausea. So I stopped. And asked my doc to check to see what was necessary and what I could do without and in between. I know I need magnesium back. Bad. I've had constant muscle twitches/tremors/spasms for months. But I don't want to go popping a ton of mag if a little will do the trick (mag is very nauseating).

Got back into PT, as mentioned. I was only in it for two sessions before I had to be discharged for medical leave. For my initial eval the first time, I saw a part-time/fill-in named Jen. She did all the fun "getting to know you" stuff and set up my treatment plan. For my second session, I saw my regular PT, Laura. This time, Laura got to do the initial assessment. And boy did she have fun with it. She's never treated someone with EDS before. She got a kick out of the fact that she didn't have to strain to get normal range of motion out of me, and that I just kept going past normal. I told her I was made of rubber, but she just didn't believe me HAHA So we got me all lined up with a plan, and she referred me to a hand therapist for the tiny joints that need some help (she said she doesn't do anything smaller than simple wrist fracture therapy, anything smaller, she sends to better specialists).

I'm also seeing an orthopedist next month to evaluate for braces, splints, and other external joint support. I'm greatly looking forward to this part of the process, because I think there would be a lot less pain in my lower joints if they could support any weight without bending in 8 wrong directions. Plus, I need them to not be so worn out this early in my life. I have a lot of years left and I can't be killing my joints in the process.

I've been signed into blogger for quite some time now trying to get this all written and chat at the same time. So I'm going to resume my restful day (first day back at work after 7 weeks of sitting will take it out of anyone) and chat for a bit longer before I tell myself that bedtime must be reinstated (it must).

Greetings from my rock hard bed and hotel-style hospital abode

Went back to the ED yesterday because I was still having all kinds of palpitations and fluttering and just didn't feel well at all. They admitted me to telemetry. I got to the floor about midnight, and then there was a code blue next door so my nurse had to leave. By the time I was admitted and ready to go to bed, it was 2 am. And then I woke up at 0430 in pain and having nightmares (that's what happens when I don't take my klonopin, which I didn't because of the time and how long it took pharmacy to get here with it). Then I had stress-induced IBS (I think the nausea I already had and the memory of how sick I was last time just did me in). I was sick and in pain most of the morning. Got medication for that, napped a bit, then up again to see doctors.
The cardiologist is switching me to a calcium-channel blocker and we're going to discuss the possibility of cardiac ablation to zap the nerve that's causing the SVT. While I don't like the idea of another surgery on my roster, and while I know that for EDS/POTS/dysautonomia patients there's a chance it won't work, I do like the idea of something that could stop the problem without daily medication that has so many side effects. My nurse just said I'll be seeing that doctor in the morning (different doc than the cardiologist, but they work together).
And I've finally been able to eat, and I showered (I'm in a crazy stupid amount of pain from my chest and back hating the heart issue to the hard bed and too much sitting...I wish I could have stayed in the shower all day), and I have more food coming up to snack on while I watch Superman (I asked my dad to bring me something, that's what he picked).

Okay, time for a little rest, because I'm doing my best to stay up and out of bed, but it's tiring....

It's time for another round of "add the diagnosis"

Sustained bradycardic sinus arrhythmia.

Yup, that's why I've felt like crap the last week or so. Time for more doctors and more appointments and more hair pulling.

Bring it.

Shout it from the rooftop or just cry, either will do

I just spoke with the geneticist. The biopsy taken over the summer came back a little while ago but we had been playing phone tag. I definitely don't have Type IV (which we knew anyway). Which means based on clinical findings and tests/procedures, I have now officially been diagnosed with Hypermobility Type EDS (which, again, we already knew and were treating for).

It was a bittersweet call in many ways. I cried when I hung up the phone. But I'm not sure what the tears were really for. I'm already getting treatment for a number of issues going on surrounding the EDS and likely dysautonomia (that one hasn't officially been diagnosed, but again, we've been treating it as such). And I've known what it was for years. Now it's as real as it can be. And I'm going to fight that much harder to make sure that it doesn't change my life for the worse.

EDS, you can bite me. Real life, we're gonna win this one!

Physio, day one

Given how unfabulous my last experience with physical therapy was (for my chest pain, a few years ago), I'm very thrilled with how PT went today. I had an evaluation and did some basics with a very great and understanding therapist. She determined the weakest points in my body (as far as large muscle groups and joints are concerned) and where my balance was good or needed work (I balanced on my left foot better than my right, but did better raising up on my toes on my right foot before my balance left me. And we also learned that I don't have balance with lateral/side to side head movement (almost hit the deck twice doing that). I have some exercises to do for my hips (she could feel the tendon snapping in my left one as I practiced, so we altered slightly to make it more helpful than harmful), and two for my shoulders/rotator cuff as well. I won't be able to make it back until after the new year, but I have 12 sessions total and I'm actually looking forward to it.

I have been so very grateful for my intermittent FMLA and it's only been a few weeks. I like the idea of actually being able to take the day when I have an awful day. But I am really hoping I can use those days sparingly (I am still hoping to have a J-tube within the next year...really just hoping the SLU group can figure something out or at least listen to reason).

And today has been a wonderful rest and relaxation day after PT. Which is wonderful :)

Hope you're all feeling well and having a good day. If not, we'll keep hoping for a better tomorrow.

Dysautonomia, how do I heart thee?

Apparently not all that much since my heart rate hasn't made it to 50 in the better part of 12 hours. Even though I'm tired, it's not a horribly dragging or sluggish tired. Mostly I just feel like my heart weighs ten tons (persistently low heart rate leads to turbulence...can you actually feel turbulence in your cardiovascular system...?) every time it beats. That's the part that's exhausting.

So, while I wanted to stay out here and work on moving some PDFs to the Kindle, I think that's gonna have to wait. Time for bed, time for horizontal, time for a lot less heavy thudding in my chest.