My Journey with Pulmonary Fibrosis

It doesn't seem like so much time has passed since my last entry, yet other days it seems longer.  I have had two hospitalizations since my last entry. In  April I developed some increasingly by the hour abdominal pain and severe headaches.  On the second day of it the doctor admitted me asap to try to see what was causing it.  It was decided the ugly head of Crohns Disease was reminding it was still there.  Crohns was the 1st autoimmune disease I was diagnosed with maybe 9 yrs ago now.  It bothered me consistently till I was dxed with Pulm Fibrosis 4 yrs later.  Seems my body started attacking every other organ and system sequentially till it hit my lungs and decided to stay there.  Now it is starting the cycle again five years after getting comfortable in the respiratory system.  This attack could have also been caused by doubling the dose of Cellcept two days before the pain started.  My body has a hard time tolerating the therapeutic dosages of these heavy drugs.  To be safe we went back down to the half dose to see if we can try up ping it again later to slow down the PF.

Then, four wks ago I cut my hand fixing breakfast one morning.  Due to blood thinners we couldn't stop the heavy bleeding and rushed to the ER.  That is a story in itself for another time!  Due to the lack of care I received there, and in spite of dressing the cut every day and using antibiotics, the cut got worse vs better.  I have a high pain tolerance but 2 wks later went back to my own dr. to see what was wrong with my hand and why the pain was so severe.  Within 24hrs time the skin was turning black and a huge mass was growing out of the center of the cut.  This was last week.  He sent me straight to the medical center, 36 miles away, and called a particular hand surgeon he wanted to care for me.  I drove myself there, as my husband had an important, time sensitive obligation at work that day, plus I do played the risk of the hand to him too!  My daughter-in-law offered to drive me but I refused.  Long story short, they went to work forcing my PT times down so they could operate asap and two days later the specialist opened up the hand, repaired the artery I had clipped and cleaned out the Cellulitis that had infected it all.  I came home last Saturday, with my left hand bandaged, stitched and in a sling.  I am typing this with one hand so if there are mistakes, please excuse them :)

I never realized how much one cannot do, easily, with one hand!  Like make-up...fixing ones hair..even making a simple sandwich! I have to get dressed before my husband leaves in the morning and wait till he gets home late in the evening to change.  If this were to be a permanent situation I know I would learn and adapt.  I am so lucky it is not and have more empathy for those who do loose a hand!  Seems because of my lack of or lowered immune system I am at risk for a simple cut to become life threatening.

We can handle that!

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• #1 Comment from pharmolo 
  5/16/07 3:18 PM | Permalink

  Not an easy time you're having at it, Jan, but you've got the spirit to carry on. As you should. Be well :-)