Thankful for the Little Things: Update end of 2014

DECEMBER 30, 2014
I just got off the phone with Rob, a long time friend (since grade school). He lives in Nashville, while I am in South Florida. When we moved here from Nashville in July of 2011, just a couple of months after my first adult stem-cell treatment, I was just beginning to feel the improvements in my health, but I was still in a bit of a brain fog from low oxygen levels and excessively high levels of CO2 in my body. So my best friend, Rob, drove my and my car down to Florida, while my wife drove her own car.

Rob and I only speak a few times a year, and just pick up from the last conversation. The last time we spoke was in June, 2014. That was a few weeks before I had my third stem-cell treatment. Today, he noticed the change in my voice. He said that the last time we spoke, I was struggling just to carry on a conversation. Now he hears a strong voice for over an hour-long phone conversation.

A couple of months ago, after not having a stem cell treatment for 2 years, cystic fibrosis was continuing to progress. I was struggling again–not as bad as the year before the first treatment, but it was heading that way. I was starting to get continuous headaches again. My sleep was becoming troubled, and every day was a bad day.

It is difficult to notice the change from one week to the next, but when I compare this week with a week from August or September, or even October, the improvement is very much apparent:

  • Seven days a week were bad, now I have two or three bad days a week. That means four or five good day. And the bad day usually comes after I was overdoing things for a couple of days, or got lazy about my diet and rest. My breathing function is very sensitive to proper nutrition, rest and of course keeping my lungs as clear of congestion as possible.
  • I am able to shower and get out of the house for activity a few times week. Two, three months ago, I had days when I was too weak to take a shower.IMG_0671
  • I can go shopping and carry cases of water to the car, then into the house. Struggling–Yes. Pumping up the oxygen flow rate–Yes. Hitting the oxygen hard for five minutes to recover after moving the water–Yes. Struggling all the way and moving at the speed of molasses–Yes. But doing it nonetheless what was impossible a few months earlier.
  • Going to the beach, walking over 500 feet from the car to the beach, carrying my portable oxygen tank, an extra tank, a beach bag with towels, water, book, and other beach stuff, and carrying my own beach chair. Then going for a short walk, then returning to the car, everything in tow–at the lightning speed of a very slow snail. DID THAT YESTERDAY!  Two months ago, I was not able even to IMG_0760walk to the beach. My wife and I have been to  beach a few times in the last few weeks.

I would like to get back to a normal life, but short of a supernatural miracle from the Lord, this is a new normal, and I am thankful for even these small improvements. Some CF Warriors have opted for lung transplants. But even that is not life back to normal. Their activity levels are often very close to normal, but their lives as a whole are anything but normal. The medication levels to avoid rejection and infection are far from normal. I personally chose not to go that route. Just a personal decision, no judgement of transplants. Everyone has to make their own choice (bad grammar, good point). I am, however, still believing for that supernatural miracle. And while I wait, as a result of the adult stem-cell treatments, my health continues to improve for now, and I still have not needed an IV antibiotic tuneup in over three years. I do not have any lung function numbers yet for the “after” of the third treatment. My next appointment for pulmonary functions tests with my CF doctor is in February, 2015. I have not seen that doctor since July of 2014. Highly unusual for “end stage cystic fibrosis” not to have a doctor visit in six months. Again, thankful for the little things.

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