There have been some pretty big changes around here lately. So I thought I'd start up a new blog to attempt to keep track of it all, and help family and friends make it through everything with us.
I have Pulmonary Hypertension, which showed up on an echocardiogram in March of this year at a very high 113. Normal is considered anything below 25. I'm being treated with 9 different medications for various problems and am coping as well as I can considering the disease prognosis and drug side effects. There is also scarring in my lungs but the docs don't seem to want to make a diagnosis of pulmonary fibrosis yet. We're on the wait-and-see plan.
The kids are happy, healthy and growing. They're actually pretty socially acceptable little people who aren't rude or spoiled or lacking in the areas of manners, smarts or looks... so their dad and I are proud of our parenting accomplishments so far.
As for their dad, he's healthy and employed but I'm not sure about the happy aspect at this point, due to the major problems that have come up with my health. So, here's the story.
Eight years ago I was diagnosed with systemic lupus erythematosus (lupus). The disease attacked my heart, creating a pericardial effusion, making my heart function poorly and my entire body swell with extra fluid. It was all brought on by stress... I was finishing xray training after three years away from home, moving back to Alaska, starting a new job. The doctors couldn't figure out what was wrong for a couple of months, until my new-employee physical when a very good P.A. decided I needed an ultrasound of my heart. From that point I was treated with high-dose prednisone, saw specialists in Anchorage and eventually more lupus symptoms manifested themselves. The following winter I became pregnant with our first baby, a daughter, and nearly all my symptoms went away for seven years. I stopped working four years into the job and became a SAHM. We've had two more kids, a daughter and a son - so it seems being pregnant or nursing kept the lupus in remission.
We moved to Wyoming in November 2002 for K to take a great job flying for the University. It's been an adventure, relocating and experiencing life out of rural Alaska. There are so many family-oriented things we've been able to do that it's been worth the struggles. The kids have great schools, playgroups, soccer, ballet, storytimes and endless other opportunities. K's got hockey, baseball, softball, running, hunting, fishing, camping... all that. I've done a few things outside of mom-ing: made it to a few scrapbooking things and knitting group nights at the local yarn shop. This intensive mom-phase of life seems to be ETERNAL.
The elevation here is 7200', compared to Nome's sea level and Denver's 5280'. Living at high altitudes, air travel, and being pregnant are all situations that can make Pulmonary Hypertension worse... So I've had this condition without knowing it maybe for years, and have been doing every single thing I can possibly do to make it worse. Unintentionally of course. Including not seeing any doctors for lupus because I thought I was so healthy.
Throughout 2005 I was pregnant, tired, and having symptoms of general inflammation without thinking much of it... After baby was born in November, I started being short of breath more and more often. By March 2006 when K was leaving for a 3-week project, I knew it was another pericardial effusion coming on, because I started having swollen hands, feet and face. So I saw a doctor, got on some high-dose prednisone and thought it would be just like the last lupus flare. Then two days before K was scheduled to be back, I started coughing up blood, ended up in the ER at 6am with three kids and a big bad pneumonia. My good friends took the girls while I was admitted, and K made it home early thanks to the kindness of his boss.
Since then I've had several tests (CT's, xrays, labs, bronchoscopy) which revealed the pulmonary hypertension. It's treated with drugs to help people be able to tolerate walking and exercise better, but the only cure is lung transplant.
So the three big questions we're facing are: 1) what's my life expectancy considering my severe PH; 2) is it secondary PH or primary PH; and 3) how far into the future will we be moving to a lower altitude to lessen the workload on my heart and lungs. All the doctors we've talked to have basically said we need to wait until the lupus flare is over, then we'll see how my heart and lungs are doing.
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