Friday, June 5, 2015

Tobi or Not Tobi, That is the Question *

     Being on Tobi, 28 days on, 28 days off, is a familiar routine for most people with cystic fibrosis.  Like the phases of the moon, being on Tobi is part of a natural cycle, but instead of affecting ocean tides, it affects how we feel.  For me, I always felt better when I was on Tobi than when I was in an "off" cycle.  I'm sure some of that was psychological, but the medicine obviously works too.  For a long time, I would not be on any additional medication during the "off" cycle, but in the years before my transplant I would do inhaled Colistan and, once it was approved, Cayston.  But whether it was something scientific or more of a security blanket effect, I still felt best on Tobi.
     The only side effects I ever noticed on Tobi were the taste that would linger in my mouth and nose.  My nostrils, in particular, felt like they had been coated with sticky-tak after the first few doses in each cycle, but it became less noticeable as the days went on.  I am grateful that I didn't encounter any voice changes or hoarseness, though maybe it would have made my pre-pubescent sounding voice a little more manly in high school.  I'm especially thankful I didn't have any side effects related to my hearing, since one of my other meds had chipped away at my high-pitch hearing capabilities.

     So, after eight months of not doing any inhaled medications, my doctors found a "rare quantity" of the same pseudomonas I used to culture in my CF lungs.  It no doubt found its way down from my sinus and made a small colony for itself.  Even though my transplanted lungs will never get cystic fibrosis, it may still be necessary to treat them in a similar fashion from time to time.  Which is why I am on Tobi, inhaling its familiar tacky vapors as I type this.  But this time around, things are a little different.

     For reasons I'm not aware of, my pulmonoligist put me on the nebulizer form of Tobi instead of Tobi Inhaled Powder, which I took before the transplant.  I'm not an argue with the doctor type person, having been a teacher who encountered more than a few parents who think they know more about my job than I.  So, after being on the medicine for a few days, I started to notice pain in my middle back, not every single breath, but sometimes sharp when I yawned or took a deep breath.  It was quite different from the tenderness and pain I've had in my pectoral area ever since the surgery, so I called about it.  My transplant coordinator listened to my symptoms and told me that she hears this quite frequently.  One of the patients even said being on Tobi post-transplant is like inhaling Raid.  First, I hope this guy never actually did that.  Second, I'd have to agree with him.  My wife hypothesized that this is the first time I've actually been able to breathe deeply enough to get Tobi into all the nooks and crannies of my lungs.  Whatever the case, I was told that if it got worse, we may need to find an alternative treatment.  So far, it hasn't, and I'm hopeful that I can keep going through all 28 days.

     While it seems a bit odd to be on a medicine that makes my lungs feel unhappy, something I've been doing with some regularity for the past year and a half reassured me that I'm not experiencing a decrease in my lung function.  I've kept stats since two Novembers ago on how many times I can go up and down my stairs in my house before I need to stop and sit down.  When I was on oxygen, I would crank myself up to the same level each time (8 liters per minute), check my pulse ox and heart rate on a surprisingly reliable little meter I bought online, and then do as many flights as possible and check it when I was exhausted or my heart rate went above 160, whichever came first.  By keeping track of these numbers, I had a reliable measure of my lung function, and I kept taking this "snapshot" after the transplant to see how much I was improving.  When I did this little test prior to calling the transplant coordinator, I was able to do as many flights as ever (still 9) and my heart rate returned to normal faster than ever before, all while my pulse ox never dipped below 98.  If I didn't have all the previous months of data, I know I wouldn't have the peace of mind I do now.  And health professionals that I literally trust with my life help too!

* This may be the best / worst medicine-literature pun of all time.  But feel free to try to top it in the comments section!


  1. So you are doing your Tobi as a one time shot or will you be staying on the cycle now?

  2. Probably would have to vote the best by the way.

  3. Thanks! Just 28 days of Tobi to vanquish this bacteria... :)