Hey Hey Hey friends, family, and blog followers.....
First and foremost, apologies on the delay in updating the blog. In our case, no news was just that...no news. Until now.
As some of you know, Corey recently got out of the hospital after a bout with pneumonia. And to quote him..."I never felt bad, I just couldn't breathe" (well, with an o2 level of 85, I can see why!). Pneumonia is not uncommon for him around this time of year, but in this case, it came as a blessing in disguise. If you have followed along, you know that the original plan was to remove his left lung, which is heavily diseased and non-functioning. Five days before his long awaited surgery, it was cancelled due to a lapse in his insurance. After fighting for his insurance and a way for him to get the surgery, it was decided by his doctors that he was no longer able to work in his field of construction any longer and he had to file for Disability and Medicaid. Obviously this was met with some resistance...as a young guy, with a lot of life to live, just hearing the word 'disability' was a hard pill to swallow. To look at Corey you would never see him as 'disabled'...and physically, he is strong and mobile. His problem, is that the bronchiectasis has taken such a toll on his body that if he were to continue to work, his chances of long term hospitalization were increased. Pneumonia is something he is very susceptible to and was becoming a recurrent theme in his life...and with only one functioning lung, he couldn't afford to put himself in an environment that would increase those chances.
Fast forward to now....
After his most recent stay at University Hospital in Cincinnati, his team of doctors became very interested in his case. They even questioned his original diagnosis. It's rare that a person with Bronchiectasis would have the majority of the disease in one lung vs. both lungs. Right now, his left lung is completely shot, and his right lung is showing traces of disease. According to the doctors, this is something they typically see in patients who have undergone radiation in the past. Corey has not had radiation. Chemotherapy, yes....but not radiation. Through a close examination of his medical history, his team became quite interested in him as a patient. We've been working on getting his disability approved, but thankfully, the growing interest in him prompted them to put him in touch with a social worker who is confident that he is 100% qualified for disability and she is doing everything in her power to put him on the fast track to final approval. His team of doctors decided that once the disability is final, and his Medicaid is approved, he will start all necessary testing to get him ready for.....'drumroll'...A Double Lung Transplant.
Before you start to feel sorry for him, remember this. This is a GOOD thing! It's a major thing...but it's a good thing. Removing the old lungs will rid him of his disease. Getting new lungs will pose an obstacle course of challenges, but in the long run, it will give him a quality of life that he hasn't known in such a long time.
Once everything is approved and moving forward, he will move to the Cleveland area. It's necessary for him to be within 3 hours of The Cleveland Clinic when he gets the call to surgery.
By clicking on the link above, you can read all about what he will be going through as he prepares, and later recovers from his transplant surgery. I have no doubt that once this surgery is complete, Corey will go on to live a life that he hasn't known in so long.
He has battled Bronchiectasis since his diagnosis at age 22. We watched, with our hands tied behind our back, unable to do much of anything to help him, and not at all knowing what he was going through.
I've always believed that my brother was born to do something great...I know that with each diagnosis he receives, each phase of bad luck, and each punch in the face he gets just when things start to be going well he must think to himself 'WHAT IN THE F**K'! But he keeps fighting, and he keeps smiling, and he hasn't once let anything get him down. This latest news is proof to me that he is here for a purpose....and I believe that purporse is to pay it forward...to touch someone's life. I have no doubt in my mind, that once this surgery is complete, we will see him as an advocate for patients...as someone spreading the word of the importance of organ donation, of keeping a strong mind and a sense of humor. I see him as being a mentor to someone in need of a friend who has been there done that. I see him as a medical case, that may help answer questions for future treatments on patients such as him.
The positive outcome of this and the possibilities for him are endless. He may be getting new lungs, and it may be a difficult road....but he's also getting a new lease on life. His life is only just beginning and we, as a family, thank each and everyone of you who are supporting him, thinking of him, and praying for him. We hope you will continue to support him by enjoying every moment you have to the best of your ability..laugh in the face of uncertainty, and stand up to the challenges that come your way. We don't know what our futures hold, and we only really know for sure that we have one chance on this earth...so when you feel yourself spiraling down a path that you feel you can't get out of, remember, that as long as you can take control, and feel your strength from within, you can do anything, conquer anything and you can do it with a smile and a sense of well being.
I recently came across a set of journals that had a pre-printed quote inside. I'm not sure who the author is, but I wish I could thank them for their words to live by. So, I will end this blog now, with the following quote, that speak volumes:
First and foremost, apologies on the delay in updating the blog. In our case, no news was just that...no news. Until now.
As some of you know, Corey recently got out of the hospital after a bout with pneumonia. And to quote him..."I never felt bad, I just couldn't breathe" (well, with an o2 level of 85, I can see why!). Pneumonia is not uncommon for him around this time of year, but in this case, it came as a blessing in disguise. If you have followed along, you know that the original plan was to remove his left lung, which is heavily diseased and non-functioning. Five days before his long awaited surgery, it was cancelled due to a lapse in his insurance. After fighting for his insurance and a way for him to get the surgery, it was decided by his doctors that he was no longer able to work in his field of construction any longer and he had to file for Disability and Medicaid. Obviously this was met with some resistance...as a young guy, with a lot of life to live, just hearing the word 'disability' was a hard pill to swallow. To look at Corey you would never see him as 'disabled'...and physically, he is strong and mobile. His problem, is that the bronchiectasis has taken such a toll on his body that if he were to continue to work, his chances of long term hospitalization were increased. Pneumonia is something he is very susceptible to and was becoming a recurrent theme in his life...and with only one functioning lung, he couldn't afford to put himself in an environment that would increase those chances.
Fast forward to now....
After his most recent stay at University Hospital in Cincinnati, his team of doctors became very interested in his case. They even questioned his original diagnosis. It's rare that a person with Bronchiectasis would have the majority of the disease in one lung vs. both lungs. Right now, his left lung is completely shot, and his right lung is showing traces of disease. According to the doctors, this is something they typically see in patients who have undergone radiation in the past. Corey has not had radiation. Chemotherapy, yes....but not radiation. Through a close examination of his medical history, his team became quite interested in him as a patient. We've been working on getting his disability approved, but thankfully, the growing interest in him prompted them to put him in touch with a social worker who is confident that he is 100% qualified for disability and she is doing everything in her power to put him on the fast track to final approval. His team of doctors decided that once the disability is final, and his Medicaid is approved, he will start all necessary testing to get him ready for.....'drumroll'...A Double Lung Transplant.
Before you start to feel sorry for him, remember this. This is a GOOD thing! It's a major thing...but it's a good thing. Removing the old lungs will rid him of his disease. Getting new lungs will pose an obstacle course of challenges, but in the long run, it will give him a quality of life that he hasn't known in such a long time.
Once everything is approved and moving forward, he will move to the Cleveland area. It's necessary for him to be within 3 hours of The Cleveland Clinic when he gets the call to surgery.
By clicking on the link above, you can read all about what he will be going through as he prepares, and later recovers from his transplant surgery. I have no doubt that once this surgery is complete, Corey will go on to live a life that he hasn't known in so long.
He has battled Bronchiectasis since his diagnosis at age 22. We watched, with our hands tied behind our back, unable to do much of anything to help him, and not at all knowing what he was going through.
I've always believed that my brother was born to do something great...I know that with each diagnosis he receives, each phase of bad luck, and each punch in the face he gets just when things start to be going well he must think to himself 'WHAT IN THE F**K'! But he keeps fighting, and he keeps smiling, and he hasn't once let anything get him down. This latest news is proof to me that he is here for a purpose....and I believe that purporse is to pay it forward...to touch someone's life. I have no doubt in my mind, that once this surgery is complete, we will see him as an advocate for patients...as someone spreading the word of the importance of organ donation, of keeping a strong mind and a sense of humor. I see him as being a mentor to someone in need of a friend who has been there done that. I see him as a medical case, that may help answer questions for future treatments on patients such as him.
The positive outcome of this and the possibilities for him are endless. He may be getting new lungs, and it may be a difficult road....but he's also getting a new lease on life. His life is only just beginning and we, as a family, thank each and everyone of you who are supporting him, thinking of him, and praying for him. We hope you will continue to support him by enjoying every moment you have to the best of your ability..laugh in the face of uncertainty, and stand up to the challenges that come your way. We don't know what our futures hold, and we only really know for sure that we have one chance on this earth...so when you feel yourself spiraling down a path that you feel you can't get out of, remember, that as long as you can take control, and feel your strength from within, you can do anything, conquer anything and you can do it with a smile and a sense of well being.
I recently came across a set of journals that had a pre-printed quote inside. I'm not sure who the author is, but I wish I could thank them for their words to live by. So, I will end this blog now, with the following quote, that speak volumes:
EMBRACE THE MOMENT
to embrace the moment is to realize how precious life is and that each day is a gift. when you
embrace each moment you agree to live in the 'now', taking in all that surrounds you. it is
about awareness.
there is a certain calm you will know when you embrace the moment
when you embrace the moment you quickly build a new habit. it becomes easier to trust the process and be in gratitude
slow down just a bit. breathe life in and
embrace the moment
it is addicting
Hey Big Sis!!!
ReplyDeleteYou're right -- at this point, this IS a good thing!!! I hope your brother's journey is amazing -- O2 sats of 85 and 25% lung function are not all that pleasant to live with -- I know -- I was there... I have cystic fibrosis, not bronchiectasis like your brother -- but when you're struggling breathing, it really doesn't matter much what you want the underlying diseases are...
I hope his wait on the list is not that long... I hope his journey to and through transplant are as amazing as mine was... And I hope his life after transplant is as amazing as mine is now... I'm ten years post double-lung transplant now, and this breathin' stuff blows my freakin' mind every single day, Sis... I think about it constantly -- I'm always in awe...
I was lucky enough to learn about my donor -- I learned about the beautiful girl who saved my life... Her name was Kari, and in the month before she passed she told her family how strongly she felt about organ donation. Twice. She's always on my mind -- I can see her smile when I close my eyes... I have a little of our story at www.ClimbingForKari.org
And now -- I do what I can to tell people about Kari... But also to tell people about how important organ donation is so that people like Corey get what they need, when they need it...
I hope he's hanging in there... I know he's got an amazing Big Sis supporting him... You mentioned that you "watched, with your hands tied behind your back", feeling there was nothing you could do -- but you may not understand just how much being there means -- it means so very much to people like Corey and me... You take care of him...
Love, Steve
Steve Ferkau
Chicago, IL
Steve. I am in tears reading your story. I am touched beyond words that you took the time out to write this. You have no idea how much it means to read this....we try so hard to stay upbeat and positive....but sometimes we need to hear from people like you..and today of all days, I'm so glad I signed onto this to read your story. I hope you don't mind if I share your comment with my friends and family....I probably have so much more to say, but I'm so anxious to see your website. I can't thank you enough for posting...please stay in touch. And I hope you don't mind if we come to you or pop in on your site from time to time for a pick me up. :)
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