{"id":18,"date":"2017-01-05T10:49:55","date_gmt":"2017-01-05T15:49:55","guid":{"rendered":"http:\/\/davidwkurtz.com\/wordpress\/?p=18"},"modified":"2017-01-05T10:49:55","modified_gmt":"2017-01-05T15:49:55","slug":"how-did-i-get-to-this-point","status":"publish","type":"post","link":"https:\/\/davidwkurtz.com\/wordpress\/2017\/01\/05\/how-did-i-get-to-this-point\/","title":{"rendered":"How did I get to this point?"},"content":{"rendered":"

I have been very fortunate as regards my health. Over nearly 65 years I’ve spent one night in a hospital and usually saw a doctor once a year for a physical, if that often.
\nHowever, in 2015 I noticed something was going on. \u00a0When I walked up a flight of stairs I had to catch my breath before I could talk to my wife. I was supposed to be training for my eighth Ironman race and my training was flatlining when it should be peaking! What was this all about? I had an aerobic engine better than guys half my age. \u00a0I used to run flights of stairs as a workout.<\/p>\n

What happened was diffuse scleroderma, an autoimmune disease that hardens your skin and can affect any number of internal organs. \u00a0It was considered incurable and the options going forward are not very good. \u00a0I was diagnosed on December 23, 1015, only a few months after noting that something was wrong. \u00a0In that respect, I was again fortunate. \u00a0The average time to diagnosis is 3 to 4 years after the first signs of the disease.<\/p>\n

What follows here is a rather detailed log of what has transpired over the past year and a half to provide a permanent record for reference. \u00a0I’m not out of the woods by any measure, but at least I have an opportunity to improve my outcome. \u00a0The history may help.<\/p>\n

    \n
  1. April-May 2015 \u00a0My triathlon training program began flattening out at a time when it should be improving significantly.<\/li>\n
  2. August 2015 \u00a0I noted that I was fatigued and really did not have the energy I usually had.<\/li>\n
  3. September 2015 \u00a0Walking up one flight of stairs left me out of breath to the point that I could not talk to my wife without waiting to first catch my breath.<\/li>\n
  4. October 8, 2015 \u00a0I woke up to find my hands swollen so much that I could not close them.<\/li>\n
  5. October 14, 2014 \u00a0I went into U. of M. Emergency for suspected heart trouble (fatigue, swollen hands, shortness of breath). \u00a0I ended up being admitted for three days while undergoing a battery of tests (X-rays, CT scan, Echocardiogram, etc.). \u00a0The diagnosis was pneumonitis which was reasonable except that my hands were still swollen.<\/li>\n
  6. October 22, 2015 \u00a0First pulmonary function test.<\/li>\n
  7. October 24-28, 2015 \u00a0In bed and ill with severe cough and very tired.<\/li>\n
  8. November 9, 2015 \u00a0Saw Dr. Kiningham (PCP) with a sore throat and cold; coughing, chills, fever, and hands that are still swollen. \u00a0Basically confirmed that it was pneumonitis and ignored the swollen hands.<\/li>\n
  9. November 16, 2015 \u00a0CT scan showed slightly swollen lymph nodes in my lungs.<\/li>\n
  10. December 14, 2015 \u00a0Bronchoscopy with lavage and biopsy.<\/li>\n
  11. December 23, 2015 \u00a0Dr. Khanna diagnosed me with diffuse scleroderma based upon swollen hands, blood tests, and bronchoscopy. \u00a0Started Prilosec for reflux.<\/li>\n
  12. December 30, 2015 \u00a0Lung biopsy confirmed diagnosis of interstitial lung disease.<\/li>\n
  13. January 7, 2015 \u00a0Right heart catheterization showed no sign of heart involvement and a normal PAH (i.e. none).<\/li>\n
  14. January 8 to March 16, 2016 \u00a0Began Cellcept orally at 3,000 mg per day. \u00a0No positive effect. \u00a0Lung function is still declining.<\/li>\n
  15. April 20 to September 7, 2016 \u00a0Six doses of Cytoxan (1,430 mL per dose).<\/li>\n
  16. August 8 & 22, 2016 \u00a0Two doses of Rituximab. \u00a0Cytoxan was not looking effective so Rituximab was added.<\/li>\n
  17. October 11, 2016 \u00a0Appointments with Dr. Khanna and Dr. Flaherty. \u00a0Dr. Khanna he is somewhat encouraged that Rituximab\u00a0is having a positive effect. \u00a0The problem is that my PFT today shows a continued decline in my DLCO (27%) and I am running out of numbers on the low end. \u00a0My meeting with Dr. Flaherty was to discuss a lung transplant. \u00a0Because it takes months to go through the approval process it was decided to begin testing to determine if I am a candidate for lung transplant. \u00a0Also discussed stem cell transplant with Dr. Khanna. \u00a0He said I am not a candidate because my lung function is so low. \u00a0All in all not a good day today.<\/li>\n<\/ol>\n","protected":false},"excerpt":{"rendered":"

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