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 4^th, 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.

G’night!

Like a Rubber Ball.

So I started this post last night before I went to sleep and when I came back to it things had changed so much that I had to throw out the old one and start again. I won't give you a play-by-play of this week, partly because I've been running fevers and there are parts that are a bit blurred, partly because I've been on an intravenous dilauded pump that gives me .4mg every time I hit the button, and mostly because it will bore you. So let me tell you where we are today.

The infection in my lower abdomen is gone. My belly is still a little sore and a little fatter than I remember it being, but otherwise, back to normal. So that's alright. Except the fevers haven't gone away completely and they think that I have pneumonia.

In the last 24 hours, my condition has gone from scary and uncertain to stable and steadily improving. Last night I was on 100% oxygen by non-rebreather mask and my arterial blood gas readings were still showing a drop in the oxygen in my blood. They were getting constantly closer to having to intubate me and put me in a ventilator. Instead they tried a PH drug called Flolan or epoprostenol. When inhaled, it works to dilate the blood vessels that it can get to, so with the pneumonia blocking a portion of my lung, this drug is working to maximize the potential of the remainder of my lung tissue. Usually this this drug is given by way of a constant subcutaneous infusion pump, but they wanted a concentrated rather than systemic effect, so I've got an awful, heavy, awkward mask on that I might be able to take off for more than ten seconds sometime tomorrow. But it's working! I'm down to only 40% oxygen and my blood gasses are looking great. I have a PICC line and a direct arterial line so that they can take blood gasses frequently without needing to keep stabbing me. It's nice being stick-free. By Sunday my veins had become so inflamed that they weren't able to get a line in one at all and they tried everywhere; I had an intra-juggular IV for about ten minutes before it just failed

They're not actually sure if this is a pneumonia. It could be also be inflammation of my lung tissues. There are several big problems standing in the way of us figuring out the answer to that question. The first is that they would need to do a bronchoscopy. I'm not breathing well enough for bronchoscopy without a ventilator, which can be very dangerous and difficult to get off of, so that's not an option.

The second complication is that they've discovered that the small a hole in my heart that's been there my whole life has now started shunting deoxygenated blood from my right atrium to mix with oxygenated blood in the left, lowering the oxygen concentration for the entire combined volume of blood. This was apparently caused by the pressure in my heart becoming high enough that it further opened the small PFO that was there, and formed the shunt. The PFO can't be fixed now though. If they repaired the damage and blocked the hole, the blood would go back into my lungs at a high enough pressure to do some real damage.

So since they can't truly assess what the real problem is and because they can't repair the damage to my heart yet they're attacking it from three sides: the Flolan to open up my airways and decrease the pressure of the shunt, intravenous antibiotics for the possible pneumonia, and prednisone for the inflammation. I'm also on IV heparin to maintain anticoagulation, IV dilauded, self-administered up to once every ten minutes, for pain, IV zofran for nausea, and all of my regular pills.

So that's it for now, I'm going to go take a nap The doctor just informed me that because I'm down to only needing 40% oxygen they're going to start weaning me off of the Flolan and I may be done with this damn mask sooner than we'd thought. Yay!

quick update

So today's deal -comparing the CT from Tuesday to yesterday's - shows that the pneumonia is a little bigger and there's more fluid in my lungs. My ABG isn't going up with as much oxygen as they can throw at me, so they think there's a shunt. And today I'm having an echo with a bubble test to determine whether my formerly nobigproblem PFO could be the big problem. The possibility that I'll need to be intubated is still very real. No fevers though! Alright, I'm gonna try to sleep some more. Just wanted to give you an update.

surreal

I'm getting the feeling that describing a fever is a bit like describing an acid trip. Everyone would be bored. So I won't, but let me just say Whoa! My fever spiked again tonight a bit before midnight, went well above 102, and just broke a half an hour ago. It was like coming back from a different planet to one where I'm suddenly cold and drenched in sweat and sprouting thirty different wires.

I'm going to try to sleep now, get some rest before this place starts buzzin'. I'll try to write more later.

Joy of joys

I have a fever of 102.2F, my belly is tight and bloated, it aches, and it's getting more difficult to breathe.

This sucks! We played it super-safe to avoid ovarian hyperstimulation ayndrome, but apparently not safe enough.

They want me to go to HUP to be evaluated, but of course it's rush hour and getting there would take an hour and a half or more. In addition to that, there's no way I trust myself to drive right now, the fever's got me all shaky, I can't take a full breath, and sitting upright hurts. So I'm waiting for BF to come home from work and give me a ride to my usual hospital back near where we lived before.

And I can't find my godforsaken pulse oximeter, so I can't test the oxygen in my blood. My lips are feeling rather tingly though, and that's never a good sign.

This really, really, really fucking sucks.

Bloaty

Well, I feel like crap.  A whole different kind of crap today than yesterday or last week.  My belly is huge.  It feels like it's been inflated like a balloon.  They warned me that this could happen.  Apparently after they empty out the ovarian follicles, they fill back up with fluid and blood.  There's also a fair amount of cramping involved.  Sucks.  

Anyway, I got a call this afternoon and six of the sixteen embryos were successfully fertilized and frozen today.  One more did get fertilized, but two sperm got in and that's just twenty-three too many chromosomes for a viable little embryo to have, so it was a no-go.  

I'm going in on Monday to talk to Dr. G. about removing an ovary for cryopreservation.  And that's it.  No more fertility drugs.  No more waiting.  Until the transplant is over, I don't need to spend any more time worrying about procreation.  Thank freaking god.  I'm sick of it.  It's going to be so nice to stop worrying about this and start worrying about...shit...chemo.  

Well it never stops, right?

Gooooaaallll!

I'm in no small amount of pain after the egg retrieval this morning, so I'll be brief.

It was more successful than we'd even dared to hope. They retrieved sixteen eggs, meaning we got an egg from nearly every follicle they measured on Monday. Amazing, really. One of the top retrievals that they've ever had at this clinic.

Tomorrow, I'll know how many are fertilized and will be frozen. And now, my sweet boyfriend is back with my chicken nuggets and vanilla milkshake. If only Chik-fil-a offered an "add a shot of morphine" option.

Forty Sticks in Fifteen Days...

But I'm Done!

Not really.  I get to take Lovenox twice more before the retrieval Wednesday morning and BF gets to give me my Novarel trigger in an hour and a half, but that's pretty damn close to done.  I've never been so happy to be through with something in my whole life.  Those things didn't hurt Day One, but Jesus Christ!  By last night I was hesitating to pierce my skin because they hurt so bad.  Also, every single little puncture wound bleeds for what feels like forever now because of the injectable anticoagulant.  I made the mistake of wearing a light yellow shirt on Saturday and ended up scrubbing a dozen little blood stains (and a couple big ones) off of it with a toothbrush in the bathroom sink (shirt is now perfect and stain removal is strangely gratifying).   

Okay, that's it for now.  Just had to show someone my poor bruised belly.  Not as bad as it could've been judging by that first stick, but generally aggravating.  I wish that was the worst of it, but I couldn't work up the nerve to ask the ultrasound tech for a picture of my humongous ovaries for my blog.  

Nothing As It Seems

I just got back from yet another trip downtown for yet another ultrasound.   My ovaries are so freakin' huge.  They hurt now.  It sucks. 

The good news is that I've now got seven follicles on the right side and six on the left, Thirteen! Much better odds.  Even my nurse expressed how pleased she was with the increase in number.  And my uterus is looking great - a perfect state for transferring embryos.  If only that's what we were doing.  But it bodes well for a successful transfer once we're ready for that, if we're ever ready for that.  Have I mentioned how much a really really really want to get pregnant, like myself, without having to use a surrogate? Well, I do.  And this whole process has only increased that desire.  Now, I just have to talk BF into having more than one kid, but we'll cross that bridge when we get to it.   

The crappy news? While the number has gone up, the size is still only creeping up and they're not ready for the retrieval that we had anticipated would happen on Sunday.  So now it becomes a day-to-day thing.  I have a 20mg syringe of Lupron sitting in my fridge waiting for the word to go ahead and trigger, but until that comes it's Gonal-F, ganirelix, Menopur, and Lovenox along with daily blood work and ultrasounds.  I forgot to mention the Menopur!  I got a call from my nurse yesterday afternoon, around two, telling me that I had to go back down to the office to pick up a new drug, Menopur, which will help to elevate my LH level and produce better quality eggs.  At the time I was at the local hospital waiting to get an x-ray on my foot to evaluate for a possible broken toe (I don't know what I did, but it hurts like hell and is nice and purple) after which we were going to an appointment for BF to be evaluated for eye surgery to correct his nearsightedness.  We had to rush to drive all the way back to University City and then back past our house to King of Prussia.  We did it, getting to the eye doctor's office just five minutes late for his four o'clock appointment.  

So that's my current insane situation.  I'm going to go try to take a nap before my math test this afternoon.  Then, we're going to see Eddie Vedder tonight!  I'm so excited, it's going to be lots of fun!  But now, I sleep.

...from the University of Pennsylvania Bookstore.

It's awesome that all of the college bookstores in Philly are run by B&N now. Certainly makes them more useful and the ability to have a vanilla latte while shopping for algebra books is rather pleasant.

I just had my third ultrasound - nine follicles on my left ovary, five on the right. Yay! The fellow who did the ultrasound said that she thinks it calls for another day of elevated stimulation and another ultrasound tomorrow morning and then I should be ready for either the Ovidrel or Lupron (up to Dr. G.) tomorrow night and egg retrieval Sunday. Very Exciting!

So I just thought I'd give a quick update while I'm sitting here. BF is at a VM Ware discussion group nearby that should let out in a few minutes. We got to drive down here together today; it was nice to have the company (sorry but LM is not a great conversationalist: if he's not tellingcme how to drive, he's either whispering to himself or ignoring me). Now we're going to go get some brunch and then go enjoy this overcast, humid, almost chilly, glorious summer day!

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