Recovery

Valuing My Life With PH

I found a four-leaf clover, at last. I haven’t found one since my heart-lung transplant and I have been worried four-leaf-clover-finding was another part of Kathleen that did not carry over from pre- to post-transplant life. My memories of spotting four-leaf clovers go as far back as first grade when I would spend recess sitting in the field scanning the grass for those extra-special shamrocks. One summer day I collected 26 four-leaf clovers from the lawn in Verna’s backyard while my sister swam in the pool. To have gone more than a year without finding one seemed like a bad omen, since hunting four-leaf clovers became second-nature, continuing through college and long after I let go of the collection pressed between the cardboard backing and glass of an elegant frame Verna had on hand.

In gaining a healthy heart and pair of lungs, energy, and circulation, I’ve lost parts of my identity. Beyond spending less time sitting on lawns, I no longer have a Congenital Heart Defect or Pulmonary Arterial Hypertension (PH). During an O2 Breathe Walk, a fundraiser for the Pulmonary Hypertension Association, I was given a T-shirt that says “PH Survivor.” I debated whether I could still wear it. For a long time I thought that transplant meant I had given up the fight against PH; that I had failed to last as long as I needed to for researchers to find “The Cure.” Honestly, I didn’t wear the shirt outside even when I had PH, and it took some doing to take a photo that showed more than “URVIV.” When I reframed transplantation as a treatment for PH, I decided I am still a PH survivor because I was born with PH and fought it. I wore the shirt to bed last night (it makes a great pajama top)! 

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Like others I tried over the years, this treatment option comes with major side-effects. When I tell someone I had a heart-lung transplant, I’m usually greeted with “congratulations,” unless they are particularly clueless and say, “Get well soon.” When I was dealing with intense postoperative pain and brain fog, it upset me to be congratulated on my “new life.” With multiple blood draws, tests, and appointments each week, it didn’t feel like much of a life in the beginning. Now when I meet recent transplant recipients, I have the urge to say the same, knowing how difficult and rare it is to survive the wait for a donor and the operation itself.

“Congratulations on your new life” does not acknowledge the value of the life before the transplant. I had 23 years of that “old life,” and I had grown fond of it. PH sucks (this super cool enamel pin by artist and PH survivor, Jenny Janzer, agrees with me). Life with chronic illness is not easy, but like most challenges, it can be an experience rich with unique opportunities. Everyone’s interests evolve with age, but many of mine developed because of my illness and the limited choices it gave me.

While my cabin-mates at summer camp swam in the pool, I did crafts. While I was at home with pneumonia, tethered to an oxygen tank, I did jigsaw puzzles and played board games. While my sister went to soccer camp, I took a web design course. Now that I need to exercise my new organs daily to maintain their function (and my sanity), I spend less time on art projects and board games. As frustrating as it was to be slowed by shortness of breath, I noticed more things when I moved through the world with PH, and would take photos on walks with groups, while surreptitiously catching my breath.

“Congratulations” does not acknowledge the spectrum of grief and celebration inherent to transplantation. It’s a continuous grief process that began with the loss of my organ donor. “The Call” offering me a heart and lungs en bloc, brought the knowledge that someone with A+ blood had died, that I might die in surgery, and that I might live to experience life without PH. Sixteen hours after my call, I lost the heart and lungs I was born with, and my pump, a machine that delivered life-prolonging medication to my heart for 17 years.

Recently I worried that, without refresher training, I could not perform the procedures I did while on the pump. Then I decided it’s OK for a 24-year-old with a liberal arts degree not to know how to mix intravenous medicine. Still, I miss having saline, gauze, and sterile bandages on hand, especially since my active post-transplant lifestyle seems to make me more prone to injury.

One night, while hospitalized after my transplant, I went for a walk with my dad and my IV pole. Stiff, cranky, and swollen from steroids, I was furious when dad said, “I am just so happy for you.” Like “congratulations,” his statement was an insufficient summary of complex emotions. What I’d prefer to hear as a transplant recipient, and say to others in my situation, is difficult to summarize in a few words. The closest I’ve gotten is this: “I am so happy you are alive, and I know it isn’t easy.” Those of us living with chronic illness often see ourselves as a burden to others and don’t want our complaints to make us appear ungrateful. We need to be reminded that our lives are valuable. We need others to know that the fight is not over after an operation; it is ongoing, never easy, but full of opportunity.

I love having the ability to chase after my dog, go on 9-mile hikes with my friends, and photograph 10-hour weddings with heavy equipment in tow. My post-transplant life is very much informed by my PH life, empowering me to appreciate falling asleep without an oxygen cannula, and changing clothes after showering, instead of sterile bandages. Last month, my sister and I took our bikes to ride along the same path we rode so often as children, and later as teenagers. The slopes I previously perceived to be mountains are now gradual hills, and the ride that drained a full day’s energy barely ranks as a workout for my new organs. When I catch my breath with ease, I cry for the little girl with blue lips who had to learn before other kids to shift gears on a bike to make it up hills. I cheer for the transplanted woman who now can race her younger sister up those hills (and win fairly, sometimes), even if it’s 20 years late. I cry for my donor, because my new life is only possible because they lost theirs.

clover 4

Relief washed over me when I saw it. As if it might run away from me, I hastily snapped the delicate stem and examined the stunted fourth leaf crowded by the others. I’m comforted to know there will be time in my new life to sit in the grass disentangling shamrocks until I find the elusive extra leaves that make me feel as special as they are. Now it will happen because I make the time to sit and look, and not because I’m too tired to stand.


Portions of this post originally published by Pulmonary Hypertension News.

All photos © Kathleen Sheffer Photography.

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One thought on “Valuing My Life With PH

  1. Peter C. Grauert says:

    Dear Kathleen:

    Your wordsmithing makes us feel like we are present with you. Thank you for letting us join you. I’m hooked and eagerly await my next KS fix!!

    Semper Fi,

    Peter

    Liked by 1 person

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