Uncharted Territory

I was told that transplant meant trading Pulmonary Hypertension for immunosuppression with lifelong medication and monitoring. Medication and monitoring? I’ve got that down. I severely underestimated how difficult it would be to learn all new medications, tests, terms, risks and necessary precautions. I am well equipped to address any issue that might come up with a pump I will never be attached to again, but I can’t explain why my transplant team does not want me to spend a night alone. What could go wrong? No, actually. What could go wrong? Friends keep asking me simple questions to which I have incomplete answers. My confusion in this adjustment period is frustrating for all parties—probably especially for the waiter I dismissed three times as I tried to decide if heated Gorgonzola is safe for me to eat before choosing not to risk it and substituting Parmesan.

This week I met with a new Primary Care Physician in Santa Rosa. Although I’ve already completed several New Patient Intake Forms since my transplant, they don’t seem to get any easier. Which parts of my medical history are relevant? The stress test I had last November won’t be very useful, but they’ll care about my last Pap smear. My history of asthma no longer applies, but I probably have the same seasonal allergies. I’m used to meeting with a new doctor and having a list of standing orders and medications I need prescribed, and a whole lot of educating to do. Now I encounter doctors who are more familiar with how my body works than I am simply because my transplant body is more similar to a normal body than my PH body ever was. It’s at once refreshing and confounding. All the Prednisone I’m taking hardly allows me to stay seated on the exam table, let alone answer the question “what do you need from me?”

“I don’t know yet” is the best I can manage—to answer my doctor, my waiter, and my friends. I spent sixteen years amassing information that pertained to my PH body, learning so much through trial and error. Now here I am, 23-years-old, in a body that looks much the same on the outside—a little pinker—but still feels foreign to my muddled brain. Years of practice prepared me for the myriad of things that could go wrong with my PH body. There seem to be even more things that can go wrong with my transplant body, but at less than eleven weeks post-op, I am still learning what those things are and how—or if—I can prepare for or prevent them.

Several hilarious animated YouTube videos and a couple peeks at scary medical articles later, I have a basic understanding to share with you. Things that can go wrong with my transplanted body mainly fall under the categories of rejection and infection. I am taking three medications (Prograf, Cellcept, and Prednisone) to suppress my immune system so that it does not attack the donor organs—a response known as rejection. There are two types of rejection that apply to my transplant. Acute rejection generally occurs within the first year after the surgery and can be treated with steroids and immunosuppression. Chronic rejection is a slower and progressive response that involves irreversible damage to transplanted tissue. I skimmed over the description of hardening arteries and focused on the part about it being further down the road. Not a concern for today. Today I am not showing signs of rejection and all I can do to potentially prevent it is to keep taking my medications exactly as they are prescribed. I can do that.

The other player in this game of immunosuppression is infection. I am at a higher risk for life-threatening infections because I have fewer pathogen-fighting white blood cells, thanks to my lifelong accomplices, Prograf, Cellcept, and Prednisone. To combat infection I have a battalion of antimicrobials: one antibiotic, one antiviral, and two antifungal medications. I only need to take thirteen additional drugs to treat the side effects of the aforementioned seven. My labs are drawn weekly and include tests for common viruses. I record my daily vital signs and symptoms, and check in with the transplant team regularly. I wear a filter mask outdoors and in areas where people may be sick. Apparently there’s some nasty stuff in dirt that I don’t want to inhale directly into my brand spanking new (and forever fragile) lungs so my gardening days are over. I hope the plants on my porch that have been dead for a year won’t spend too much time mourning my green thumb. For the most part, I’m left to my own devices to defend against infection. After years battling frequent pneumonia I’m already in the habit of refusing shared food. “No thanks, I promise I do not want any of that tantalizing flourless dark chocolate cake you just took your second bite of.” I’ve been practicing slightly more incessant hand washing since my transplant, but germophobia is nothing new to our family whose hermetic Thanksgiving tradition grew out of the necessity to stay healthy for winter travel to a specialist in New York.

I’m still sorting through which parts of my pre-transplant life can be carried over into my post-transplant life. Some things are just a matter of time: I can drive again in October; I can live on my own when I no longer need the assistance of my caregivers (whenever I decide I want to do all my own cooking, cleaning and laundry in addition to managing twenty new medications); I can wear a mask less in a year, but I will always wear one in crowds and around sick people. I’m ditching my stash of oxygen tanks for some new companions—running shoes and deodorant. What could go wrong? The list is long enough to propel me headlong into a tailspin of despair and paranoia. That’s chronic illness for you. Fortunately I was allowed to carry my collection of coping mechanisms with me into this new life. There are lots of things I don’t know yet, or that I may be wrong about, but my familiar friends, Trial and Error, seem to be here to stay, and we’ve done pretty well together so far.


12 thoughts on “Uncharted Territory

  1. Dale Rankin Mack says:

    Wow, thanks so much for your insight and wit. I’m 64, and have had PH for 10years, I’m now looking at a lung transplant, as well as a pulmonary artery transplant which is quite rare. I’d so love to talk sometime. Perhaps thru LinkedIn or Facebook? Smile, you’re amazing!!😍

    Liked by 1 person

  2. Veronica (Ronnie) Melamed says:

    Hi Kathleen,
    This blog was so helpful. I was just told i needed a heart and lung transplant. I have been a emotional. I have what if thoughts. I have had congenital heart disease and diagnosed with PAH 9 years ago. Now just waiting for transplant team to get a hold of me to start the evaluation processing. Which makes me worried. Thank you again for your blog. I ould love to email if possible. Ronnie

    Liked by 1 person

  3. Norene says:

    I love reading about your journey my friend. It is familiar in a weirdly comforting way. It’s as though you share hobbies my daughter was once occupied with.


  4. Michael Coffman says:

    Thank you Kathleen! I’ve been an RN since graduating in 1993 in a lovely Vermont country town college. I’m learning more interesting new things via your blog than I have in a long time… including the contents of
    continuing ed studies that come ’round on a regular basis. Your blog entries are fascinating.


  5. Pingback: Uncharted Territory — Rose-Colored Mask – Journal Edge

Leave a Reply

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

You are commenting using your 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 )

Connecting to %s