My First Post, My Brother Sean and his Journey for lungs.

My older brother Sean is living with Cystic Fibrosis (CF) In the past year his health has declined. He was told that he is going to require a double lung transplant. It was after this news that he started recording things on his blog. It's kind of journal for him to keep track of events and such that lead up to eventual transplant and then the recovery. I guess by me sharing some of my thoughts will give kind of an outside perspective of events as I see them or interpret them maybe someone out there will find themselves in a situation similar to mine, where they have to dig deep to find the courage to support a sibling, or any other loved one. Although there will be more here than my brother's journey, at this point I am sure that Sean's journey will occupy a good chunk of my thoughts.
I support my brother in any way that I can. I have decided that I will do whatever is in my power to help him. I know how hard it is for him to sacrifice the things he has in order to make this journey and I just want him to know that he doesn't have to do it alone. There are plenty of people that are rallied around in his camp. To be there through thick & thin. Even if it means that I am scared or worried, I have to be there on game day to be the cheerleader.

Back in the summer, (July 2010) to show my support Sean and I both got tattoos. Both tattoos are the same, a Vought Corsair airplane, (that represents our late father) with the number 34 on the side (Sean's age of being listed for transplant and for 1934 the year our father was born) also on the side of the plane is (which is now the older version) the logo for the Canadian Cystic Fibrosis Foundation (recently renamed: Cystic Fibrosis Canada). It's both Mine and Sean's first tattoo. But I will always Cherish it as a token of the bond we share as brothers.

Sean has been listed on the transplant list for 5 months now. We all are waiting eagerly for the day he gets his gift of life. We thought that day was upon us January 31/February 1, 2011. While at his home in Penetanguishene Sean's transplant pager went off. He was informed that Toronto General Hospital had possibly procured a match for him. The call came in around 9:20pm on Jan. 31. I received a message online from my mother informing me that Sean had gotten the call. I freaked out. I had to frantically make phone calls to people so that I would be able to go to Toronto General Hospital (TGH) with Sean. So with Sean living in Penetanguishene and me living in Barrie, we had to arrange for a way to pick me up on the way through. My brother's room mate Dan would be driving Sean down, picking him and my Mother up and my Mother's house in Victoria Harbour, and then they would come to Barrie to pick me up.
While on the phone I had to call friends to see if I could find someone to watch Mikayla (step daughter) as my Partner Steve was at work. I could not find a friend that was available for any type of overnight arrangement. I had to get in touch with Steve at work. He was able to leave work and come home. Already by this time my nerves were shot with stress and excitement. When Steve arrived at home we decided the best way and fastest way for me to catch my ride with Sean and the others was to meet them somewhere that would be conveniently located off the highway so that they would not have to waste time driving in town. I had a bag packed with a change of clothes and such as I did not know how long I would be with Sean. We hopped in the car and drove to the Highway 89 cut off into Cookstown. There I met Sean, Dan and my Mother and we drove from there to TGH. Luckily for us it was night time and the traffic was very sparse.
We arrived at the hospital just after midnight, Sean registered in the Emergency ward and then we proceeded to X-ray where he had to have chest X-rays done. From there we made our way to the West wing of the 7th floor. We were taken to a room with no beds, just a bunch of reclining chairs. We all sat down, while the attending nurse came in to check Sean's vitals and collect blood work. At this point we still have no word on what is happening with donor lungs. We don't know when there will be surgery if at all. The anticipation alone is enough to drive you mental, never mind the thought of the actual procedure. I was both scared and excited for Sean at the same time. Excited that he might get a new lease on life, but scared that he has to go through the surgery, or maybe face the disappointment of going home without surgery.
The on-call doctor comes into the room to speak to us. He tells us that there are lungs available, but at the current time he can't confirm what shape they are in or when they will arrive on site. The way he was talking it sounded like the lungs were located out of province some where quite a distance away, we figured out west some place. he tells us that it will be a few hours before we know anything for sure. He does mention its possible that after all the waiting there will not be transplant, as there is no guarantee that the lungs are viable. They just have the recipients come in so far ahead of time so that if everything gets the green light that the wheels are already in motion.
The doctor leaves and tells us Good Luck. We all get settled in for the wait, not knowing how long it will take. We were all in reclining chairs trying to relax. The nurse came back in and gave Sean his hospital gown, and tells him to try and get some sleep. We are told that there has been a surgery time tentatively set for 6am. At this point it is a little after 2am and we are all exhausted, stressed and excited at the same time. The nurse tells Sean that he should try to get some sleep so that if there is a surgery he will be well rested. I am sure at this point Sean's brain is spinning a million miles a minute. The nurse returns shortly after with some anti-rejection meds for Sean to take. After she leaves I hear Sean goofing around, when I look down I see that he has got the plastic medicine cups pushed over his eyeballs. What a time for his sense of humor to show. It really made me smile and actually helped me to relax some. I must admit for someone in his situation he was facing it with such an amazing resolve.
So we all tried to get some sleep. Very difficult with what was going on, not to mention that there was a lack of pillows in the room, and the reclining chairs were not exactly conducive to sleep. We all dosed in and out of sleep for the next few hours. 6am came and went, it was closer to 6:30 when a nurse poked her head in and told us that the 6am surgery had been cancelled. She told us that a new tentative time had been set for 8:15 am. We were told that a porter would be coming to the room to get Sean and move us up to the 10th floor holding room for transplant. Shortly after, the porter showed up, his cell phone rang, and then he told us that he would not be taking us up to the holding room that it had been put on hold again. So we commenced waiting some more. It wasn't too long before another nurse came in and told us that she was going to take us up to the holding room because there was no nurse on duty to keep an eye on Sean. So off we went. When we got to the holding room, which was much smaller than the room we were just in and had very limited seating. Lucky Sean he got a bed, there was only one chair in the room. So we had to wait for them to bring more chairs in for us to sit while we waited some more. All of a sudden I was missing my pink recliner. The nurse took Sean's vital signs again and started him on an IV drip.
A member of the surgical team came in and explained to us that we still at a couple of hours to wait yet. That the lungs still had to go through some assessment at our end before transplant could be confirmed. It was relieving to know that we were getting close to an answer though. Sean's room mate and I decided it would be a good time to go and get ourselves a Tim Horton's coffee, which was kind of bittersweet. I really wanted the coffee, but I felt guilty that I was able to drink it and Sean wasn't allowed any food or drink prior to surgery. However Dan pointed out that Sean was potentially getting new lungs and therefore we should not feel bad about the coffee. Upon returning to the holding room and drinking our coffees while Sean glared at us with contempt lol, we only sat for another hour and half before another doctor came in and told us that after all that had happened they had decided that the procured lungs were not a viable option for Sean's transplant. We all took it in stride knowing that it was quite possible for this to happen. Sure we were all a little disappointed but at the same time grateful that they are so thorough with the assessment. Second class lungs just wouldn't do! Right after receiving the news and taking a deep breath. Dan and I decided it would be a good idea to go back downstairs and get Sean a coffee while they unhooked all the IVs and such. After getting Sean his coffee we all gathered our belongings and made our way back to the car and headed home. Disappointed but not defeated.
Doing the dry run and going through all the procedure we now know what to expect for the next call. Gotta keep our heads up and our minds open. I know it will happen. All good things come to those who wait. And no one is more deserving than my brother. Until then, *fingers crossed*