My Post-transplant Life Is Well Worth the Cost
Almost 30 hours after my bilateral lung transplant, it was time for me to be extubated and take my first solo breath with my new lungs. My wife, Susan, was at my bedside, along with several nurses.
In a video of that day last July, you can hear Susan ask me if I’m ready to have the tube removed. I shook my head no.
But once the nurses removed the tube, an almost immediate calm came over me. I could breathe.
Making the trade
I wake up every day and say a prayer for my donor and their family. My quality of life has dramatically improved thanks to their gift. A transplant was the right choice for me.
But having a bilateral lung transplant due to idiopathic pulmonary fibrosis (IPF) meant trading one medical issue for another. My IPF is unlikely to reoccur, while my transplanted lungs will require medical management for the rest of my life.
The ability to breathe freely again requires commitment and discipline regarding medical care and possible modifications to diet, behavior, and lifestyle.
Medical care
Today, my immune system is suppressed as part of the plan to prevent rejection. Because of that, I must be more cautious around crowds, indoor gatherings, and people who may be ill. I am comfortable wearing a surgical face mask and continue that practice to protect my beautiful new lungs.
Medications are adjusted frequently, especially in the first year post-transplant. I had 66 medication adjustments in the first 11 months. Changes are made based on bloodwork (often done weekly), lab results, and clinic visits. Susan and I work together to dispense my medications on a weekly basis.
During the pandemic, I’ve received four doses of the Moderna COVID-19 vaccine. I will receive a fifth dose in late August. I was also fortunate to receive an Evusheld (tixagevimab and cilgavimab) infusion for pre-exposure prophylaxis of COVID-19.
Culinary challenges
Many post-transplant patients adjust their diets in advance of their transplant. My transplant took place at the Inova Fairfax Hospital in Falls Church, Virginia, one of the Pulmonary Fibrosis Foundation Care Center Network (CCN) sites. A CCN site takes a multidisciplinary approach to care, which includes a registered dietitian who offers education and counseling to patients and their families.
Water in our home is well water, which is not acceptable post-transplant except for bathing. We arranged for bottled water to be delivered to our home. For dishwashing, we can use a properly functioning dishwasher that heats the water.
Some of the dietary changes I had to adopt required some additional prep work. The best example is that raw vegetables are not allowed unless properly cleaned with a mixture of cider vinegar and water. Cleaning a single carrot is not difficult or time-consuming, but cleaning individual lettuce or spinach leaves can be.
I also can’t consume certain foods, such as pomegranate or grapefruit, because they interact with my anti-rejection medications. Buffet lines in restaurants are not advised, given the number of people who may have passed through the line previously. A green salad with dinner in a restaurant is not recommended because you don’t know how well the vegetables were cleaned.
Finally, alcohol does not mix well with many of my daily medications. I enjoyed wine before my transplant, but I had my last glass on July 8, 2021, the night before I received a call with a lung offer.
A small price to pay
Taking safety precautions, being diligent about taking my medications, and staying vigilant about my diet are small prices to pay for the improvement in my quality of life. Not only can I breathe freely, but all aspects of my life have improved.
I also want to continue to treasure and protect the gift my donor and their family have bestowed upon me. I will honor them by continuing to make every breath count.
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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Tammy Burton
Thank you for sharing your story. I was recently diagnosed with IPF in Jan 2022 and am learning every day from post like yours about my future. This post was very insightful May God continue to bless you each and every breath.
Samuel Kirton
Tammy,
Thanks for reading my column. This is exactly the reason I write this column. Each of our journeys is "you-nique". I hope you continue to return to Pulmonary Fibrosis News. I also encourage you to check out the conversations in the Forums section.
Sam ...
Jim Schiltz
Sam, thank you for sharing your story. I got diagnosed with IPF in December 2019, and recently got listed (2 weeks ago) for a bilateral lung transplant at the Cleveland Clinic. It's good to hear success stories about post-transplant patients, and I too look forward to being able to breathe again without the 24/7 use of O2. Regarding the culinary challenges, I was also told that seafood is highly discouraged after transplant due to the risk of bacteria. Again, a small price to pay for this new journey.
Samuel Kirton
Hi Jim,
Thanks for reading my column and for sharing some of your journey. I want to wish you well as you enter the next part of your journey.
It was my experience that post-transplant I should not consume raw or uncooked seafood such as sushi or sashimi. Other seafood was fine when properly prepared and cooked to an appropriate temperature. As always consult your care team for restrictions specific to you.
Come back and let me know how the next phase of your journey is going.
Sam ...
Harold A Brown
I had a single lung transplant 9 months ago at age 69. Life is pretty much back to normal. I still cough (which the doctor says is the remaining lung) and may be up for a treatment for GERD. But I have only had two medication adjustments, and no serious side effects. I exercise some every day, walking about 2 miles, and don't eat raw fish or meats. Everything must be cooked as much as I can stand, but I am only fairly religious about how much past medium. No tap water. But I drink wine and eat salads. I was told both were ok. Meet me and you won't know I was so ill, or ill at all. Life is good and I am thankful every day.
Samuel Kirton
Harold,
Thanks for reading my column. I am glad you are doing well. It sounds like you are doing all of the right things to continue living your best life.
I am glad you mentioned the tap water restriction. I neglected to mention in the column that I live in a more rural area where we use well water. We use bottled spring water for drinking and some cooking. We also boil water and store it for other household uses.
Sam ...
Ernie Kully
Sam,
Thank you so much for sharing your story. I have been back and forth about whether getting a transplant is worth the cost from the day I was diagnosed with IPF in May of 2018. Back then it was more theoretical, but fast forward to today and it's a very real question that I have to answer much sooner than I'd like.
Your story provided perspective, guidance, and a bird's eye view, so thank you for that.
I wish you many years of happiness and good health. Here in Southwest Florida, I know a gentleman who is in year 20 of his post-transplant life, so there is always hope
Best,
Ernie
Samuel Kirton
Ernie,
Thanks for reading my column. Transplantation is a very personal decision. I am glad that my column offered you some insight. Whatever your decision I wish you well. Please come back and let me know what you decide to do and how you are doing.
Sam ...
Bryan S Stovold
My wife may be a candidate for a lung transplant in two years. I've read weird things about post op such as taking 50-60 pills per day and a life expectancy of only 2-3 years. Reading this post and the comments gives me hope. Does anybody have information on the number of pills and life expectancy you were told to expect?
Samuel Kirton
Bryan,
Thanks for reading my column and your comments/questions. Personally, I take ~34 pills per day. With my wife's help, I build my meds for an entire week. Life expectancy here in the U.S. is now averaging above 50% after five years. I would encourage you to look up your transplant center at SRTR where they can provide statistics on survival rates by center.
Sam ...