Short Update

Hi all. Just a short update (or so I say, we'll see how that turns out once I start typing). I haven't posted an update in a while, just writing about what's on my mind.

First the biggest concern currently of course is the pulmonary embolism (PE) so I'll talk on that to begin. My INR was within range for a little while. Well last week it was 3.9! Yikes! Therapeutic is within 2-3 but my dr wants me 2-2.5. The higher it gets the more likely you are to bleed with the biggest concern being internal bleeding you can't see including in your brain. Scary. So they adjusted my dose, again. This week it was 1.5! Uggh! That's too low. Anything too low means you really aren't safe in regards to the clot. So my dose is adjusted again with another check next week. I actually wish they would check me more frequently since my INR is all over the place lately. It doesn't make me feel very safe, but at the same time I'm trying not to worry much and leave it up to God.

Second of recent concern has been my heart. The EKG was abnormal so there was definite talk of a heart problem. Well my 24 hour holter monitor results and echocardiogram results were both normal! Thank God the echo was normal, I would hope nothing could be "seen" wrong with my heart. But the 24 hour holter- I didn't experience any palpitations or irregular beats in those 24 hours! So I was guessing that one would be normal too. Of course, isn't that how it always works out. The next day my heart went NUTS. So they didn't catch it, which is both good and bad. I'll be seeing a cardiologist in a few weeks and should know more after that. It would be wonderful if there was nothing seriously wrong, but at the same time if there is something wrong I really hope they can catch it and provide some answers.

Third, my myasthenia gravis (MG). Well over the weekend I got pretty exhausted. I try to plan things out so I have no more than 2 days of "doing things" in a row... doing things means anything from doctor appointments to a trip to the store. Well I had a doctor appointment Friday, visiting with my family Saturday, the MG group Sunday... Sunday should have been my rest day but I really wanted to go to the group, it only happens once every 3 months and its where I get to connect with others who can relate. I was feeling it on Sunday. Monday morning I was supposed to go to breakfast with my family. I knew it wasn't a good idea for me from the moment I woke up but I really wanted to see my aunt and uncle again... so I got ready, didn't even shower that morning in order to conserve my energy... but I was wiped just doing that. Still I was sitting in the kitchen trying to tell myself I can do this even though I knew I shouldn't. I didn't want to back out. But I decided to make the smart move rather than the preferred move and I listened to my body and stayed back while everyone else went. My body definitely needed that rest. It sounds like no big deal going to breakfast, but I was having huge sensory overload issues that morning and thus every little sight, sound, movement drained the energy from me. The worst thing I could do is push it and land back in the ER because I go into crisis. So I took a few days to rest and I'm feeling about my "new normal" now which is do a little something, rest, do a little something rest, and wheel chair anything that isn't a short walk.

I'm still waiting on my blood test results from the hematologist. They tested to see if I have any genetic blood clotting disorders, in which I'd most likely be on blood thinners all my life. Well the doctor said it should take about a week and she will call with results. Well she didn't so at about 10 days I emailed her, today 2 days later still no response so I followed up with a call and left a voice message, no call back. I'm getting a little annoyed. I liked her, I liked the hospital, but I don't understand why they won't tell me my results or even respond to me. Why did she give me her business card if she isn't going to take emails or phone calls? I just hope she responds at some point.

Tomorrow I have a pulmonologist appointment at that same hospital. I plan to ask him if he's able to print off the results for me... maybe that will work. My neurologist wanted me to go back to the pulmonologist to do all the breathing tests again to determine how much of my breathing trouble/shortness of breath is due to MG or due to PE. She also would like me to get a bipap machine- its a machine that helps you breathe overnight- it's like cpap. But my levels were literally right above the cut off point for insurance to cover it. That was on a "good" day though so perhaps now I would be under that cutoff line. We shall see. I'm just excited about eating at that little cafe' place inside the hospital afterwards ha ha!

Well I'm tired so I'm going to end it there. I have plenty of topics on my mind to write about but hopefully I'll remember them and share them on another day. Until then, enjoy the holiday weekend.

ps. I think this is about the most boring post I've written thus far. I think the exhaustion has reached my brain. :)