Pre transplant

This is a true expose on my life, my rebirth through a double lung transplant at UCSD Medical Center, and how it changed my life, and those lives of the people close to me.

In April 2006 I was diagnosed with COPD, for those of you that are unfamiliar with this it is Chronic Obstructive Pulmonary Disease, and although this disease can be carried through heredity (my mother died from it), I believe mine came through smoking and abuse I subjected my body to, while younger. The doctors at the time of my diagnosis were actually surprised that I had been living a somewhat normal life to that point. COPD can creep up on you, I had, to this point treated it’s symptoms as ‘normal’ things going wrong that happen as we grow older.

My initial pulmonary doctor, Dr. Sunil Santhanakrishnan, in Phoenix, would not allow me to leave his office from my initial office visit, without first securing an oxygen supplier, and promise that they would meet me at my house. I still remember the surprised looks when I went into work the following day using bottled oxygen. Fortunately, I had a caring employer, who not only covered the full cost of my health insurance, but the deductible as well, and stuck with me throughout my initial ordeal.

I remained in relatively good health for over a year. Then it happened, I was at work, and my boss Bill Smith came into the office. He told me that I did not look well and should take the remainder of the day off. I went home, laid on the couch and started watching ‘An Inconvenient Truth’, I fell asleep (sorry Dan Quail). When I awoke I was having a panic attack, I could not breath. I liken the experience to what I picture when a fish is removed from the water. Fortunately, my cell phone was within reach, I called 911. The operator was good, she calmed me down, asked if the door was unlocked (it was), and if I could be seen from it (I could). I warned her to tell the responders that I had two dogs in the house. They were there within minutes and whisked me away to the hospital.

The doctors at Good Samaritan, stabilized me, and that night I was visited by Bill Smith, who told me not to worry, everything would work out and be taken care of. Neither he nor I realized at the time, but I had worked my last day for W.W. Smith Construction.

I was in the hospital for two weeks, when I returned home I had lost twenty pounds; I was so weak traveling from the couch to the bathroom required at least one rest stop (about fifteen feet). I was unable to care for myself. My father (called by my roommate at prior to my release) came out from San Diego the following day. Took a look at me, and started packing my bags. The trip to San Diego was scary for me, for the first time since childhood I was not able to do even the simple things one does to care for themselves. I remember maxing the portable liquid oxygen unit (Helios) out during the drive over the mountains.

Upon my arrival in San Diego, after settling in, my sister and father gave me a ‘tough love’ talk. I could either stay in the house, wither and die – or I could fight back and try to live. Prior to my hospitalization, transplantation had been discussed with my doctor, Phoenix was just starting a program at St. Joseph’s, UCLA had a good program at Mount Sinai, as did UCSD in San Diego. My sister had researched the UCSD program, finding it to be one of the best (highest survival rates) in the country.

My pulmonary doctor in Phoenix wrote a letter of introduction/recommendation for me, my sister (who was teaching at UCSD), found the people to contact and I had my first appointment with Dr. Gordon Yung.

Dad drove me in, we went to the ‘UCSD Ambulatory Care Center’ in Hillcrest for this appointment. Doctor Yung examined me, and then we talked. He made a point of telling me that ‘transplantation was not a cure in itself, rather I would be trading one illness (COPD) for another – transplantation, if I could qualify. Dr. Yung gave me a synapses of what would be involved in the qualification process - more examinations, blood work, pulmonary function testing, a heart catheterization, bone density testing, x-rays, financial counseling, pulmonary rehab (you are walking a fine line, you must be sick enough to warrant the procedure, yet strong enough to survive it). In all, the process takes several days. You need to be current on all vaccinations, and must have a TB test prior to acceptance.

Upon returning home, my father and sister reviewed this with me, and established my prescreening training program. Up until this time I was using a walker to move around the house, stopping every few feet to regain my breath. I was tethered to an oxygen generator within the house, and on my Helios unit whenever I left. Measuring the width of the house (thirty eight feet) we determined that I needed to walk for six minutes without stopping in order to pass part of the pulmonary function testing. At first, I could not do ‘one length’, but over the course of a week, with much work, I managed to improve that to what I thought was a passing ability.

Still generally weak, when I was bought in for my qualification to begin, I was given a wheelchair to move around the hospital. Although it was nice not to be straining to move about, it was also humiliating in that once again, I was unable to ‘fend’ for myself. During the next several days I was poked, prodded and questioned until I was near exhaustion (which in itself was no great feat at the time). The conclusion of the ‘Pulmonary Function Testing’ was the six minute walk, believing myself prepared, I was surprised when the technician informed me that it was to be done without supplemental oxygen. All the training I did, all my preparation had been with my cannula and oxygen supply. She wheeled me out to the hallway, removed the cannula and asked me to stand, my oxygen saturation dropped from 97% to 86% in moments – concluding that portion of the test. Convinced that had sunk my chances I was, needless to say, depressed.

Several days later I was notified that I qualified for the UCSD Lung Transplant Program. I was #1 on the list! The next day I got the call requesting I get to Thornton Hospital asap as a lung had been located. Racing about my father and I got a bag packed and raced to the hospital. Going through admissions we called my sister to let her know of my luck. Proceeding to the Surgical Preparation Ward, I was surprised to learn my sister knew one of the nurses, who was the wife of one of the surgeons Dr. Anthony Perricone. The two of them chatted away while I had my vitals monitored, and was set to receive my IV’s. After a few hours, my father left to go home – see my stepmother, and take care of the dogs, taking my clothes and Helios unit with him (at this point I was on hospital oxygen).

After he returned, we spoke about what it would be like, living without my Helios, without a cannula hanging off of my head 24/7, how life in it’s entirety would be different, worry about the surgery going well…. At this point it was starting to get late, and I was becoming concerned, why had I not gone into surgery yet? What was going on? The people there told me they were running more tests and I needed to be patient. Finally, about 9:30 (5 ½ hours after getting into the prep ward), one of the surgeons entered and told me the lung had been deemed not viable. I was being sent home. Dad left to retrieve my clothes and oxygen as I could not leave without those. Kathy (my sister) remained with me. She emphasized that it was for the best that it had not happened, this was only a single lung, and it was best to err on the side of caution rather than face complications down the road. By the time dad returned, I dressed and was ready to leave it was near 11 pm, and I can still remember the quiet of the hospital as we exited to return home.

During the next few days I was on edge, waiting for the phone to ring. Convinced it would happen at any time, jumping up to answer whenever it did ring. Finally, speaking to the transplant coordinator, Stephanie Osborne, she got me enrolled in the UCSD Pulmonary Rehab Group.

I went in May 2, 2007 to meet with Trina Limberg who ran the program. After discussing the aims and goals of the program, my vitals were checked and I did another 6 minute walk (this time with supplemental oxygen – 4 liters per minute). I was able to complete 5 minutes of the walk, with a walker – covering 162 meters for an average speed of 1 mph and my saturation level only going down to 90%.

For the next five weeks I returned, twice a week for ‘Rehab’. The first hour was spent in class, learning how to survive with our breathing disabilities. Proper hygiene procedures, pursed lip breathing, medications and their effects were all covered. Then we proceeded to the ‘gym’ next door, where our therapists put us through our paces – light weights, aerobic exercises, breathing exercises, and finally concluding each session with the treadmill. Maria was my therapist, and I became quite close to her – we’d share stories of our lives, while I was on the treadmill. I started the process barely at 1 mph, and felt quite accomplished when at the conclusion I was up to 3.3 mph for a full 30 minutes.

I enrolled in the Pulmonary Maintenance Program, returning for supervised exercise periods twice a week. I started going to the gym in our complex every morning, using their treadmill daily to maintain the physical capabilities I had developed.

And I waited, and waited, and waited some more. Still finding myself excited at the phones ringing, my moods started to darken. Would I ever be called?