Early Morning Rant of a Heavily Medicated Person

So my right thigh has doubled in size.

 

I'm on this medication called Remodulin, and its one of my main lifelines. The purpose of the drug is to enable easier breathing and I can definitely tell its working fantastically. But its a subcutaneous medication (which means, basically, that I have to have it continuously) and it has a super short half life. If I am disconnected from it for longer than about two and a half hours, I have to check into the hospital to restart it; the drug is too dangerous and painful to just pick up where I left off. A dangerous amount of Remodulin is being pumped into me at a ginormous rate of 0.04 mL an hour. It works great, but I'm not gonna lie, its painful. Everything in my body is screaming NO except for my lungs. Breathing wins over pain, but then awake wins over sleeping. At least I can have a snack since I'm up.

 

Okay, back with my snack. Nom nom nom.

 

You know, it takes a while for the pain from this drug to subside from excruciating to tolerable. The docs and I try to keep one port active for as long as possible, and this one has lasted since January. I can't complain, that was a good run. But the adhesive wore out, and last week it just went kaputz. So I went over my options for the next site and remembered in the stomach was bad. Every time I would breathe or move it hurts. So I thought, I'll try the thigh. That way, I can walk it off, kind of like when you're sore from working out.

Wrong answer.

Oy. Within a day, my leg swelled so badly I could barely put pants on. And then it hurt to walk. But this is one of those expensive drugs, one that makes me a million dollar patient, so I'm not going to waste the cartridge full of meds (that would cost me 2 days worth of medication). So I stick it out, being the cheapskate I am, thinking it will get better. Annnnd, no. I'm sweating out the next day and a half. Finally, the alarm beeps to indicate that its time to change. Hallelujah! So I stick the catheter back in my tummy blub knowing it will be sore too, but at least I'll be able to walk without a throbby leg. Its been 4 days but the swelling has finally started to go down.

 

Now I'm watching the clock, wanting it to move quickly so it will be time to take another pain pill. But at the same time I have taken an anti-anxiety pill so I kinda don't care. Its fun! Or, at least, amusing. I saw a funny post on facebook that said, "If God is watching us, the least we can do is be entertaining."

Entertained, hmm? :)

 

By the way, sincerely, thank you all for the kind encouragement.

Just getting started, yo.

I don't look sick.

You know how sometimes people have paranoia about getting a rare disease and usually those fears are unfounded? Well, just because you're paranoid doesn't mean they're not out to get you. Up until 2011, I had yet to spend a single night as an inpatient anywhere, unless you count the first days of my life. Even with previous surgeries and procedures, the only time you found me at a hospital at night was when I was stuck in the emergency room, waiting for treatment, but I never ordered meals because I was never admitted. Talk about a rapid decline in health AND a reality check. To quote one of the doctors I used to work with when he found out my lovely list o' ailments:

"You're a walking time bomb!"

When I was first diagnosed with pulmonary hypertension, it was January 24, 2006. I was paralyzed but very much awake and aware during the treatment procedure (known as a Swan-Ganz) and I distinctly heard the doctor say, "I'm not sure if I can get her off the table." That same doctor looked me in the eyes after the procedure and told me I would be lucky to live through the weekend; my cardiac output at one point during the procedure dropped below one. Cardiac output ranges from zero to four, four is normal, zero is dead. In the previous month, the middle of December 2005, everything was going really well, health-wise, and then breathing became difficult. It made no sense. In one week, I deteriorated from playing volleyball to a short walk from my bed to the bathroom causing shortness of breath and dizziness. Even speaking a full sentence required a break. At work, I would have to answer the phone, "American Airlines," *breathe*, "this is Miki," *breathe*, "how can I help you?" *breathe* as if I had just finished a race.

I took two years off work to get better, and I had to cash in all my chips (I went from being responsible enough to buy my own home at 25 to living check to check). Anyone who makes it past five years post-diagnosis is considered a long term survivor, and every day I survived caused the docs to just shrug their shoulders, surprised that I was still alive. I'm still trying to figure out why as well. I have an inkling or two.

But unless you know what signs and symptoms to look for, I look pretty darn healthy. I get many a dirty look when I park in the handicapped spot. The problem is, I am sick. And not in the fun, twisted way, not just in my head, I'm not imagining this, its more like a nightmare I found myself in. Its your proverbial rock and a hard place, to have a fatal and thus far, incurable disease. Add being single, and its messy. People who already know me are amazing, but at the same time I can often sense some discomfort because, well, how close do you want to be to someone who is terminal? Is it fair for me to still want to find that someone who will have the courage to hold my hand while I die? I'm blessed to have lots of friends, really, really great ones, but I still sleep alone at night.

I've already outlived the expectations and prognosis, but its proven that I can decline rapidly.

I've also proven that I can come back.

So I'm in constant limbo, and there are no easy answers. Doc says I could live well into my 50's and 60's if I slow down and take care of myself, but who wants to give up tacos? There's also the hope for a cure: there were NO treatments until the mid 90's, and now there are nine with more in the works. But I HATE the fact that my life depends on drugs. I used to hate taking tylenol for a headache; now I'm on a pill regimen three times a day. Plus there's another medicine that is a literal lifeline, a painful pump that is never to be disconnected; its keeping my heart and lungs going. I can't compromise with this, its either pain from the site, or not breathing. Hmm. In January I didn't have enough strength to go from sitting to standing by myself. My first night out of ICU, I ate my dinner sitting on the couch because I couldn't stand. Right before this last Christmas, sitting up in a chair without setting off an alarm was a small miracle. Four months ago, you know what the physical therapist assigned me for exercise? Pushing the back of my knees into the bed as I laid there, ten reps, three times a day. Making one trip around the nurses station was my marathon, the nurses cheered as I pushed my walker loaded with my oxygen and monitors. Last week, I visited that ICU for the first time since being discharged. I swear, the nurses station was a lot bigger when I was living there. I only cried a little bit right before the elevator arrived at the 11th floor. And I only cried a little bit again after I left, but the second set of tears were more of relief that I was able to leave without a wheelchair. Silly, I know. But true.

I'm just getting started with blogging, so please be patient. I'm not going to promise that I'll post every day, or every week, or on any kind of regular schedule. I'm still learning, still trying to figure out where I belong, still trying to figure out where I want to end up, and which path I'm going to take. I wish I was still that kid that believed I would have my act together by the time I was 'that old.'

So its late as I'm typing, and I'm not sure how much sense I'm making right now, but usually when I write anything late at night, I get more emotional so maybe that's a good thing for writing purposes.

I should be doing more unpacking and purging of my stuff if I'm up this late, but at least I'm doing something...