Posts Tagged ‘lung transplant outcomes’

Real Patients, Real Stories – Hear from an Emory Lung Transplant Patient

Diagnosed with Cystic Fibrosis as a baby, Kendra Adderhold struggled to have a normal childhood. Her mother brought her to the Emory Cystic Fibrosis Center for treatment and, until adulthood, things were rather stable. But, after the birth of her son, Kendra’s situation started to change. Her lung function began declining quite rapidly and soon she would need a lung transplant to survive. Hear Kendra’s story as she describes her journey to lung transplant and how the Emory Lung Transplant Program has impacted her life.

Emory Lung Transplant Program

Emory’s McKelvey Lung Transplant Center specializes in the treatment of complex lung disorders and offers the full continuum of sophisticated care involved in lung transplantation. We are dedicated to researching lung disorders and providing the best treatment and care for lung transplant patients.

Emory Transplant Center has the only lung transplant program in the state of Georgia, performing over 450 lung transplant procedures to date. Our goal is to provide patients with end-stage lung disease the unsurpassed care they deserve.

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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