Today’s email is another one that I have had on my mind for a while now.
The email is dedicated to and comes from Meaghan’s cousin Joey. His favorite saying was “Don’t be a Nancy”.
Joey would have been 23 yesterday if he hadn’t lost his battle to Cystic Fibrosis this summer (to read more about it, click here: www.cff.org).
I think of him and this phrase often as I have been working on myself and my attitude lately. I think of all of the rough days and nights he (and his family) must have gone through in his short 23 years. I think of how hard it must have been to live life struggling for every breath for so long. I think about whether I would have been tough enough to not give in, to not let the harsh reality of the disease turn me into a complainer (at the very least).
Instead, Joey lived his life with a smile on his face and a laugh and a joke or two (or more) for everyone he met. He always put a smile on everyone’s face and even though I didn’t know him nearly as well as Meaghan and her family, he certainly had an impact on me. Meaghan has told me many times about babysitting for Joey when he was younger and doing his special (and difficult) treatments with him at night. She has told me that she couldn’t believe how good (and brave) he was at such a young age.
He made countless appearances for organ donation and for Cystic Fibrosis events, all in the name of helping others facing similar situations.
So, “Don’t be a Nancy” today. Don’t think about the little things that could or will or have gone wrong. Think of the big things that have gone right.
Think of your family.
Think of your health.
Think of our team.
Think of breathing easily…in and out
Since I can’t really explain it as well as he could, I have pasted a speech Joey gave to a group about organ donation awareness below.
Take the time to read it. Take the time to be inspired. While there will never be another Joey Mayer, there are plenty of others out there with a smile on their face despite circumstances that would make most of us shudder.
“Hello everyone, my name is Joe and I’d really like to thank you all for being here tonight. I’ve lived with CF for 21 years, even it if only looks like 12, and the fact that I’m here today is probably a miracle.
I was diagnosed shortly after birth and had a few hiccups my first year, and then I didn’t really have any problems until I was about 8, when I started needing a hospitalization two or three times a year for a tune up.
My first few times in the hospital were horrible for me. I didn’t think I was sick, I still felt ok. I might have been coughing a little more, but I didn’t feel like I had the flu or anything “serious.” I didn’t understand for a few years that it was preventative maintenance or that we were trying to catch it early.
As I started getting into my teens, I started to be able to know when I was getting sick. I’d be coughing more, spitting more, and getting short of breath faster and as much as I hated missing school and the boredom of the hospital, I was always the one to say it, “I need to go in, I’m getting sick.” So they’d do the blood tests and the sputum cultures. They’d hook me up to IV antibiotics and double my treatments to 4 times a day. I’d be stuck for a week or 10 days and then I’d be out and feeling back to normal. But as I got older, around 15 or 16, it wasn’t always back to normal, it might just be I’m better. And I started having to go into the hospital more frequently. By the time I was 17, I spent more time in the hospital than at school. Senior year I was there for 4 days. The rest of the time was spent at home on IV’s and oxygen 24/7 or in the hospital.
So it became time for the transplant list. I met with the doctors, did all the tests, and made sure that I was never away from a phone. It was March of 2006 that put everything I’d been through into perspective. We got THE call. My mom answered the call and we were out the door within 5 minutes. She called my brother’s school and told them to have him ready for us to pick up and she called my dad who was to meet us at the hospital. Thsi was the first time mortality and the seriousness of CF really hit me. I knew it was time to put up or shut up, there was nothing else and it hit me really hard. I was a bundle of emotions the whole day, when we got to the hospital I needed a wheelchair, even though it was the first time in weeks I actually had energy to spare. I was just to shaky to walk on my own.
The whole day was just doctor after doctor, checking if I was okay physically and emotionally. Checking what pills I was on, if I was allergic to anything, and explaining everything about the procedure. Finally after being there for almost 12 hours the surgeon had to come in and deliver the news, the lungs couldn’t be used. The donor had aspirated and there was too much fluid in them.
This wasn’t completely unexpected, it’s quite common with lung transplants because they need to make sure you get the best lungs possible and as bad as I felt after that, it turned out to be a good thing. I now knew what to expect. I was now 100% ready.
I ended up having another false alarm a few months later and that time I wasn’t scared, I was ecstatic.
So now in a few months I had 2 calls but no new lungs and I was still going downhill. I was neededing more treatments, more hospitalizations, and I was losing stamina and lung function. I started getting excited every time the phone rang.
I wasn’t able to go out much and I was on heavy doses of oxygen. I slept most of the day and knew all the nurses at the hospital. It was over a year since the last call and everyone was starting to get really worried. The summer of 2007 was a really rough one, I was in the hospital 9 times between June and the beginning of September. I came home from the hospital on September 5th on 8 liters of oxygen and 3 different IV antibiotics and 2 oral antibiotics. That night at dinner I could barely speak because I was so emotional and out of breath. I went to bed early and couldn’t fall asleep because I was coughing so much and had so much on my mind. I knew time was short and I ended up staying up all night writing notes to my parents, brother, and best friends expressing how I felt.
I was sitting at my computer at 6am when the phone rang. My heart leapt into my chest and my dad came running into my room telling me it was the nurse. We were in the car 10 minutes later on our way there. We got a room in the ICU and everything was fast tracked since I was there less than 24 hours ago. Since I was so sick they didn’t want to wait, they had me completely prepped and in the operating room and the last thing I remember hearing was that they had the lungs and they were good.
When I woke up I had a tube down my throat and didn’t know where I was, but I knew everything went ok. The nurse came in shortly after and the tube was taken out and that first breath was the start of my life. Not just a new beginning, but the start of my life. It was the first time I could remember breathing in with completely clear lungs. No moist crackling or coughing. A full deep breath of air. It made everything worth it, that one breath, that is so often taken for granted, is the clearest memory I have and it will stay with me forever. That was 2 years, 2 months, and 15 days ago and not a moment goes by that I don’t think about it.
Since then I’ve been able to do things that I had thought were impossible. Not extraordinary things, just simple stuff. Like taking my dogs for a walk, climbing 5 flights of stairs, running and swimming. But a transplant isn’t a cure. It’s a last resort, an extension. It’s something that I wish with all my heart wasn’t necessary, but it’s the best chance for people with CF right now. I know someday there will be a cure for CF and when that day comes, I hope I’m around so that no one else has to be terrified waiting for a phone call.”
Again, if you want to find out more or if you want to make a donation to help others with CF, go to this site: www.cff.org.
Jake
