"It is health that is real wealth and not pieces of gold and silver."

"It is health that is real wealth and not pieces of gold and silver."

~Mohandas K Gandhi

Thursday, December 30, 2010

In which I get the sickest I have ever been in my life

In September 2006, I gave birth to my son, via emergency c-section, after 21 hours of labor.  I did not enjoy pregnancy- I had morning sickness 24/7 for the first 14 weeks, and for the rest of the time, I felt vaguely icky- you know, that feeling you get when you are coming down with something, but you don't yet have a fever or a sore throat?  That's how I felt from week 14 onward, and I spent much of the pregnancy wishing I could just fast forward to the birth.

In January 2007, I went back to work after being on maternity leave.  I got sick several times, but nothign really out of the ordinary for me.  Then, in March, one Sunday morning, after having had cold symptoms for about a week, I awoke with a pain throughout the left side of my torso.  I told my husband to drive me to the hospital, now.  (I occasionally get pains of various kinds on my chest from various things, but this was different, and way more painful than any chest pain I'd experienced before.)  After four hours in the ER, they diagnosed me with pleurisy and sent me home with several prescrptions.  Now, I have had pleurisy before, but it had been many years, so I thought that maybe I was misremembering the pain.

As the week went on, I stayed home from school, because the pain got worse.  By Friday, I was vomiting from the pain.  After spending pretty much all night Friday night vomiting from the pain, I woke Darrel up early Saturday morning, St Patrick's Day, and told him to drive me back to the hospital.  Several hours later, I had a diagnosis: empyema and double pneumonia.  Empyema is a staph infection of the fluid between the lungs and the chest wall.  Normally, that fluid is, well, fluid, like water.  My fluid had so much infection in it, it was gel-like.  The pain I was feeling was because the gel-like fluid was causing too much pressure in my chest.  The double pneumonia was because I could inflate my lungs enough.  A thoracic surgeon stood over my gurney in the ER and told me I needed immediate emergency surgery to insert two chest tubes to drain the infected fluid.  Less than an hour later, I was upstairs, being prepped for surgery.  The last thing I remember from before the surgery was the pre-op nurse holding my hand.

I woke up in serious pain (and to dry heaves from anesthesia), with two tubes sticking out between the ribs on my left side.  I was so weak, I couldn't do anything for myself.  I was transferred to a double room, which I would not leave for five more days.  I was on three different IV antibiotics for the full five days.  On day four, I was taken to another ER to have a PICC line installed in my left arm.  A PICC is kind of a permanent IV, because IVs aren't meant to be in for more than a few days, most of the time.  Why did I need the PICC?  Because, for the next seven weeks, while I was at home on disability recuperating, I would be injecting another IV antibiotic into myself, twice daily, at the exact same time every day, to make sure the level of medication in my body stayed the same.  A home health care nurse would come every week, both to check on the PICC and see how I was doing, but also to draw blood to send to the lab, to check and make sure that I was actually getting rid of all the infection in my body.

I went back to work in late April, finally.  Before that, however, I went for a final checkin with the doctor who was overseeing my care.  This is the same guy who'd bitch-slapped my insurance company around, and got them to finally agree to pay for the IVIG.  During this final appointment, Dr D said to me, "Listen, I don't know if you are planning on having more children, but if you are, I need you to wait at least a year before getting pregnant, to give your body time to recuperate from all this.  Also, I have to tell you, I cannot guarantee a positive outcome."  He explained that what he thought happened was that my body put so much into making a healthy baby, there was nothing left of my immune system for me, and my immune system basically crashed.  Pregnancy takes a serious toll on any woman's body, but for me, it was worse than average. 

Why, if my son was born in September, did it take until March for me to crash?  My guess, and Dr D's guess, is pretty simple: after the birth, I pretty well never left the house.  Oh, sure, I went to the doctor, I took my son to visit school once, but, really, I didn't go anywhere.  I didn't get sick at all that fall, but it makes sense because I wasn't around people and wasn't exposed to anything. 

Anyway, when I told my husband what Dr D said, he just said, "Okay.  No more kids, then."  It wasn't a difficult decision for us to make.  The first two or three weeks after my surgery, I was incredibly weak, and my husband was essentially functioning as a single parent: he got up with our son at night, he fed him, changed him, took him to daycare, picked him up from daycare, did all the food shopping, made meals for the two of us, cleaned the house...and never complained once.  With that whole in sickness and in health thing in wedding vows, he sure got the short end of the stick, but it doesn't ever seem to bother him. 

Tuesday, December 28, 2010

I have a lot of doctors...

...and I spend a lot of time with them.

I have a primary care physician (PCP), a pulmonologist (lungs/bronchiectasis), an allergist, a gynecologist, and an infectious disease specialist.  I think that's it, for the moment.

I spend the most time with the PCP, for obvious reasons.  He's the guy I go to for my many, many sinus infections each school year, as well as pink eye or whatever other crud my son brings home from daycare.  I see the pulmonologist and the infectious disease specialist four times a year, to check in, and if I get really sick, like with pneumonia or something, I'll see each of them then, too. 

The infectious disease specialist is the one who oversees my IVIG.  He's the guy who bullied my insurance company into finally agreeing to pay for it in the first place, after I suffered a major health crisis almost four years ago.  Each time I see him, he goes over how the IVIG is going for me, and writes an order for me to get bloodwork done and an order for three more months of IVIG.  The insurance company says I have to get bloodwork done this often- I think they're hoping to find that my levels have all gone up, and I am magically cured.  I wish.  Someone should tell them that genetic defects don't work that way. 

I only see the allergist and the gynecologist once a year, thankfully.  I spend entirely too much time waiting in doctors' waiting rooms.  One doctor, whom I no longer see, kept me waiting regularly an hour at least.  I got fed up one time, after being polite multiple times, and sent them a bill for my time.  I'm a sign language interpreter, so I submitted a bill for the rate I charge when I freelance.  They called me up and demanded to know, in a very snotty way, WTF was this.  I snapped, "I have made repeatedly complaints about how long I wait in your office, and I get yessed to death.  My time, as you can see by my bill, is just as valuable as Doctor A's."  I basically fired that office after that phone call, and wrote a letter to each doctor in the practice explaining why, I wanted them to forward all my records to Doctor H, new PCP.

If had to name just one thing that is the most annoying thing about doctors, it's the amount of time I spend in waiting rooms.  I consider anything up to 20 minutes or so reasonable; more than that, I become cranky.  More than that, I really wish they would tell me they are running behind, and give me the option to reschedule.

Monday, December 27, 2010

Medical science can't do everything yet...

So, you might be wondering how does one treat someone like me?  Basically, you put out fires.  If I get sick, you put me on an antibiotic ten to fourteen days.  Depending upon the antibiotic, I could have zero side effects, or I could have nausea, diarrhea, sleeplessness, sleepiness, jitters, hot flashes...the list goes on.

I am on a daily maintenance inhaler, which I inhale twice daily.  I rinse my mouth out afterwards, because inhaler usage + immune deficiency frequently = oral thrush.  Yay.  Fortunately, I do not seem to experience the same discomfort most do, and most of the time, I only know I have thrush because when I go to the doctor or dentist, they tell me.  I wonder sometimes if, because I've had it so often, the pain recpetors in my mouth are damaged. 

I also take an antihistimine, for environmental allergies.  (Fortunately, I am not and never have been allergic to animals.)  And I am on medication for heartburn now, too.  My pulmonologist thinks the constant throat=clearing I've been experiencing may be because I have acid reflux.  So far, it does seem to be helping, but losing a good thirty pounds would probably help that, too.  I'm not kidding about that, either- people keep telling me I don't need to lose that much, but I do.  I just hide it really well. 

The Big Thing I do now is called IVIG, IV administered immunoglobulins.  Basically, the stuff my immune system does not make is culled from dozens, if not hundreds, of blood donors, and I get an infusion of this once a month.  A home health care nurse comes to my house, hooks me up to an IV, and sits with me while I'm getting the stuff.  I sometimes get headaches afterwards, really bad ones, which is a common side effect.  They even have a name for them- infusion headaches. 

The trick with IVIG is, it costs about $10,000 a pop.  I am not making that number up.  My insurance has been paying for it the last almost-four years (how that came about is another tale), thankfully, but they make me jumps through hoops for it.  Now they're giving me a hard time about it again, and it's so frustrating, I could cry.  They've denied payment on my last three infusions, saying it's because they didn't have recent enough lab work done on me.  I had blood drawn in August!  If they want me to go get blood drawn every month, I'll do it, but don't tell me afterwards.  Believe me, I do not have $30,000 to fork over to the infusion company.  I'll keep you posted on how that turns out.

Sunday, December 26, 2010

I begin again...

This is my second blog; my first one, http://jerseygirlkarin.blogspot.com/, is where I discuss my son's issues with Sensory Processing Disorder.  In this blog, I'll be discussing my own health issues.  The name of the blog comes from a guote from Gandhi that I liked: "It is health that is real wealth and not pieces of gold and silver."  It struck a chord with me, because I have always felt that if possible, I would pay any sum of money to get my health problems fixed.  However, my problems are not currently curable by medical science, so here I am.

First and foremost, I have a Primary Immune Deficicncy (PID).  PIDs are different from Secondary immune Deficiencies in that PIDs are caused by something inside the body (mostly, by genetic defects), and SIDs are caused by something outside the body- ie., HIV/AIDS, which is caused by a virus.  PIDs are not communicable, but for obvious reasons, they can be inherited.  This was a huge concern to me when I was pregnant with my son.  Not that I wish I was never born or anything, but I was overwhelmed at the thought of caring for a child with the same needs I had, while getting sick often myself.  Fortunately, we had him tested when he was about a year old, and his immune system is normal.

I am deficient in IgG, which is the stuff that protects against a wide variety of infections.  My problems are and always have been mostly respiratory.  I was diagnosed with this at the age of 29, even though I had been sick a lot my entire life.  Because I was not diagnosed any earlier, many of my respiratory infections during childhood were not treated aggressively enough, which led to my lungs basically being damaged, a condition called bronchiectasis.  People with bronchiectasis get respiratory infections with far greater frequency, and we cough, a lot, even when we're not sick.  The reason for this is, the bronchial tubes in a patient with bronchiectasis have been damaged, with the cilia in them destroyed, and they manufacture too much mucus.  Eeveryone's lungs manufacture some mucus- it's what keep the lungs lubricated and healthy.  But too much is bad and breeds infection, and can make breathing difficult.  I was diagnosed with bronchiectasis a week after my sixth birthday.

I think that's enough to start out with...