Susan Burroughs is the founder of the Cystic Fibrosis-Reaching Out Foundation, Inc. Below is her personal story. She is now 48 years old and is doing extremely well eight years after her double lung transplant. If you want to communicate with her about cystic fibrosis or transplant, please email her at email@example.com.
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Susan Burroughs- Double Lung Transplant Story 5/23/2000
My Double Lung Transplant Story
By: Susan C. Burroughs, CPA
TO LIST OR NOT TO LIST?
In, 1968, a little girl, seven years old, went to Birmingham with her Mom and her Dad. They told her parents that their daughter had Cystic Fibrosis. They could expect their daughter to live about 5 more years.
Now here it is over 30 years later, that same little girl walked in the doors at the University of Birmingham again. This time for a lung transplant consultation.
Friends, I was fine until I got out of the car and walked in the door at UAB. I was flooded with emotion. I grabbed Keith's hand and I started to cry. I wanted it all to go away. But I said "Thank you God for letting me live all of these years."
The consultation went fine. I had a pulmonary function test, blood gas, lab tests and Chest
X-ray. After that, I met with the transplant team and they said I was a perfect candidate for a lung transplant. They did not tell me anything I did not already know. I have read a lot about lung transplants and could probably tell them something. But what I did learn today is, I really liked the transplant team and I would put my life in their hands. Dr. David McGiffin is world known for his heart and lung transplants.
The next step is to go for the "official" evaluation that would take about 4 days. The doctor said he thought I would pass with flying colors. Friends, at this point, I am not sure what I am going to do. I wanted to share with you the dilemma that I am facing because each of you may face this decision one-day as well. The decision is not only "Do I want a transplant?" but "Where will I have it done?" and "Is this the right time?"
April 28, 1999
Well, I did pass the lung transplant evaluation tests with flying colors. (Is that really good or bad). On April 28, 1999, I was officially listed on the United Network for Organ Sharing list. (UNOS)
I am listed at the University of Alabama at Birmingham (UAB). We expect the wait for a double lung transplant to be about 2 years. People with Cystic Fibrosis do not have a choice on whether to get a single or double lung transplant. Because of infection, it is required that we get a double lung transplant.
I thought to myself, well it is two years away, if they called me today; I just would not answer the page. I needed time to get used to the idea.
THE WAIT - 390 days
April 1999 to May 2000
During "the wait", I wanted to get my body in the best shape it could be in for the lung transplant. I begin to work out more regularly at the fitness center. In addition, I tried very hard to gain some weight by tube feeding at night. I realized that the more I weighed the better the outcome would be after the transplant.
Also, during the wait, I started questioning why I was driving pass Emory University Hospital and going to UAB for the transplant. When Dr. David Nunley came on staff at our Cystic Fibrosis Center and also on staff with the Emory Lung Transplant team, I asked to be evaluated for the Emory Program. It had nothing to do with the UAB transplant team. I just wanted to be close to home and friends at the time of the transplant. On November 18, 1999, I was listed at Emory for the transplant and removed from the list at UAB. I was able to move all of my accrued time to Emory.
The year 2000 started out wrong. My oxygen SATs continued to drop and I was in the hospital and on Home IV's more than usual. Dr. Nunley said I would have to get used to it. This was probably my new "baseline". At this point, I knew that if I were paged, I would definitely go for the transplant.
This also made me more anxious. I was concerned as to why Emory was not doing any transplants. At this time, they had not done a single one in 6 months. Meanwhile, UAB was breaking records doing transplants. I questioned the Emory Transplant team about where "our" organs were and they could not provide me with any information. So... I called LifeLink myself to find out why they were not harvesting lungs in Georgia. They explained that that was not true. They had harvested 31 lungs in the last 6 months but they had all gone out of state. I could not ever get a reasonable answer from the Emory Transplant team as to why that many went out of state. They said things like: No one was a match or Dr. Vega is very picky. But I found that very hard to believe. What I realized: Emory just was not committed to the Lung Transplant program.
Another concern I had was the fact that while in the hospital, house doctors, interns and residents were the ones taking care of you when the primary physician was out of town or at home sleeping. I was concerned that with something as serious as a lung transplant, the primary physician that knows me should be right there writing orders if I was going to "check out" of this world. I learned that at UAB, the surgeon (Dr. McGiffin or Dr. Zorn) and the Pulmologist (Dr. Young or Dr. Weill) would be right there every step of the way. It would not be left to house doctors, interns or residents. I got great comfort in that information.
Therefore, in April 2000, I called UAB and asked them if I could come back. I explained that I only left because I wanted to be transplanted close to home but I now realized that I was jeopardizing quality care and even a transplant for
convenience. I was now ready for the transplant.
On April 12, 2000, UAB took me back and I moved all of my accrued time back to UAB. They explained that because I had almost a year of accrued time, that I was at the top of the list and I could be called at any time. That was ok because we were ready.
May 21, 2000
We got "the call" Sunday at 2:00 from UAB. They said that they had a potential donor but I would be backup. I was so pleased to know that they actually had my phone number! All three of us were together in the car about 2 miles from our home. We called the McKinney's and dropped Leah off at their house. We ran home and gave a key to our neighbor to take care of the pets and we were on our way.
We arrived at UAB at 4:45. We waited in a waiting room. My Mom made it from Mississippi about the same time we made it from Georgia. We met a girl and her family who was also there for the double lung transplant. We assumed she was the primary. The nurse came in and told her that she was not a match and she could go home. Keith's knees went limp and I thought he was going to faint. That meant (we thought) that the lungs would be mine. What we did not know was the primary person lived in Birmingham and she did not have to come and wait with us in the waiting room. She was a match and at 9:00pm they took her to surgery. They would not give me permission to go home until they were sure that her surgery was a go. She had been on the list for over 2 years and was a very hard match. Her family was so excited that they finally found a match for her.
Anyway... we are back at home still waiting... However, I really don't think it will be long now. They have done over 20 transplants at UAB this year so far. I really hope it is before my 40th birthday on June 28th.
May 23, 2000
It's Tuesday morning. We were getting our carpet cleaned and I was on the Internet ordering groceries from WebVan. My cell phone was lying on the kitchen counter. Monique Colie, a CF friend, had stopped by to pick up some medicine that she was supposed to pick up the night before. I was standing in the doorway talking to Monique when my cell phone was ringing. The person on the other end said "Susan, This is Connie from UAB!" I held up my hand for Monique to stay. Connie said "We have you a set of lungs. You are the primary. You have some time to get here. The OR time will be later this afternoon." I said OK. I am on my way. This was 10:00am. I was so thankful that Monique was there to experience this with me. I needed a friend to share this with.
Keith was in downtown Atlanta. He quickly came home. Leah stayed with the neighbor until Grandparents got there.
11:00am We were on our way. We arrived at UAB at 2:00. CNN who has been doing a documentary on me was called.
Unlike Sunday, when I arrived at UAB they immediately took me back to pre-op and starting prepping me for surgery. It was wham bam. We did not have time to think. We thought we would have some waiting time like we did on Sunday. They let Keith and Mom come back with me.
Meanwhile, BJ Hallocks sister, Carol Bohn, who lives in Birmingham, started arranging for us an apartment and brought food. She was such a wonderful help to our family for taking care of these major things.
3:00: CNN arrived with cameras in hand. They videoed the whole pre-op process. They interviewed me prior to the surgery. Even though there was anxiety in the air, we were laughing and joking with the male nurses. For me, there was an overwhelming sense of peace, which I know only came from God.
The three male nurses were fighting to see who was going to push the stretcher down to the OR. They finally let them all push it so they would all be stars.
Dr. David McGiffin was going to be the surgeon. He had to go to Florida to harvest the lungs. When we got the call that he was on his way back... It was time to go to OR. Keith and I barely got a private moment. Everything was happening so fast. But we stopped the world around us and I let him know that he is the most wonderful husband and father a lady could ever possibly want.
5:00 (CST) We called Jon Adams, our pastor and he said a prayer with us. My Mom wished me luck and I was on my way to the OR.
5:30 (CST) I am in the Operating Room, laying on the stretcher? praying up a storm. I thanked God for my life and the people in my life. I cried a couple of tears and then they told me to take big breaths and that was the last I remember of my OLD Lungs.
8:00 (CST) Matina (from CNN) called Keith from the OR. She said, "They had one lung out getting ready to attach the new lung". CNN was able to film the whole surgery and I will get a copy of it.
10:00 (CST) The nurse called Keith and said the operation was wrapping up and I was in stable condition. I was the lung transplant #212 for UAB.
CNN said it was truly a miracle when they took the old one out and the new one in. They said it immediately turned pink and inflated and was breathing for me. I did not even have to have a heart by-pass machine because the new lung worked while he took the other one out.
May 24, 2000
12:30am Keith, Mom and my high school friend (Jupie) saw me in ICU but I was still sedated.
I had four chest tubes, I was on a ventilator, and I had IV's in both arms and my neck.
Somewhere between 12:30am and 7:30am I had to have 13 units of blood and 7 units of plasma and 6 units of platelets. Things were not going well. I could hear everything going on. But I could not open my eyes or lift my hands for feet. They were saying... The doctor needs to get here fast or we are going to lose her. Her pressure is dropping. Is her family in the waiting room? I was scared I was going to die but I was sedated enough not to panic. I was praying. I had visions of my Dad and baby brother in heaven.
At 7:30 Dr. McGiffin casually said that I was bleeding lots of blood and I would have to go back to the OR. It scared Keith but he really did not know what had taken place in the last 6 hours.
10:30: Dr. David McGiffin came out and told Keith and Mom, my brother and his wife that everything was fine now. Apparently my old left lung was so bad that he had to scrape it out. It caused me to hemorrhage. He said it was not uncommon in patients with Cystic Fibrosis because the scarring is so bad. He was not concerned.
Dr. McGiffin said that my new lungs were some of the best he had seen. They were of the top 5! He was very pleased with my new lungs.
During visiting hours, my family came to visit. Since I was on the ventilator, I would try to write them notes. But, we all got frustrated. Keith said it was like trying to read something a drunken person was writing.
By that evening, I was off of the ventilator. I was off in less than 20 hours.
Only 8 days
By Thursday, I was sitting in a chair and was moved to the Heart/Lung Intensive Care Unit.
After only 3 days after the double lung transplant, I was walking around the nurse's station.
My oxygen SATs on room air were 98 to 100 percent. How exciting. I have slept with oxygen for over 12 years. Over the past year, I had to wear it almost everywhere I went. Now... no oxygen, no respiratory treatments. WOW!
My incision is all the way across my chest. It is shaped like a w underneath my breast. I had 71 staples.
After Day 6, Dr. McGiffin said I was doing so well, that I could be discharged to the apartment in Birmingham. I was a little scared. I had never been in the hospital less than 7 to 10 days in my life! How could I have a double lung transplant and go home so soon! I was discharged on May 31, 2000.
God had his hands all over this. This was a miracle. We never expected to recover at the rate I am recovering. I will have to be cautious. I will need to wear a mask for at least 3 months in public.
We know that the donor lived in Florida. She was 29 years old and she died of a heart attack. Please pray for the donor family.
THE TRANSPLANT TEAM
I could never say enough good things about the transplant team at UAB. Dr. David McGiffin performed my surgery. He is world known for his heart and lung transplants. In fact, during the week I was transplanted... I was his 3rd double lung transplant. He also performed about 5 single lung transplants that week also. The man is incredible.
Dr. Randy Young, Pulmologist, followed me as well. I really liked him a lot. He never seemed rushed. He always gave me all the time that I needed to ask questions. He never left the room until he was sure that I was satisfied. He would also ask Keith and Mom, "Do you have any questions?"
My transplant coordinator is Connie White-Williams. She is the person to call when I need help. She was great to explain the signs to look for and when to call. She was always pleasant and willing to help me out no matter how many times I paged her.
The nurses on the Heart/Lung Intensive Care Unit were incredible. Every one of them were very knowledgeable about lung transplants. They always made you feel like you were important and they would do anything for you.
If you are interested in learning more about lung transplantation at UAB, call Lexi Daniel at 205-975-8615.
THE NEXT 5 WEEKS
We were required to stay in Birmingham so that we would be close to the transplant center. Since my husband had to work in Atlanta, my Mom came to stay with me in the apartment. Keith and Leah visited me on the weekend.
During this time, I had weekly visits to Transplant clinic and bronchoscopys every other week. The bronchoscopys were done in order to obtain a lung biopsy. This is how they tell if you are going into rejection.
My bronchoscopy on June 19th revealed that I was in rejection. I had to take outpatient IV treatments of 750mg of solumedrol. If any of you have ever taken this before, you will know what it does to you. The most I have ever had was 60 mg and it gave me lots of energy and I never got any sleep. So imagine what 750mg did!
Also, for about 3 weeks I threw up every time I took my medicine. The cyclosporin (the anti-rejection drug) and me just did not like each other. The transplant team switched me to Prograff and I have not thrown up since.
Despite the throwing up and nausea, I was able to get out and walk. I was so excited that I could walk up hills and even flights of stairs! That was truly a miracle.
MY 40TH BIRTHDAY
June 28, 2000
Unfortunately, on my 40th birthday, I was admitted back to the Heart/Lung Intensive Care Unit. I had some form of pneumonia. My SATs were dropping, my heart rate was increasing and I was running a low-grade temperature.
Leah and Keith had come to Birmingham during the week to celebrate my birthday so they were with me. Leah was so excited because she had a birthday cake for me. Unfortunately, I could not eat any of it.
The next day, Thursday, I was intubated and was back on the ventilator. The next few days were critical until they could identify the "bug" and an antibiotic that could kill the bug. By Sunday, Keith talked to Dr. McGiffin because I was very adamant that I did not want to live on life support. Dr. McGiffin told Keith he would not have to make the decision to take me off of life support, because they would either find an antibiotic that would work or the "bug" would kill me. By Sunday evening, the lab report was back and the infectious disease doctors, identified that I was resistant to all antibiotics except for Colymycin.
That was their only hope.
Many prayers all over the world were being prayed. But God must have plans for me because within 12 hours, Keith could see on the monitors that the drug was working. The oxygen SATs were up and my heartrate was coming down. I was still in critical condition but the prognosis was getting better. I was sedated the whole time and missed about a week out of my life.
By the next Thursday, I was able to come off of the ventilator. The drug had done its job! All of our prayers were answered.
After being in the hospital for a total of 17 days, I was doing so well, that Dr. Randy Young let me return home to Atlanta! There is no place like home! When I was discharged my oxygen SATs were back to 98 - 100 percent, my heart rate was 100, and my temperature was 97.6 and my blood pressure was 90/59. You can't get much better than that.
According to Keith, Dr. Young stayed with me all night the night I was put on the ventilator. They also had one RN totally dedicated to taking care of me. After hearing this, I was thanking God that he helped me make the right decision by moving back to UAB for my transplant. If this had happened at Emory and the house doctor was taking care of me, I
don't think I would be alive today.
Big thanks go out to
Dr. Randy Young, Dr. David McGiffin
and the Infectious Disease Doctors at UAB.
TWO MONTHS AFTER TRANSPLANT
I am now back at home in Atlanta, being Mom to my 5-year-old daughter. I walk on the treadmill almost every day. Not to mention all the exercise I get just being a Mommie. Leah starts Kindergarten in September. I am so thankful that I will be the one to walk her in her classroom on the first day of school.
I can do more than I have been able to do in years. However, I am being cautious. I continue to wear my mask in public.
THINGS I DID NOT EXPECT TO HAPPEN
A few things happened that I did not expect to happen.
· My hair is falling out by the hand fulls. I don't look ball headed because I was lucky enough to have very thick hair. But it had definitely reduced the amount of drying time now! They tell me it is probably caused by the trauma from the surgery and the Prograff (anti-rejection drug)
· I got cataracts in my right eye. This is caused by the Prednisone. I will have to take this for the rest of my life. I had to get glasses for the first time in my life. I was not sure if I was seeing blurry because I just turned 40 or if it was a drug reaction. Maybe it is a little of both. Eventually, I can have the cataracts removed. But not so soon after the transplant.
· My feet are swelling. I am not sure what is causing this. But I try to keep my feet up as much as possible and sometimes when it gets really bad... then I take lasex.
The Cystic Fibrosis-Reaching Out Foundation is a non-profit Foundation under Section 501 (c) 3 of the Internal Revenue Code. Accordingly, the Foundation is not required to pay income taxes. Donors may deduct contributions to the Cystic Fibrosis-Reaching Out Foundation Inc, only to the extent that their contributions are gifts, with no consideration given.