So I will try to tell my story… the good, the bad and the ugly. I was listed November 1995 and was told to expect a year’s wait. They didn't even bother to give me my beeper until December. I was listed for a single lung transplant, either side was acceptable as they were almost equally bad --the right being slightly worse than the left. Sharp Memorial Hospital is whom I was listed through. AS some of you may recall, I live in San Diego, HMO land and had Aetna Choice as my insurance. Well, Aetna didn't have a contract with Sharp to do lung transplants -only hearts, kidneys and maybe livers. So I was sent to UCSD for pre-evaluation and I was not happy at all about that. To make a long story short, Sharp worked with Aetna and did develop a contract together. UCSD has a good reputation but I had being going to Sharp affiliated doctors since the middle '80s and did not want to change. This may not sound like a big deal but I was very upset and felt though the doctors at the other facility were good, the communications were poor. They went through over 6 transplant coordinators last year. Anyway, that part worked out. So I don’t get sued, UCSD is a good teaching hospital, Medicare approved and does lots of lungs. It just was not my choice.

So after I got my beeper, I really did not worry about being called. I had a very sick Mama who passed away of respiratory failure on Feb 27. I was her main support as much as I was able and I had really worried about who would do for her the things I did after my tx. God really does have a plan. Then in April, my husband's stepgrandfather fell and hit his head. He ended up needing surgery to remove a large hematoma (SP?) under his skull. While he was hospitalized, Mark's grandmother fell, broke her hip and died that night. She was 95 and had been active most of her years. We buried her May 2 and poor Ed, her hubby was to out of it to know he had lost his wife. It was about 3 weeks before he was getting his senses back and understood what had happened. Talk about a tough few months.

Then on Monday, May 6 at about 10:30 at night, the phone rang and it was the transplant coordinator. I was dead silent as she spoke. This voice says again, "Nancy, this is Joan at Sharp and this is your call. Is Mark there?" I totally lost my breath. (I am tearing up just writing this to you I can hear her so vividly) Wait a minute Joan till I can breathe then I yelled for Mark to pick up the phone which he did. Joan says now stay calm. We want you to come on to the hospital but the surgery will probably be in the early morning hours. She said everything looked very good but she also reminded us that something could be found that would cancel the op. We said we would be there within the hour. We only live fifteen minutes from the hospital.

When we hung up the phone I experienced for the very first time, total panic and fear. It lasted less than a minute and then I became totally calm and absolutely ready. Then we raced around the bedroom trying to figure out what to take. It looked like a Keystone Cops routine. I finally said stop. All I need is a book to read, house shoes and a robe. They will send anything else back home. I didn't even get my make-up.

We arrived at the hospital about 11:00PM and were taken to a room in the step down unit(the same area I would be in after CCU) Then we waited and waited and waited. The nurse assigned to me kept updating us. As it turns out, my surgeon (He always harvest the organs he is going to transplant and in this case it was my lung and a heart) didn't go to harvest the organs until about 7:00 AM so Mark and I basically spent the night just talking and looking at each other too excited to sleep. They took me into surgery about 8:00 AM and I asked Pat the nurse if she would take a picture of my old lung. Isn't that gross? Don't know why I wanted it but I still have it. They didn't start to replace the lung until 10AM and I was done by 1PM (only 3 hrs - start to finish) I don't remember much until that evening. Seems like I started coming out of it around 9PM. Mark was in CCU with me the whole time.

Well, for the past year I had worked on what I would do when I woke up and that was to hold perfectly still so the ventilator wouldn't bother me. I could feel it but had no pain. It was just there. If I tried to move I would gag so being the quick learner that I am I stopped moving - didn't take a genius to figure that out. So my year long fear of the ventilator was for naught. Just hold still. I started getting bored but of course couldn't say a word. Mark kept leaning over me and anxiously asking if I was ok or was I in paid. Finally I held a pillow against my thigh and wrote B O R E D with my finger. He started laughing and said 'You're bored!!!" He was delighted cause I know he thought I was suffering. So he turned on the tv and we watched NYPD Blue. Unbeknownst to me, before this he had told them to get the vent out as soon as it was safe. Boy was he a hero and the nurses loved him and let him stay with me constantly. Anyway right after NYPD Blue is the news at 11:00 PM. It was during the news, about 11:20 that they removed the ventilator and I got my first wonderful, sweet big breath. I had obstructive disease and when I was able to exhale as much as I inhaled - well I just couldn't believe it. In CCU at Sharp, all the rooms are private and a nurse assigned to each one. My nurse that night was a very special lady named Mary Montgomery - She is a big Michael Jordan fan. They gave Mark a room to sleep in so finally about 2AM he went to bed for about 4 hours.

The next morning I had eggs for breakfast and a Cheeseburger for lunch. All the solumedrol was kicking in and I would eat anything they brought me. I had no pain. In addition to morphine, they had given me an epidural that worked wonders. It totally deadens the area but you can think clearly, talk etc. I was in CCU about 5 days. I had Mark bring my makeup and was fixing my face with the nurses help. I had no problems. Then I was moved to intermediate intensive care (step down) and put in a room of my own. With the immune suppressed, I guess all the tx centers practice isolation. Folks coming to see me had to scrub their hands and wear a mask.

You don't get much sleep in these places what with the constant monitoring, daily blood draws, chest x-rays, weighing in. One day my surgeon came in and as soon as I saw him, I started crying. I told him my lung was doing great but my back pain was increasing(The epidural was out by this time). Turned out I was having muscle spasms and he gave me a different kind of pain medication that stopped it immediately. The only other problem I had was my GI tract. All the pain killers made the darn thing just go to sleep and quit working. So I was gaining weight like crazy as nothing was exiting my body. In come the GI specialist, a doctor I had not met before but a truly hilarious man. Anyway after going through some not so fun medications and bout five days of effort, things improved. I was the only person screaming 'Isn't it time for my enema yet?'

Those two things were the only unpleasant things I experienced. I still go by and see those nurses. They were truly wonderful as were the doctors. I was in the hospital about 15 days. The GI problem delayed me or I would have been out sooner. When we were going to check out of the hospital I was trying to find words to thank Dr. Adamson, the surgeon. He said to me "Nancy, God does the healing. I just know the technique" I love that man.

We live in a townhouse and the homeowners association was having all the tile roofs repaired and skylights resealed. Mark thought that would produce too much dust for me to come home to and he talked to the doctor about it. Turns out it could cause aspergillus so I was told I couldn't come home until they completed our roof so off we went from the hospital to the Kona Kai Club on Shelter Island on San Diego Bay. What a wonderful treat. The home health nurse even saw me there - isn't that a riot. Of course I was still not able to run laps yet but we did take a couple of walks and ate some great food, had a great room and a wonderful view.

If I had to repeat the surgery I wouldn't hesitate a minute. I have had a few set backs but none so far beat not being able to breath. I had a minor reject episode about 6 weeks out which I was told is very common and is treated or was in my case with higher doses of prednisone. I am now having a relapse of CMV pneumonia which I first had in November. I was on IV gancyclovir until mid December and am back on it. My doctor feels I really wasn't totally over it and it just came right back. So more aggressive treatment, this time. I will probably be doing IV's for two months. I do them twice a day and set up to completion takes about an hour each time. The drip part is 45 min, of the hour. Other than that, there are no restrictions on me. Right now I am fatigued but that will improve after a few days of treatment.

Some facts about post tx:

The incision that starts under the arm and goes up the back takes a long time to get over. There are numb spots which slowly come back to life. The feelings I get are more sensations than pain although I do get some occasional shooting pain which I think are the nerve endings coming back to life. I was numb all the way to the center of my chest. Now I have feeling everywhere even although some of it is a tingly feeling.

Hair, Hair and more Hair - this is probably more of a problem for women than men. Buy stock in depilatories, face wax. etc. Also, my hair which was straight as a board is now curly, especially in front.

Weight gain - I am up 35 pounds and am just now getting to the point where I hopefully can do something about it. I haven't been able to exercise as much as I should because of this virus. Though I am not gaining, it is going to take some work to get it off. I find this distressing as I have never been overweight. Again, I have heard this can be harder for women. I used so many calories just breathing before that the adjustment is strange. Now that my prednisone is down (5mg a day) my appetite is in control and I am not overeating at all but it AINT Coming off - so off to the gym as soon as I am better.

Well, I hope I haven’t bored you to death. If I remember anything else I think would be informative I will pass it on. If I can answer any questions, I would be glad to.