By Sandra Andersen
Hi, my name is Sandra Andersen aka “Chatterbox”. and I am now 64 years old.
I would like to add to my member story about my second transplant. My old transplanted lung was going into rejection and I was back on oxygen. This time I was a lot sicker than the first time. Towards the end I had to be pushed around in a wheel chair and could only walk short distances. I normally weigh 115 lbs. and was down to 99.
My kidneys were failing, chronic renal failure, not quite on dialysis. I am told it was the high doses of Prograf. I was to have a portacath put into my chest so that I could receive certain medications to protect my new kidney. So, I had the IVNG (twice) and Rituxin therapy and I did have to have dialysis with the IVNG. I’m told that was discovered by Cedars-Sinai and UCLA and now it is widely being used before kidney transplants.
So, on December 4th 2008, I received a call around 11 at night. We were just going to bed. We got up and dressed quickly and were at the hospital by 11;30 and they took me into the operating room immediately. Rather the room where they ready you for surgery. I received a right lung and a right kidney from the same donor. I’m told by UNOS that I am the 11th person in the country to have had that operation performed. Three surgeons, al working to save my life. Amazing. About 9-10 hours later I was in the Critical Care unit and mostly out of it.
I have to say that the next 30 days in the hospital were not much fun. Christmas and New Yeas too. (Except for the fact that I have a new great-granddaughter.) We ordered in from a deli across from the hospital but I couldn’t really eat the food, in fact nothing tasted good.
I had several weeks on a vent and I couldn’t talk and also my arms were in some kind of restraints so it was difficult to write, especially being flat on my back. The last week was in hospital rehab and then when I got home I had a therapist at the house 3 times a week, After several months when I could drive again I went to out patient rehab for 6 weeks and got strong. I now weigh 115 and no problems so far. Would I do it again, YES. Thank you for all of your support.
Sandra Andersen aka chatterbox. PS I hope to come back to the on line support group again soon.
Hello, my name is Sandra Andersen, I am now 57 years old and have had a left lung transplant in February of 2001 at Cedars-Sinai in Beverly Hills CA.
I was told that it looked as if I had the beginning stages of Emphysema around 1985. I didn’t take it seriously and just continued on with my life and moved to Hawaii. Then in 1987, after being tired of Hawaii and going to Australia, the reality hit me. Difficult to do some things like swim and dance. I could make it to the beach but not back.
I went back East, the same doctor said I needed to start using an inhaler. It was getting more and more difficult to dance without getting out of breath. I put off going to a certain restaurant because it was up hill and so on. It went like that for a few years. Using the inhaler more and more, going in for more breathing tests. During that time, I tried to quit smoking or at least cut way down.
Unfortunately, around the same time my youngest son was diagnosed with HIV/AIDS. I was under a lot of stress and couldn’t quit smoking. My health got worse. My son died and I was a mess. Finally, in 1991 my doctor said that the Emphysema had progressed as if I were in my late 70’s. I was 47. He said that given the progression of the disease that I would be lucky to have a year to a year and a half of life with the quality as it was and that it would continue to go downhill. Eventually the only answer would be a transplant. He also said that was pretty slim. I cried, and cried and cried. The only thing I heard was in a year and a half I’d be dead or close to it. By then I was down to smoking only a few cigarettes a day. I packed up what I wanted to keep and sold everything else and said to hell with it. If I am going to die I am going to see the world and go back to die in a beautiful place, Hawaii. I spent the next six months planning my trip and quit my job. At first, I considered just going straight to Hawaii and maybe using my money to open a Hospice for people with AIDS, but my yearning to travel won out.
I spent the next six months planning my “around the world” trip and left my job and friends and took off. I was supposed to see at least 31 countries, at least they were on my itinerary. My ticket went to a lot of places that I didn’t see. It’s just that while in Copenhagen, Denmark I met a man. He knew of my story but didn’t believe I was going to die. By the way, I didn’t tell him. A woman whom I had befriended and thought I would never see again did. She found me crying in the lady’s room at the restaurant where my future husband was the chef. I only told her what was happening because she caught me and I thought I was leaving the country in the next day or two and would never see them again. Well, I did leave the country a few times but returned each time to see him again. When I was to leave for good, meaning back on the plane instead of the trains, he said “you can’t leave” and I said “why” he said “you have to marry me”. That was in November of 1991. We are still married and I am still alive. We stayed in Denmark for three years. The doctor there gave me about 6 months to live. Man, I cried for weeks. Then we decided maybe there was some kind of communication problem, though the doctor did speak perfect English. After all, no one can tell when you are going to die. So, each year I just kept saying to myself, if I make it to Christmas… Finally, the winters were too bad for me and it was advised if I wanted to live I should leave the country.
We moved to Hawaii. I used to live in Hawaii and didn’t remember the humidity being so bad. While there I learned that my older son committed suicide and left me with two granddaughters. I don’t know if my ex-husband was being cruel or trying to shield me from more pain or hoping I would die before finding out. However, I wasn’t told of his death for nearly a year afterwards. So, after two years, it was time to move on again. But before that I had heard about a procedure called LVRS. “Lung Volume Reduction Surgery” I wrote to the doctor and took all the info to my doctor in Hawaii. He said I wasn’t a candidate. Even today the doctors at Kaiser don’t push LVRS nor transplant. Nonetheless, we moved again, to Northern California. We were there a year. Geez, I didn’t know it could rain so much.
We moved again, to Las Vegas, the doctor said dry heat. So! After being there 6 months and on January 1, 1998 I got really sick and didn’t realize that I had pneumonia. I was hospitalized and put on 02. Later on, in the year I met a man who had the LVRS and he gave me his doctor’s name. I went to him and we decided that I could go for it. I called that doctor in Hawaii after I was scheduled and invited him to come and watch, he said he would if I paid for the ticket. I worked out like crazy to get in shape and then finally in Sept. of 98 it happened. The only bad thing is some complications about something like TB. They thought I had cancer of the lungs. I was only to be in for a week but ended up being in for 6. I was on a trach/ ventilator and thought for sure that I would never leave the hospital again. Especially after they transferred me to a “long term care” facility. I was terrified. The isolation, the drugs, it was all too much. The drugs gave me INH induced Lupus which made it impossible to move really. The main thing you have to do after LVRS. I continued like that for nearly 5 more months. I fought the doctors and finally when I decided I was going to stop the drugs no matter what they agreed to let me quit. They can force you to take the drugs because you could be putting the public at risk. I had to start over again with the physical therapy. People ask me if the LVRS helped. I say yes, even with all of the things that went wrong, I still could feel a difference and don’t think I would have made it to transplant without it. I still had to use oxygen, but there were sometimes that I could take it off, like when sitting at rest and occasionally while doing simple tasks.
My doctor said “get coastal” get out of this dirty town and back to some clean air. So, we headed for the ocean. A few problems along the way with my husband’s employment but he always came through. Good thing he’s a “Chef”, he can work just about anywhere. We moved to Southern California and after we settled in I decided to ask about the possibility of a transplant.
In January of 2000, I started the procedure of being tested. Since I was on an HMO they took their time and sent me to a lot of different places instead of going in to a hospital and having it done all in one week as some do. By July, I was listed at Cedars-Sinai for a single lung. I was told the wait could be anywhere from 18-24 months. I was given a beeper. I was scared. I really started reading and paying attention to what the folks on Secondwind were saying. However, I had to ask myself. What was the alternative? So, terrified or not, it had to be. Like “ready or not, here I come”. Remember playing Hide and Seek? My waiting time was very short. One afternoon on February 3 of 2001 my cell phone rang and the only persons to have that number were my husband and the transplant coordinator. I just left my husband two minutes before and went down to a girl friend’s house. When I answered that phone and it was the hospital, I nearly fainted. I couldn’t believe they had a lung for me. My friend thought I had won the lottery or something. I called my husband upstairs and said get ready, they have a lung. So, I went back upstairs, took off all my jewelry and we were at the hospital in a little over an hour. We got there about 3pm and I was in surgery by 3:30 and out by 9:30 that evening. So fast, so unreal. My friend said I told her “I could die today”. I don’t remember saying that but it was the truth. Afterwards I couldn’t believe that I was alive. I was soooo happy to see my husband’s face. He never gave up on me. Not once. He was always there, telling me to be strong and that I was going to live. He was right. Here I am, nearly 6 months later and doing wonderfully. I feel so blessed and so lucky.
I am developing a beautiful rapport with my donor’s family. I have the left lung from their daughter Jennifer who was only 17 years old when she was in a car accident. We write, email and exchange pictures. I foresee more communication in the future and maybe even to help others with the process of donors or transplant questions. Whew, I have said a lot. Oh, and by the way, I don’t have to use oxygen anymore.
That’s my story. I left out a lot but this is still a very long introduction. Thanks for listening and thank you for being there with all of your stories and answers. Sandra Andersen aka Chatterbox
Revised: Tuesday, July 20, 2004