Spring!

This was, as usual, a pretty nasty winter in Philadelphia. Wind chills that make you feel like your face is going to tear off, a couple feet of snow that just didn't want to melt, like I said, typical. But it is Spring At Last! It's sunny and green and just so encouraging. I've been sprouting vegetable seeds for by garden. Bf built the garden for me this week. We're doing a raised garden so that Bf doesn't have to dig up all that space for a garden that's really my thing, not his. He's always available to help me out when I need him to, but I do try to make things simple and less back-breaking-labor intense, if I can. In a couple weeks I'll get to plant my seedlings. I'm growing peas, lima beans, green beans, broccoli, spinach, shallots, peppers, and cucumbers. It's my first attempt at having a vegetable garden in like fifteen years, but my dad and I did pretty well back then.

We're also finishing up the renovation of our house and unpacking all of the boxes that've been hanging around waiting for the renovation to be finished. Yesterday, we went and picked up the rug we'd picked out for the living room. It's cool. It's an oval with lines on it, kinda like a watermelon, but in shades of brown instead of green. And any day now we get our new sofa and love seat in Ivy (which they don't have a picture of). I'm so excited; this is the first time BF and I have bought real, good quality furniture. Not that the IKEA stuff is bad quality, it just always ends up falling short of our expectations.

As far as my health goes...well...it's a mixed bag. I've been getting chemo once a month, which leaves me really exhausted for the next week or so, but the third and fourth weeks of the month I feel pretty great. The big problem for me right now is my G tube. It keeps getting infected and that hurts like hell. It's really just a giant pain in the ass; I don't know how I'm supposed to live with this thing. If I drink too much it comes out of the hole, same with food, smelling like vomit. So I'm always cleaning it, changing the dressing, changing my shirt; it's ridiculous and I hate it.

In other, better news, we just had the little man's fifth birthday party! He's getting so big, it'ss scary how fast he's gone from being a baby to really being a little boy. We shop for clothes now that are fitted neither for a certain number of months or for toddlers. He starts kindergarten in September. He's learning like a sponge. He reads words, adds and subtracts, it's just wild to be a part of. I also found out that I went to high school with his teacher, which was an odd but good revelation; I always liked her, she was a really good person then and it doesn't seem like anything's changed.

Alright, that's all for now. I'll check back in soon.

I Keep Forgetting!

I keep forgetting to mention that I''ve started a charity!

It's called Knit for the Needy and it's a group of people using loom knitting, or whatever other knit-craft they enjoy, to create hats for the homeless in the Philadelphia area. This way people can give their free-time, time on the train, little bits of stolen time here and there, and work from they're home , office, or wherever else they please.

I don't have many volunteers yet, but I'm hoping to get plenty between now and the Fall, so that we can have plenty of hats by the time next winter rolls around.

The charity website is www.knitfortheneedy.org and I'd love to see anyone who's interested check it out and perhaps volunteer themselves. Loom knitting hats is a very easy process that usually takes between five and six hours per hat, so you can really see the results of your work immediately!

I know, I Know...

I know. I said that there was another post coming, like soon, after that last purge of an entry. Things have just been, well I guess very productive and a little exciting, but mostly boring.

After I left the hospital I went to my most-excellent-Mother’s house to rehab, and there was plenty of rehab. I couldn’t walk or stand. My legs were like Jell-o. But with the help of my physical therapist and my own strength-of-will I got up and walking with a walker in about a month. By the middle of February I had already been walking around without the walker for a while. At the same time we were still controlling (and are still controlling) my GI issues. I have to suction my stomach through a gastronomy tube that goes through my abdomen and at night I get feedings through a jejunal tube that bypasses my stomach and feeds me directly into my small intestine. Lovely, eh?

Anyway, by the end of February I felt well enough to get out. In fact I felt that it was imperative that I leave the state and do something fun. After all, after six months in the hospital “cabin fever” doesn’t ever begin to describe it. So we booked two tickets to Vegas and flew out there. The trouble is, we’re not really the “Vegas types”; we don’t really gamble, go to dance clubs, drink, or pay highly inflated rates to fly over the Grand Canyon or the Strip, but we still thought that there’d beplenty to keep us busy. And there was a lot, just not enough. We had a great dinner at a nice restaurant, saw two Circue du Solieil shows. But we ended up taking a five hour drive to the Grand Canyon only to find that there was a very localized snowstorm that had whited out all of the “scenic vistas” we’d been waiting so long to see. And other than that and a couple little side trips, we spent a lot of time sitting in our hotel room watching Olympic curling and fighting over whether or not it was my fault the vacation was going so badly. But, great vacation or not, we got away and it actually did wonders for our relationship. It was really hard for BF to deal with me being hospitalized for six months and essentially being hospitalized for another two months at my Mother’s house.

Once we got home from Vegas and I moved back home with BF, things got a lot better between us. I’ve been able to do a lot more to help around the house, and BF is more understanding about the things that I can’t do. And not to get too intimate, but things have been a lot better in that department as well.

So now we’re just living life as best we can. The house is still not-quite-renovated, the laundry never ends, and half the boxes are still packed from the move, but we’ve got our own house, I’m building a vegetable garden in the side yard, BF’s building a deck in the back, the little guy’s about to turn five and he’s getting a great big play set with swings and a slide for the back yard. Things are good. We’re happy. I’m doing a round of chemo a month; I’ve had three so far and they’re not so bad. Oh and before I forget, my step-mom’s pregnant again, so I’ll be getting a new baby brother in six months. It’s pretty exciting.

Well, I guess that’s it for now. I’ll write again. Can’t promise when, but hopefully soon! Thanks for bothering to read!

My Return to Real Life

Sorry it's been so long. Things just got so depressing that I couldn't stand writing another post that said "So, I'm still in the hospital...", so I just decided not to say anything.

Real quick, here's the rundown of the last seven months. I went to the ER with abdominal pain, fever, and unexplained shortness of breath on June 19th. I was admitted to The Hospital of the University of Pennsylvania where my aspiration pneumonia continued to worsen for another two weeks before my lungs failed and I was intubated. I was intubated for a month while the doctors tried to keep me on this side of deaths door. I had acute respiratory distress syndrome and then as that was clearing up I developed adrenal insufficiency syndrome, which was another difficult fight. After I was transferred out of the ICU, I developed methhemoglobinemia as a side effect of one of the drugs I was on and it kept me there even longer.

I was transferred to a phical rehab because I had muscle wasting and neuropathy in my lower limbs. For two weeks I worked hard to get walking again, but then had another episode of aspiration pneumonia that landed me in Einstein's ICU for two weeks and then I was moved to the ICU at Thomas Jefferson University. This was the beginning of October. I spent October and November getting new aspiration pneumonias and recovering from them. In December they finally decided to do something more permanent to make me better. They surgically placed a combination G/J tube into my stomach and jejunum. The G tube drains all of the acid and food out of my stomach so that I can't aspirate and the J tube delivers daily tube feedings lower down into my digestive tract so that I still get the nutrition I need. After recovering from the surgery for a few weeks I actually got to come home. December 18, I was released and came home to my mom's house. I've been working hard with a physical therapist that comes to the house two times a week and now I'm walking with a walker and can even climb the steps now, though it still wears me out pretty badly.

While recovering I started loom knitting hats and I've turned my interest in it into a charity, knitting hats for the homeless. You should check it out.

Knit for the Needy

Well that's life right now, hopefully I won't have to tell that story again anytime soon. I'll write again soon, I've got plenty to say, but for now I'm going to be off.

back

So I'm back in the hospital again. It's been two weeks as of today. I'm going a little crazy from being so isolated, but things have finally changed a bit, so this week hasn't been quite so boring.

I'm in here because since leaving HUP, the amount of inflammation in my lungs has gone up a lot and my oxygen needs were up to 100%. Up until now they have been giving me tons of steroids, but having little success in reducing my oxygen requirement.

As of yesterday they had reached a point where they felt that I needed to have an open lung biopsy to determine whether inflammation or infection was the culprit. Really to rule out infection and start cytoxan treatment or to pin point the unlikely infection. We needed to rule out infection because the cytoxan would wipe out my immune system and an infection could kill me.

Open lung biopsy is not a simple procedure. The technique that they use is video assisted, so it's simpler than the old technique that required a four inch incision between my ribs, but it still requires general anesthesia with intubation. They go in and take three or four thumbnail sized chunks of lung tissue then analyze them for a difinitive answer.

At that point, the plan was to start cytoxan and proceed with the full stem cell transplant. So big changes, fast.

Last night, however, I had a repeat CT scan and apparently the steroids have finally started working and the inflammation has been decreased by half since last week. So it looks as if we don't need a sample of the tissue to determine what the cause is because infection wouldn't respond like that.

So now I'm waiting again to talk to the pulmonologist and oncologist about what we do now. From conversations we had yesterday, my guess is that we'll just continue on with the cytoxan treatment and get this transplant moving, but who knows, they may have other ideas.

So that's it for now. I'd update more often if life was less boring or if I had a real WiFi connection from this room - I love my iPhone, just not for long correspondence. So I'll keep in touch as I know more.

Mobile Blogging from here.

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.