Chronic Illness

Angry To Be Sick For Life, But Grateful To Be Alive

After my own lung transplant, I'm here to tell you it's okay to be both angry at the universe and grateful for the life you have left.

Send Me More Stories About Chronic Illness

Thank you! We will notify you when there are new stories about this topic.

I’m coming up on the 3rd anniversary of my lung transplant, which I wrote about for Folks two years ago. I’ll forever be grateful for the gift of that lung, and how it has extended and improved my life, but that’s not to say that life is easy. I am not dog sledding in Alaska or big board surfing in Hawaii. Some days I don’t even get out of bed.

It’s the meds. The meds that are keeping me alive are also wreaking havoc inside of my body. Their job is to protect my new lung from rejection. In order to do that, they suppress my immune system… giving every cold, flu or bacterial infection that comes along an open door policy into my body. And these aren’t nice, sweet homeopathic remedies: they’re hard core pharmaceutical nukes that don’t play nice with any of your other organs.

When you get a lung transplant, there’s a whole ‘Heinz 57’ of side effects that most doctors don’t tell you about until after the procedure is done, and you start experiencing them for yourself. Then, the doctors and nurses nod, and say: “Yes, that’s totally common.” And despite the shock, you go along with it, because you’re just so grateful to be alive.

These side effects wear on you, and if you’re like me, you keep them to yourself. Because you are grateful, and want to honor your donor, and think that being honest about how deeply exhausting and hard the post-transplant experience can be would somehow be betraying those sentiments. 

But after a small health crisis last spring that was due to a bad reaction to one of those aforementioned ‘big guns’, I think those of us dealing with lifelong chronic health issues would be a lot healthier if they just opened up a window and yelled out: “I’m mad as hell and I’m not going to take this anymore.” 

Because being grateful for the health you have and being angry at the unfairness of being sick don’t have to be mutually exclusive.

Because being grateful for the health you have and being angry at the unfairness of being sick don’t have to be mutually exclusive. I am grateful, because I know that I’m in a lot better health than many other people who have been in my position. But that gratitude has nothing to do with how angry I am when I look at the army of pills standing on my nightstand, and think about swallowing all of them one more time—despite how bad they will make feel. Thinking: I cannot put this shit into my body today, I just can’t. But then doing so one more time because I have to.

The crisis that got me thinking about this was dangerous, downright dumb—and testament to the fact that everyone should always double-check their meds before taking them.

For two years, my dose of my heavy duty anti-rejection med, Prograf, has been 0.5mg every morning. It comes along with its own little goodie bag of side effects but I’ve made peace with them. Then, last March, the pharmacist accidentally prescribed me ten times my normal dose. Within a week, I felt so awful, I would go to bed scared that I wouldn’t wake up in the morning. Eventually, I went to the hospital: I was in kidney failure.

It’s okay to look at your little life savers on a particular morning and say “I hate you, but I’m grateful for you.”

The meds-for-life road is hard for all of us who have no choice.
And I’m here to say: it’s ok if you need to open the widow and shout sometimes. It’s okay to look at your little life savers on a particular morning and say “I hate you, but I’m grateful for you.” You’re human. You can be grateful and mad as hell at once. Just make sure to double check your pharmacist’s work.

Send Me More Stories About Chronic Illness

Thank you! We will notify you when there are new stories about this topic.