The picture enclosed is Ethan holding a poster of me as a young boy. It was shot by my Aunt Susie in the late seventies. I'm glad that Ethan will not have to spend time taking pills and doing treatments like his daddy.
As a young boy, I probably took ten pills per day, did not work out and only did treatments once a day for about an hour at the most. Things have changed as I've gotten older. I need more maintenance. Sadly, the clock has become my enemy as I spend so much time watching it to see when I can finish my treatments and get on with being a dad, a husband and a human being.
Here is my medical routine for the week:
I have to make sure to grab my 33 pills each day. Thirteen of those pills are for maintenance and the other 20 are for meals and snacks. On Mondays, Wednesdays and Fridays, I add one antibiotic per day. Also on Mondays, I take an extra pill. On Mondays and Thursdays, I take a powder called Miralax for my digestive system. So over a week's time, I take about 235 pills. If I forget my pills, I can't eat. My digestive system has issues without these pancreatic enzymes. That's why packing for trips is so nerve-wracking. The pills are primarily for my digestive system.
On months that I do my Tobi (a 35 to 40 minute inhaled treatment), I spend about 1,155 minutes of therapy per week plus six days of workouts which equal another 180 minutes. I also run in place during my Pulmozyme for another 13 minutes a day six times per week. I also have a required 20 minute break between my Pulmozyme and Tobi. In other words, between workouts and therapy, I spend about 1,515 minutes or roughly 15% of my week including sleep and my daily 20 minute breaks. I also take 2 one minute breaks in between my treatments to cough out my phlegm into the toilet. These numbers don't even factor in taking my pills, ordering my meds with our on-line pharmacy or going to doctor's appointments. My treatments and workouts are primarily to help my lungs. Due to the fact that I have CF, I cough a lot more than the average person but coughing is actually necessary for me to get rid of the phlegm in my lungs. I need to do treatments and workouts to help me get rid of the mucous.
In short, coughing is good for someone with CF.
My daily routine features doing nasal treatments for five minutes (clears my sinuses), working out for 30 minutes, administering Hypertonic Saline treatment, Running in Place (Running for about 13 of the 20 minutes) and doing my Vest for a total of 20 minutes. Then I take a coughing break and then it's on to my Pulmozyme and Vest for 20 minutes, another cough break, the 20 minute required break between Pulmozyme and Tobi, and then 35 to 40 minutes of Tobi. On months without Tobi, I can remove 840 minutes from this total (60 min x 2 times daily x 7 days). I guess you understand now why most people with CF do not have full time jobs. I'm proud of the fact that I have one and that I have been successful achieving my goals in my profession.
Fitting in the time to be a parent, husband, philanthropist, author, full-time worker and having my own life is not easy but it's worth it. My family comes first. Sadly it took me some time to see that, but now I cannot see it any other way.
It's funny how my Tobi routine is the same every month.
Week 1: Bring it on!
I do my Tobi early at night and usually am finished by 11:30 p.m. at the latest. I'm up at 5:00 a.m. for my morning treatments and am done by 7am.
Weeks 2 & 3: Return of the Nebulizer Driver!
I fall asleep before and during most of my treatments and wait till the last minute to do them. I'm fortunate to have a wife who is willing to wake me when I pass out in the bed or on the couch. I wake up late because of that. I'm up at 6:30 a.m. for my morning treatments and do my evening treatments at 10:30 p.m. and after falling asleep several times, I'm usually done at 2:00 to 2:30 a.m. I do my TOBI in the car in the mornings because of the late wake up.
Week 4: The Finish Line
I can see the finish line now. I tend to do my treatments earlier most days and wake up a bit earlier most mornings. I'm up at 5:45 a.m. and finish my treatments around 7:45 a.m. I do my treatments around 10:00 p.m. and finish around midnight. I still do my Tobi treatments in the car for the most part.
My last day of Tobi is this Sunday and I can't wait.
So that's my CF routine and the scary thing is that there are a lot of patients who do more than me. So when you donate to the Cystic Fibrosis Foundation or the Wish for Wendy Foundation, please know that your gift will go a long way towards making our days a lot easier.
Please help us make CF stand for Cure Found so patients like myself can have it stand for Cough Free or at least Clock Friendly!
I hope everyone is having a good week.
Andy
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