Friday, August 24, 2012

Blarg. I need an "easy" button.

Went to see my family for a couple days earlier this week. Got my second round of SI steroid injections so I was stiff and sore and ouchy the first night. The second day there was less pressure in my hips so it hurt a bit less, but I still needed some rest time in the afternoon.

I got a phone call while I was resting and was told by the cardiologist's medical assistant that the physician had gone over my EKG strips from the event monitor and wanted to start me on medications and order another test right away.

He wanted me to start on Lopressor and full strength aspirin. And a cardiac MRI, in addition to the tilt table test already ordered. So, needless to say, I was upset. I feel like every time I get ahead of something, something else comes up. And when my heart is involved, it gets scary. So I cried and freaked out.

Then they called back to confirm that my tests would both be on the same day to save me some trouble, which is very nice of them. And I had asked the nurse if she could find out anything more specific about what was going on and why the sudden changes.

She said I have some kind of arrhythmia in addition to the tachycardia. They don't really know what it is yet. It seems that my heart is still pumping just fine, so that's good. But the arrhythmia is currently unknown. The nurse did mention that a-fib was a possibility, which had crossed my mind, and I really didn't want to think about it. But now I'm thinking about it.

Since my first heart surgery was in the atria and because I've had a second surgery on nerves, it's very plausible that I've developed a-fib.

I honestly don't know what I'll do next if that's really the case. I can't have the ablation surgery again....too risky. But I don't think a pacer would be any better.

I'm on the Lopressor to help lower my heart rate in an effort to make me a bit more comfortable. It may help with the arrhythmia some as well. And the aspirin would have to be to prevent clots and minimize inflammation around my heart for the time being in case there's a problem.

The MRI is to look for scar tissue and see what's going on in there that we haven't seen yet. I imagine the focus will be on my previous surgery since that was pretty big.

All in all, I'm stressed, and trying hard not to be, but I'm human and this is scary. But I'm dealing...I'll take the meds. My mom and possibly stepdad are coming to be with me for my tests in a couple weeks. For now, just counting down the days until I know more.

Friday, August 10, 2012

Just another random EDS update (mostly so I can remember things better :P )

Setting my mind to call the cardiologist/electrophysiologist Monday to make an appointment for a tilt table test. We agree that my symptoms are all very dysautonomic, but testing is still necessary. So now's the time.


Felt kinda poopy this week. I'd been having a lot of down days the last few weeks and I knew that I needed fluids but kept putting it off. Yesterday, after three days of feeling really draggy, my heart rate started shooting up when I got up and my blood pressure was funky in several different directions. It was time for a trip to the ED for fluids.

I took a Klonapin to help chill me out (knowing that I'm doing worse and knowing I'm going to the ED again makes me a little jittery, plus, Klonapin usually helps bring my HR down a little). And dad had just gotten home, so he drove me there and dropped me off so I wouldn't have to drive while I was feeling funky.

They got me back right away (they weren't flooded and chaotic like last time I was there). And even though I always baffle people with the EDS and accompanying cast, things usually go pretty smoothly.

I was more dehydrated than I realized - starting the IV wasn't as smooth as it usually is. I told her where I had a good vein that was a little deep, but still strong and out of the way of any joints. She got the catheter halfway in and did my blood work from that, then when she tried to advance it further (we both felt it wouldn't work) and flush it, it blew. Bruise number one. 
Second attempt was in my hand. Even though my fingers move around a lot, I still don't have major problems with the back of my hand (compared to wrist, thumb, AC, joint-y places). Again, tried with a small catheter, but the vein was just not plumping up or holding up well and it blew. Bruise number two. Ouchie.
So I gave in and let her use the visible and easy vein in my AC space. I realize that it's easy to just start there, but putting them there usually results in not moving the arm and subluxing as a result. Luckily, she was able to shoot high enough that I could still move my arm a bit and still dump fluids in quickly (my body sucked it down). Bruise number three, but at least that one was successful.

She was very understanding and I felt bad for her for having to do so many attempts. After the second attempt failed, she was about to get someone else to come in and try, but I know what that's like. It was easier for everyone to just do the AC stick and get it over with.

And my fluids went VERY quickly. Under 45 minutes for the first liter. And I got a shot of Zofran so I could drink my gatorated (another liter) and nibble a salty snack. I still hadn't peed by the time the first liter plus gatorade was in, so I asked if we could hang another long enough to make me pee. It only took about 300mLs of that one. I peed, I felt better, I got to go home. 

The physician who saw me last night has seen me before. He's very kind and understanding. We made jokes about me being a junkie for that normal saline. I'm glad he's able to joke with me about it, because I can't imagine what it's like to be a physician who doesn't really know much about what's going on with a patient who is asking for specific things (but I never ask for drugs, so that helps).

And I did tell him that I planned to ask my fab PCP about a script for routine fluids at an infusion center to help prevent these crashes. I'm really really hopeful at this point that we can read some lit together about IV fluid treatment for EDS/dysautonomia/POTS/chronic fatigue/chronic pain and come to an agreement about how this could help me. Get me into an infusion center at least 2 times per month, but maybe even as much as once a week. And if that all seems to make a difference, go for putting in a port and doing treatment from home with home care assistance and delivery (home care nurse to help with accessing the first few times and observe me accessing my own to know that I'm doing it right). I would love to be able to get a port, get my supplies and fluids delivered to my house. Infuse every other day or so from my own home so I'm not wasting energy and time to go to an infusion center, and hopefully just find that I have more energy and feel better more often.
I realize that it would cause some restrictions and some problems along the way - travel would be more difficult with supplies and making sure I had documentation for anything if need be, making sure I always had time to infuse no matter where I am so that I don't have crashes, etc - but I feel at this point that the benefits far outweigh the risks and I'm hoping everyone involved in my care will agree. I know I'm a long way from there, but I'm willing to do whatever it takes to have the best days possible. 

I have this disability, it does NOT have me. 

Feeling well today though. And I'm so glad because it's girl date night with Megan! I love being able to get out and do fun regular things with her. We're going to head to the mall to Lush for some beauty and pampering, and then to a movie (Step Up Revolution! YES!) and then dinner at Cheesecake Factory, because I've never been and this was Megan's birthday gift for me (we just keep getting setbacks and wanted to make sure that when we went, I was feeling very well to enjoy it. Bless her for being so patient with my body's unpredictability). So I'm looking forward to a normal Friday night out with a girlfriend!! This is what I work so hard for each and every day - to get these good and normal days!!

Saturday, August 4, 2012

Big thanks to EDS for doing insane things to my body

The cardiac event monitor is still on (I take it off on the 16th, counting down the days). I have no skin left around most of the electrodes. Once I get this thing off, I'm going to heal up the sores and then pamper my skin like crazy! And I've given up on the hypoallergenic/more sensitive this point, they all suck and they all feel like they're made of battery acid.


The pain management doc prescribed me Cymbalta to try for pain when I was there about 2 weeks ago. And for whatever reason, it took forever to get filled. I kept whining about how long it was taking and that by the time I got it, I wouldn't know anything by the time I saw the doc again.
So glad that I was proved wrong. I finally got my hands on the meds Tuesday evening (and it was prescribed for twice a day) and took it that night before bed, with the rest of my PM meds.
I woke up at 0500 shaking and feeling like my body was trying to turn inside out. It got worse as the day went on with the second dose. Oddly, caffeine helped ease it a bit, but that was the only thing I'd taken in for half the appetite was GONE. I wound up taking Klonapin halfway through the day to chill out the anxiety and felt better, but still no appetite.
Same thing the next day; a bit less shaking, but still very anxious. Took Klonapin to get me through the day again. Decided that I probably hadn't noticed problems with the first dose because I took it with my bedtime meds, which includes Ativan, which is why it didn't hit me until early morning when the benzo wore off.
By day three, Friday, I felt like death. I was incredibly depressed, still a bit anxious, and felt like I was just trapped inside my body. I couldn't laugh - funny just didn't feel funny. And I'm a giggly person, so that was scary. And knowing that something was wrong like that felt weird too.

I went to the cardiologist to discuss how I was doing since my syncopal event and how I was doing with the monitor. He said that so far he hadn't seen any dangerous rhythms on my EKG strips. There had been some sinus tach, which isn't all that bad since my HR tends to run higher than it used to. He said there was a possibility that because of my previous ASD repair there was some atrial tach too, but he couldn't be sure. And the reason he wouldn't have seen that during my surgery was because anesthesia suppresses that. But all in all, not a lot to worry about right now. Which is good.
He also said that since I'd obviously had some dysautonomia but never had any official autonomic testing, he'd like to look into that (tilt table test). But with the way I was feeling with the Cymbalta, we agreed to hold off on that until I was feeling a bit more like myself.

I also saw the pain management doc Friday afternoon. He told me if the Cymbalta was making me feel as bad as it was, there was no reason to keep taking it and things getting worse. Thank God! He said that there was nothing really abnormal on the MRI images of my lower back and hips (which, good, but still...for that much pain, that's surprising). But at the time of my appointment, my pain was currently around my SI joints, so he offered to try some cortisone injections in those joints.
Thanks to EDS, the local didn't help as much as I would have liked (on the left side, I had pressure, but on the right side I had a ton of pain and felt the needle all the way down to the joint). But it's a quick procedure and I was being cleaned and bandaged within minutes.

Came home and napped, had a good amount of pain from the injections when I woke up, which wasn't shocking, just not fun. So I can't get comfortable on my side as much as I'd like to (since I usually sleep on my side). I have a lot of bruising at the injection sites and my butt crack just hurts. All in all, not the worst pain ever.

The doc said it would take up to a week for the steroid to work and to come back in 2-3 weeks to decide if it was worthwhile and something I wanted to do again. I have no idea if this will do any good and I know that it's not usually something that works well for bendies like myself, but I figured I would never know unless I tried.


Even though I'm still essentially on light duty at work because of the monitor (I've been secretary or psych sitter), I decided to take the weekend off. While I need the money, I just felt horrible and my body has had one hell of a week with the Cymbalta and then the injections. I'm glad I took off too. I still don't feel like myself today and I've had to force myself to eat (though after some veggie pizza, I actually had a craving for ice cream!). And my butt is sore enough that I think sitting in an uncomfortable office chair for 12 hours would have made me miserable all day. I may have to pick up some hours elsewhere in the week if I can.


And through it all, my puppy has been taking good care of me. He napped with me yesterday when I got home from the doctor. When he was done napping but I was still in bed, he went and sat at the end of the hall with his bone and just waited for me. And today, I haven't been allowed to take a step without him watching out for me. He's a good boy. Life wouldn't be the same without a doggy around.