The Lung Transplant Foundation is pleased to introduce a new column called “Get Busy Living.” Here we will feature stories from our post-transplant community sharing their experiences and what they are up to now. Get ready to be moved and inspired by the true life tales of overcoming obstacles, amazing transformations and impressive accomplishments of our post-transplant friends. Everyone who has gone through the lung transplant experience is an individual miracle with much to share.
By Harry F. Collins, Jr.
There is nothing special about me. I’m just a regular 59-year-old man who was given the supreme gift in life – another chance. I have no idea why I was chosen for this second chance but I intend to do whatever I can to help whomever I can in all ways possible.
I was a long-time smoker who came from a family where many relatives had died from cancer, including my mother. I knew smoking was killing me but liked it so much I was willing to take the risk. I always thought I could not live without a cigarette when, in fact, the opposite was true. My health had been great my entire life, except for getting bronchitis every year. I had never been sick and had never been in the hospital except for kidney stones. Each year my bronchitis kept getting worse, as did my cough. I shrugged it off and just kept taking medicine for the breathing. My breathing worsened to the point that, by the end of the 1990’s, I was forced to use a nebulizer and hand-held inhalers daily. Then the doctor told me the news. I had COPD. I am a college educated person; however, I had no idea what COPD is. In fact, I had never heard of it. I was relieved that it was not cancer. I was relieved I wouldn’t have to go through what my mother and all of my aunts and uncles had gone through. My ignorance on the subject would almost result in my demise. For some reason, I did not want to find out any further information on COPD. I wanted to smoke. So I did. The COPD got progressively worse, especially since I had not stopped smoking. Finally, around the year 2004, my breathing had caused me so many problems I was able to quit smoking. Don’t get me wrong. I did not want to quit. I did, however, realize that I could not exist any longer in the same mode. They say it’s never too late to quit but, for me, it was. One winter night I was going to take my youngest son, Ryan, to the store. When we walked out into the extreme cold and blustery wind, my lungs locked up. I could not get any breaths in or out of my body. I did not freak out but I thought all was over. I lost all of my bodily fluids. My son ran to get my wife to call 911. It’s funny what runs through one’s mind in a time like this. I did not think about dying. The only thing I thought about was that my wife was going to kick my butt for peeing in my shoes.
The 911 call enabled the First Aid crew to take me to our local hospital for help. There I met two doctors to whom I will always be eternally grateful. They got me through some rough times. I was in this hospital for several weeks and was on 6 liters of oxygen while at rest. I had become about 80 percent bedridden. The only time I would get out of the bed was to go the bathroom. I refused to get help with that. I was scared to get out of the bed and had to wear a PulseOx on my finger at all times so that my oxygen levels could be monitored. I was not in good shape. A drug was used to relax and calm me and keep me from the suffering that goes along with COPD. It sure worked. I told my wife the clock was running backwards. I called one of my step-sons, Austin, “George”, and I told my wife the room was full of bugs. I was totally out of it. The hospital was doing everything possible to make me comfortable. I was on a sherbet kick and was given as much sherbet as I wanted. Twice, I had eaten so much there was no more sherbet left in the hospital cafeteria. After I would go on my sherbet binges, I’d simply be given an insulin shot to bring my blood sugar back within normal limits. They knew my time was short and my doctor had told me so. He is a wonderful man. After he told me I did not have long to live, he hugged me with all of his might. I will never forget that feeling. I truly love that man!! Since that time, we have become good friends. To show what kind of a man he is and to show his sense of humor, I received the following email from him recently: “I have two friends named Harry. They both got a lung transplant. Glad I’m named Art.” That’s priceless!!
I have been a sports enthusiast all of my life. I played all sports and truly loved golf. At that point in my life, I was still coaching boys’ basketball in a recreation league. I just love sports but, at that point, all sports activities had ceased. I became a recluse to the bed or the couch. My productive days were over. I had always been a very independent person. Now, I depended on my family for everything. My step-sons, Austin and Colin, were instrumental in helping me with my oxygen or whatever I needed. My house is a 2-story Colonial and it literally took me 10 minutes to walk upstairs, even with help. I spent many weeks in the hospital and actually went back several times before Dr. White put me in touch with a doctor at Duke Medical Center. After several trips to Durham, NC, and back, my wife called the contact at Duke one day and said, “My husband is dying. You have to help him now.” My wife was told to drive me to Duke Medical Center immediately. This is a 3 ½ hour trip from where we lived in Christiansburg, VA. At that point I was on oxygen 24 hours a day which meant she had to get the tanks arranged for the trip. She knew I would freak out about leaving home like this because I had not been off of the couch in several months. I was afraid. The doctor told my wife to give me enough medication to sedate me and to drive me to the Duke Medical Center Emergency Room, and leave me there. This was not mean on anyone’s behalf. Their plan was to get me into the hospital quickly to be evaluated. That is, in fact, exactly what happened. She managed to get me there and told them she was leaving me there for evaluation. She then went home. When I awoke the next morning, I had no idea where I was. I was scared. The time of year was almost Christmas, 2009. That morning I was surprised to get a visit from 3 doctors, a social worker, a financial representative, and a coordinator. They explained everything in great detail, I was overwhelmed. I was happy to know where I was and to find out they wanted to help me.
There are many tests to take before undergoing a transplant. A transplant cannot be performed on someone who has other critical problems such as cancer. There are lots of obstacles along the way though, for good reason. Some of the procedures one must have are a heart catheterization, a heart scan, a lung scan, pulmonary function tests, numerous blood tests, an echocardiogram, a CT Scan, and any other tests deemed necessary. The reason I mention all of these tests is to simply make perfectly clear the fact that the wonderful people involved with saving my life really know what they are doing. They leave nothing for chance. Every last detail is covered. One has to also provide proof of insurance, and dealing with insurance companies on matters like this is tough. They know how much they will have to pay and approval sometimes takes a while. I, plus several of my buddies, had this same problem. Persistence and determination go a long way to fix this problem. Once all of the tests had been completed, I received a return visit from the team that had been there previously. They explained to me that all of my test results were good, except, of course, the lung tests. They also spoke the words I had prayed to hear, “You are eligible for a transplant”. They said that I needed to get into the pre-transplant rehab program immediately. I asked one of the doctors how long I had to live, and without missing a beat, he looked at me and said, “6 months at the best”. I appreciated his honesty very much. I tried not to, but I cried.
One of the doctors on the team that visited me is very involved with the COPD research in the state of North Carolina, as well as nationally and internationally. We seemed to hit it off pretty well. I respected him very much. He asked me if I would like to become the face of COPD on billboards in North Carolina. I told him I would do anything I could to help. The offer did, in fact, materialize, and on the billboard was a picture of a pig and me wearing oxygen. The slogan read, “Smoke a pig, not a cig.” This relationship with the Doctor would later lead to my getting involved with making speeches on COPD and transplant awareness.
A major requirement to having a transplant is that one has a full-time caregiver. For obvious reasons, one must move close to the Durham area. After much thought, we decided that my oldest son, Zach, would be my caregiver. My wife had two sons still in school so leaving them to stay with me would not have been practical. I have three other children. My daughter, Kristin, is married with two children. My two youngest sons, Brock and Ryan, couldn’t act as caregivers because they were still in school. Zach was my lifeline and did everything for me. I can never repay him for all that he did. Let me say this again. I would not be here today were it not for Zach!! I always say that Ryan saved my life that first night and Zach saved it this time. I’m so very lucky to have such a wonderful family!!! Zach actually quit his job to take care of me. He lived in Winston-Salem at the time. So, when I first started going to rehab, I stayed with him and we drove to Durham every day.
At the time I didn’t realize it, but going to rehab changed my life in more ways than I would have imagined. The obvious benefits of rehab were to help us get ready for surgery. There were probably about 20 people in the rehab program when I started. They were all there because they had end-stage lung disease. Some of the different diseases were COPD, Idiopathic Pulmonary Fibrosis, Cystic Fibrosis, Pulmonary Hypertension, and a few others. The rehab program consisted of an exercise regimen and classes. The classes were to educate us on all aspects of the transplant process and were instrumental in our understanding of things to come. They explained that there may be a feeding tube, a tracheotomy, and other subjects such as this. The amount of information to learn was overwhelming. That’s where Zach stepped in and helped me so much. Things I couldn’t remember he always did. He was my right arm. The other part of the rehab program was exercising. This consisted of a 5-day a week program for 23 days where we walked for 20 to 30 minutes a day, rode a stationary bike for 20 minutes a day, did some floor exercises and light strength training with weights. Of course, they provided oxygen for us to use while we were there. For any regular person, these exercises were nothing. For someone who can’t breathe, they were tough. In the end, I learned these exercises really played a significant part in my recovery.
As I mentioned earlier, rehab changed my life in more ways than one. I cherish the relationships I made there more than anything! I can’t explain why but everyone who had a transplant in the same timeframe I did holds a special place in my heart and life. We have developed a bond that will never be broken. I love them all dearly and we keep in touch. When we see each other we cry and hug. My response to all this is simply amazing to me because I’ve never been an outwardly emotional person, but this experience has changed that. If anything happens to any of these people, it’s like it happens to me. We all feel that way. Besides the fellow transplantees, the staff at the Center for Living is awesome. I feel the same way about them as well. I truly love them and appreciate what they do for all of us. Working with people who are complaining that they can not breathe is not easy but they do a remarkable job. They are truly gifted people. I can never repay them either for all they have done for me and my transplant friends!
I finally completed the pre-transplant rehab program and was placed on the transplant list. At the time, I moved to an apartment in Durham so I would be close when they called. Knowing one could receive a call from the Transplant Coordinator at any time was both unnerving and calming. I knew the end was close one way or the other. Every time my cell phone rang, my heart jumped. Probably the toughest part of this whole ordeal were the dry runs. A “dry run” is when one is on the transplant list and one is called by the Transplant Coordinator to come to the hospital for the transplant. Then for some reason the lungs are determined not to be good enough for transplant and one is sent home. I’m glad the organs are screened so well, but the process worked on me mentally. I had three dry runs before I received the fourth call on March 27, 2010, about one o’clock in the morning. I had been on the Transplant List for only 19 days. The coordinator called me and said there was a set of lungs and wanted me to get there right away. We had waited in the hospital for about 12 hours with no word yet on when the surgery would be. I was scared. I told my wife, if this one did not work and was a dry run, then take me home and let me die. I had had enough.
Thankfully, that night about ten o’clock they came to get me to take me to the operating room. As luck would have it, my wife, Sherri, my daughter, Kristin, my sister, Valerie, and all of my sons, Zach, Brock, and Ryan, were there when they took me away. We did a quick group prayer. I was nervous and very apprehensive. I was ready!
I remember the operating room being such a bright place where everything was extremely clean. That made me feel so good. There were about 6 people in the room when I arrived and they were working non-stop. I teased with the anesthesiologist and told her, if everything worked out, I would take them all out for dinner soon. That’s the last thing I remember until I woke up in the ICU. The operation had taken about 9 hours, and they repaired a hole in my heart as well. The operation was performed by a truly remarkable Doctor. This man saved my life!!! What else can be said about someone like that? One of my heroes in life!
This man seeks no credit and is one of the most humble men I have ever met. He’s simply a remarkable person! When I did wake, I had an IV in my neck and one in each arm. I had five drainage tubes coming out of my chest, a catheter, and 75 staples holding my chest together. I had wire wrapped around my breastbone holding it together where it had been cut. I had a ventilator tube down my throat yet I was the happiest man in town. I was still alive!! I could not believe how blessed I was. The first thing I remember, even before I was fully awake, was my nurse telling me not to bite on the ventilator tube. She was right. I chipped off my two bottom front teeth. I also remember thinking, if you don’t want me biting this thing, then take it out. That day happened to be my youngest son’s birthday. The first thing I remember doing in ICU, when I was fully awake, was singing happy birthday to him. We now have the same birthday! In the hospital, one is given a Bronchoscopy without any medication or anesthesia. Wow! That’s rough, very rough. The Doctor told me that, unless I wanted one every day, I had to get up and start walking immediately and start coughing up stuff. He told me in a nice and caring way that made me realize he was thinking about my best interests. I credit him with getting me started on the right foot. I did not want to have to go through that every day. I immediately got up and, with the help of many people, began walking around the ICU halls.
At this point I have to say something about my donor and his or her family. I do not know who they are or anything about them, but I, with all my heart and soul, want to thank them again for giving me a second chance at life. I wrote my donor’s family a letter but I have not heard back from them. I would not ever say what was relayed in my letter because it’s a personal thing between them and me. Having loved ones myself, I can only imagine how hard going through that process must be. I can only wish the best for them and hope to meet them someday! I am and will always be eternally grateful!
One of the saddest events of my life happened when I was in ICU. One of my buddies from rehab, Ed, had his transplant about four days ahead of me. I happened to be with him at rehab when he got the call to come to the hospital. I will never forget it. His beautiful wife, Brenda, was so happy, as were the rest of us. Everyone pulled for each other. Ed had a few complications in ICU but seemed to be taking a turn for the better. I saw him the first time I walked and we just looked at each other and smiled. That night I knew something was wrong. My nurse kept coming in and out of my room with a very distressed look on his face. Usually, they stay with you every minute. I also kept seeing Brenda walk past my room. She purposely would not look at me and now I know why. I had a feeling. I told my nurse not to worry about me that I was fine. I told him to please go help Ed. As hard as they tried to save him, Ed took a major turn for the worse and died that night. When I found out, I was devastated. I had just seen him, just smiled at him, just been through rehab with him, and now he was gone. I cried.
I was lucky and was in ICU for only two days. They took me to the step-down floor where I continued to recuperate. After six days, I was released from the hospital. I was scared to leave but they reassured me I was able to leave. After the transplant, one has to go through another 23 days of rehab at the Center for Living. I was released from the hospital on a Friday. Courtney, a physical therapist at the Center for Living, came in on her off day, Saturday, to get me started back into rehab. I will always be grateful to her for that and for how she and all the other CFL folks treated me. Like I said earlier, these people are my family now!! This round of rehab was better and much easier than the first round. I could breathe now and did not have the anxiety about the operation and the like. What a great concept they have here. They put people who have not had the transplant with the people who have had it so they can see how well we are now doing. Doing so really helps the beginners. Doing so certainly helped me when I started.
After my 23 days of rehab, I went back to Virginia. I hadn’t been home in six months and oh, what a thrill to get home. I have been so very lucky in this process and have had so few problems. I have had rejection twice, but it was cleared up both times. I had fluid on my right lung twice, but that was cleared up as well. With the fluid, the first time they took it out they numbed me in the right back area with a local anesthesia and then took a long needle and removed the fluid. I made the mistake of turning around and seeing the needle. Wow was it long! I thought about running but I was being held down. The procedure didn’t take that long and really wasn’t that bad. The second time I was admitted into the hospital and a drainage tube was placed in my back for several days. I have had no problems with fluid since. The only problem I have now is the Prednisone loves me and I have gained over 25 pounds, all in my neck and stomach. I’ll get it off eventually. I am back to work full-time because I feel that will help me live longer and have a better quality of life. I am also back to coaching a boys’ basketball team in the recreation league. Our team name is the Young Lungs. I truly feel, if I stayed at home and lay around, I would die much sooner. I have too much to do to die right now. I personally think there are three reasons why I was able to do so well in this endeavor: the doctors, the rehab program, and the transplant coordinators. I will always be grateful for all their care and attention.
On one of my return visits to Clinic for a checkup with my transplant pulmonologist noticed a flyer for an organization called the Lung Transplant Foundation (LTF). My Doctor explained that this organization was started by a man named Jeff Goldstein who had a lung transplant several years earlier. This is an organization that raises money for research to try and find a cure for rejection. Fifty percent of lung transplant recipients die within 5 years from chronic rejection. With my doctors urging, I contacted Jeff and became involved with the LTF. The people in this organization are wonderful and are simply looking for a way to beat rejection and BOS. We want to fix that. We have a vested interest in finding this cure. I give speeches about COPD and transplants in an effort to raise awareness on these subjects. I have been fortunate enough to address the NC Symposium on COPD, the NC Governors Conference on Aging, and the SE Regional Conference on COPD. I truly want to make a difference here and I firmly believe that “Nobody can go back and start a new beginning, but anyone can start today & make a new ending!” That’s my new goal in life! I won’t be denied!!
Harry currently sits on the LTF National Board and is forming the LTF.Virginia Chapter, newly elected to the Christianburg Virginia Town Council and …. Getting Busy Living!
We encourage all of our lung transplant recipients reading this blog, or those who know a story about a lung transplant recipient, to submit their own “Get Busy Living” story. Please submit your story to firstname.lastname@example.org. Include your name and contact information. Please limit it to four (4), single space, typewritten pages. Stories will be selected by committee and may be edited to fit our format. Should your story be selected for posting to our website, we will contact you to obtain your authorization for including it on our “Get Busy Living” page.
The lung transplant road is a long one, sometimes filled with pitfalls, but we are a resilient and determined population. I look forward to hearing about your post-transplant adventures. In the meantime, I hope/ ENCOURAGE you all /TO “Get Busy Living”.