Pre-Op

5 Things I Wish I Knew Before My Transplant

Knowing transplant was my plan when all else failed, I lacked curiosity to gather information before making a decision. I focused on survival: more information only increased my anxiety. During my training class, I scribbled in a sketchbook and relied on humor to gloss over the enormity of what I was facing. I still don’t wish I had known that my transplant would come with unanticipated and persistent complications, or that it would involve more physical pain than I had ever experienced before. I could not prepare for those aspects, and knowing they were coming would only have drained my energy to fight them.

IMG_2078

Some notes I took during transplant training. “Grapefruit sucks” comment courtesy of my friend, Max. (Photo by Kathleen Sheffer)

Friends who are looking ahead to a possible transplant in their future often ask me for advice to prepare. With that in mind, I’ve listed a few things I believe I would have benefitted from knowing before my transplant:

1. Transplant comes with permanent dietary restrictions.

When I had pulmonary hypertension, I did not appreciate that I could eat anything I wanted (probably because I rarely wanted to eat anything at all). I no longer battle nausea or struggle to maintain a healthy weight, but chronic immunosuppression does come with restrictions. Grapefruit interferes with immunosuppressants (and many other medications), but that was easy to give up since I don’t regularly encounter grapefruit in restaurants or friend’s homes. Not until after my surgery did I learn that all meats must be hot within an hour of consumption. That means no sushi. No cold cuts. Ever again. Had I known this before, I would have found a nice spot to park my oxygen concentrator and started pigging out on spicy tuna rolls and deli sandwiches.

2. Chest tube scars heal.

While listed for transplant, one of my main preoccupations was the impact chest tube scars would have on my body image. I already had a chest tube scar from one open-heart surgery, and I wasn’t fond of it. Chest tubes would be better labeled chest hoses–they’re huge! But my chest tube scars healed, and they look more like an awesome tattoo than six additional blemishes to my already scarred torso. Honestly, I think I should have more impressive scars to show for the battle I fought.

scarchange.png

3. It takes a full year to recover. Don’t kid yourself.

Imagining myself younger, stronger, and more determined than most patients, I assumed I would recover quickly and surpass expectations. But it was a year before I tapered down to the lowest dose of Prednisone. A year before my doctors felt comfortable spacing appointments months instead of weeks apart. A year before my health stopped being my number one focus and I could find other things to talk and dream about.  

4Patients are surviving.

Going into transplant, I had a few friends who had received heart-lung and double-lung transplants, but the longest survivor I knew lost her battle after 12 years. I had less of an optimistic outlook on survival rates than I do now that I know more about the statistics and their inaccuracy. There are recipients alive today who had their transplants when centers first started performing heart-lung transplants (over 30 years ago), so doctors truly cannot determine a limit for how long these transplants can last.

5. Quality of life does improve.

Oxygenation had far-reaching effects that make me able to say with confidence that my quality of life after transplant is immeasurably better than before transplant. Simply by virtue of spending more hours a day awake, I get more done, appreciate life more, and have more experiences with the people I love. The best part? Joining my parents on hikes and sensing their joy as I speed ahead.

DSC_1342

Hiking with my parents in Sedona, Arizona, six months post-transplant. (Photo by Monica Sheffer)

This article was originally published to my column, Life After PH through Pulmonary Hypertension News. Since then, I’ve gotten feedback from other transplant patients adding to my list, and patients pre-transplant determined to savor the foods they can still eat. Still others have asked questions only their doctor can answer. I have a hard time empathizing with those who obsess over certain sacrifices necessary for transplantation. No, I’m not another voice in transplant support groups chanting, “But you can breathe!” as if that fact eases every trial for a lung transplant patient, despite its inefficacy on the rest of the oxygenated world. What I keep going back to is that transplant is a choice between life and death. One does not receive donated organs otherwise. Most will choose to live, and find ways to adapt to whatever life brings.

Advertisements
Standard

2 thoughts on “5 Things I Wish I Knew Before My Transplant

  1. Patti Anderson says:

    I just love to read your posts.. It has made me realize that chronic illness is very hard on a person, and their lifestyle. It has also made me realize how wonderful it is for you to have 2 lungs and a heart that works, that has made your life full again. I have met others recently with chronic severe illness and I can empathize and not just say I’m sorry while not helping them. You are helping so many in your posts.. I sure appreciate you and your writings.. 🙂

    Liked by 1 person

  2. Peter C. Grauert says:

    Dear Kathleen:
    Another great Blog! Through your word smithing, we may not be able to feel the actual pain that you encountered but we sure can hear the beeps, the sighs, and the alarms of the equipment!
    How about telling us about five results that you anticipated vs. the actual outcomes?
    Thank you for sharing.

    Semper Fi,

    p

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s