Fear of Living Life Fully After Transplant

I’m still trying to define who I am after a double-lung and liver transplant five years ago. Although I am much healthier, I sometimes still struggle with my physical and mental health, and I don’t know what I want to do next in my life.

| 8 min read
Tara-Goodwin-Headshot
Tara Goodwin
Tara smiling with her partner.

When I was listed for a double-lung and liver transplant in 2016, one of the myriad things I had to do (besides not die) was get my affairs in order. This story would be more interesting if that included an actual line-up of illicit lovers, but it doesn’t.

When I met with my lawyer, I stifled a laugh when he mentioned any potential future inheritance from my parents. We all knew that I was going die before them, so we could skip that part. I needed to focus on my living will, my advance directives, and making sure my fiancé, Michael (whom I couldn’t marry because of health insurance nuances), would be my power of attorney, my medical proxy, my power of the proxy, my medical attorney, and any other combination of those words.

When I did die before Michael (not if), I wanted him to be in charge of everything I had — the stack of cards my third-grade class made me when I missed that month of school, all of the beautiful books that I really really need and he will really really hate dealing with, and those colorful tins from the hard candies I like to order from France. He would send my death certificate to a slew of different doctors and hospitals to convince them I truly can’t pay them anymore, and he would get rid of all the extra medical supplies that live in various caverns around the house (on the shelf across from the washing machine, under that bed and the other bed, and those drawers below the crystal glasses).

I had no problems or hang-ups with death and what comes with it — the sticky things most people choose to avoid thinking about. I knew death was coming for me — I had always known — and I wasn’t bothered planning for and dealing with it.

However, after a successful transplant I had to face something much more unfamiliar and uncomfortable than death. The thing I hadn’t planned for and had never even considered was … life.

A life unattached from IVs and feeding tubes and oxygen and nebulizers. A life where I spent more nights in my own bed than in a hospital bed. A life where I didn’t have to report my weight and could schedule a haircut eight weeks out because I’d become predictably “normal.”

Before my transplant, when my oxygen line felt more like a garrote than a life-sustaining tool, I thought my life would be magically fixed after I received my new lungs. I would think, “I’ll be able to do anything I want when I can breathe!” and “I won’t have to sleep all day!” — all wonderfully vague things because I didn’t think I’d last long enough to live out the specifics. I’d long ago stopped dreaming certain dreams or planning anything because — predictably — all my plans got wiped out by CF. 

After my transplant, I felt adrift in an unfamiliar sea on an unfamiliar planet. Yes, I could breathe, and I was, like, 60 bags lighter if I wanted to travel. But what did I want to do with my life? Should I go back to college, since I’d dropped out a decade earlier because of my health? What do I want to be when I “grow up”? I had missed out on that early adulthood phase of growing into the person I was to become; and now, after watching the people around me do it effortlessly for so long, I was thrust into the world of the living. 

I went through (and, to a degree, am still going through) an identity crisis. I knew who I was before my transplant. I was Tara — The Patient. The one who takes all these medicines on this schedule and uses the hospital bed as a scissor lift to hang hot-glued decorations on the ceiling. (This is highly illegal. Don’t even think about it.) I was The Patient who didn’t have the energy to think about the future — five years from now or five hours from now, which really worked well for my indecisiveness. Today, I know I’m not in Kansas anymore — and I’m glad because I hated Kansas (sorry, Kansans) — but Kansas is all I know and I have no idea what kind of shoes I need for the beach, much less what to do when I get there.

Now that I can breathe, I feel like anything that doesn’t go right is basically like my gold belt is too tight and my diamond tiara is a touch heavy. I can breathe, my liver livers, and the world is pretty much at my feet, so what do I have to complain about?

I want others to know that my kidney stones are not as interesting as my blood transfusions were, but I do still have legitimate issues — both with physical and mental health. I’m not struggling to breathe, but I am still struggling. 

Nobody asks me how I’m doing anymore, which is fine because I was usually lying when I answered. But I’m still really sick (just in less critical ways). Some days I’m too tired to do anything, and I fear that because I’m not attached to any machines it will be read as laziness. Some days the brain-blurring side effects of the anti-rejection medications are so pronounced I can’t function. I’ve crafted this idea that new people I meet will judge me because I have no job and no kids and no good answer to the question “What do you do all day?” 

At one point, I knew the answer to any question I might be asked — Do I want the lights out? When is my next IV due? Are my medications correct? I know how to grin and bear it through almost every side effect and an inordinate number of procedures, but when it comes to larger things that don’t have a definite answer, I’m lost. How do I fit into other people’s lives if they can’t visit me in the hospital?

How do I teach people that I don’t need to be carried up the stairs anymore, but I do need emotional support and help figuring out what Tara I am now?

I would imagine I’m not the first person to feel like I don’t know what to do with this breathing, foreign version of my life; but I don’t talk about it because I feel guilty thinking that I can’t be grateful for what I have and want more at the same time. I never want to seem like I’ve forgotten the pain I went through to get here, and I don’t want others to forget about it either. Although my daily anecdotes are pretty mundane — I woke up, didn’t sit down in the shower, and had the energy to blow-dry my hair — I want people to understand how big of a deal a normal day is.

I have a huge fear that one day I’ll wake up and my new organs will be failing, and I’ll be put back in that place of illness without anything to show for my time away from it. So, this is me trying to give meaning to my actions and wanting people to know that I have exactly zero answers. You’re not alone. If your life has drastically changed, you have the right to look like a baby giraffe trying to walk for a while, wobbly and unsure, even if that drastic change was for the better. The plan is to grow and see where life takes you, just hopefully not back to Kansas.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
Lung Transplantation
Tara-Goodwin-Headshot

Tara was raised in Austin, Texas, but has lived in Houston since her double-lung and liver transplants on Thanksgiving Day 2017. Her life has changed drastically since she got bangs early last year. She is dedicated to helping the CF community, is on several committees for the Foundation, and does whatever she can for her local chapter. She lives with her giant-sized dog, Heidi, and her normal-sized partner, Michael. You can follow her antics on Instagram.

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