Sometimes I Forget That I’m Still a CF Patient

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by Lara Govendo |

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I had a routine checkup with my vascular surgeon last week. As I was pulling into the parking garage, it struck me that it had been a while since I’d been to the hospital. The realization brought me to tears. A life of planned routine medical appointments wasn’t always my story, but how incredible that it is my story now.

Since my double-lung transplant four years ago, I don’t think about living with cystic fibrosis (CF), or about being sick every day. I go about my routine as if I’m “normal.” I go to work and focus on how to counsel my students. I have outdoor adventures with my friends and laugh a lot. I run and play with my nephews, and we have a blast together.

My life wasn’t always this easygoing. When I was dealing with end-stage lung disease, everything I did was calculated. I had to think about what I was going to do each day so that I could divvy up my energy accordingly. My breathlessness took a lot out of me — I wasn’t able to work, spend time outdoors with friends, or run around with my nephews. I had to sit on the sidelines tethered to an oxygen tank. Sometimes my day’s biggest accomplishment was breathing. And even that was a huge feat.

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It’s painful now to think about how restricted my life was. I wasn’t even aware of just how limited it was until I discovered new freedoms after my double-lung transplant. My life was still so rich and meaningful before my transplant, but I had no idea how excruciatingly hard it was — because “hard” was all I knew.

I used to go to the hospital a few times each week, and I had multiple doctors’ appointments, blood draws, and breathing tests. The hospital felt like a second home to me. This was especially true during the two years leading up to my transplant. As CF ravaged my lungs, I was in the hospital more than I was at my house.

The hospital was a comfort to me. I felt safe there because I was being monitored while I was inpatient. I live alone, so when my breathing wasn’t good, it was scary to fall asleep at home. Strangely, I was comforted by the thought that right outside my hospital door there were medical staff that checked on me frequently. It became a security blanket for me.

living with CF | Cystic Fibrosis News Today | Lara Govendo lies in a hospital bed preparing for an ultrasound

Lara Govendo is rocking an ultrasound as part of her regular vascular appointment. (Photo by Lara Govendo)

It’s so interesting how the passing seasons of our lives can change our feelings. As I walked into the hospital for my appointment last week, I was surprised to realize that I no longer associated it with comfort. It felt almost foreign to me, like a place I knew well in another life, but now only vaguely remember.

I am still living with CF

Although my relationship with the hospital has changed, it will always be a part of my story. I still have health struggles. I won’t ever be completely problem-free. The flip side of the transplant life is dealing with the side effects of medication, and monitoring my health for organ damage and rejection. Plus, I am still living with CF, which affects other parts of my body.

My medical needs are still managed by several doctors. I swear, I might have one for every discipline there is! Just about every part of my body needs a doctor. The exciting difference between my old life and now is that most of my doctors’ appointments are now routine checkups. I don’t live with regularly occurring emergent or imminent health needs. It’s such a drastic difference.

Sometimes it’s nice to imagine never being a patient again. Hey, a girl can dream. But today, I’m celebrating that sometimes I feel so good that I forget I am a patient. And that means I’m healthy enough to live my life without thinking about the next thing I have to do for my health. That is a pretty sweet gift.

I admit I miss that feeling of home when I visit the hospital now. I’ve come so far that now when I visit I get a feeling of dread about what could go wrong. At the same time, I feel a kind of reverence toward it, for how much time I spent there and how special it was to me when I was there. Post-transplant feelings are complicated — especially when the relationship to a place that used to be so comforting changes so dramatically.

However, the bittersweet truth of my life is that I prayed for these days and now they’re here.

***

Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Paul & Debbie avatar

Paul & Debbie

Good to hear that you feel more safe now in the body, Lara, even without the hospital. I can surely relate to the change in your life after lungtransplant, although my change came from Kaftrio. But the same experience (FEV was down to 25, but increased after Kaftrio) like I don't have cf anymore, even forgetting to do my home pft's regularly.
I am married now, but I have been alone as well for some time in my life and indeed, it felt less safe then. However, I have learned since to go beyond the identification with the body. The solution is to feel "home" in yourself and as yourself, regardless of the circumstances or the condition of the body. Not identifying with the body (and going beyond the mind) can take care of this. It is not a common knowledge or practice in the west, but in Hindu (advaita/non-dualism) philosophy it is very well described how to realize this other level of awareness, looking at reality in a different way. I am not in the body, but the body is in "me", this me is not personal but the wholeness that is the source of all. In the West, this is partly taught in mindfulness/heartfulness or ACT, but here it is mostly used as a coping mechanism to reduce the stress of identification with the body (which is taking for granted). The original Hindu teachings go much further and dissolve the entire body-mind structure which leads to liberation. J. Krishnamurti wrote a little book about this, called "Freedom from the Known". I can highly recommend this.
Wish you all the best!

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