Just Being Alive After Transplant Is Actually Enough
The pressure we put on ourselves to live full, “successful” lives can be debilitating. Transplant recipients can be burdened with extremely high expectations for what post-transplant life should look like. Organ transplantation is an incredible gift, but those expectations can cause a lot of emotional stress and guilt.
Before I discuss the burden that transplant recipients carry, I want to be clear that I am not diminishing the worth or significance of organ transplants. The gift of a transplanted organ and prolonged life is something to be revered and grateful for. Even on their hardest days, all my transplanted friends still feel gratitude for their donors.
But gratitude can exist at the same time as guilt, anxiety, and frustration. And in fact, it is damaging to pretend that the former can, or should, erase the latter.
Receiving an organ transplant is often the last option for those with a terminal illness. So, having a successful transplant can feel like being born again. It’s nothing short of miraculous. Even as a caregiver, it’s hard to explain the depth of gratitude to anyone who hasn’t experienced it.
But the reality is that not every transplant is flawless. Not every organ is a perfect fit, and not every body will have a smooth recovery. Things can go wrong. Infections, rejection, and immunosuppression are always risks, and comorbidities can cause serious problems. As much as I’d like it to be true, my mom’s new lungs didn’t make her invincible or prevent her from suffering from other health issues.
There can be a lot of pressure to ignore the crappy parts of being an organ recipient and to “just be grateful” for the fact that you are alive at all. Coping with nasty side effects from medications is better than not being here. Living with chronic immune suppression is better than not being here. Frequent doctor appointments and soaring medical bills are better than not being here. Most would agree that it’s all worth it, but a lifesaving transplant isn’t a cure-all for all the frustrating and painful parts of the human experience.
For example, my mom has to make regular trips to San Francisco for surveillance procedures and clinic appointments with her transplant team. It can take up to six hours to drive there, which means my parents lose many full days to these appointments.
The trips are disruptive, costly, and inconvenient. Aside from meeting with her transplant team, she has regular appointments closer to home with her cardiologist, rheumatologist, dentist, and dermatologist, to name a few. She has been to a dozen appointments this month alone. Compliance was part of the deal when she got on the transplant list.
This is her new normal. And since this is all keeping her alive and well, she doesn’t feel like she has any right to complain about it. Along with the frustrations of the new normal, annoying parts of the old normal remain as well: bills, conflicts in relationships, car troubles, heaps of unfolded laundry, and so on.
Receiving the gift of life means that you get the chance to live a “normal” one, full of all parts of human existence, including the bad ones. It can be frustrating when people dismiss your feelings because they think you should feel nothing but constant, infallible gratitude to be alive. Shouldn’t we all feel that way? And don’t we all still complain sometimes?
Don’t we all want to enjoy an occasional lazy day? Or the chance to find our path through life without the expectation to live large?
I’m friends with many transplant recipients now, and I have observed a common theme. Transplant patients often feel like they have to do their best at all times. They can feel like they need to give of themselves endlessly to pay for the invaluable gift their donor gave them.
They’re hyperaware of the preciousness of time. In an effort to avoid feeling like they’re wasting any, they try to do it all. They work harder and give more than those of us who haven’t been to the brink of death only to be saved by a stranger’s mortal tissues.
And they fall short and burn out, just like the rest of us. They feel extra guilty when they aren’t living life to the fullest because they know exactly how dear and fleeting it is. And sometimes they even feel like they didn’t deserve the gift. That’s the worst of all.
The desire to not waste their second chance seems to come mostly from within, but those of us who are bystanders in a transplant recipient’s life must take care not to add to the burden. We have to offer them a place to just be a living, breathing human. And if that’s all? That’s enough.
***
Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Mary Geissler
Well said. So true! I hope your mother continues to improve and that life can soon take on less of the 'medical' trips and plan more enjoyable ones for her. Is your mother over 70? Was a single lung implant ever discussed? Thank you for posting this thoughtful article. Mary
Christie Patient
Thank you Mary! My mother is over 70 but she was not at the time of her transplant. Single lung was only discussed as a plan B if a set of two couldn't be matched in time. She was in the ICU on a ventilator before her transplant so time was short, but thankfully she got two healthy lungs from her donor. Many patients who get one lung function just as well with the single healthy lung as double transplantees do, so it's not something to be afraid of if your doctor recommends that :)
Daniel Scribner
I was diagnosed with ipf four years ago. I received my bilateral lung transplant last March. I started off recovery well, then ran into several issues happening simultaneously in Sept - Oct. At my lowest point, I decided that I would not want to live the rest of my life in constant pain and nausea. Of course I got better, and like all other tx'rs, we just want to get back to good enough and to live our second chance to the fullest. This article is extremely accurate. I feel guilty that my donor was half my age with a wife and small children. I am extremely humbled to think of the all the incredibly skilled people and amount of effort put in to keep me alive. Yes, there is a huge desire to pay that back. I would have never made it this far without the support from my incredible wife, caregivers and wonderful friends. Yet I get impatient and frustrated with my perceived slow recovery. My wife tells me to quite whining, I got my lungs. Reminding me the most folks wait months or years once they get listed; I got my transplant in two days. So I take a deep breath, because now I can. I was dying and now I am recovering. I am alive; that is enough in itself.
Christie Patient
Thank you for sharing your story Daniel. I am glad to hear that I have hit on something that is relatable to a lot of transplantees, and hopefully it can be of some comfort. My mom inspired this column by sharing similar feelings with me, and I have heard the same from many of our transplanted friends. It's not a straight or certain path to recovery. I have a friend who's still using oxygen via trach two years after her tx, and as frustrating as it is for her to still be "sick" in this way, she is alive and sharing her light with the world. It's enough to have simply survived at all, and I know there is a huge drive to want to "make the most of it", pay it forward, etc... but it's enough to simply be a living, breathing person. And it's ok to whine sometimes too. ;)
Lydia
Beautiful said.