Sunday, September 26, 2010

"Difficile" Times

Round two of pneumonia has been treated with mixed success.  I am thrilled to report that my breathing is much improved!  However, the extended broad spectrum antibiotics have unfortunately caused a super-infection... commonly known as C. Diff.  This nasty, nasty infection has left me about as miserable as I can be.  I am suffering with severe cramping abdominal pain.  My amazing and wonderful doctor actually had to make a house call today to examine me and bring me some medication for the pain.  On a Sunday!  Of course, I am now on another antibiotic to fight this infection, as well.

Without my primary doctor, I don't know where I'd be.  But for now, I am laying low and trying to heal.

Tuesday, September 14, 2010

Once is Never Enough

I had a funny moment today.  At about 6 pm, at the end of a very long day of always urgent medical treatments, I spotted my fabulous rheumatologist in the hallway as I received my IV antibiotics.

She had emailed me last week with a lab value which was quite elevated.  I was apparently sick of being sick.  I emailed her back and basically said, "Let's pretend we never ordered it."  She said she just didn't know how to respond... but she knew she would be seeing me this week and we'd figure it out.  Oh--and I didn't have an appointment.  She just knew I'd be back.

And I was.  My testing today showed that my pneumonia and pleural effusion (the fluid collection in my lung) have recurred.  The symptoms are exactly the same as those I felt in the hospital, but while the volume was 11 (for those Spinal Tap fans) in Chicago, the volume is down at about 4 now.

So, with great haste another PICC line was placed today and my IV antibiotics restarted, as well as new oral antibiotics and some other medication adjustments.  This, too, will pass.  Just like those refried beans.  :)

Monday, September 13, 2010

I'm Famous!

When I started my career as a physician, I admit I did not think that my first major publication would be as one of the 125 white women in a study.  But, there you have it.

I have enrolled in several scleroderma research studies these past 3 years, although only one (ASSIST, in Chicago) has involved treatment.  The others just want to study me--draw labs, look at my test results, have me complete forms on all sorts of unusual and somewhat personal questions!  But, it is worth it in the name of science.

The first of these studies has been published, and I will attach a link to a summary of their findings at the end of this post.  For those who are curious, I do carry the ATA-1 antibody (also known as Scl-70), which turned out to be the only indicator of early and aggressive lung disease.

As for me, well, I'm sitting at home, taking calls from my agent and having bon bons dropped gently onto my tongue.  I really should have one of my people take a look at my toenails... atrocious!  I can't bend over to paint them without feeling sick still.  I had a rough weekend but I know that I will be feeling better soon.  Check out the link below!

Wednesday, September 8, 2010

Good News!

Was that really me just a couple of months ago??  Thought I'd share a photo from our summer vacation before I share the good news...  nothing like a little sense of anticipation.  :)

I drove up to UCLA today to see my specialist in scleroderma, Dr. Furst.  He reviewed all of the data collected in Chicago and gave me a thorough examination.  First, he feels that my skin has already relaxed somewhat, which he believes indicates that I will have a good result from the transplant.  Second, he feels that the abnormal cardiac catheterizations results indicate cardiac involvement with scleroderma, rather than PAH.  While this is not exactly great news, it is better news than PAH.

He has advised a more aggressive medication regimen to help solve the ongoing upchuck issue--wish I had Karen's silver tongue, but you can check comments from my last post if you need a chuckle... no pun intended!

And, I didn't throw up all day!  I almost hate to write that, 'cause I don't want to ruin it, but there it is.  :)  Progress!

Friday, September 3, 2010

Wake Me Up When September Ends

So... I was reading the paper this week (one of my more active pursuits over the last few days, I'm afraid), and I noticed that Green Day was playing Thursday night here in San Diego!

Steve has loved Green Day since our college days, and Jake and Steve jam to Green Day Rock Band on the Wii with style.  While the language may not be perfect, I admit, Jake loves the beat and the songs and Green Day has become his favorite band.  So, I bought the boys tickets and off they went last night.

Their encore song, "Wake Me Up When September Ends," so embodies my current life philosophy that I couldn't help sharing.

I'm still throwing up every day, and struggling to eat.  If only I were "one stomach flu away from my ideal body weight" like the gal in "The Devil Wears Prada."  Instead, I'd have to suffer for months.  Not worth it!  I need to get better and get active!  So, with the help of my local and Chicago doctor teams, we are tweaking my meds and trying to find a solution.  I've pulled the muscles in my back from vomiting so much for so long.

Otherwise, I am doing fine.  I think my lungs are slowly clearing but I haven't tested my stamina as yet.  I have heard from my 2 friends who went through the transplant with me, and while one is doing well (just tired in the afternoons), the other is also suffering some complications now, although different from mine.  I think this process is just tough on the body and patience is needed.  The tincture of time will surely fix these minor issues.

Wake me up when September ends.  :)