Lung Transplant- Harriet Boger

Lung Transplant – One Woman’s Success Story
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!

As per Hariet's request this has been shared.

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  • Harriet Bogar follow-up.

    My first scroll through the chapters and stories of Transplant Friends I spotted the name Harriet Bogar.

    A wonderful lady, Harriet became my mentor in early 2011. 

    My name is Mike Semrau.  I received a bi-lateral lung transplant on August 19, 2011.  

    My wife Izzy and I were living in Park City, Utah.  Somewhere around 2005, I noticed that climbing stairs winded me.  It was a ski town and I was a skier, hiker and biker. I could not have asked for more.

    So, I had this shortness of breath reviewed and was told many things  - the one I stayed with was from a friend and pulmonologist who said I had a small scar on my right lung and that it was nothing to worry about and it would not get worse.  No mention of Idiopathic Pulmonary Fibrosis. And, of course, it did get worse.  My PCP said I just needed to get closer to sea level.  Again not mention of IPF.  So, with that advice, we sold our Park City home and began the search for a home closer to sea level.  We finally settled on Traverse City, MI.  We live on Grand Traverse Bay of Lake Michigan, have a boat and 27 acres of land.  We had and have big plans.

    We returned to Atlanta, GA, where we still had a home from our previous life while working for The Coca-Cola Company.   Here is where the Harriet story comes in.  While visiting with a friend and rehab specialist at Piedmont Hospital, I was introduced to Harriet Bogar.  The first thing that Harriet said was "you need a transplant".  You can read her story above. 

    Izzy and I were in town to inform our children that I had acquired Idiopathic Pulmonary Fibrosis and had anywhere from one to six months left.  That went OK, but I still had Harriet on my mind.  What about a transplant?  Harriet arranged for me to meet with the TX doctors at Emory.  I should mention that at this point, I was 71 years old.  I had already been told by The University of Michigan that I was too old to be considered for a transplant.  So, a transplant was not on my radar screen. I did meet with the TX team at Emory.  I am a fairly trim individual, having been a runner and married to a terrific ex-chef who managed to convince me to eat right.  I had a BMI of about 22 and was still exercising regularly (with lots of oxygen).  Long story short, the TX team at Emory decided that the benefits of transplant exceeded the risks and I was then listed. Within three months I received the call.  The donor was a very young man/boy and, while I know who it is, the family has decided not to communicate.  But I have his picture and obviously love him dearly.

    Back to Harriet.  She was coach and mentor from our first meeting, through the listing process and finally following the transplant.  The young man who was my donor had, among other things, an allergy to peanuts and some other nuts.  These sort of things do not usually transfer with lungs, but in my case, they did.  The result was two quick and near deadly reactions to nuts, including two bouts with anaphylactic shock.  We had two more following those, but by then I was better prepared.  Today, the only nut allergy that I retain is to cashew and pistachio. 

    Through out this period, Harriet was either at my side of visiting daily.  Never stopped.

    Last September, 2012, Harriet died.  She acquired  a virus that could not be treated.  Harriet was in her fourth year following her transplant and she was in otherwise beautiful condition.  She had big plans to promote organ donation. 

    Subsequently, Izzy and I moved from Atlanta to Traverse City.  I still visit Emory every four months and will celebrate two years in August.  And, it looks like I am out of characters.  Will communicate again.

     

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