Alive and Working on the Kicking Part.

I’m back.

Sorry to worry you. If I’d had the ability I would have given an update, but things were bad and I was unconscious.

I’m writing now (I finally have a computer and internet access!) from a physical rehabilitation facility. The last three months I’ve been residing at the Hospital of the University of Pennsylvania. Between my last post and this one, well insanity is one apt way of describing it.

July 4th, while most of the nation was enjoying barbecues and fireworks, I went into complete respiratory failure, was intubated, and put on a vent. I don’t remember that day, thank god, or any day for the remainder of the month of July, so I’ll tell you what my wonderful family and friends, who stayed by my side night and day, have told me.

After being intubated the first time, I was extubated for two days before having to be reintubated. In addition to respiratory failure, I had kidney failure and came perilously close to heart failure. My body swelled up with edema so badly that my eyelids could not close over my swollen eyes. I was running high fevers nearly everyday, but the doctors could not find any source of infection. Even though they couldn’t find a cause for infection, my white counts were elevated and I was treated with tons of antibiotics and antifungals, including Vancomycin, which is supposed to kill pretty much anything. My lung collapsed at one point due to a pneumothorax and a chest tube was inserted to try to relieve the pressure. I had a jejunal tube inserted to allow for the administration of tube feedings directly into my small intestine and at the same time they inserted a G tube to drain the contents of my stomach continuously and performed a tracheotomy. There were more than a few times that the doctors just didn’t know what more to do for me. They didn’t think I was going to make it several times, so much so that they told my parents to say their goodbyes and to have my family come say theirs. BF says that he and my mother were actually talking about funeral arrangements at one point.

But through what was even referred to by the doctors as a miracle, I pulled through. As scary as it was for all of the people who care about me, I feel like the lucky one. I was thoroughly sedated and paralyzed (they said that the levels of drugs that they had to use to keep me unconscious was enough to kill most people). I don’t remember a thing; I woke up after being extubated thinking that it was still early July and was blown away to learn that it was early August.

Extubation wasn’t the end of my fight though. Once conscious I experienced shock and adrenal insufficiency syndrome, brought on by the discontinuation of the bolus doses of prednisone that I had been receiving while intubated. I was also still on the ventilator and had to be weaned off of that, but I’m happy to say that my oxygen requirements have dropped from needing total support to only requiring two liters of O2 by nasal cannula.

Once the shock and adrenal insufficiency resolved I was left with one major problem: the paralytic agents that they had to use to keep me in sync with the ventilator left me with severe neuropathy and muscle weakness. I couldn’t move below my neck more than a twitch of my hand. Throughout the last month and a half I have regained control over most of my body. It started at the top and has worked its way down so that now the only thing I can’t do is move my feet, and even that is getting a little better everyday.

By the end of August I was well enough to leave the ICU and return to one of the pulmonary floors in the hospital. You see the initiating cause of all of these symptoms and syndromes seems to be that I was aspirating stomach acid, which caused aspiration pneumonia. Both lungs were almost completely occluded in the xrays. Apparently the pneumonia just caused a cascade of problems, activating an immune response in my screwed up immune system and affecting a host of organ systems. So only naturally I ended up on the pulmonary floor especially since the entire point of me staying in the hospital at that point was to try to decrease my oxygen needs and get me off of the trach. That happened pretty quickly, but just as I thought I was ready to go to rehab my body threw me another curve ball: methemoglobinemia. Methemoglobinemia is an extremely rare side effect of an antibiotic called dapsone that I was taking to prevent me from developing PCP pneumonia. Methemoglobin is a kind of hemoglobin that does not carry oxygen and high levels of it can cause all sorts of lack-of-oxygen problems; mine was that it increased my oxygen needs three-fold overnight. It was a set back and few days of testing before the arterial blood gas was drawn and the docs figured out what the problem was. It was another few days, after the discontinuation of the offending antibiotic before my O2 saturation came back up to normal. Then of course they wanted to watch me for a few more days before talking about leaving for rehab. By this point I was jut about crawling out of my skin, aching to get out of there.

When I finally got the okay for my doctor to move on to rehab I came upon yet another hurtle; my health insurance company decided that I wasn’t sick enough to go to an acute rehab facility and wanted me to go to a nursing home instead. Now my problems with that were many. First and foremost, at a nursing home I would get about a third as much time each day doing rehab than in an acute care facility and, damn it, I couldn’t stand the idea of stretching out my rehabilitation for any longer than absolutely necessary. Second, I’m only twenty-five. I would be, for all intents and purposes, alone in a nursing home where most of the residents have at least forty years on me. The doctors at HUP agreed; their biggest concern being my often-sudden decline in health and the fact that I get tachycardic and my oxygen saturation tends to drop pretty significantly when I do any physical therapy (physical anything really). So we appealed the decision from all sides. BF filed a personal appeal and the doctors filed a separate appeal and after a rollercoaster of emotional buildups and letdowns, we finally won the appeal on Friday and I moved into my new digs Saturday afternoon.

I’ve already started PT and it’s going great. I still can’t use my feet well, but I’ve learned to transfer in and out of a wheelchair, I can do all of the personal grooming and dressing stuff again, and I’m getting pretty good at walking with the walker with minimal support from the therapist. Not to mention that I can type and read again. That was really the worst; my fine motor skills were so bad that I couldn’t change the TV channel myself or turn the pages of a book, so I spent my time watching one TV station with only mealtimes and visits from the fam to break up the monotony.

Now, I’m busy, busy, busy. They make us get up and dressed and into the dining room for breakfast by 8:30, I have physical therapy at 11:00, followed by lunch in the dining room at noon, then I have occupational therapy at 2:00, followed immediately by another round of PT at 3:00, and the day ends with dinner at 5:30 back in the dining room. I’m getting pretty good with the wheelchair and that’s where I spent all of my down time between activities (intead or sitting in bed like I had been). I was pleasantly surprised today when I realized that I had been out of bed all day for the first time in three months.

So that’s my story in the smallest nutshell I could realistically fit it in. I’m still learning what happened in July through the stories that my family is feeding me bit by bit. While I’m really glad I don’t remember anything, it breaks my heart that I had to put them through the emotional rollercoaster of not knowing whether I’d live or die from one day to the next, facing the possibility that I would end up a vegetable or permanently paralyzed, and just the overwhelming stress that they must’ve felt at being unable to do anything to make me better and not really knowing why I got so sick to begin with.

Well, I’d better get some sleep; they’ll be waking me up in seven hours and I have another tough (but rewarding) day ahead of me tomorrow. I have my laptop now and wireless access (my room at HUP was a dead zone) so I’m really back and I can return to writing more frequently. I’ll certainly be sure to keep everyone apprised of my progress and I’m sure I’ll elaborate on the goings on of the last three months in an upcoming post. I definitely still have a lot to think about and come to grips with and as my blog is my little slice of therapy, you all get to hear whatever it is that comes out of this insanity.

Thanks for the concern and I’m sorry for the worry that my sudden silence must have caused for some people.


1 comment:

  1. Wow, Rachel! I am completely shocked at what you've written. However, I am SOOOOOO glad that you are doing well enough to type that out! I can't believe what you went through. I'm so sorry you had to go through all that. I hope you continue to get better and stronger every day, so you can go back home soon!!!