Perfect health isn’t my goal, just long stretches between setbacks
An illness like pulmonary hypertension never really leaves you alone
When you live with a chronic and complex illness, complications and side effects from the medications to treat it are always lurking around the corner — even in the most stable of times.
The more dramatic setbacks of living with pulmonary hypertension (PH) have included things like getting sick with the flu or a malfunction with my infusion pump. But even when I’ve been healthy, minor issues, such as chronic bloody noses — some so bad that they sent me to the emergency room — have continued to follow me. And even when everything was going perfectly, I was still subject to regular blood work and the exhaustion of keeping up with my treatment regimen.
An illness like PH never leaves you alone.
Grateful for the little things
I’m reminded of this cycle of setbacks, inconveniences, and disappointments now, in the seventh year of my heart-lung transplant. This year has been like most — a handful of major illnesses amid an otherwise stable life. But a difficult October did quite a bit to remind me that there will always be something I’ll have to deal with regarding this body of mine.
There is no goal of perfect health. It’s simply not realistic to hope for that at this point. Instead, I can only strive for a somewhat subpar baseline and long stretches between setbacks.
I recently spoke with my friend, a mother of a young transplant recipient, and we agreed that it’s a little bit demoralizing to have to set our hopes on something so far below what most people experience.
The conversation left me feeling downcast, but the holiday season has me searching for the silver linings in my life. This past month, I’ve begun writing down some memories from the time immediately after my transplant, a long-overdue task. It’s reminded me how amazing it is that I’m alive, seven years later, living at home and leading a life where I’m able to do so much more than I was when I was in the hospital. I may be far behind where I once dreamed of being, but in some ways, it’s so much more than where I could have been.
I’m not someone who believes in blind optimism. There is room for many emotions to coexist — from anger to amazement — and I like to let myself flow freely between each feeling. As I get ready to celebrate Thanksgiving, I’m feeling grief about my grandma, who passed last year, and frustration over minor details of my health that always seem to keep me from an optimal quality of life.
But I’m also celebrating the little things. I have plenty of energy to cook at the moment, unlike some years. I’m planning to bake both a pumpkin and an apple pie for the holiday, and I will be assisting my mom with the Thanksgiving meal. Spending the Wednesday before Thanksgiving cooking together has been a tradition since my childhood, and, all things considered, I feel very grateful to still be doing it with her at 30. Even amid our other feelings, neither one of us takes that for granted.
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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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