Mortality

I went to a memorial service the other day, Cleo lived 17 years after her transplant, she inspired and gave hope to those both in pre and post transplant. It was good to see so many turn out on short notice too remember a person that gave back to those that gave her life. I had the opportunity to speak with her son Richard, who I had met earlier at one of the Holiday/Christmas parties. He was moved by the fact that so many came out to tell him what Cleo meant to them.

It also got me thinking of my own mortality. I am now just over two years post transplant, 50% of those with lung transplants make 5 years. Who will miss me when I pass? Sure my immediate family, but even then there seems to have been some distance that has come between us. I have no real close relationships at this time, have not allowed myself to grow close to any women. Almost if I am damaged goods - though I am determined to live my life and enjoy each day given by this selfless act from someone I never knew.

UCSD and their Post Transplant Program

So now it has been a bit over two years since my transplant. After our Lung Transplant Support meeting several of us started discussing why we chose UCSD, other facilities do more transplants. For me it was the fact that UCSD had what looked to be a complete program, there was Pulmonary Rehab to start with, that got you able to survive the transplant and taught you survival with your pulmonary disease. Meeting with the surgeons, and seeing their credentials, (along with the fact that the program in Phoenix that was starting up had all UCSD personnel in it) and their success rate. Then there was the post transplant program, Dr Yung and his staff managing and monitoring your health after the operation was completed. All throughout the process there is the Transplant Support Group, which is run by Karen Matthews (UCSD Social Worker), and is for both pre- and post transplant patients.

We meet twice a month during the day (1st & 3rd Mondays), this meeting is for the patients only. Post transplant patients can counsel pre transplant patients, and relate experiences to one another. Notifications of upcoming events, and health advisories are given. Care givers have their own meetings. Every other month there is a combined evening session for patients & caregivers with a speaker on relevant topics.

Cooking

I have always enjoyed cooking, my mother and grandmothers used to say if you enjoy eating then you need to learn how to cook. Cooking is not hard; it does take time to ‘play’ with various recipes until you get things to your own individual taste. Way before I became ill, friends would always seem to show up when I’d be cooking a big meal, holidays were always crowded, first at my house on Schooley’s Mountain (NJ), then at my house in Phoenix. When I came to San Diego it changed a bit, I was competing with my sister for the holiday meals, and still do not have a group of friends as I did back in Phoenix or NJ.

I still laugh about the misconception that Thanksgiving & Christmas turkey meals are hard to do. The biggest thing (to me) is allowing enough time for the bird to cook (I always stuff the bird, it gives the stuffing more flavor and keeps the bird moist, and get a big bird – leftovers are not that hard to dispose of). Choosing the sides and desserts was often harder than making the meal – there are those mandated by family tradition – mashed potatoes, creamed onions, candied yams/sweet potatoes, cranberry sauce…. and then their were favorites such as pecan pie, pumpkin cheesecake (thank you Mara). Whatever the menu, I always try to make extra, just in case someone brings someone, or a friend just happens to show.

In recent times, I’ve started cooking a fair amount of Italian meals, don’t know why, just kind of happened. Puttanesca (spaghetti sauce rumored to have been what the cooks would make for the street girls from what was laying around the kitchen), Veal Scaloppini with Mushrooms in wine, Osso Bucco to name a few. They are not hard to do, and actually do not take all that long to prepare. And cost a hell of a lot less than going out for the same meal!

Here is my recipe for Puttanesca (for 2 with leftovers)
Ingredients:
2 boneless, skinless chicken breasts sliced
crushed garlic (about 2 cloves)
olive oil (bout 1/2 cup)
two cups of tomatoes (about 6-8) cubed
bunch green onions sliced
capers (2 tablespoons)
anchovies (a 4 oz can)
basil & oregano to taste
crushed red pepper to taste
black pepper to taste
tomato paste (small can)
black olives (can sliced 8 oz.)
Cook sliced chicken in 1/4 cup olive oil and 1 clove crushed garlic till pink is gone. Add rest of ingredients and simmer for 20 minutes over medium flame (burner). Serve over pasta.

Getting back in shape

Immediately after release from the hospital, I found myself quite weak. Yes, now I could breath, however being laid up for a hospital stay robs you of muscle tone and endurance. I started exercising with light weights and using the treadmill in the community gym daily. It became an ingrained routine, rise, exercise, then start the day.

Personally, I recommend getting a dog as soon as you are able – going for the twice (if not more) daily walks is a good way to regain the lost muscle tone and endurance. Having something dependent upon you is also good psychologically - as opposed to being reliant upon others as had been in my case.

Hula is my pup, I rescued her at Helen Woodward (a shelter here in San Diego). She was 11 months old when I got her. She is the first dog (and I’ve had a few) that I have ‘crated’, she became part of my life quickly, our walks in the morning are now approximately 2 ½ miles each morning. We do shorter walks in the evening.

I’ll admit (sadly) that I am not ‘hitting the gym’ as often as I’d like, but my life has gotten active again that I feel I make up for the lack of weight lifting and static exercises by doing ‘chores and yard work’.

Health Insurance

Now the thing about health insurance is, they are a for profit organization, not a savings plan. Yes you have and are paying those loverly premiums monthly, and one would assume that therefore they, the insurance company, would be there to assist you in your hours of need. Think again.

My case in point, when I was employed with W.W. Smith Construction, one of the perks was that Bill Smith (my employer) not only paid my premium, he covered the deductible as well. I know, unheard of in these days & times, then again he was that sort of person. We were insured through HUMANA, our policy had a $5,000,000 lifetime cap, and you needed to be preapproved in order to qualify for the transplant program. I went through the entire preapproval process, and HUMANA has a special division of their company just for transplant patients.

About 10 months after my transplant I received a call from Bill’s office telling me that they were being forced to terminate health coverage for the employees. Seems that HUMANA was now raising his rates $2600 per month because of claims paid on his account (I had used $273,586.41 of the five million benefit).

I was then put on MediCal, as with my preexisting condition all private insurance was priced through the roof. Medical in their infinite wisdom assigned me a monthly spend down of $864 (this is out of pocket expenses), as I have so much income (my SSI disability). I have since qualified for Medicare (being disabled with lung disease). I was told to consider a ‘Part D’ plan to cover medications in addition to the Medicare Medical coverage I have. However once you do the math, I would be spending a lot more on my medications with that coverage (as I would then lose my eligibility for patient assistance) than without. Catch 22 revisited.

Dealing with MediCal has retaught me the meaning of patience. Calling the local office with a question will typically get you 45 minutes in the phone tree, after repeatedly answering the same questions you will get a case worker who will then ask the same questions again. After going through your case history (workers are assigned on a random basis – each time you call), you are then told that you should call the state office in Sacramento, who will then refer you back to the local office, and you begin again.

Returning to work...

Returning to work, well if my doctor had his way I believe he would have all of his transplant patients retired, or at most working from home. Working means exposure to the outside world – disease, illness, dirt…. All good things he wants us to avoid. However, in May of 2008 he gave me his blessing to return to the workforce.

I had not worked since my hospitalization in 2007 although Bill Smith did keep me on the books (and paid my health insurance until Humana raised his premiums for doing so by $2500 a month). I’ve worked construction in one form or another since high school, trading in my toolboxes in 2004 to work in the office. I still enjoy the industry, its people and the sense of accomplishment with a projects completion.

I found a position as a Project Engineer with a smaller general contractor out of Carlsbad, who agreed to take me on a trial basis for 30 days. He would pay me $800 per week, and after the initial 30 days I would get $60,000 annual and my benefits. Being a trusting soul, I believed him, and started my position June 1.

By mid July I was becoming concerned. He was still paying me my trial $800 per week (under the table), and had made no effort to get me the medical coverage promised. I was not only doing my Project Engineer duties that we had discussed, I was also his Site Supervisor and Project Manager. By issuing him an ultimatum, he finally started paying what he had originally promised, however he was still doing it under the table, though he promised (again) that he was setting up with a payroll service and I would be ‘legal’ soon.

The camels back was broken towards the end of August, when he instructed me to order non approved materials for a job. Refusing I informed him that ‘as my name was on the submissions’, only those materials would be used unless he obtained the clients permission ahead of time. After listening to him rant and rave how I was an ungrateful SOB, not appreciating ‘all he had done for me’, I walked to my car, retrieved all of the blueprints and documentation for the jobs I was working on and turned them over to him. I left him standing in the parking lot with a lost look on his face. He called for the next two weeks promising me the moon if I would return (seems everyone else quit at the same time).

I have been unemployed since then, the longest period of time in my life. However I am determined that I will not return unless I can find a reputable company that will treat me as I should be treated - as a professional.

On a sad note

Another friend has left us. Yesterday Jon E died awaiting transplant of a new lung. I met Jon through the UCSD Transplant Support Group when he and his wife came out from Tucson, where they wintered, they summered in Maine. He loved to fly, he really wanted to get back behind the stick again, however the doctors told him without a new lung that was not possible. Two weeks ago Jon was admitted to the hospital as his home oxygen equipment could no longer support him. For the first time in months he regained color in his face and hands (his fingers were no longer blue). The new drugs they were administering showed promise to correct the pressure on his heart allowing him to remain on the list.

He was to be transferred to a special care facility as it was felt that his needs did not warrant hospitalization. His wife went to several in the area and selected one close by that said they could care for him. They had a special floor for pulmonary cases. However, when Jon was taken, by ambulance, it was determined that this facility would not meet his needs. Jon was returned to the hospital where he expired awaiting a room assignment.

We have lost several people in the last month and a half in addition to Jon. Bob D who was a year and a half out from his transplant, he was another friend who got me back onto the golf course and shared his experiences with me. Chloe who was 17 years out from her surgery and an inspiration to all of us. To me, Jon was the saddest in that he did not get the opportunity to have his rebirth and experience life without assisted breathing. Every day we wake is an opportunity to live again which we would not have had without the generous gift of a stranger.

One year out, gone through my annual physical, everyone tells me how good I look and how well I am doing. Believe it was two weeks later I awaken about 1 am with a fever of 105. Feel so bad I cannot get out of bed, achy, nauseous, dizzy, cramping – just want to crawl into a hole and die bad. Thankfully my cell phone is within reach, I call dad – he comes in takes my temp again 106. He calls the On Call Transplant Coordinator who asks if I am in Emergency yet, and then why not.

Getting out of bed is a monumental effort, sliding on the jeans & t-shirt takes all my concentration. It takes 30 minutes to get out of the room and downstairs as walking is almost too much effort. Dad threatens to call the ambulance several times with me refusing (I still remember the charges from the last time). Finally get into the car and we race to Thornton Hospital, by now the Transplant Coordinator, Suzanne, has called in and they are waiting, I am rushed into an exam area, vitals checked, blood drawn…. I remember signing some papers, and then being put into the cat scan, then coming to in the ICU. I turned on the TV and was puzzled as to why there is football on so many stations, the nurse comes in and tells me it is Sunday why wouldn’t there be? This is news to me as last I remember was Monday morning….

There is still debate as to what happened that night (and in the days that followed), popular belief is that one of the immunosuppressant drugs (Cellcept) was working too well allowing a virus to penetrate my system, while another drug (Prednisone) covered its effect until everything cascaded. All in all I was lucky, I lost a week of time that I will not recover – and yes there are some interesting stories as to things that happened then…. Apparently I was hallucinating quite extensively during that time, I also received another scar on my belly where they did exploratory surgery to see what was going on inside. I remember none of it.

Spent another week in ICU before being transferred to a private room. Once again I had an IV tree with more bags, pumps, whistles and bells than you would think possible. I was still too weak to get out of the bed other than to stagger to the recliner (with assistance) to watch TV. After several days in the private room, and eating solid food once again, I begin to recover my strength, I am able to do short walks using a wheelchair to support myself and trail my IV tree. A week later there is talk of going home, although I will need to continue my IV antibiotics for a week through UCSD Home Infusion.

Post Transplant

At first it seems as though I am returning to the hospital consistently. In reality, it is twice a week. Mostly we are trying to get a balance of the drugs that will keep me alive. These include steroids, immunosuppressant/anti-rejection drugs, antiviral drugs, mineral and vitamin supplements. The biweekly visits go to weekly and then every other week.

I return to the rehab program, now I rate private sessions as there is concern of infection, whenever in public I must wear a mask (this gets me some strange looks when I go to the bank). Unknown to me at the time, I am Maria’s first patient that she has worked with from pre-operation to post operation. Through many weeks of efforts (two weekly sessions at the clinic, and daily trips to our association gym), I rebuild my muscle tone and stamina. I start walking my step mothers dogs through the neighborhood.

One morning my sister calls and asks if we have heard the news, there are wildfires raging through the area and much of San Diego is being evacuated. The phones calls start flying, yes the doctors want me out of the area, quickly! I am to call in as soon as we get settled and away from the smoke. I pack my car with clothing, my computer, and some personal possessions, I get one of the dogs and up Route 5 I go. Palm Desert is the immediate target, Paige, my stepsister, is looking for a hotel which will take us (dad, me & two of the dogs), Gail is to stay with Paige in her apartment with the third dog.

The roads are covered with what looks almost like heavy fog, opening the windows reveals it to be smoke. I wear a mask for most of the drive until I am passing though Camp Pendleton and it begins to thin. As I head east I am able to open the windows and allow fresh air into the car. As I approach the wind farms outside Palm Desert I pull to the side of the road and call Paige who gives me the address and directions to the motel. The motel is nice, it has a clean exercise room, a wonderful breakfast bar, that is a cut above most, internet connections and even an area for guests to walk their dogs. It is quickly filling with refugees from the San Diego area. This becomes our home for the next several weeks while the fires run wild in San Diego. It is the first time I am separated from the doctors since enrolling in the program, it is a mixed bag of feelings – I worry about what could happen being so far away, yet it is liberating in that I do not feel like the doc is looking over my shoulder.

We stay there several weeks before getting the all clear to return to San Diego. Something within the household has changed, the chemistry between my father, stepmother and myself. I am more confident, and growing stronger daily. I am hitting the gym daily and doing walks, starting to do more around the house. I’ve started cooking again, at first a meal now and then (without being on oxygen I can once again use the gas stove and barbeque without fear), which grows with frequency.

The doctors seem happy with my progress, my visits are now every other month and will soon go to twice a year. I ‘graduate’ from rehab, and though I will return to visit, it is sad to say farewell. I continue with the UCSD Heart Lung Rehab Group, Karen Matthews our social worker will become an integral part of my new family.

The transplant and recovery

August 2, 2007 sitting at the counter in the kitchen I answer the phone. It is Stephanie Osborne, one of the UCSD Transplant nurses, she nonchalantly asks what I am doing, I reply not a whole lot, she asks if I’d be interested in getting some new lungs – in a tone as if to ask ‘would you like to go shopping’. Nearly falling off the stool I reply yes, she says there is no rush – the lungs are not here yet, but they would like me in the hospital asap so that they can prepare me. I call my sister, no response – leave a message at the tone…. Call my father, same thing, damn! In five minutes (a lifetime it seems) dad calls, he’ll be home in 20, get ready. I grab my book that I am reading (I know there will be time to read), and charge my Helios unit.

Registration is much quicker the second time, and soon we are back in the Surgical Preparation ward. Kathy arrives, Dr. Perricone’s wife is again on duty there, it is so familiar yet there is an excitement this time that seemed to be missing the first time. Once again I stuff my personal belongings into the plastic bag, retaining only my glasses and book.

Vitals are checked and rechecked, additional forms filled in, signed and witnessed. And the waiting (for me) begins. Unknown to me is that while I am waiting, Dr. Michael Madani has flown to Las Vegas, examined, evaluated and harvested what will become my new lungs, and is flying back with them. He called the transplant team after removal to let them notify me and get me ready. His flight landed at 6:30 pm, by 7:00 I am in the operation theater, sedated and the operation begins. Eight hours later I am wheeled to the Surgical ICU ward, Dr. Madani, after a short rest had another transplant operation that evening/morning. I sort of remember awakening and seeing him in the chair in my room awaiting my return to the conscious world.

The ICU memories are fuzzy as they kept me fairly well drugged for the initial period while I was incubated. I remember the doctors and nurse removing the throat tube, and breathing for the first time, without supplemental oxygen. Anxiety and fear had me requesting that I keep a cannula with oxygen flowing close at hand for several days. The nurses in the ICU unit were fantastic, aside from the fact that you never really saw them – they wear gowns, masks and gloves when they come into the room, but they answered my questions, turned me (seemed like just when you would get comfortable in they would come – time for the other side…). I was there for one week, before being transferred to a private room.

UCSD Thornton Hospital is unique (at least to my perspective). There are palm trees in the lobby, along with a player piano (a baby grand), comfortable seating – were it not for the personnel moving about in surgical outfits and white lab coats you would believe yourself to be in a hotel. The rooms themselves have actual furniture you would find in a hotel room – with exception to your bed and bed tray. You are given an actual bound menu to order your meals from, and the food seems much better than one expects in a hospital (though still sort of bland to my taste). Although people entering my room still were required to wear the gowns, gloves and mask, the atmosphere is much more relaxed. And I am breathing on my own!

The nurses still are checking and rearranging my frequently, a therapist now starts to come twice a day, trying first a vest (similar to a lifejacket) which vibrates and compresses to loosen anything in the lungs. The doctors come by several times a day, and several times students are bought through to see how I am doing. (This is a teaching facility). By the end of the first week, I am getting out of the bed and starting to do short walks – although I now must wear the mask when I leave the room. Walking with the mask is difficult, my breath condenses on my glasses and the mask is difficult to breath through – but slowly, my strength returns.

Dad, Gail (my stepmother), and Kathy are frequent visitors. Kathy brings me an ipod (a first for me), with several hours of music on it. This gives me a break from daytime tv, which in itself is a punishment, though perhaps it is the drugs they are giving me, some of it holds my interest. I find it difficult to sleep through the night (again probably the drugs), instead I find myself dozing off for mini-naps. I’ll be watching something on the tube and next thing I know something else will be on.

My strength returns, the walks get longer. The gowns disappear, and soon I am able to see faces again. I am again able to start wearing clothes again. Each day I awaken I am thankful for life itself. I will not take for granted the breath that keeps me going.

Finally, after several weeks in this room, I am told it is time to go. That morning an aid from the pharmacy comes by, he reviews the drugs that I will be taking – the list is extensive, and the timings important – these drugs are to be taken an hour prior to breakfast, these after breakfast, these after lunch, these an hour prior to dinner, these after dinner, and finally these at bedtime. All very confusing, however there is an illustrated chart (pictures of each pill) with the times and quantities to take. Soon this will become a habit.

Upon returning home, I look at the now silent oxygen generator sitting by the foot of my bed, no longer will I be constrained in my household movements by its fifty foot hose. The unused Helios reservoir and unit are also there. Tomorrow I will gather up all of the unused cannulas, hoses and other materials that others could use and donate them to the Rehab Clinic once I begin the Post operative Rehab.

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?