Just Keep Swimming

| by Brook Zander |

On March 14, 2015, I received a double lung transplant. Each year, there are less than 10,000 of these operations performed. Lungs have a higher risk of infection than any other organ because they are constantly exposed to outside elements through the process of breathing. I am sharing my experience with others in the spirit of love, hope and community. For all the patients on transplant lists and their families, please know that you are not alone and that miracles do happen.

I was diagnosed with interstitial lung disease in 1986. Basically, this is fancy terminology for, “you have a disease, but we don’t know what it is or how you got it.” I was prescribed oral steroids and remained on this regime for nineteen years. I hated the side effects that taking steroids had on my body, but it was the only treatment available that allowed me to breath. In 2005, my doctors took me off oral steroids and started me on weekly “bronchoscopies.” Thankfully, this treatment didn’t have as many side effects, but it did mean that I was put under while my lungs were washed with steroids on a weekly basis.

After ten years of the steroid injections, I started talking to my doctors more seriously about receiving a double lung transplant. It was not an option to only transplant one lung because of the high probability that the “bad” lung would infect the good lung. The doctors explained the pros and cons of the procedure and I elected to be placed on the transplant list. It wasn’t an easy process. I underwent hours of testing that involved very unpleasant liquids and tubes running up my nose and down my throat. If you’ve never had a tube snaked through your nostril, I can assure that it’s not a fun experience! After the test results came back, I started a pre-transplant rehabilitation program that lasted several months.

On August 26, 2014, I was approved for listing. At first, I opted not to be on the high risk donor list because I thought this meant that I could receive lungs from a person infected with HIV or hepatitis. Many conversations later, I understood that high risk lungs are inspected with extreme care to ensure perfect health. Many factors, outside the scope of transmittable diseases, can cause a donor to be classified as high risk. There is actually less than 1% chance that a high risk lung could carry any infection. I decided to accept high risk lungs because I was confident in the doctors and it improved my chances of getting the organs more quickly.

I received THE CALL at 1:50 a.m. on Saturday, March 14th. My head was racing with thoughts and emotions, “did I make the right decision, do I have everything ready, who should I call, what should I bring.” Happy. Sad. Anxious. Nervous. Completely and utterly overwhelmed. At 2:20 a.m. my transplant coordinator called back to let me know the surgery was on hold because the doctors that would perform my operation were tied up with an emergency in the operating room. At this point, it was uncertain whether or not the surgery would even go forward. I lay awake trying to process the reality that this could be the day I received a new pair of lungs, or not. This could be the day that I would get a second chance at life because another person had died. At 6:42 a.m. she called me back and this time it was certain, surgery was on, no turning back now.

My dad drove me to hospital while my thoughts continued to run. Would I get a chance to say goodbye to everyone in my family? Had I done everything in my life that I wanted to accomplish? Who would sort through the terrible mess in my room if I didn’t wake up? Is this really happening?

When we arrived at the hospital, I was immediately taken for blood work and given a room on the transplant floor. My mom, dad, brothers, sister in law and step-dad were all there. I was grateful to see their faces and talk to them before undergoing a procedure with no certainty of survival. I had complete faith in my medical team, but anything could happen.

At 10:30 a.m. I was wheeled into surgery and the last words I remember hearing were, “I’m going to give you something to relax you now.” My family and I were told that a double lung transplant can take up to ten hours to complete, but I was out in eight. I vaguely remember waking up in the Intensive Care Unit and telling the nurses and my family, “I’m going to be out of here in two weeks.” My family was overjoyed that I came out of surgery with my usually positive and defiant spirit intact.

The next week of recovery was a complete blur as my medical team tried to figure out the right dosage of medication to keep me comfortable without making me comatose. I was in and out of a state of delirium with no sense of time and a scary feeling that I was in a dream that I couldn’t wake up from.

The day things really started to turn around was the day I received Nar-Can. Yes, the same Nar-Can they use to shock junkies out of drug overdoses. No, I don’t know this because I have ever taken drugs, but because of my Emergency Medical Training. I was given NarCan because the painkillers left me barely conscious and I was unable to wake up and take my anti-rejection medication. It was definitely one of the most frightening parts of recovery.

The way Nar-Can works is that it immediately reverses the effects of the opioids in pain killers. One minute, I was unconscious and the next I was wide awake and feeling intense pain in every cell of my body. It was terrifying and a blessing at the same time because it allowed the medical team to figure out the right dosage of medicine to speed up my recovery. Plus, now I can actually say, “I know how you’re feeling” when I’m on call at the Fire Department and we get an overdose case.

Twelve days after surgery, I was transferred from ICU to the transplant recovery floor. After seeing a doctor or nurse every hour in ICU, it was kind of a shock to start fending for myself again. I was no longer tied to an IV pump and starting to gain mobility. I was so grateful to be alive and given this second chance to do the things I love with a healthy set of lungs. But, I must admit, the most AMAZING thing that happened in my recovery room was getting my hair washed. An eight hour surgery followed by twelve days in the Intensive Care Unit can leave a girl’s hair on the nasty side and I was ecstatic to have a clean head again!

I spent seven days on the recovery floor doing physical therapy and being monitored for any signs of infection. I was also getting acquainted with the medications I’ll take for the rest of my life. I received frequent visits from other lung transplant patients I met in pre-transplant rehabilitation. Having a community of people with first-hand knowledge of what I was going through really helped me stay positive and confident that everything I was experiencing was normal. I worked very hard during those seven days with the goal of going home in my head. I walked laps, did exercises and learned to trust my new lungs.

Unfortunately, I was released from the hospital on Thursday, April 2rd. It would have been much more fun to say that I was admitted on Pi Day and released on Good Friday. Joking aside, I was so excited to get out of the hospital and proud of my hard work. I even talked the nurse into letting me walk from the hospital to the car on my own! Those independent steps symbolized the beginning of a new life chapter. After years of carrying around an oxygen tank, I’ve been given this amazing gift of healthy lungs. I walked forward into a new reality where I can do the things I love without worrying about breathing. Throughout my journey, my motto has been, “just keep swimming.” It’s not always easy, but keeping a positive attitude and believing in yourself may be the most powerful medicine there is.

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