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Second Wind Lung Transplant Association

Paula Huffman

Meet Ben & Curt, My Bosom Buddies

By Paula Huffman

huffman-paulaI have two new lungs and I affectionately have named them Ben and Curt. (Could it be that my surgeons for whom I will be eternally grateful were Dr. Benjamin Peeler and Dr. “Curt” Tribble?) My life is full now. I am rich with wonderful friends and a loving and supportive family. If I die today, it will all have been worth it just to experience being able to BREATHE!

Sometime soon I hope to return to the active work force. I’m a native of Hampton, Virginia but have lived in Norfolk, Virginia since graduating from college. I’m a Rehabilitation Counselor by profession, with a Master’s in Rehabilitation. I am also a Licensed Professional Counselor. I last worked and will return through a small consulting business I own which deals primarily in rehabilitation, disability and vocational evaluations.

I am married to my junior high school sweetheart. We have been married 27 years. My husband was an attorney and part time General District Court Judge. At the age of 48, he had a massive stroke while we were on vacation in Alaska. He remains a hemiplegic and is unable to return to work and his activities are necessarily limited. We have a 22 year-old daughter who graduated last year and is presently teaching at the Echo Hill Outdoor School in Worton, Maryland.

That is enough about me. Let me tell you of my Gift Of Life! I received a double lung transplant at U.Va. in the wee hours of March 29, 1999. Here’s what happened:

huffman-paula2I had just settled in to watch some NCAA basketball games on Sunday afternoon when my transplant coordinator called and said, “How soon can you come to Charlottesville, we have some lungs for you.” While I knew the call could come at any time, I was still stunned. I scurried around and got a few things organized, made some phone calls, got a friend over to help me get my things in the car, left my husband and took off. (My husband had his stroke in 1995 and I am his primary caregiver so he could not accompany me). I stopped along the way to pick up my Mother and drove the three hours to the hospital. I was amazingly calm.

I checked into the ER at 8:00 p.m. From there I was directed to the transplant floor where the admitting details were completed ( these were so minimal my Mother handled them) and I was prepped for surgery. I met one of my surgeons, for the first time, and immediately knew I was in good hands. I left the transplant floor around 9:00 for the anesthesia holding area. I remember leaving there about 9:30 but I never saw the operating room. The next thing I knew it was 7:30 a.m. and I was back up on the transplant floor in the recovery room, surrounded by smiling faces and the words,”It’s over. You did great.” I’m told the surgery took seven hours!

Apparently the removal of my old lungs was a tedious and difficult procedure because they had adhered to the chest wall cavity, as a result of years of infections. My disease, by the way, was bronchiectasis. I spent that first day on a ventilator snoozing off and on between a parade of different doctors. Among my first visitors were my Transplant Coordinator and the Director of the Transplant Program. I remember being suctioned twice and there was no mucus. Totally unlike my previous ventilator experiences where the congestion would feel like it was strangling me and I was sure that suction tube ran all the way to my toes! They removed the vent around 5:00 that afternoon. Boy did it feel great to talk. I called my husband and a few friends, all of whom wept with happiness.

huffman-paula3The next day I had an epidural to block the sensation in my mid section and I have to say it worked pretty well. I could tolerate the chest tubes and discomfort, with the epidural and some supplemental pain medication. The doctors were absolutely committed to keeping me as pain free as possible. And I have to tell you I was very impressed with how well those medications work. They didn’t make me feel woozy or sleepy. They just went right to the pain and made it stop. Also on day two the physical therapist showed up. He was about 6’2”. A full head taller than I am, and he wanted me to stand by the bed and “dance” with him. Must’ve made a great sight. On day three I was transferred out of ICU and into a private room.I discovered brushing my teeth no longer made me short of breath. Wow! I was nurtured and cared for by some of the finest nurses I have ever been associated with. They were committed to educating me about my medications and lifelong care. I was visited daily by a Transplant Coordinator who reviewed my medications and their schedule with me patiently until I knew it by heart. The medications were in my room and I was responsible for taking them at the appropriate times and charting that I had done so. All part of the “patient education.” The physical therapy became serious. On day three I walked around the halls. No easy feat with four chest tubes and those gurgling boxes into which they drain.On day eight the chest tubes came out and I walked on the treadmill for thirty minutes. It felt so wonderful to be able to walk and talk at the same time.On day twelve the fifty six surgical staples in my “clam shell” incision were removed and I was discharged to be followed on an outpatient basis. Detailed arrangements had been coordinated by the Transplant Social Worker. I left the hospital with a battery operated infusion pump, worn in a fanny pack, that delivered gancyclovir through a PICC line. And a grocery bag full of prescriptions (about $1100.00 worth from the hospital out-patient pharmacy). It was an absolutely glorious Spring day – April 9 – I had been transformed into a new me – one that closely resembled the old me, who no one had seen for twelve years. Fantastic!

The first thing I had my Mother do was take me to the grocery so I could buy some food that I liked. Everything about my experience with the University of Virginia Medical Center was first class – except the food was typical hospital fare. So off to Harris Teeter for all of my favorites. That night I cooked dinner.I spent ten days in an apartment (owned by the University and arranged by the Social Worker) and was discharged to home on day twenty-two, April 19.

My medications are manageable. Most of them I take at 8a.m. and 8p.m. I take one or two at noon and a couple at 4 p.m.. Here’s the medication menu:

My Medicine Menu

Prograf 5mg in the a.m., 5mg at night
Imuran 100 mg
Prednisone 20 mg
Pepcid 20mg, twice daily
Bactrim 800mg
Acyclovir 800mg four times daily
Magnesium 800mg three times daily
Vitamin C 500mg twice daily
Baby Aspirin 81mg
Nystatin Oral SuspensionX4 4 times daily
Calcium 500 mg twice daily

 

I will say in closing that I viewed my year of waiting time on the list as a “gift of time”. I spent it trying to simplify my life (sold our house and moved into a condo) and in training for what I knew would be a monumental challenge to my physical body. All of the people on the Second Wind Online Support Group who encouraged me to exercise and eat right and supplement my diet with vitamins and minerals, etc. were right on target. I believe that I owe some of my current situation to God’s grace in my life and some of it to working as hard as my diseased and oxygen deprived body would allow. It is paying off for me now. I hope my experience will encourage anyone who needs it to hang in there.

Without seeming to proselytize, let me tell you one more thing that makes me know God’s timing is perfect. Two days before my call I had received my monthly infusion of gamma globulin, which I must have due to an immune deficiency. Immediately after it, my body is at it’s peak of health, in terms of fighting infections. The day before my call I had attended a “volunteer educator” training session with my local organ procurement outfit, Lifenet. I learned what happens on the “procurement” side of transplant. How families are approached, what happens to the body, how the organs are tested and harvested, etc. It was all fascinating. And very timely.

Well that’s my story friends. I’m scheduled to return to see the doctor this month. I never in my wildest imagination dreamed my transplant would be such a pleasant experience. My heart if full of gratitude to God for this miracle in my life and to my donor family. Love to you all.

Paula Huffman (and my two new “bosom buddies”, Ben and Curt) June 1999

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