Super excited to have an essay in the NY Times Modern Love column. Click here to read it online. The essay will also be in the print version of the Sunday edition.
As for the writing itself, I don’t know what there is to say. Transplant, CF, and all such things take a toll on everyone involved, and the caretakers are never given enough credit. Just because they’re not the ones with the diseased lungs doesn’t mean things are easier for them.
If you’re new to the site, first off, hello! Secondly, here are some links to similar CF- and transplant-related things I have written.
Cracked.com article on transplant
Blog Posts on CF/Transplant
Beautiful story.
Thank you.
First off thank you for your honesty. I have bronchiectasis and choose to stay single for this reason. It’s never easy … feels disgusting often… think I would never want to put someone else through this. Your wetting makes me think.
Thank you. Believe me, I tried to get my wife to leave me several times early on, before everything went to hell. But she didn’t and I’m eternally grateful for it. There’s only so much we can do about our own conditions, but if you find the right person and are honest, you might get lucky.
Tears in my eyes thinking about my own transplant for CF and everything my wife has been through. Glad you’re still together. I hope you two are stronger, even as you realize how fragile it all is. I’m in ABQ too, btw.
Thank you. Hope you and your wife are doing well too.
I really enjoyed your story yesterday! I read the Modern Love column every week, and yours was definitely one of my favorites. Hope you are doing well and continue to do so!
Thank you!
Thanks for sharing this personal and heartfelt story. As a physical therapist, I have worked with many individuals with CF in their quest to regain health and the wonder of breathing. Your story also speaks to me about the need for brief respites in a relationship that allow partner(s) to regain energy to continue the struggle and rediscover the strength of love.
Thank you. I agree completely. It’s never just one partner that’s stressed, and both need to take care of themselves for the sake of the relationship.
Hello Eirik.
The timing of your article is perfect. I can only relate to the pre transplant period.
My husband struggled with lung disease for years, one time environmental exposure turning his lungs to fiber. He got sick in 2003, before we were married in 2006 but was stable for many years, declining significantly in late 2015. We went through evaluation starting in May of 2016 because we were in “the window”, He was listed August 3rd, despite making it our sole priority to get him listed asap, which included about 7 trips to Cleveland, what we call the lung transplant hazing period. I found a home in the Cleveland area to be close the Cleveland Clinic, begged for a 6 month lease and acceptance of my two large breed dogs, furnished it in advance and the same day were listed I moved my husband and our 2 Great Danes, 5 hours from my home. I did everything possible to make the wait as normal as normal could be given the circumstance all while working a full time job. It all fell into place so I just new the hard work was done and once the call came in and the new lungs came we would turn a corner.
We listed high but the call didn’t come, we knew there were many obstacles, right size, right blood type and so forth but I think my husband secretly had a time frame in his head that he never shared. The anxiety crept in and it seemed there was no rule book or support groups (outside of online groups) for what we were dealing with. He passed on 8/29, his right ventricle collapsed in the ICU….and there I was alone in with no family or friends. The fact that my husband did not get a chance is something beyond difficult to deal with.
Was so thrilled to hear you had success. I have read numerous inspirational stories over the last several months….and knowing the strains on your Monica, happy that she got a break, your doing well and you now both have a different outlook on life. Like you, my husband and I thought for sure we were much better than other couples. Now I am alone, and I just reflect on how fragile life is and I am so thankful that I did everything I possible could for my husband during our transplant journey…..just as your wife did for you.
So happy for you and that you made it to the other side. My goal is to help others go through this experience with some sort of guidance for how bad it becomes as your health quickly declines.
Thanks for sharing your story.
Thank you, Cat. I’m so sorry to hear your husband passed.
If you’d like to help share his (and your) story, you may want to look into the CFRI Caregiver Support Group (http://www.cfri.org/supportgroup.shtml) or the Lung Transplant Foundation (http://lungtransplantfoundation.org). Both have recently been trying to improve their support for transplant patients and their spouses, and I’m sure they could use your help.
I just found your website via your NY Times piece and am working my way through your blog now. I’m also in ABQ, and my daughter has CF. I just wanted to say thank you for writing.
Thank you. Best wishes to you and your daughter.
Read the NYT story. Cudos to you for that great piece of work and the placement. However I have a simple question for you. If the roles were reversed and it was your wife who needed the lung transplant, would you have done the same thing to her? Not the standard answer please (“you never know until you get in that position etc. etc.”) deep down we all know the real answer. Somehow in our society we have come to equate bad behavior connected to emotional distress as equal to real physical suffering. Except in cases of severe mental illness, they are not equal. As a spouse it is incumbent upon each of us to be there when we are needed, regardless of our emotional state. Spouses who cannot do that have failed the only true test of being a worthy spouse. My comments come to you from an ongoing health issue in our family. I wish you the best.
Would I have taken a two week “vacation” to save our marriage? Would I, emotionally fraught and barely hanging on, have taken some time off in order to come back reinvigorated and better able to help my spouse? Yes, absolutely. To imply that a loved one does not experience any kind of anguish during a particularly trying time, that stress is not damaging, to suggest that my wife is not “worthy” is, frankly, ignorant and insulting.