tr.v. ren·o·vat·ed, ren·o·vat·ing, ren·o·vates
1. To restore to an earlier condition, as by repairing or remodeling.
2. To impart new vigor to; revive.
I have gone through many stages with my CF, trying to hide it as a kid for fear of being “different”, complete denial and non-compliance in my early college years, and finally an acceptance of what this disease really means for me and my future. About 6 months ago I entered a whole new stage, “renovating” my health. Yes, there are certainly parts of CF that are out of our control, but to a certain degree our health is dependent on how hard we are willing to work for it. I learned this the hard way. In the Fall-Winter of 2008 I was put on IV treatment for what I thought would be my standard 3-week clean-out. Instead I spent 10 weeks on home infusions and for most of that time extremely ill. For the most part I spent my days moving from my bed to my couch, every move I made sucked the energy out of me. I was barely able to get myself in and out of the bath tub and standing in the shower was not even an option. I ran a fever for weeks, at times reaching as high as 106 and my whole body ached. My doctor went through 6 different drug combinations during this time, never able to find one that actually seemed to make me feel better. He sent me to an infectious disease specialist who really had no other suggestions. I had an air-quality specialist come in to test my home to make sure there was no mold that could be contributing to making me sick. No significant mold levels were found.
I was feeling completely helpless and I looked my doctor in the eye and asked him if I was dying, because I was beginning to believe that was what was happening. His answer was that he did not think so, that I was just going through a rough patch. I have been treated by my CF doctor for the past 23 years; I trust him completely, but I wasn’t convinced on this one. Fast-forward to the end of that ten week period. My doctor figured out (not soon enough) that I was having a reaction to one of the meds called “drug fever.” While that could account for some of the symptoms that I had experienced, I got my PICC line pulled with an FEV1 not any better than when I started! 10 weeks of pure hell….for NOTHING!
Well now, almost a year later I can look at that experience and say that maybe it was not for nothing after all. There was something to gain and it may have been a blessing in disguise….
I continued as usual for the three months following the end of IV treatment trying to recover, only to have another PFT done in March, and blowing my all time low (FEV1 of 43%.) My fear kicked in again…it prompted me to make numerous drastic changes to my daily routine and as a result I have greatly improved my health. It was at this time when I stumbled across cf.com and subsequently runsickboyrun.com. I spent endless hours reading and researching about the tactics that other CFers use to maintain their health. I was surprised (or more like shocked and appalled) to realized how many things I was doing WRONG. I thought I did so much day to day to take care of myself, when in reality there was so much that I was not doing that I should have been. I decided that it was time for a “health renovation!”
I am so grateful to the members of cf.com and to Ronnie for motivating me to take control of my health and ultimately helping me increase my FEV1 by 23% since I became a member of cf.com!!! I had always been relatively compliant with my medications and treatments and “got by” but this was not enough anymore. I made a pact with myself to be 100% compliant 100% of the time. I have stuck to that over the past 6 months (no matter how early I have to get up to fit my treatments in, or if I am struggling to keep my eyes open to do my treatments at night)….and as I sit here typing this feeling better than I have in years…I am so glad that I have. At my last clinic visit 1 week ago I had an FEV1 of 65% and FVC of 118%. I have been on a “PFT high” ever since, and am more motivated than ever to work as hard as I possibly can to keep that number rising!!!
Here are the changes that I have made to my routine over the past 6 months…
1. I switched from using the Hil-rom 104 vest to using the Respirtech Incourage vest system. I like the features that this system offers and I personally find that it makes my vest sessions more productive.
2. For years I had been using the PariTrek portable compressor for ALL of my nebulizer treatments completely unaware that this unit is NOT supposed to be used for Pulmozyme or Tobi. I have now switched to using the DeVilbiss PulmoAide.
3. I began taking PharmaNAC Fizzy Tablets 2x/day.
4. I began taking a multi-strain Probiotic daily.
5. I began using the NeilMed Sinus Rinse with sterile water, and sterilizing the bottles after each use. I had sinus surgery as a child, and thankfully have not had many sinus problems since, however I still LOVE this rinse!
6. My doctor had been prescribing me Advair for a couple of years but I would rarely remember to actually use it. I now use it 2x/daily.
7. Over the past few years I really fell out of any sort of exercising routine. I was really getting no physical activity at all. I now have worked my way up doing 45-60 minutes of cardio 4-6 days per week. I also take 1 hour Pilates classes 2x/week. I truly believe adding exercise to my daily routine is one of the MOST IMPORTANT changes I made!!!
8. I am ashamed to say that I used to NEVER sterilize my nebulizer sets, just rinsed with soap and water and sometime even used them while they were still wet. Yikes!!! I have since started sterilizing after every use using the Phillips Avent IQ24 electric baby bottle sterilizer and the Germ Guardian for drying.
9. I have become much more germ-conscious (i.e. I constantly wash my hands, try not to touch my face unless my hands are clean, I never go anywhere anymore without hand sanitizer in my bad and have bottles of it all over my house and in my car. I also make it a point to change my bedding more often than I used to.)
10. For years I have been spending a majority of my time in the basement of my house. It was our family room/office. A few months ago we had some water seep in through the basement floor during a bad rain storm. This wasn’t the first time this happened and as stated above we had recently had the house tested for mold and got a clean report, but I was armed with my new “proactive” attitude and decided that it was the end of the basement for me. I banned myself from the basement. Although there are no visible signs of mold or dampness, why should I put myself in an environment where I could possibly be at risk for making myself sick? The answer is simple…I shouldn’t. This definitely wasn’t the most convenient decision considering the layout of my house. Losing the basement meant losing a significant amount of usable living space and involved some rearranging. I now only step-foot in the basement to do laundry and when I do this I wear a mask.
11. I bought two Alen350 Hepa Air Purifiers, one for my bedroom and one for my now office/TV room where I spend most of my time while I am in the house. Also I never opened my bedroom windows during allergy season…so at the very least I could be sure I was sleeping in good clean air.
12. I have not yet decided to take Mucinex on a daily basis. However, there have been two times in the past few months that I have felt like I was starting to get sick and I have immediately started taking Mucinex for 10-14 days. My doctor’s opinion on this is that it will do very little for people with CF, but it has helped me to kick two minor colds without them turning into full on exacerbations. So in my opinion it is doing something to help and I will continue this routine when I feel I need to.
It is hard to say which of these things has specifically made the most difference in improving my health, but I plan to keep it up! And I will constantly be looking new things to contribute to my “renovation.”
Elizabeth Haran is a 26 year old, who was diagnosed with Cystic Fibrosis at 6 months. She was born and raised in Brooklyn, New York where she currently lives. She graduated from St. Joseph’s University in Philadelphia, Pennsylvania in 2005 with a degree in Marketing. Her interests include photography, reading, music, the beach, shopping, spending time with her family & friends, and of course WORKING OUT and staying healthy!!
Note from Ronnie: I just wanted to give a big thank you to Elizabeth for writing an outstanding guest post for RSR. She is a great example of a CFer who decided that "enough was enough" and to take CF head-on . She has shown that although it may take some changes, through a little bit of hard work and dedication, we CAN have some control over this disease. I encourage you to leave Elizabeth your encouraging comments as well as any questions you may have!
If you are interested in writing a guest post for RSR simply send me an email with a little bit about yourself and what you'd like to write about.