Lung Transplant – One Woman’s Success Story

Harriet Boger, Lung Transplant Patient

Author: Harriet Boger, Lung Transplant Recipient

As I write this blog, I am on Marco Island with my sister. We played 18 holes of golf, walking the course and pulling our carts. We also play tennis every afternoon and have played both bocce ball and croquet too. I walk on the beach every day (of course, always wearing a cover-up and hat as directed by my doctor), and reflect on my life. This is definitely something I could not have done the 2 years before my transplant.

I am so thankful for every breath that I take, and want to share my story to give people hope.

Road to transplant…

I had my transplant on February 26, 2008 – that was just 4 short years ago. I clearly remember the day I was told that I had Idiopathic Pulmonary Fibrosis.

I used to love to hike in the North Carolina Mountains, but was finding it harder and harder to breathe when I was walking. I thought perhaps it was because I was not exercising enough so I tried to be more active but the shortness of breath continued. I decided it was time to see my doctor about this and in August of 2004 I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF). I remember the day my doctor called and told me. After the news, I immediately hung up and went on-line to look up the condition. I read that there was no cure, and that as it got worse there would be unrelenting suffocation. And most of all I was shocked to read that the life expectancy for this disease was 3-5 years. I was alone and burst into tears.

For the next three years my lungs rapidly declined. I did not want anyone to know. My PCP sent me to a pulmonologist who was trying to treat the disease with steroids and harsh antibiotics but the ability to breath only got worse. I told my husband and finally my sister. She too looked up the disease and kept suggesting that I look into having a lung transplant, but that thought was just too foreign to me. My sister called the IPF Foundation and she tried her best to convince me that a transplant was my only hope of survival.

By Christmas 2007 I was in a wheel chair and tethered to a 25-foot tube. In one month I had gone from only needing up to 6 liters of oxygen (not great, but could manage with a dainty oxygen tank that I carried in my handbag) to needing 12 liters and having to stay home tethered to larger oxygen concentrator which would not function if my cord was longer than 25 feet. My life changed from being filled with activities to sitting on a sofa by day and being so exhausted by eating or dressing or doing anything that I looked forward to night and sleeping.

The decision…

I remember that Christmas in 2007, my son and his fiancé were visiting. My son saw that I was getting sicker by the day. I was unable to even stand up without gasping for breath. My son sat on my bed one night and said, “Mom, I want to walk you down the aisle at my wedding in May and that is 5 months away. I want you to live. You can’t wait any longer, you have to do something.” I decided to get listed for a transplant. My sister had researched possible centers, and thought I should to Barnes at St Lewis because they performed the first lung transplant. But a dear friend, Dr. Fray Marshall, told me about the Emory Transplant Center and that they had an excellent Lung Transplant program.

Gaining my life back…

During my downward spiral I could do virtually nothing for a year before my transplant. Since my recovery I have resumed my normal routine. I am back to hiking and trying to play golf, croquet and bridge. I have no restrictions as far as activities. But to prevent exposure to bacteria which can cause infections, I can no longer enjoy my two favorite foods, raw oysters or steak tartar. The only other restriction is staying out of the sun without a hat and sunscreen, which most people my age should do anyway so that is not an issue.

But also giving back…

How could I not want to give back to the community? I was almost dead and someone gave me my life back, the most precious gift anyone can give. I am so grateful and thankful for my donor and transplant team that all I want to do is help in any way possible. I go to three support groups at different hospitals and visit patients and their families whenever I am asked to do so. I am a Family/Patient Advisor for Emory and on the Unit Practice Council for 5BS (the transplant floor at Emory University Hospital). I attend pre-transplant meetings answering questions from patients. The doctors can tell patients about the transplant but they want to know from me how it will feel. I believe I was predestined to have an illness that lead to this transplant so I can be a vessel for God and do the things I now do to help patients and families. I hope to do more to help raise awareness for the importance of organ donation.

A huge thank you to Emory…

From the time I first walked into Emory, when my doctors took a chance and put me on the transplant list, until I was transplanted worked like clockwork. The most important thing was the care and compassion of my whole transplant team, including doctors, nurses and staff. My surgeon was dedicated, caring and precise. My nurses on the Emory Transplant unit catered to my every need. The transplant coordinators conditioned me to the new lifestyle of pills and post-transplant regimen. They worked together so beautifully and were deeply passionate about both their work and their patients. This was so evident in the way they worked together and this respect for each other reverberated throughout and made such a difference.

A huge thank you to organ donors…

The greatest gift of love that anyone could ever give is the gift of life. When that gift is given a life lives on. I feel the spirit of my donor in me and only wish I knew who she or he was so I could thank their family personally and learn more about that person. I feel I am more compassionate than I was before the transplant, and I think it was gained from the spirit of my unknown donor. I feel that person living in me sometimes and that makes me want to be a better person. Thank you to all the organ donors out there! You are all heroes!

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  • Fran

    It blessed me so to read your post. My husband is about to be listed for a lung transplant for the same
    diagnosis. Like you, we were both devastated when we learned the news. He just had to quit his job of 39 years in February. It is ironic that his lung biopsy was done on my birthday, and his retirement date was in February, 2012. Our primary care physician suggested that he should probably go ahead and consider the transplant before his disease progressed more and while he was
    still healthy enough. We have both been so frightened and still are but we just met with Dr. Force last week and he made us feel so at ease. I pray you continue to have success with your transplant and reading these stories have given us so much more Hope.

  • Ellen

    Harriet- you are our hero, inspiration and dear friend. I look forward to taking another walk with you on the mountain. xo

    • Harriet

      Thank you Ellen!!

  • Bob

    Great post Harriet. My best!

    Bob

    • Harriet

      Thank you Bob! Just love Emory

  • Heidi

    Hi there, Your story is inspiring. My mother was one of the 1st patients on the Emory transplant list in 1993. She received her lung that same year. They gave her 8years to live. She exceeded that by living until 2011. She was a miracle that was made possible by the amazing team at Emory. Dr.lawerence never gave up on her even until the very end!

    God bless you – may you have the amazing journey that my mother had. God bless Emory!

  • Harriet

    Heidi, I agree, Dr Lawrence and Dr Newjahr are my docs and they truly care about me. Dt Lawrence wrote and sang a song about me after he asked me what the hardest part of the transplant experience was. I told him “Waiting for the Call and that is the name of the CD. You can hear it by going to his website.

    thanks, Harriet

  • sharhonda

    I met you at our transplant meeting and you are so amazing! I only pray that I am as full of life as you are now once I receive my transplant. I can totally relate to how you felt before you received your transplant. Some days I just cannot wait til it’s time to go back to sleep again. Playing the waiting game is not fun at all. Wanting to get back to being the person that can just enjoy life is all I want and that seems like it will never happen for me, but hearing your story gives me hope. Thank you for sharing your story and God bless you!