Here at Emily’s Entourage we are dedicated to bringing you fresh content full of honesty, passion, and information. With excitement, we present the first in a new blog series, “Faces of CF,” where we invite guest bloggers to provide a first-hand account of their life with CF. We hope to highlight people from all stages of this disease who have heroically encountered and tackled a variety of obstacles. If you’re interested in sharing your perspective, let us know, we would love to hear from YOU! Please enjoy our first blog in this series, written by the wonderful Laura Smith, on the occasion of a very special anniversary……
My stomach was messed up all last week. I have a slight wheeze in my chest and an unproductive cough. The front of my chest is numb. I get blood drawn every month and sometimes every week. I take pills four times per day. I have to be very careful about a lot of things that normal people don’t have to worry about.
I am a double lung transplant survivor. Today is my one year anniversary.
I had a lung transplant due to end-stage cystic fibrosis. Transplant was my only option to continue living. In many ways, transplant has normalized my life beyond what I could have imagined possible after 35 years living with cystic fibrosis. Until my transplant, cystic fibrosis lungs required that I spend hours every day doing nebulizer and percussive vest treatments, and I coughed productively all the time. At the end, I was always either coming off of or heading toward my next round of IV antibiotics and I needed oxygen 24 hours a day. Fun things my husband and I like to do such as hiking and traveling became increasingly difficult.
This past year I’ve had a lot of time to think. And while life now has new challenges – worrying about my kidney function and lung rejection, avoiding certain foods that may unknowingly harbor dangerous bacteria, being super vigilant about skin cancer since immuno-suppressant drugs make the skin more vulnerable – I would like to share with you some of the things I’ve learned.
It’s important to have doctors you inherently trust to guide you. After so many years as a CF patient I’d gotten pretty dang good at knowing what I needed. When I switched from my CF clinic to the new transplant center, not only did the whole getting-to-know-you process start over, but I was entering into a realm of transplant-ville unfamiliarity. There came a time after surgery when I was so down and frustrated I actually thought about giving up. One doctor in particular seemed to understand and served as my guide. With his help, and by putting one foot in front of the other, I slowly moved out of my funk.
My body is now fundamentally different and requires that I live with a new set of criteria. Being a transplant patient required me to learn the ropes of a new disease. Suddenly I had to pay close attention to every little thing, having no idea whether or not symptoms were related or important. This was terrifying. Life with transplant also brought a whole new slew of limitations. The most challenging for me was learning all the new food restrictions that come with immunosuppression after transplant, becoming more diligent about being out in the sun, and having to be extra careful to not get scratched or bitten by animals — even cute tiny kittens can give you cat scratch fever!
There is such a thing as too much free time. During my three weeks in the hospital and first months at home, life still revolved around my health: medicine times, feeding tube schedules, getting to pulmonary rehab for two hours per day. But at a certain point, I started getting more energy and I began wondering what I was going to do with it! Unfortunately I didn’t have a job to go back to, but I did find some really great places to start volunteering, including right here at Emily’s Entourage. It’s been a very rewarding way to spend my time.
Being careful can really pay off. I’ve always been a big fan of clean hands. After a transplant you have to be even more careful. I wash and sanitize my hands, I am very careful around children, I avoid sick people. My husband does too. So far I have been successful at not catching any viruses or bacterial infections. This is good because something like the flu virus can quickly become a big problem for immunocompromised lungs – we’re talking decreased lung functions, hospitalization, IVs, and possibly even getting back on oxygen.
Slow and steady wins the race. Going through a major surgery requires learning to listen to your body on another level. My 35 years of expertise with CF was whisked away from me after transplant. I had always been big into exercising, but transplant left me so weak that building myself back up proved to be very difficult and frustrating. I had to learn that pushing as hard as I could wasn’t always best, and that sometimes a little progress is better than none. And sometimes, you just need to take a nap.
It is amazing what the body can endure. When I got home, walking with my walker the 20 feet from the car to my front door exhausted me. Exercising every day helped me to slowly get stronger. At six months post transplant, I went on a vacation to Las Vegas and Utah with a group of friends for a wedding — my first time flying without oxygen in a long time! At nine months, my husband and I took our yearly trip to Montana (also without oxygen), which we missed the year before because of my health. Hiking, fly-fishing, and sightseeing outdoors is so much more fun with new lungs! I now fight my muscles to work harder, not my lungs.
With the end stages of a chronic disease and recovery after major surgery, self care, friends, and family come to the front and everything else fades into the background. There is a reason the transplant hospital wants to make sure that you have good support at home. It’s because there is absolutely no way to do this without the help of your community of people. I had my husband, mother, and my brother from Michigan while I was in the hospital. I had aunts from four hours away come stay with us after I got home. We had friends coming to clean, bringing us food, running errands, taking care of our pets. And we had a ton of help and emotional support from other family and friends.
You can find the most special friends in the least likely places. I’ve never been thrown into a situation where I made so many genuine, caring, long-lasting friends. Starting with my first day of the mandatory pre-surgery pulmonary rehabilitation, I met people with all different kinds of end-stage lung disease. We became a family. One year later, I still keep in touch with most of them. And I can’t see a time in my life during which these people won’t be there for me.
The further out I get from transplant, the more I learn and the more I’m able to enjoy life like a regular person. Now I can just wake up in the morning and go! I no longer have to worry about lengthy therapy and nebulizer treatments. If I want to take a trip, all I have to do is make sure my pill boxes are full rather than arranging oxygen and worrying about carrying all of my bulky equipment through security and onto the airplane.
Before transplant I always tried to live my life to the fullest because I never knew how long it would be until I got a lung infection that would set me back or do me in. There are still scary possibilities in my future, but now I can do so many things I wasn’t able to do before!
They say that transplant is a gamble. I rolled the dice and won. Thanks to the incredible generosity of my organ donor and support of so many people, my life is more full of possibility than ever before.
P.S. If you have not already registered to become an organ donor, please consider doing so now at http://donatelife.net/register-now/.
Laura Smith is a 36-year old living with CF in Raleigh, NC. Read more of her writing on her blog at http://catboogiesdream.blogspot.com/.