Following My Doctor’s Advice, I Didn’t Abandon My Life Goals

Samuel Kirton avatar

by Samuel Kirton |

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I was only 59 when I was diagnosed with idiopathic pulmonary fibrosis. I still had so many things to do, and many life experiences were waiting for me. I hadn’t yet walked my daughter, Heather, down the aisle. I didn’t have grandchildren. There were places my wife, Susan, and I hadn’t visited.

Reason to fight

These life experiences were among my reasons to fight. I had to prevail. It was up to me to listen to my care team. I had to take their best advice, work hard to improve my physical strength, complete all of the testing, and maintain a positive attitude.

In an earlier column, I shared the numbing effect of hearing Dr. Steven Nathan tell Susan and me that I should get my affairs in order. But he also told us to keep living our lives, which is what we did. We continued to travel, even when I was on supplemental oxygen.

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Why I Continue to Write About IPF 6 Years After My Diagnosis

Susan and I recently reflected on all the places we had been fortunate enough to visit together. By early 2017, Susan had visited five continents, and I had visited six. In deference to the unknown timeline presented by my diagnosis, we decided to visit Antarctica, which allowed me travel to all seven continents. Imagine seeing the largest snowflakes you’ve ever witnessed.

Subsequently, we also visited Asia, spending time in both Korea and Japan. Like many of our shared travel adventures, that trip was on our bucket list.

A baby

Just three weeks before the one-year anniversary of my diagnosis, our granddaughter Abigail Rose was born. Susan and I arrived shortly after she was born, and I was able to hold her in my arms. A little less than a year earlier, I wasn’t sure I’d ever see a grandchild. Today, Abby calls me Pop. One of my favorite images is captured in a memory of my son, Christopher, Abby, and me — three generations of family.

A wedding

In the fall of that same year, my daughter, Heather, was set to marry her fiancé, Adam, a young man whom Susan and I had also fallen in love with. On a blue-sky afternoon, I walked Heather across a field of green to place her hand in Adam’s. The father-daughter dance that day is what I remember most.

I carry all of these memories with me. They represent life events and milestones that have occurred since my diagnosis. I had worried that I wouldn’t be able to experience such life events again. Yet even with an idiopathic pulmonary fibrosis diagnosis, I didn’t have to stop living. I didn’t surrender my desire for these events to happen.

Yes, I may have had to adjust how I participated or be more deliberate in my preparations. But even now, in the post-transplant phase of my journey, there are still things I want to see and do.

And then there were two

Why am I telling you all of this? Because last week, our granddaughter Charlotte Marie arrived at 10:28 on a Saturday morning. All 22 inches, 9 pounds, and 14 ounces of her entered this world with a smile. I can’t get enough of pictures of her with her two sisters, also both named Abigail.

It is healthy to look forward to life events. I try to live each day with a thankful heart, in part to honor my donor. There are so many more things I want to do. I want to make time.

Even before my transplant, I refused to surrender. Today, I have been given a gift that allows me 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.

Comments

Ann avatar

Ann

Mr. Kirton, I got emotional reading your life story. I just recently got diagnosed with mild Pulmonary Fibrosis and am going to see a pulmonologist and hope that I get a the help I need, because like you, I'm not done living. Any advice please pm me / email me. Blessings to you and yours.

Reply
Samuel Kirton avatar

Samuel Kirton

Ann
Thanks for reading my column. The best advice I can give you is to be your own best advocate. Find and build the right care team for you. Have you explored the Forums section of Pulmonary Fibrosis News? https://pulmonaryfibrosisnews.com/forums/
Sam ...

Reply
Wendy Anne Thompson avatar

Wendy Anne Thompson

I smiled all through your story. It has given me hope, and as I am always saying Positivity is so necessary when fighting as we all are. Well done for all you and your family have achieved. You can be so proud. Its given me encouragement, as I am only just trying to get my head around my recent diagnosis. Thank you Samuel.x.

Reply
Samuel Kirton avatar

Samuel Kirton

Wendy
Thanks for reading my column. You and I agree on positivity. I hope to hear from you again soon to let me know how you are doing on your journey.

Sam ...

Reply
Haidd hus avatar

Haidd hus

So motivating thanks for sharing that.
I used to struggle with my daily life to defeat hardships and low-downs as a 29-year-old husband and a father of four-month-old little baby.
Suffering from an autoimmune disease called ankylosing spondylitis, a low-degree psoriasis and -which is the hardest- interstitial lung disease (pulmonary fibrosis due to autoimmunity).
I already have hundreds of goals ahead to achieve as I am also a newly graduated doctor.
Sometimes I wake up with full energy and deep desire to defy the odds but those times are gradually decreased day by day.
Most days I feel breathless and with burning sensation in my chest and back.
I look at my little innocent angel while he is smiling and making those wonderful sounds ; I feel I'm about to weep, and I do weep inside of my sorrowful heart.
I think I'm depressed, that kind of depression which couldn't go away by pills; I've verified that claim through the good days in which my body is less restricted by those disastrous feelings.
I think about myself and panicked imagine what the days will bring, I sigh; O my goodness, I really need help.

Reply
Samuel Kirton avatar

Samuel Kirton

Haidd hus,

Can I recommend you talk with your care team about your feelings? Some days are harder than others. You should hold on to your goals. On the good days you will be able to accomplish them over time. Please write again and let me know how you are doing with those goals.

Sam ...

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Srivishwa Thammaiah avatar

Srivishwa Thammaiah

I felt happy seeing your message, I have been diagnosed with ILD, idiopatic pulmonary fibrosis and sometimes when I feel very low and depressed and scared when my oxygen level goes down. I saw your message today and I too felt I must continue with my life's goals and keep moving every day with a positive mind and attitude. My pulmonologist and my cardiologist and my eye surgeon friend encourage me to live my life happily with goals and see my family of my wife get her happiness and see my two sons complete their studies and achieve their career goals, and see them happily married and play with my grand children one day.

Reply
Samuel Kirton avatar

Samuel Kirton

Srivishwa,
Thanks for reading my column. I wish all clinic visit notes had instructions from the care team which read: live your life. Please let me hear from you to let me know how you are doing on your journey.

Sam ...

Reply
Philip Ryan avatar

Philip Ryan

I've had IPF for over 2 years and I'm 76, and still going strong. While everyone's story is a bit different, I urge everyone to remain active, and exercise to the extent possible and in consultation with your physician. I've found that portable concentrators are great for getting out and shopping, or whatever. Also, if you have access to a pulmonary therapy group, use it. The one I've used in San Francisco is great, combining aerobics, breathing exercises, treadmills, etc. I've always felt 100% better after an hour of exercise with them.

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Philip

Thanks for reading my column. I could not agree with you more. My time in pulmonary rehab did so much for me in both pre-transplant and post-transplant.

Sam.

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Janice Sutton avatar

Janice Sutton

Your story is so relatable. I am 9 1/2 years post double lung transplant as a result of IPF and I really connected to most everything you said. Milestones mean so much more to me now.
I am the Manager of The Lung Transplant Foundation Mentorship Program and would love to share your story on The Lung Transplant Foundations Facebook page. Would you allow us to share this? Thanks for this article!- Janice Sutton

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Janice

Thanks for reading my column. I am glad you found something which resonated with you. Feel free to link to the story from your organizations Facebook page. Linking to the column attributes it to BioNews.

Sam ...

Reply
Haid hus avatar

Haid hus

Thanks;
I've no care team since I'm Syrian and here is no good health care facilities neither professional programs, also diagnostic and therapeutic mechanisms doesn't exist.
How can I get past this huge hurdle?
I shall travel to U.S or Europe seeking medical care but how? I've searched dozens of sites and was with no result.
Ah

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