The update you've all been waiting for... haha. I've caused so much build up to this you're probably going to read it and be like "that's it?" But I got you in here didn't I? :) No, really, it's pretty sweet news... after the bitter part.
So last Friday I developed pain in my leg, around my calf. Well that pain kept persisting. Sunday I also had increased shortness of breath and my heart rate went up to 169 just while walking. Yikes. The highest I've seen it was 150ish. So, you know, that's a bit concerning. I talked to other PE patients and basically they all said get your butt to the ER, better safe than sorry. I struggled with what to do because 1. it was Father's Day and I did not want to do that to my dad, and 2. even though I wanted it to end up being nothing I feared if I went to the ER and it was nothing I'd get written off as anxiety once again. So I stuck it out and tried to completely ignore the symptoms, telling myself if it is still bad Monday maybe I'll check in with the doctor.
Sunday, I also started my new prescription vitamin D- 50,000 IU- huge dosage. I've been taking over the counter 1,000 IU a day but that wasn't working and my level is way too low my doctor said. So I took it and told myself this is going to work and I'll be feeling better in no time (since vitamin D deficiency has been known to actually cause a variety of symptoms). Well in the middle of the night I woke up multiple times in a ton of pain in my abdomen and feeling very very nauseated, forcing myself not to throw up and (excuse this if it's too direct but we all do it) having to urinate way more often that normal. When I went in the bathroom I looked in the mirror and was as pale as a ghost! I almost woke my parents up then but I again tried to ignore it and went back to sleep... until I woke up again and again. I just felt so sick. I asked if anyone else felt sick wondering if it could be from food we ate, but no one was sick and I've had food poisoning before which wasn't the same as this.. I think I was still trying to convince myself all was fine.
So Monday morning the persisting leg pain/shortness of breath/increased heart rate partnered with what seemed to be a reaction to the vitamin D convinced me to get this checked out. I was back and forth about urgent care or ER. One was one way and one was the other so my mom said decide. I think I landed on urgent care but when my mom pulled out of the driveway I said to myself "God, if you want me to go to the ER instead, make it known." Well when we got to the end of the block they had the road completely torn up and we had to reverse all the way back down the street. I took that as my sign and said let's go to the ER.
After getting a room, it was initially one of the most efficient visits to the ER I've ever had. A doctor was in in no time, I didn't even realize they took my blood while talking to the dr, and next thing I knew I was hooked up to a bunch of monitors. You would have thought I told them I was having a heart attack for how quick they responded... I guess PE is nothing to mess with. So they wanted to do what I assumed they would want to do... scan my leg and scan my chest. I really didn't want another chest scan because of the radiation but how could I say no when I'm having the symptoms. So that's what they did. The doctor said if I threw another clot OR my INR was too low they would have to admit me and start the heparin drip. Oh God please no.
I'll let you know the bad news first. I was having a reaction to the vitamin D, which of course happens to this slim number of people that I always happen to land within. My calcium went up which this vitamin D is known to possibly do but what they were more concerned about (sorry again) was how frequently I was using the bathroom and how ridiculously clear it was. The doctor started talking about this could lead to renal failure or something like that. Yikes. Well long story short, I'm told to never take that again (duh). Hoping that my symptoms subside soon because they are still ongoing. After this gets out of my system, we'll try slightly upping my over the counter vitamin D dosage... hopefully something can get figured out to get my vitamin D up without causing me more problems.
Now the good news is my INR was 2.5... pretty much perfect! The leg ultrasound showed no clots and the chest scan showed no clots. Read that again to understand why this was AWESOME news... The chest scan showed NO clots!!!!! Now, there is chance that they didn't show up due to whatever error or whatnot, but assuming everything is correct, then my PE blood clots have dissolved!!! Exactly 2 months out from the PE diagnosis. Awesome awesome awesome awesome! They initially told me it would probably take a couple months for my body to dissolve the clots but for some reason I was still shocked that it actually happened. I still have to be on the warfarin for the full 6 months or however long they finally decide to prevent reclots but this eases my mind a bit knowing that if my INR isn't quite high enough I don't have to be quite as concerned... just have to make sure it doesn't get too high because the bleed risk is still there.
Well the question still stands then what is causing my leg pain that is still 5 days later happening and why am I still getting increased shortness of breath and fast heart rate... but that's not anything for an ER to deal with. My cardiologist appointment should tell me more and it was supposed to be yesterday but the doctor was sick so it had to be rescheduled for July. As far as the leg, I guess I'm just dealing with it for now and hopefully it just goes away on it's own.
And so, other than of course still receiving treatment for PE... my only major current problem (knock on wood and praise God) is MG! That brings me to a little update in that regard. I've had many people tell me I'm looking good, looks like I'm doing better or hope that I'm better, hope that I get well soon... so on and so forth. Here's the thing... I'm not any better MG wise. The reason people might thing that is because what is better about me is my positive attitude. So it might seem like I'm better when in fact I'm the same but responding better. Make sense? Furthermore, there is no getting well soon unfortunately. Yes we are hoping remission or at least improvement is in my future, but again again and again there is no guarantee nor is it very likely to definitely happen any time soon. It would help me tremendously if everyone came to acceptance on this that this is my current life. If I can make the best of it I want everyone else to make the best of it too. Because really when all I keep hearing is "when you get better" or whatnot, that makes me feel like everyone has my life on hold until I am better (which may never happen and furthermore I could get worse). So please accept that it is what it is and my life is not on hold. I need to live in the moment I am in with the body I have now. Take me or leave me, but it's me and MG and we come as a pair.
Lastly, I want to reiterate... please value what you have. Things you don't even think twice about, us MG patients can't always do... we can't sit out in the sun/heat, we can't go for a run, we can't shop til we drop because we'll drop before we get into the shop, we can't take a vacation and REALLY get away because we can never leave our biggest burden which is our body. But what we can do is so much that we never previously thought twice about. Just please value what you have, whatever it is. And value WHO you have. Take in the moment and appreciate it for what it is. There is something good to pull from everything. Everything. It just might take a little bit of effort to find it. But when you find it, don't let go. Stay positive. Hold on to the hope. Smile.
Bitter turned sweet.
Thanks for reading :)
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