I will admit to being very scared heading into my transplant surgery. It was 11:30PM on Sunday night, November 2, 2014 when I got "THE CALL"; they had a lung for me. We were to get to Loyola as quickly and safely as possible. Most of the next nearly 2 days I do not remember. They keep you sedated while you are on the ventilator to make sure all is going well, monitoring everything there is to monitor. I am told they tried to wake me once but it didn't go well, so they put me back to sleep for another day. The next time they were able to wake me without incident, but being woken up after a major surgery like a transplant is not like waking up from any other surgery. I was restrained so I would not unconsciously pull at any tubes. I was still intubated and on the ventilator; I had two chest tubes coming out of my side, a nasogastric tube so I would not aspirate into my beautiful new lung, and a IV going into my neck as well as multiple IV's in my arms.
I was lucky and doing well and it wasn't long after being woken up they were able to extubate me and get me off the ventilator. Shortly thereafter tubes began coming out one by one. Chest tubes were removed, the IV in my neck, some of the IV's in my arms though not all. The ng tube was pulled. And as each tube came out, the discomfort they caused eased. However, the pain from the surgical incision was too much and required pain medication on a regular basis.
They do not waste any time getting you up and out of bed. I believe it was Day 3 that they got me up and into a chair, even while I was still in the ICU. By Day 4 I was moved out of the ICU and to the Transplant Floor in the hospital. I started eating real food, sitting in a chair twice a day and the physical therapists began to show up to get me walking again.
Then we must begin the very long and slow process of Rehab and learning how to "live" as a Transplant Recipient. Rehab began slowly with a Physical Therapist coming to the house and having me do exercises laying on the bed. As I got stronger, he had me begin various exercises standing up. Finally after about 8 weeks, I was told I was ready for Out Patient Rehab, which would be 2 days a week for 12 weeks.
There was so much more to do as my recovery continued. My daily ritual that I am required to complete and track on a tracking sheet for the Transplant Team consists of taking my vital signs (weigh myself, take my temperature, take my blood pressure & heart rate and do my spirometry) every single morning. I also must be most vigilant about taking my medications every day, 4 times a day, and some are to be taken at very specific times! Then I must wait before I can eat. So I don't ever get to sleep in anymore. It takes about an hour to complete all my morning tasks and get my medication taken by the designated time.
Every time I leave the house, I must put on my mask to protect my lungs and me from either catching something from the people around me, or things blowing in the wind. I carry hand gel with me and religiously wash my hands or use my hand gel. You have to think about everything you touch, everything. Like money is one of the filthiest things we handle, so every time I touch money, I need to wash or sanitize my hands. It's amazing what I must be attentive to when I go out.
All of this has been and continues to be very challenging. One year later, my surgical incision still hurts. They tell me it can take from a year to a year and a half - or never - for that pain to go away. The medication side effects have caused numerous problems that have required constant monitoring, blood tests, infusions, shots in the stomach and antibiotics to name a few.
But getting to One Year Post Transplant is a big deal. While there are bumps in the road, and likely always will be, I have worked so hard to regain my strength and get back into decent physical condition after being sick for so long. I pushed myself, set a goal and as many of you know, I accomplished something that one year ago, I thought would be impossible: I participated in, and completed, the 3 mile Hike for Lung Health for the Respiratory Health Association on September 20, 2015! Only 10 months post transplant! And to make it even more special, my whole family surprised me and did the Walk with me in a show of their never ending support! It was such a special day for us all! To have faced death, struggled through surgery and recovery and rehab and be able to walk 3 Miles in less than 60 minutes is something I am so proud of! I wasn't sure I'd ever see a day like that again and it was one of the best days I've had since my transplant.