Lung Disease and Transplantation: The Harsh Realities
In previous columns, I have alluded to the world of lung diseases and organ transplantation as one that is unique and very different from the life that most people experience. This is especially true for young adults, who naturally focus on building a career, strengthening relationships, starting a family, and achieving financial security. Health issues such as a lung transplant are far from their minds.
While those things are important to me, too, as a young adult living with the life-threatening illness idiopathic pulmonary fibrosis (IPF), I have unwillingly been thrown into the world of lung disease and organ transplantation. Sometimes having exposure to that world is a blessing, as it can be incredibly inspiring to hear the stories of others. At the same time, the world of lung diseases and organ transplantation also can be terrifying, sad and unfair.
Most of the time I choose to look at the positive and consider exposure to this world as a gift, one that I share with many amazing people who are living very difficult stories of their own. Other times, especially when someone dies, I have moments when I would do anything not to be part of this community.
More specifically, the moments I wish I were not part of this community happen primarily because someone I care about has passed away from lung disease or transplant. Every time this happens, my heart aches again and I am instilled with fear and anxiety about my own journey.
Lately, however, I have been able to add another reason why I wish I were not part of this world, one I had not thought about until recently. That reason is realizing how many people in my own “lung community” have needed second transplants. How is this at all fair? Right now, as I sit in sadness that another lung buddy of mine has passed away, I also feel angry that the process of organ transplantation, particularly lung transplants, have failed these friends despite their exceptional strength and courage.
In the past few months alone, I have encountered four patients and friends, all younger than 50, who have either been listed or received a second double-lung transplant. Another young adult was listed, but unfortunately passed away before lungs became available for her. All of these individuals also have had their transplants within the past five years or so. This is really scary for any interstitial lung disease (ILD) patient, or anyone facing a lung transplant as part of their treatment plan for their disease.
I know there are many stories of longevity following lung transplants, and I am thankful for those. However, as I grieve the loss of another young transplant and lung disease patient, I am struggling with the harsh truth of what I have always been told: Organ transplantation is not a cure.
Before people jump in with comments on how far the medical world involving lung diseases and organ transplants has come, please understand that I do know that, and I am very grateful. I also know there are amazing stories of survival and longevity out there for people who have received a double-lung transplant, and I often cling to those stories for hope. I do, however, think it is a natural need to process the fear, frustration, and upset that arises as a result of someone you know losing their battle with the same disease you are facing.
Despite being told, I don’t think I had a true understanding that lung transplantation is not a cure for any disease. Instead, it is swapping one disease process for the management of another. I have been told this many times. But after hearing about another patient who needed a second double-lung transplant, and who unfortunately did not survive, that awful truth is weighing on me heavily today.
Thank you for reading.
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Lea
My condolences for the loss of your friend.
Of all the things that bring us hope, I place my creator at the top.
Eric Strayer
Hi. I am still being evaluated to make the "list". Frankly, I don't want a transplant. I am 67 which is no longer terribly old. But if I were a lot younger I probably would be more in favor of chancing the procedure.
Stories of post transplant life are not consistent enough to make me very eager for one.
Best,
es
Bonnie Windon
Best Of Luck Eric, I am Bonnie and I am 69 I have been evaluated at two Hosp, Temple in Phil Pa , Univ Of Maryland In Baltimore Md. Neither had real great risk factors for me. So I am just listening to my Dr here in York County Pa.
Mammie G Milton
I'm so sorry for your loss, I'm dealing with a loss of my own to IPF, my husband(57) was diagnosed in December 2016, in March he had a stroke, the doctors say the disease is very rapidly progressing, and don't have any solutions for us, it's very frustrating, I feel like we have lost all hopefully, lung transplant wasn't even an option for us.
M G Milton
I'm so sorry for your loss, I'm dealing with a loss of my own to IPF, my husband(57) was diagnosed in December 2016, in March he had a stroke, the doctors say the disease is very rapidly progressing, and don't have any solutions for us, it's very frustrating, I feel like we have lost all hope, lung transplant wasn't even an option for us.
Jeran Akers
In August 2006 my pulmonologist told me (at age 58..."you have 2 years to live, 3 at the most. Yeah, we all know we are going to die... but now you know the almost certain date. SHOCKING!!!!
Fortunately, two years later I received a double lung transplant. It was not easy. Living with all the anti rejection medication and the ensuing complications has made post life "challenging". But my belief in my God, a lung DONOR, care given by my medical team and the care of my primary caregiver, my loving wife, I am about to celebrate 9 years of post transplant life. A life that has allowed to see my older son graduate from college commissioned as an officer in the USAF, get married and give me a beautiful granddaughter. My younger son get married and become a US Marine. My daughter get married presented me with 3 fantastic grandchildren as well as earn a Masters degree.
The life after transplantion is a gift from God. At my age a second transplant is out of the question. I, too, have mourned for those that have passed away, as a matter of fact 2/3 of those who had transplants during the same time period as I are no longer alive.
Life is precious, we should treat it as such. I thank my God for everyday he gives me.
To help prevent death of those "on the list" yet died before they were able to receive lungs... PLEASE consider being a lung donor. Some day you will no longer need them. Your donation could save some one's life.
Steve
Thank you so much for your comment. I am in your boat with you. 63 and just completed Transplant Evaluation. Hope it is good. Find out tomorrow. Just kissed my first Grandchild (4months) goodbye after a visit. I am very scared, but also hopeful. Life is a gift I have learned. Again, Thank you.
geoff
I am a post lung transplant patient who celebrated 5 years post last September and saw one of my sons get married the same month; we all have choices in life one can propose to get on a wait list after 70 hours of pretesting in a hospital or not; there are only 1400 on average done per year although the need is in the hundreds of thousands; I cherish the gift so much that now I walk daily 1 to 2 miles and eat a very regimented diet ; I could not walk ten feet when I left the hospital ; I cherish every day to see my to twin boys grow at age 29; although I left the state where it was done I write to My Dr twice a month for 2.5 years religiously to thank her and the team; this is the only choice one has with IPF, COPD and cystic fibrosis; this is a choice one has but 40 years ago there was no choice
Shavonne Thomas
I am waiting to be seen for an evaluation for a Double lung transplant. My weight was an issue. I pray that i beat the oddsm i understand your fear
Andy Nelson
I am now just over 1 year post double lung transplant. Have been hospitalized twice in the last year; acute rejection of my transplant, pulmonary embolism and fungal infection. One word for every next breath; "thankful."
Pieces of my story: IPF diagnosis May 2014 age 44. Only noticeable symptom at time of diagnosis was chronic cough. My wife and I have been married 23 years, 4 daughters who were 15, 12, 4 and 2 when I was diagnosed with IPF. I still remember the day driving home from being formally diagnosed to tell them that I had IPF and possibly 3-5 years left to live...and actually would not have made it to Thanksgiving 2016... a year ago I was on 8 liters of oxygen/min 24 hours a day and would desaturate and heart rate would spike just trying to walk slowly across the room. I was completely healthy otherwise, never smoked, rarely even a cold and no sick days in 20+ year career. Fit and healthy my adult life. Double lung transplant July 3, 2016 age 46 @ UNC Health Care. Doing well...to date. No expectations...just thankful for each next breath.
My contact information:
[email protected]
[email protected]
Cell 919-454-7290
Speaking at UNC Jason Ray Foundation talk (I can send anyone pdf of slides from talk) and WNCN TV interview...
http://wncn.com/2016/09/18/at-fundraiser-unc-worker-recounts-how-organ-donation-saved-his-life/
Thankful for every next breath and every next moment God grants me to invest here. Life itself, just like healthcare, is a sacred trust to be stewarded...every moment, regardless of my feelings or understanding, infused with meaning by God. Thankful for IPF, for lung transplant & any more moments I may have left...reserving hope for many more.
-Andy Nelson