Living Without PAH: A Room-By-Room Analysis of What I Take for Granted

A heart-lung transplant cured my pulmonary arterial hypertension (PAH) and changed the way I interact with my environment. It affected the activities I perform in every room in my house.

Knowing I can get caught up in my own routine, I often work to notice all the little (and big!) ways my life is easier since my surgery; things I started taking for granted as the months passed. It’s just one way to honor my organ donor, the hero who gifted me a healthy heart and pair of lungs that transformed my world.

Living room

I take for granted that I enter my house without any shortness of breath after climbing the 13 steps to my door (I counted them when I had PAH). My dog, Basil, greets me, and I take for granted that I have the energy to walk her around the neighborhood. Some days I lie on my couch to read a book. Now I do so without falling asleep like I had always done before. I’ve finished 48 books (and counting, obviously) in the two years since my transplant.

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Dining room

My dining room table has no recent stains from alcohol wipes. There’s no mixing tray scattered with syringes and used-to-be-sterile packaging. No remains from last night’s procedure that I didn’t have the energy to clean up after. I take for granted that I do not have to mix my intravenous (IV) medication and change my pump every 24 hours. I no longer agonize over bubbles the size of poppy seeds, or squint to see the one-sixteenth-milliliter line. I no longer sit at my table sobbing because I’m exhausted and want to be in bed instead of doing a task that reminds me every single day I am sick.

From left, Kathleen and friend, Kendra, mixing intravenous medications together. Kathleen had recently turned 21 and was in Las Vegas, but that has nothing to do with the adorable cats in this image. (Photo by Lilly Hsueh)

Kitchen

My love for eating came well before my love for cooking, but now I conveniently enjoy both activities. Cooking grew into a form of meditation for me, as well as a way to show my love for my friends and family. When I had PAH, I struggled to stand for the 30 minutes it takes to prepare a meal. By the time the food was cooked, I had no reserves to wash the dishes I had made. Now I take for granted having the energy to cook multiple meals a day and clean my kitchen, in addition to all my other activities.

Tamales cooking in Kathleen’s kitchen during recovery from transplant. (Photo by Kathleen Sheffer)

Bathroom

A bottle of now-expired anti-diarrheal medication lingers at the back of a cabinet drawer, unopened in two years. I take for granted not suffering through a stomachache every day. When I stopped taking diuretics I deleted the Flush App on my phone. I no longer fear leaving the house and having to track down public restrooms in San Francisco.

I take for granted that I can get in the shower without first waterproofing the site of my Broviac catheter. That I can get dressed without first performing a sterile bandage change. That I can shave the entirety of my right armpit now that there’s no bandage in the way. I’m still learning not to budget half an hour to take a shower. I can shower in five minutes and be ready to go in seven. Without needing a nap after!

Bedroom

Every night I fall asleep without turning on an oxygen concentrator. I take for granted that I no longer thread latex tubing around my ears, inserting prongs into my nostrils. Some nights I still scrunch up my face so my top lip meets my nose. I check for the nasal cannula before I remember I don’t need it.

Kathleen wearing oxygen, hours before her transplant operation. (Photo by Monica Sheffer)

When I wake in the middle of the night, I stand up and walk to the bathroom. I take for granted that I don’t first reach for my pump, and then untangle myself from both IV and oxygen tubing.

I wake up feeling rested. I make my bed without losing part of a day’s worth of energy. The same goes for getting dressed. I no longer need to thread a pump through my shirt before putting it on, or thread it back through when I take it off. I take for granted pulling on whatever pants I want to wear, even if they don’t have pockets large enough to fit a pump.

Kathleen looking peaceful and contemplative and not just totally awkward testing photo booth lighting and a backdrop. (Photo by Kathleen Sheffer with assistance from tripod and self-timer)

Most days, I let myself take all this for granted. I do so knowing many of my friends still struggle with the same activities. Allowing myself to enjoy this ease is a part of not taking for granted the tremendous gift I’ve received. Today, though, I notice.

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Note: Pulmonary Hypertension 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 Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.