IT'S MY "RE-BIRTHDAY" - HAPPY 1 YEAR ANNIVERSARY!

One year ago today I was re-born. Thanks to the ultimate Gift of Life from a 22 year old young man who believed strongly in organ donation, I am here today to celebrate the One Year Anniversary of receiving my Lung Transplant! I said at the time I felt "Re-Born" and we started talking about making it to one year and celebrating my "Re-Birthday".

It has been a very long 2 year journey to reach this very special day for me and my family. Being a Lung Transplant candidate and, if one is lucky enough to get their lung, a Lung Transplant Recipient, is not easy and it is not fun. As my Transplant Doctor said to me the very first time we met: "While a Lung Transplant can be a life saving operation; make no mistake, you are trading one disease state for another because of all the medications you will have to take."

He wanted me to understand - truly understand - what I would be facing if they accepted me into their Lung Transplant Program. The side effects from all the medications can cause real problems for transplant patients and I am dealing with a number of those today. 

As I sat through 4 different Transplant Education Classes before my Transplant, we found out the cold hard truth of what it's like to go through the surgery, recovery and rehab. What we must expect being immunocompromised. All the lifestyle changes we must make, that you would never think of, if we want to keep our Lung healthy and prevent rejection. 

One of the things about having a Lung Transplant is that they are the most difficult transplant to perform and they have the least successful outcomes. We are told this before we get listed for transplant. I tease my Transplant Team that they like to scare us to death before our transplants, and they admit they want us to know what we will be facing post transplant.

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. 

First Time Out of Bed!

This was HARD work. But if I was to recover, I had to do what the Transplant Team told me to do. But the amazing thing was, now I was doing all this without ANY oxygen at all! I was now able to breathe on my own from the first day I woke up! It was like a miracle. I had nearly lost my voice and was on 24/7 oxygen up until surgery day. When I woke up I felt like a normal person breathing again! It was amazing! I could talk again like I always did, which my family noticed immediately. 

My First Walk!

I worked so hard while I was in the hospital but the nurses and everyone kept telling me how great I was doing, and I guess I was, because only 7 days after receiving my lung transplant, Loyola discharged me! That's rare to get discharged so soon. Loyola's record for fastest discharge is 5 days, so for me to get to go home only 7 days after my surgery was amazing. 

Me Going Home!

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.

Out Patient Rehab Begins!

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.

Getting an IV Saline Infusion for My Kidneys!

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.

Video: The Hike for Lung Health

I have been struggling lately with some side effect issues, an infection, fever to name a few and have not been able to exercise for several weeks. It's been frustrating but yesterday and today I picked myself up, and went over to the Fitness Center and got myself back on the Treadmill for 30 minutes. As hard as it was, I am so glad I did it and proud that I keep fighting and working at being as healthy and strong as possible when you consider what I've been through the past 2 years.

My family and I are having a quiet but celebratory dinner tonight to mark this very special date in all our lives. I'm not the only one that this affected; my whole family went through this with me. So it's appropriate that we get together and have a nice family dinner, which is all I ever thought about when I was sick. Just more time with those I love and that's what I'm getting. 

I am truly lucky and blessed. Our thoughts and a toast will go out to my organ donor and his family in his memory. Without organ donors like the young man who donated multiple organs and saved multiple lives, I would not be here. I am forever grateful.