Home Again, Home Again, Jiggity Jig


At last I’m home, after a week’s stay in the hospital with pneumonia.  This was my second bout of pneumonia and my second one-week stay in a little over two months.  I sincerely hope this isn’t a new pattern!  But it does show that I’m getting pretty good at reading my body;  Of course, sitting around gasping while using double my normal level of oxygen was a pretty good sign something was wrong.

My first hospital stay was the week after Easter.  Tests showed PCP (Pneumocystis carinii pneumonia). It’s an opportunistic fungal infection common in patients with HIV (and pulmonary fibrosis).  Anyway, I’m now on a prophylactic dose of the antibiotic dapsone forever.  The most recent infection wasn’t PCP (thankfully).  In fact, we don’t know what caused the flare.  After re-running all of the autoimmune tests and dozens of cultures, the docs couldn’t find the culprit.  But high-dose steroids and a handful of antibiotics seemed to do the trick.

I actually came home with a picc line — a special IV placed in the upper arm with a long catheter that runs through the vein to the heart. I was getting once-daily IV infusions of antibiotics at home.  But yesterday I woke up to find my right arm (the one with the picc) swollen and tender.  The doc told me to come in today so he could look at it.  By the time I got there this afternoon,. my right arm was half-again the size of my left.  The doc pulled the picc and started me on 2 aspirin 3 times a day to bust the clot that had formed in my arm.  He thinks we caught it early enough that we can get rid of it without more aggressive therapy.  Keep your fingers crossed.


picc line

Needless to say, the IV infusions have stopped (yay).  I’m still on an elevated dose of prednisone, which leaves me vulnerable to infection, so I’m being extra careful, trying to avoid crowds and slathering on the Purell at every turn.  I see my pulmo this Friday to find out when I can go back to work.  Soon, I hope — I’m getting b.o.r.e.d!

If nothing else, this latest flare made it crystal clear I can’t take my routine for granted.  During the previous few weeks, I wasn’t diligent about doing 4 nebulizers a day, and there were nights I went to bed without doing my inhaler.  I realize now I have to stay on top of it 100% of the time, because I have no excess capacity to play with (total lung capacity is 49%).  I’m either rock-solid stable, or I’m not.  There’s no “sort of” for me.  I’m going to have to fight hard to keep what I have left — and that means getting my ample ass back to pulmonary rehab on a regular basis.

I’ve missed all of you, and I’m sorry it’s been so long since I posted.  I’ve been wrestling demons as I come to terms with my present and my future.  I think I’m finally ready to start writing about it all, so look out for a flurry of random thoughts coming your way soon!


7 thoughts on “Home Again, Home Again, Jiggity Jig

  1. Pingback: A Little Dab Will Do Ya | Reality Gasps

  2. You are persevering through this well, Lori. God is pursuing you so lean into Him to fight those demons. Changes of reality are hard stuff!

    • I’ve had many many conversations with the Big Guy, and He is helping me find my way. I was diagnosed 9 months ago this week. I guess I’m finally “giving birth” to the reality of what this is, and coming to terms with how I will attack it every day.

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