Welcome My Friends...

To the hospital stay that never ends.

Right now I'm writing from an isolation room of my local major medical establishment. There's a fabulous little room the size of a medium-sized closet that every person who comes in or out has to pass through. Upon entering they wash up, throw on one of those lovely yellow medical drapes usually reserved for the really bloody scenes in ER, don either a yellow flat mask, the kind that hooks around your ears, or an ever-so-pleasant conical-type mask that pretty much seals the entire area around your mouth. On the way out, they have to reverse this lovely process. My family eschews this who process entirely as they are all pretty sure that I either don't have TB, the possibility of which is the reason for my lock down, or they are sure that if I have TB, they've already been exposed and some medical mask is going to do very little to stop that. This wonderful little isolation, that will last until Monday evening, my thirteenth night in this fucking hospital is the culmination of two weeks of an emotional gravitron that's not
going to stop spinning once I'm discharged sometime next week.

So I'll start at the beginning, narrative is my thing after all and I'm not a good enough writer to start anywhere else. The day before Mother's day, my BF's ex-wife dropped off the little man with us and told us that she though we was coming down with something; which of course he is because he spends far too much time in her mother's smoke-filled house and he's always come down with something…god forbid she even spend a second's thought on my compromised immune system, but more on that later.
The boy was a wreck on Mother's day, lethargic, fevers, but still in good spirits. Monday he actually slept until after 11 am and the asked to be put down for a Four Hour Nap at one-thirty.. Tuesday was a repeat, no playing, no interest in crayons or cooking. Only on Tuesday I was feeling it too. I was exhausted and I hardly left the couch all day. He went hom to his mom's that night, but I only continued to feel shittier. By Thursday evening I could feel it creeping into my bronchial tubes and by Saturday night it was full blown bronchitis. So my self-diagnosing skills went to work and I filled a prescription for Levaquin; it did wonders for my cold and it made the levels of my blood thinners spike from a normal 2.5 to a lovely over-blown 4.5.
Tuesday was supposed to be one of the top days of my life. I had my first job interview for a teaching job, something I've been working toward for the last six years of my life. Two days following that I was supposed to walk in my college graduation. Biggest week of my life, and in grand style, after I've done my hair and makeup to perfection, pressed my suit and was about to get dressed and I cough several times, culminating in a series of tissues filled with blood clots and half-dollar sized pools of blood. Yeah. Sucks.

So I called my interview and they let me reschedule because of the emergency. Called the BF and asked him to come home as I had the little man napping in the next room and couldn't just leave and shook nervously as I woke, changed and dressed him. The xray and CT scans in the emergency room both showed occlusions that looked like pneumonia, and though I didn't have a fever or a productive cough (besides the blood), they admitted me to the med-surg floor under that diagnosis, which would of course soon prove to be bunk.

I started having dizzy spells, trouble walking the five feet between my bed and my bathroom without becoming short of breathe. So respiratory therapists, cardiologists and pulmonologists were all called in to consult. They opted to go with an echocardiogram because of the tachycardia that I'd been running since being admitted and the hole between the left and right atria of my heart. The echo showed that the hole was too small and more of a flap than a hole, not enough to cause the tachycardia or the breathing problems. But, they found dangerously elevated blood pressures in the right side of my heart and in my lungs. They followed up the echo with a right-side cardiac catheterization that confirmed their diagnosis. They call it pulmonary hypertension (PH). Apparently it had a damn good chance of killing me. That's the first time I've actually acknowledged that one. With what I know about lupus and other general medical issues, I knew instantly that with a condition like this I'm pretty much out of the running for pregnancy as the strain on my heart would kill me along with the baby. I've been able to acknowledge that one, not accept it, but acknowledge it. I don't even want to think about the whole death part yet. I've got a stack of printouts from the Mayo Clinic and elsewhere that I refuse to read during this extended stay at the hospital. I have too much anxiety in my world right now, and the anti-anxiety drugs are helping with that, but I don't want to overload things and worry myself crazy…I leave that up to my mom and BF, who are seriously showing signs of worry and stress. I feel so bad that they have to deal with all of the emotion of this.
So just as we're starting to make plans for me to leave (two days after missing my graduation), waiting for my anti-coagulation levels to reach normal so that I could be discharged, the breathing problems were getting worse. On normal room air my blood was absorbing 80% of the oxygen that I should've. After adding 6L of O2 through one of those oh-so-attractive nasal cannulas I was up to 90-94% and able to walk to the bathroom without getting breathless. It was better, but not good enough. So the pulmonologist ordered a high definition CT scan, so that they could get a really good look. The CT scan did not show anything hopeful. The single occlusion that they'd seen in the upper left lobe of my lung in the ER was now multiple occlusions, or infarctions, or infections of some kind and though I was gearing up to leave the hospital in time for the graduation party that my mom and I had been planning for nearly three months, those plans quickly went right out the window. The pulmonologist felt that he needed to do a bronchoscopy and we agreed. So the nest morning he looked around my chest, took samples, flushed it out with saline. It was the most horrible experience of my life. When I woke up my chest, throat and mouth were all full of saline. I felt panicked. I felt like I was drowning. I was still mildly sedated as I coughed the fluid out and hoped I'd never have to go through that ever again.

There are two basic kinds of pulmonary hypertension. Primary leads to a bleak prognosis (from what I'm told), but secondary pulmonary hypertension is being caused by another disease. Lupus or a mixed connective tissue disorder were the most probable causes given my history, but there was still the possibility that the PH could be caused but a bacterial infection which could be more easily reversed and possible cure the PH altogether. This was what everyone was pulling for, but not what we got. The lung obstructions were caused by autoimmune related inflammation, so steroids, massive doses of steroids, are the treatment along with vasodilators that will treat the PH directly.

So again I wait. The steroids are kicking in and my breathing is getting better – I'm only on 2L of O2 now. As soon my blood is back to a clotting level I can go home – barring any further setbacks.

So now I'll go to sleep, aided by great big doses of narcotics and other psychotropic drugs and try not to think about how badly this disease could cripple all of the dreams that I had for the rest of my life.

I want to go home! I miss my BF incredibly, even though he's here as much as is possible with the little man and work. He was been awesome, always the voice of optimism, always strong for my family and me. He even talked my mom down from a nervous fit as I was having a picc line inserted. He's amazing. Nothing could make me want to marry this man more that the last eleven days. He's been my rock, my comfort, my reason, and so much more. I love him so dearly…perhaps it's the only truly good thing to come out of this shitty situation; I no longer have a shadow out a doubt that this man will stand by me through fire and ice. Marriage no marriage – kids or none of our own- I just want him to be my partner in navigating this life. I love him immeasurably. My only worry is that I'll die and leave him with that pain…but what is life if not pain.

1 comment:

  1. Hi,

    I have had PH for about 15 years, and you're mistaken, PH is never caused by an infection and could never be cured that easily.

    You're right, it is more likely caused by your connective tissue disease, and they think that about me, too.

    Welcome to your new normal.

    Forget all the expectations that you had before, and start making new ones. Some of the things will be better... you may be able to travel and write, and invent, and create. You may become a parent, by different means than you have.

    But frankly, the first thing you have to do is get better.

    Dreams are only that. They're not real, and you can create new ones with very little problem.

    When I was finally diagnosed, I couldn't walk more than ten steps. Last summer I went to the UK and climbed up Castle Conwy in Wales, and traipsed all over Piccadilly. Two summers before that was a wedding in Bordeaux.

    You can, too.