I Am Thankful for My Double Lung Transplant
In July 2000 at University Hospital in Denver I had a lung biopsy. Immediately after the surgery the surgeon said my wife, Barbara, “Have you considered a lung transplant?” We had not given one thought to a transplant.
I began having a non-productive cough in 1995. In the fall of 1999 I was checked out for shortness of breath with asthma, apnea and other things ruled out. My local pulmonologist suspected idiopathic pulmonary fibrosis which a CT scan at Barnes Hospital (St. Louis) confirmed. However, my doctor wasn’t sure what treatment to pursue.
I went to National Jewish Research Center, a top respiratory hospital in Denver. They agreed with the diagnosis of Idiopathic Pulmonary Fibrosis. Idiopathic means the cause is unknown. Pulmonary refers to the lungs. Fibrosis means scarring. IPF, as it is called, is a progressive scarring and deterioration of the lungs leaving the victim unable to breathe. My doctor said, “You don’t have cancer, but you have something just as bad. You have a life expectancy of about three years.”
More than 128,000 Americans suffer from this disease with about 48,000 diagnosed annually. Each year 40,000 die of IPF, the same number as die of breast cancer. Despite these facts, little is known about IPF. It has no known cause or means of prevention or FDA-approved treatment—outside of a lung transplant.
I started taking prednisone and cytoxan and began pulmonary rehab in August 2000. After talking with a lung transplant recipient at rehab, I agreed to be tested to see if I could get on the waiting list for a lung transplant. After a week of evaluation at Barnes Jewish Hospital in St. Louis in December 2000 I was placed on the waiting list. To be a recipient one must meet strict requirements including a good support group.
My health continued to decline. I began using supplemental oxygen and gave myself interferron gamma shots three times a week for three years. I continued my college teaching but with an assistant teacher. I had to sit to lecture. I was constantly coughing and had shortness of breath. My skin was pale and pasty. I ran out of energy easily. My college, Ozark Christian College, made sure our health insurance covered me.
In 2003 my condition stabilized temporarily. So for a while I was on the inactive transplant list. In the fall of 2003, my pulmonary function declined significantly and my doctors at Barnes said I needed to get back on the active list and prepare for the transplant. In April 2004 three weeks before the end of the spring semester, we moved to an apartment in St. Louis near the hospital to be available for the transplant and wait for a match. A match is based on blood type and height.
Two months later, on June 15, 2004, I received a double lung transplant, number 840 at Barnes Jewish Hospital. Barnes has an outstanding transplant program and has performed more lung transplants than any other center. We moved back to our home in Carl Junction, MO in October. I had several setbacks during the first year, including one surgery, a couple minor rejections, and three or four hospitalizations. The next year was difficult with Barbara having several surgeries and chemo as she dealt with breast cancer.
Since August 2000 I have faithfully exercised three times a week in pulmonary rehab at St. Johns Hospital, Joplin, MO (except for the time in St. Louis). Exercising regularly in rehab has contributed greatly to my general good health. Since I am immunosuppressed and susceptible to infection and rejection, I take about twenty-five pills every day. After recovering from the transplant, I taught in the classroom in the 2005-6 school year and retired from the classroom teaching in June 2006.
In retirement I had two goals: spend more time with family, especially grandchildren, and write articles and books. Since the transplant I have written and had published three books and twenty three articles. I tell our story in the first chapter of Where Is God When We Suffer: What the Bible Teaches about Suffering (College Press, 2007). I have had more time with family. My wife and I have enjoyed our Bible club with our four grandchildren. I regularly teach a Sunday School class and our care group and speak occasionally.
June 15, 2009 was an exciting day for me because it was the fifth year anniversary of my transplant. When I received the transplant, I was told that five years was the average life expectancy after transplant.
Those who saw me before my transplant and now remark about the dramatic difference. Just before the transplant I was so bad my family thought I wasn’t going to make it. My primary care doctor said he wishes he had a video of the before and after, just to show the great change.
At this Thanksgiving season I want to express my gratitude. I would not be alive today if I had not received the transplant. I am thankful for every day of life as a special gift of God. He gave me a new lease on life. I am deeply grateful to God, to the donor family, to the medical team, to my family especially my wife and friends and the many who prayed regularly for me.
I want to make the most of every day. I am grateful to have been alive to help Barbara through her health challenges with breast cancer and for this extended time together. We are both thankful to be alive and doing well today.
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about 2 years ago
Many thanks for that moving testimonial! As a PF patient, it gives me strength and motivation to hear such inspirational stories. I hope that you will continue to do well, and to help the PF cause by writing letters to the US Representatives from Missouri (there are 9 Reps. in Missouri) in support of HR 1079, The Pulmonary Fibrosis Research Enhancement Act. That bill today has 62 cosponsors (40 Democrates and 22 Republicans), but sadly none from The Show Me State. If you would like to see a sample letter and information packet I would be happy to send one. Stay well, stay positive and keep fighting!
Paul A. Fogelberg ~ paul@proedgroup.com
about 2 years ago
Dr. Gardner, thank you for that testimony. With a three year life expectancy originally, then only a five year outlook after the transplant… you are truly blessed with a decade behind you since the initial diagnosis. The previous model of Superman has been replaced and it’s now you! God bless; continue writing, publishing, and blessing the world around you, (near and far). And Barbara, thank you too… behind every great man is a great women!
about 2 years ago
Very outstanding website.
The info here is super helpful.
I will share it with my friends.
Cheers
about 1 year ago
Hi,
I haven’t set up a website yet, though my doctors tell me I should. They say I was the most difficult case they have had that survived.
I read your story with so much interest, and was amazed at some of the similarity…..I too received a double lung transplant, mine in Oct 2008, but almost died on the table 3 times. After 14 hours of surgery, they told my wife I was doing as well as could be expected given my condition….then, within 2 hours the doctor, the social worker and our transplant nurse called my wife who had gone home to try to sleep (at the urging of the doctors, since she too was just recovering from a significant case of Breast Cancer, (2 surgeries, Chemo, radiation etc) all while I was awaiting lung transplant.
Anyway, this group told my wife she likely would not be able to get back to the hospital in time, that I had fallen into a coma and was bleeding out….I was going to be one of the 5-10% that dies on the table……but two wonderful nurses, angels of God I am sure, refused to let me die….and kept pumping blood and blood products into me….29 units….while the surgeons decided if it was even worth a try…..then when the Angels succeeded in getting my BP stable enough so the doctors would give it a try……..I was off to Emergency Surgery….for another 8 hours….and once again place on By-Pass (as I was during the transplant)…this time, they reopened my chest, and undid the connections of the heart/lung artery…and some other connections….including undoing the connection of my esophogus to the donor esophogus…(sp?)….anyway, I began to weaken and they decided to leave my chest open, knowing I would be back in OR if I survived….but they needed me to gain some strength before they would take another chance….by now, they had me in a controlled chemical induced coma….where I remained for two weeks……..
After about a week they let my wife see me…..she was floored….not that I looked so bad, but rather I looked so much better than before the transplant……no longer looking gray and sunken….(by the way I’m only 53, and never smoked a day….I have Sarcoidosis…..severe and chronic…….and it’s attacked my lungs, lymph system, my spleen (whcih they have now removed also), my liver….contributing to cirrhosis, and kidneys, leading to chronic kidney failure……Oh and I also have Immunoglobulin Deficiency/common variable Immune Deficiency….requiring IVIG Infusions every other week…..
Anyway….my wife started an online blog with the help of the social worker….using a canned program online called “Caring Bridge”…it was wonderful….allowing my wife to communicate my condition to my very large and extended family and network of friends……..who all began praying for me……it was incredible….hundreds of people, many I never met, somehow got my name and info and wrote in to my wife…..lifting her spirits…..and offering prayers………..and somehow, in my coma state, I knew something was happening……I had visions, visitors……but then began settleing back until finally, the nurses began to wake me…….still intubated…..but beginning to awake…..Wow……
This was but the beginning……with 3 surguries the first week…..(over 29 hours in surgery)…..then so many tests, so many set backs, followed by a stroke, bloodclots in my jugular vein, clots in my legs….but not able to thin my blood…..due to the bleeding problem…..I was still bleeding in January……and had to have more surgery……..this time removing/scraping the bottom lobes of my right lung…..but I weakened too much to have both done…..which I badly needed….so once again I was placed in this induced coma for another week or so…..(This now my 3rd time in a coma since Oct)….
They had pushed so much blood and fluid into my body I looked like the Stay Puff Marshmellow man! I couldn’t move my arms or legs…couldn’t move my hands which were so big the nurses called them bear claws! I had been in bed so long I had suffered severe attrophy…..and now with fluid around both lungs……I was struggling with pneumonia constantly………..my first year spending over 110 days in the hospital!
At one point my surgeon who is wonderful told me I was the sickest person in the hospital…somehow that didn’t make me feel good…… but he did say he wasn’t gong to let me die…….and I believed him…..
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One night, one of the nurses came in and saw that I couldn’t sleep. I had never seen her before….she was so nice…..I asked her where my regular nurse was and she said she was right outside (I had to have a private room now due to my immune system…..and my contracting C-Diff and then MRSA ….so now I am on procaution always……..even now two years after…….
Anyway….my point is……it was a blessign….and I truely believe that nurse was not a nurse…but an Angel of God. She came to my bedside and asked me if I wanted to pray with her. She never touched my dressing or IV’s, nor tubes……I had 11 chest tubes/stomach tubes etc….along with an A line, at least 5 IV’s due to the number of meds I was given…… it was incredible……but after that night, when the “Nurse Angel” came to pray with me…..I started to improve…….not quickly….but slowly…….I asked if they could tell me who she was…..but no one else saw her……and the nurse I had that night said no one but her had been in my room all night………..suggesting that maybe I dreamed it………but it was not a dream……I can remember her as if she was with me now…..perhaps she is!
I know I have a long way still to go. I’ve recovered so I can walk with a cane, I do Pulmonary rehab, but my kidneys and liver are failing, my spleen had to be removed, and my gallbladder is next. I have suffered moderate brain damage, leaving me with short term memory loss, what they call Cognitive Damage….so I can no longer drive……I’m permenantly disabled and spend almost all my waking hours at doctors, hospitals, tests, procedures, biopsies, surgeries, etc, etc……it never ends…
My doctors were very clear on one thing……before I was accepted into the program, they made sure I understood this was not a cure (there is no cure for Sarcoidosis)…and my life expectancy with a double lung transplant would be 3-5 years……now I hope and pray for that…though I have just celebrated my 2nd year…….still not well……lung function at the last clinic visit was only 35%…(far better than the 23% before the transplant)….but not what they or I had hoped for. most disturbing to them is my Renal Function…….and that if that doesn’t improve (not likely they say), they will soon have to stop my IVIG Infusions, because my kidneys can no longer handle them…….but that’s a catch 22….as I need the Infusions to survive ……it’s the only thing keeping me from infections……
So, I know…..but even with the knowledge that I likely have only a few years left…I”m planning to move with my wife and family to Florida in 2 years when our youngest son graduates from college up here in New England….Some of my siblings think I’m crazy…..that I should move now…but we promised him we would be here for him…and he has his own problems, severe ADHD..so I said we would be here for him and we will…….I will get to Florida…..and who knows….maybe I will get 3 or more years down there…….
Thanks for listening…sorry for rambling…believe it or not this is the very, very short version…..but I’m running out of gas..
Sincerely,
Steve