Pulmonary Embolism

I last wrote on Saturday. I was hoping to go home soon. Saturday I had nausea so they kept me. Sunday I had increased breathing trouble so they kept me. Both nights I needed to get back on oxygen. I kept saying I'm having more breathing trouble, I kept requesting imaging of my chest/lungs but they kept refusing. On Monday they sent me home. My breathing trouble was still happening. I couldn't sleep much and definitely not laying flat- not because of the surgery pain but because of the breathing.

Wednesday morning I awoke to absolutely horrible breathing trouble... the worst I've ever felt besides coming out of surgery. It was as if there was a blockage stopping my air from going all the way. I didn't know what to do and all that went through my head was I really don't want to put my parents through any more trips to the hospital. But I decided to email my doctor. Though my surgeon was the one most recently treating me, something told me not to email his team but instead to email my neurologist. If I thought it was a serious emergency I would have gone to the ER or at least called, but I thought most likely would be MG getting worse and I need more plasmapheresis or pain/breathing trouble from the surgery. My neurologist emailed right back telling me to go right to the ER, and better if I'm able to get to the one at the hospital I was at because they know my case. Off we went.

They took me in to the ER immediately and did an EKG- normal for anything that even involves chest pain. Then they took vitals and found I had a fever. Next I was put on a bed, tons of blood was drawn and a chest xray was taken. Before any of that even happened, I constantly insisted I get a chest and possibly even abdominal CT. I was not going to leave until they did that. Well the blood work was fairly normal but the chest xray showed abnormality they couldn't quite make out so they said they would do the chest CT. Thank God. Laying on the table getting injected with dye I thought it'll be normal and we'll move on to figuring out what else it could be, but in the back of my mind lied pulmonary embolism. Literally minutes after returning to my ER room, the doctor came in. When the doctor comes in quickly you know its bad news. She said "You have a PE." (pulmonary embolism) Without thinking, words spewed out of my mouth saying "Oh my God, I'm going to die."

Then doctor after doctor came in and all I could do was cry. Why? Why God? Why another thing? Why something so serious? When if ever will things turn around for me? At one point I did say to one of the doctors I don't want to fight anymore. I said I've been fighting for 3 years and it gets too hard and I don't want to fight. They said I have to keep fighting. I listened.

My PE has multiple blood clots in my lungs- not one, not two- many on both sides of both lungs. In addition to the PE I also have a lung infection and/or collapsed lung. This means 2 blood thinners for the PE, 2 antibiotics for the infection, and an antifungal to counteract/try to prevent recurrent thrush. Once again this hospital proved to be a joke. My ER nurse was really mean. To start the blood thinners they had to give me a shot in the stomach. The shot itself isn't too bad but the injection burns and hurts a whole lot. I was scared about it and she yelled at me and told me it's not funny anymore. I told her I'm not trying to be funny I'm scared. She basically said she doesn't care and she has 3 other patients. Oh really. Well that was the last string for me. I was already upset and couldn't take it anymore. I said if she didn't want to deal with patients being scared and in pain she shouldn't have become a nurse. I said of course she has 4 other patients, that's her job, and right now I am her patient and that is her job. Again if she didn't want to deal with any of this and wants to complain about 4 whole patients, don't become a nurse. By the time she gave me the shot I was terrified she was going to make it hurt on purpose. Oh it hurt... for a while. Then the nurse tried to put me on antibiotics that are on the no for MG list after the doctor said he was changing them to something else. So she decided she would do the other one. Even that one I said was not the one the doctor told me. She just continued to have attitude and not listen to the patient, as they all seem to do here. She was having lots of troubles hooking it up and just after it started in ran the doctor again saying that's not the right medication. Wow. I just kept saying "stop the iv stop the iv" until they did. Unbelievable. Finally they figured out which antibiotics to start me on and would start them in the morning. All that for nothing.

So I get readmitted and they then decide to switch me from the blood thinner shots to the blood thinner iv drip. I said that's fine but I already got the shot so shouldn't the iv drop start at my next due dose tomorrow. They again didn't care what I had to say and basically decided to double dose me. Doesn't sound smart when I bleed and bruise easily, which I discovered can happen concurrently with blood clots. I'm also on oxygen and hooked up to a monitor for heart rate and oxygen level. My heart rate has been ridiculous. No lower than low 70s and barely ever there. Mostly high 90s and 100 something all the way to 150. They said that's what PE does.

I'm still 3.5 weeks later, 3 admissions later, having issues with the nurses and my medications. They try to tell me I can't have my MG med, try to refuse me tylenol and give me something stronger that makes my MG worse. Last night all night the nurse fought me on it. I got no sleep, maybe 1 hour. I'm exhausted. Every time they say they'll get it straightened out and every time it happens again. I'm astonished. Today my parents and I talked to some people who have something to do with patient relations or advocacy or administration or something. Anyways we explained everything, nothing left to imagination. I think they were shocked to hear us be so blunt but thanked us saying otherwise they never know. We saw them talk with the nurse. I just hope this resolves something, but  I can't hold my breath... no literally, I can't that wouldn't be a good idea, haha.

So the plan right now is to continue to blood thinner drip and give me antibiotics and antifungal. I can't start the blood thinner pill til the antibiotics are out of my system because they interact. At some point they might switch me from the iv drip back to the shots because the shots can be done at home. Once the antibiotics are out of my system they will start the blood thinner pill and once that reaches a certain level they will discontinue the iv drip and/or shots. The point is the drip/shots work quickly but the pill doesn't. They want something quickly in my system until the pills kick in and then I can continue pills at home. I will have to be on the blood thinner pills 3-6 months and if that doesn't work, possibly for life. They said once my symptoms and vitals become stable they can send me home so I can do treatment at home rather than staying here. But I have to return anywhere from every couple days to every couple weeks to get everything checked because of all the risks involved with all of this.

I'm fairly stable right now all things considered, not stable enough to go home but stable. On oxygen my oxygen level is normal, my heart rate isn't stable but seems to be slightly decreasing with time/blood thinners, my breathing feels a little better, still hard. My chest pain is still there but not quite as bad. The biggest/best thing is my MG symptoms seem so much better!!! I can actually hold my leg up in the air (sounds weird but I couldn't do that before). I can walk a bit longer, last a bit longer. We don't know if its from the plasmapheresis or I'm a rare one that the thymectomy brings on improvement immediately rather than months to years later. Either way it is a very good thing I'm MG stable because of everything else going on. I still pray I'm going into permanent remission but even just improvement enough to get me through all this PE stuff I'll be grateful for.

I'm trying to remain positive, not worry or even think much about all this. But that doesn't mean its not scary. It doesn't mean I didn't initially totally freak. It doesn't mean I'm not sad. I have the right to all my emotions, but I try to let them come and go and remain level headed. I think I have an angel watching over me. Yesterday morning when I had such breathing trouble I thought I should contact my surgeon whos most recently overseeing me or my neuro. Something told me not to contact the surgeon, instead to contact the neuro. My neuro may have saved my life by insisting I immediately go to the ER. I have a feeling my surgeon would have said it was surgery related and let it pass... it wouldn't have passed though. And then when I was trying to figure out what to do the outside started pouring enormous size hail... it was absolutely insane! I thought how the heck would we drive in this. And my dad was out golfing. But because of the hail he came home, and shortly after the hail stopped. Everything cleared for us to drive to the ER. Then once there with the nurse almost putting me on the wrong meds but the machine acting up and thus my not receiving much med before the dr said stop. God certainly is watching over me in the midst of all this struggle.

I should probably try to sleep now. Hopefully I can and they only wake me up about 6 times instead of 100. Anyways, I want to add, right now more than ever (and yes I've said that before but it continues to add on)... right now more than ever I could use support... from family- all family, friends- all friends. I admit I am the type of person who really needs to hear/see that people care, and it GREATLY helps me. There are a lot of people I really miss, and I don't know if they even know or really even care. But if you are someone who's stopped talking to me, barely talks to me anymore or changed your relationship/communication pattern/interaction with me- you are probably one of the ones I miss. I pray every day for certain people to reenter my life, for relationships to be strengthened, renewed, reconciled, for love, for forgiveness, for peace. I pray that it happens soon and that it happens while it still can. Life is precious. Yours, mine, everyones. Peace be with you all. Always.