Bob Aronson, the Author of most of these posts, does not have CF. He suffers from Chronic Obstructive Pulmonary Disease (COPD), a distant cousin of CF but related in the sense that he can identify with the struggle to breathe. He is also a 2007 heart transplant recipient)
A few days ago I posted a blog on Cystic Fibrosis that has attracted a great deal of attention but my blog didn’t do justice to the heroic efforts these patients make every day just so that they can function. Imagine if you can, getting up every day experiencing great difficulty breathing and then being required to exercise in order to clear your lungs…exercise that requires beating on your chest to loosen the mucus that restricts their ability to function. Some people must physically beat on their own chests while others, if they can afford it, get a machine to do it for them, sometimes for up to an hour.
I found this account on the internet and rather than re-write it and lift excerpts I choose to publish the entire account unedited. Your comments are welcome.
My Version of Normal
Diagnosed with cystic fibrosis at birth, I was not expected to celebrate my tenth birthday. Today, thanks to the hard work of many doctors and researchers, new drug therapies and the support of a wonderful family, I am living and breathing in my late twenties. A day in my life is somewhat routine with room for adjustments as needed.
The first thing I do every morning upon waking is cough. I cough because the thick, sticky mucus so characteristic of cystic fibrosis, has lodged itself in my airways during the night. Some mornings it only takes five minutes to clear my lungs of sputum. Cystic fibrosis patients like me have affectionately dubbed these secretions “lung oysters.”
My first round of coughing complete, I move on to a more dramatic approach to airway clearance. I stumble downstairs to the refrigerator where I keep one of my most effective medications. Pulmozyme, or DNase, is a mucolytic developed by Genetech. When inhaled as a mist via nebulizer, it works in my lungs to cut apart the bacteria that thrive there. Pulmozyme is just one of the inhaled medications I need to open up my airways to their fullest. A bronchodilator in the form of a metered dose inhaler (MDI) goes a long way to help with that. Later in the day, I may need that bronchodilator again if I feel my chest becoming tight.
The highlight of my morning routine is my high-frequency chest wall oscillation (HFCWO) vest. It looks like a life vest. On the front of the vest are two hoses that attach to an air compressor. As the vest fills with air and begins to vibrate, the controls on the compressor allow me to set the frequency, pressure and length of time for the vibration therapy. I wear the vest for a minimum of 20 minutes on days when I feel well and up to an hour when I’m struggling with chest congestion.
After the vest, it’s finally time for breakfast. I am a pancreatic insufficient CF patient, which means that my pancreas doesn’t secrete the enzymes I need to absorb the energy and nutrients from my food. To compensate for that I take enzyme supplements. My breakfast is usually on the order of 900 calories or more and typically includes some fruit, milk and some sort of complex carbohydrates like muffins or cereal.
Breakfast time is hardly complete without vitamin and mineral supplements to replace those I cannot absorb from food. Calcium, magnesium and a multivitamin of the fat-soluble vitamins A, B, D, E and K are swallowed together to save time. I learned long ago how to swallow multiple pills at a time.
Once I’ve taken my vitamins, I get ready for my day. My form of cystic fibrosis has progressed to the point that I have moderate loss of lung function. This keeps me from working a 40-hour week like I used to when I was younger. Three days a week, I go in to work where I enjoy a part-time schedule as an environmental scientist. My employer is very understanding of my needs for managing CF and has given me a reasonably flexible schedule. Some days I’m even able to work from home.
At lunch time I eat another calorie-laden meal, complete with enzymes. I try to eat almost the same thing every day, because I view food as fuel. Sandwiches (yes, plural on a single day), yogurt, pretzels, juice and a soda are my main fare. My lunch break is another chance for me to do some airway clearance and take my MDI to keep my airways open. I keep a small, hand-held nebulizer/compressor in my desk drawer along with a small stash of medications just in case.
After work I come home, take a quick cat-nap on the couch and prepare dinner. Dinner time is where I really shine! I love to cook and my husband loves it when I have a meal ready to go when he walks through the door. I prepare two plates every night. One for me, which has a double helping of almost everything and one for him, a lighter version of the evening’s food selection. When it comes to food at our house, grocery shopping can be difficult since I need high-calorie foods, and my husband, who watches his weight in a manner completely different from mine, likes low-fat or non-fat items.
The dinner dishes having been cleared, my husband and I relax and enjoy the evening together. Usually we watch a bit of television or watch a Netflix movie together. By the time 8:30 p.m. rolls around it’s time for me to once again begin a series of airway clearance and nebulizer medications. I put on the vibrating vest and set it to a pressure that allows me to move relative freely. During this time I lift hand weights and do a lot of stretching to build muscles. Since muscle weighs more than fat, it is important that I have enough of both to give my body the energy it needs not only to sustain me throughout the day’s activities, but to help fight off any flare-ups of lung infections.
Half an hour later, my treatments are complete and I spend a half hour playing with my pet rabbit. Initially we were concerned that an indoor animal would be a problem for my allergies. Our worries turned out to be unfounded. The rabbit only sheds a few times a year, and as long as I keep his cage and litter box neat, there’s no odor. Having a pet is a great source of therapy for me, especially when I’m home sick.
I try to get to bed at the same time every night. Cystic fibrosis patients are encouraged to get at least 10 hours of sleep. I usually manage to get between 8 and 9 hours. After such a full day of taking care of myself, doing my share around the house and making sure my husband is happy, a good night’s sleep is not only much needed, it’s much welcomed.
Aside from all the medications and airway clearance treatments, a day in my life as a cystic fibrosis patient really isn’t that different from anyone else’s day. I just have to be more careful about how I budget my time and my energy so that I can be as normal as possible and enjoy the highest quality of life this world has to offer.
- http://tinyurl.com/9swbmsn (CF Living)
Cystic Fibrosis is a terrible disease and while progress is being made in treating it, lifespans for its victims are still relatively short. If you’d like to help fund research or offer assistance in other ways contact the Cystic Fibrosis Foundation http://www.cff.org/GetInvolved/ManyWaysToGive/MakeADonation/
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.
You may comment in the space provided or email your thoughts to me at email@example.com. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to firstname.lastname@example.org and usually you will get a copy the same day.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.