"I've lived with a chronic lung disease my entire life called Kartagener's Syndrome, which was caused by my unfortunate but unique condition of Situs Inversus. My life has consisted of challenge after challenge of keeping myself healthy and preserving my lungs as much as possible. Unfortunately, it was always known that my lung function would only decrease as well as my quality of life.
Over the past few years, between natural cause and having a mind set of "that won't happen to me" well it's all finally caught up to me.
August of 2017, I was rushed to the hospital after my body gave up on me. Those couple weeks in the hospital literally flipped my life upside down from my job, my security, my relationships, and what my future had in store all together. Finally when I was able to go home, it was on oxygen and orders to head to UPMC to start testing for a possible lung transplant in the future.
I've never fully recovered still from August of last year and even got to bring in 2018 in a hospital bed. I had to adjust to a lot of things in my life both mentally and physically. I struggle daily with even the simplest tasks that involve moving around too much due to my oxygen dropping. I don't get to be the playful mother with my children that I want to be or should be able to be by chasing them, teaching my daughter to dance, or run down a field by my son.
On June 21, 2018, I got the call from Pittsburgh that the next step in my health journey would indeed be a transplant and that I was approved for it, pending a couple tests.
On that day, every emotion and thought went through me like a train. "I'm only 27. I'm a mother of two toddlers. I've finally found the love of my life. This shouldn't be me. This isn't fair."
On September 6, 2018, I was about to walk out on the beach with my family when I got the call that I was officially listed for a double lung transplant and to "be ready to go when the call comes."
Im now finally admitting, I'm ready for this. And as odd as it may seem, posting this part of my life on social media was an extremely hard challenge for me. It's not a side that I like to share but I'm realizing that I shouldn't be ashamed to share. I've become so used to feeling sickness, chest pain, and exhaustion that I've learned to smile through it and sometimes don't even realize how sick I am until I'm knocked completely down. A lot have seen me in just the past week and I bet couldn't even tell I'm currently fighting off a case of pneumonia. Unfortunately, I'm just so used to feeling this way that I've learned too well of how to hide it.
Today, after over a year of trying to hide how badly my health has declined, I'm finally lifting the weight off my shoulders and letting it out. Trying to hide the fact that I need to wear oxygen or need to slow down is taking more and more of a toll on my body and mind. I've felt ashamed to wear oxygen in public or to admit that I can't walk that far or need to stay seated or can't stay awake that long. My body works twice as hard to function and I feel every bit of that through exhaustion. Again, this surgery couldn't come soon enough.
Yes, I'm only 27, but I'm going to get through this surgery and realize the best is yet to come.
I'm a mother of 2 beautiful children that I fought in such a beautiful way to bring into this world (that's a whole other story!) But I'm going to get this surgery and watch my babies grow up.
I just found the love of my life who I'm now officially going to marry. So for those of you asking a date...now you know why our planning may be a little off with what's going on and not knowing when the call may come. But we still have a whole life planned together and it includes growing old.
This surgery will be a huge milestone for me. It's going to change my life completely. As many times as I've thought "this isn't fair," I'm realizing that life is a beautiful mystery and you can't see a rainbow without a storm first. This is my storm and I'm going to dance in it.
I'm thankful for all those in my life who've known already and have been there for me in so many ways. I still have a long road ahead and I'm going to need all the support I can get. My family, too, will need all the support they can get.
I'm beyond thankful for the motivation and drive that so many friends and family, especially my parents, have already shown by putting together fundraisers and raising money for my healing period, during which I'll have to be living in Pittsburgh. I personally was putting it all off while still in my denial of all this but thankfully my mom has been on it full force.
If you've taken the time to read this post, I thank you so much. Please know that I'm not scared, I'm ready for this, and I appreciate all the prayers and thoughts. I plan to keep everyone updated on my journey and look forward to so many of you becoming a part of it ."
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- Jonathan Pittman
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