PE update

It seems like I got a little worse before hopefully getting better. Yesterday was a tough day. Oxygen was dropping a lot. Walking to and from the bathroom it dropped to 79... extremely scary. For anyone super healthy and therefore doesn't know too much about vitals and whatnot... goal is 100 for oxygen but for my age it really shouldn't be less than 98. Under 95 is concerning. Under 90 is very dangerous. So I kept telling them this was happening and yet they want me to walk so how am I supposed to do that? One doctor or nurse would basically say I'm making that up and it can't be that low, another would say they would order an oxygen tank to walk with, another said its ok just walk, another said don't walk at all. See the lack of communication at this place and thus the lack of confidence I have in my care here? I kept pushing for an oxygen tank so I could walk (my oxygen is connected to the wall) and it took an entire day to get it because no one was placing the order. The red tape here is also insane.

Then my heart rate. Still pretty scary high but seems like the average rate is slowly going down a bit. Again for those that don't know heart rate for my age and such should be around the 60s at rest, low hundreds when exercising. Well its constantly around the 90s going up to 100s and then upon "exertion" which I put in quotes because my "exertion" is walking a few feet to the bathroom it goes to like 150, past what my exercise level should even be. Again, its a PE thing, but it's scary. Heart palps all the time aren't fun either.

I've started getting more pains... here and there all in my chest. The worst is that blockage feeling though. When you feel like someone placed a baseball in your chest and no air will flow to your lungs, it's not a comforting thing. You don't ever want to experience it, I hope you never do.

As for the care here, myself and my parents have continued talking to the patient-something department people consistantly, yet still it seemed like nothing was getting done. The problem is one doctor says one thing, another says another, no one charts and then nurses do what they want. There is no communication here. And a lack of care feeling from just about everyone. Yesterday I decided if it doesn't improve over the weekend and I'm still here during the week I'm going to be looking to transfer. I felt as if my life really is in jeopardy as each wrong move, lack of attention to patient adds up. The problem to begin with was this is the hospital with the best robotic surgeon, and there are not many of them to begin with- especially experienced in thymectomy which they must be. Then also was needed at the same hospital a neuro experienced in MG. That pretty much left this as the best and almost only option. So here I am. But as we get farther away from surgery, and especially after my stiches get removed the end of this coming week, then the surgery part leaves. Then I just need a hospital experienced in MG which is very hard to find but it just so happens the one across the street is and very top rated.

So then last night after midnight (because I can't get any sleep here) I remembered its my grandma's birthday today. I asked her to please help, please make things better for me. This morning in walks my nurse... same name as my grandmas! And she was so nice to start! I was like, thank you Nani! (what I called my grandma). It's still been a little rough but things seem to be a little better today. I got to talk with the doctor on call who has been better than any of the others I've had for this. She explained everything in a way that was very clear to me. If what she says actually happens, I'll be ok with that. If not (which is what the other doctors say) then I won't. The whole medication is still the biggest problem. When you're dealing with blood thinners, there is not room for error. When you're dealing with PE, there is NOT room for error! I understand adjustments, finding the right rate/dose etc. but not doing the wrong thing because of lack of protocol or care.

So as of now we are continuing the antibiotics and also starting the second blood thinner and pulling the first blood thinner. This all goes against what I was originally told and comfortable with but after talking with the doctor today I just pray it will be ok. When my vitals get stable, rest and while walking, and my blood thinner levels are consistently in therapeutic range then I can get released to continue treatment at home with frequent visits to clinic 3-6 months or life, hopefully not life.

In the mean time, I've been doing a lot. I've been playing basketball... throwing kleenex into the garbage can. I've been teaching the nurses about the equipment/machines I'm using... scary when the patient knows more than they do. I've been keeping the baby wipe companies in business... can't shower with a 24/7 IV infusion. I've even started interior decorating... not too sure they're fond of that one.

But really I'm trying not to think much about this anymore. If God were to pull you, or me, from this world at any moment... I don't know about you but I want to be able to have a clean slate, feel good, be happy- not be upset, depressed, angry, bitter, selfish or any negative qualities. So I'm just doing what I can, how I can, when I can in the way I can. And one thing I can do is blog. I've received multiple messages from other MG patients that they are so happy I shared this because they learned so much or are passing it on to their family/friends to teach them because my site is easily understood. That makes me so happy. I originally said if I can touch one person from this, teach one person or help one person, I will have felt like I did something good. Well, 4000 views, wow. Thank you SO much everyone. Please keep promoting awareness. I know PE is not directly related to MG but it is a known possible risk/complication after thymectomy. If I have to go through it all to help others, then so be it. If I'm still going through it it means I'm strong enough to handle it. (please remind me of that when I say I can't do this anymore)

Smile! :) No really, smile... watch how it can change your day.