From Sustaining and Surviving – to Living!

By Andrea Eisenman

Seventeen years ago I was just going through the motions of trying to keep pushing towards each day with a schedule of treatments, eating, napping, lung bleeds and more treatments. Then starting all over again the following day with no improvement but alternatively getting sicker. Inevitably, every three weeks I needed to be on IV antibiotics for three weeks. I alternated between inhaling Tobi one month and then Colistin the next. Life was a mish-mash of treatments, hospitalizations and IV treatments and trying to gain weight: A losing battle. I was always short of breath and constantly coughing up copious amounts of phlegm. All in the hopes of keeping my lung function from slipping ever lower. My last PFT before the “call” for my lung transplant was 13%.   I was just sustaining and surviving – I wasn’t living.

It seems like just yesterday and also at times, another lifetime ago, that I was in that situation. In dire need of lungs, using supplemental oxygen and trying exercise moderately enough to keep my body in some sort of shape. I got huzzahs at the gym for being there from people who didn’t need extra O2 to breathe. I also got looks at movie theaters and restaurants of maybe sympathy or people just wondering what was wrong with me.

Like a switch, it all changed rapidly. Once I had my transplant, it was like I understood what taking a deep breath in felt like… without coughing my brains out afterwards. Because of all the walking I did on a treadmill pre-transplant, I was able to get up and walk around 3 days post-surgery.

I almost felt “normal” like my friends who didn’t have CF, but with a serious drug regimen. I was able to eventually, live independently—travel, date, get a dog, volunteer, drive a car—I was liberated from the O2 hose. I was able to exercise like never before and learn to play tennis and bike outside. I do not do these things as well as my peers may, I never reached a high level of PFT, but for me, it was higher than I ever remember having. To keep it as high as possible, I make an effort 5-6 times a week to get in some physical activity as it seems to help me keep my lungs clear plus helps with drainage in my sinuses.

I had no idea that I would still be alive after so many years. And before going in for this surgery, I wondered if it was all worth it. To go through such an arduous process, to risk possibly dying during the procedure and to work harder than I ever had to before to survive. The answer now, I know, is a resounding yes. And it is always a risk, trading one disease I knew really well to one I had not a lot of personal knowledge of. But because having CF taught me so much on what to do when this or that happens, it was not like starting from scratch. I was a trained survivor.

My hope for sharing my story about transplant is that people considering the same surgery or those on a waiting list will feel hopeful hearing about someone who is still alive after 17 years. People no longer look at me like they did in the gym and wonder what is wrong with me – they ask what is so “good” about me! I am glad I can keep sharing with people why it was the right decision for me – and showing them in how I am living my life every day. In fact, I was at clinic for a checkup and someone on oxygen in a wheelchair asked me, “how long?” He saw my mask and I can presume saw his own possibility and future. I saw his wheelchair and remembered my waiting and was grateful for the opportunity to encourage him. I am thankful and fortunate to my donor family, my doctors, my family and friends who helped me along the way to be able to demonstrate that transplants give hope. I remember the wait pretty vividly, thinking I may not make it to a transplant. What it would mean for my mom who kept me alive and who I would leave childless, and my good friends who were supportive of my journey – even thinking my dog would wonder where I went. I’m glad I’m not asking those questions today.

 

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