The Call Back!!!!

Let me fill some of you in with a little back story that lead up to the events that have taken place. First of all it is no secret that my brother has Cystic Fibrosis (CF) and was in need of a lung transplant.
Last week was start of the Tim Hortons "Roll up the Rim" contest. My brother and I were talking about winning coffees and stuff, when I asked him "Hey is there a roll up for winning a pair of lungs?" We laughed about it, and then he edited a pictures to make it look like it said "LUNGS" under the rim. The next couple of days came and went, just average every day kinda things. Thursday night (FEBRUARY 24, 2011) he was at home and I was at home, and we were chatting online. He was telling me about this episode of "Greys Anatomy" that he was watching. The basic story line was that there was a CF patient in need of a double lung transplant. So while I go to set the show to record on my PVR, My Phone rings. Its about 9:30 p.m. The number that comes up is my Mom's. This takes me by surprise because My mom rarely calls out of the blue, and never at night. I knew something was up. I even said to Steve "Oh I wonder what's going on? Mom never calls this time of the day!" So when I answer the phone, the first thing she says to me is "Sean's Pager just went off! Are you ready to go.?" Lucky for me I live in Barrie and it takes them time to get to me. So I had time to get some stuff together. So this is where the adventure begins. Much like the first time his pager went off, I being to stress out and start running all over the house like a crazy person! Steve has to tell me over an over to calm down. For me though, it was impossible. So like before, once I get all my stuff together and I am ready to go, I let my brother know that I will meet them up the highway so that its quicker to just go and we can avoid the Barrie roads.
Our friend Dan, drove us all down to Toronto General Hospital. When we got there, at least this time we had some idea of where we were going. So after Sean checks in at the Emergency room we proceed through the hospital. First we go to X-ray and then from there we head up to the 7th floor West side, via the East side elevators. Upon arrival to the ward they direct us to a room. This time it's a little different than before. The placard outside the room door already has a label in it " EDWARDS " so we're thinking, "Oh this is it this time!" He had to share the room with someone else. So we get into the room, and Sean gets situated. There is a bed in the room and only one chair. Mom takes the chair, Sean lounges on the bed, Dan sits on the edge of the bed and I lean up against the door frame.
The nurses come in and start doing their thing, they check his vitals, they bring him a gown. They said that they had to do some other things and that it would be best if we went and waited in the lounge down the hall and that they would come and get us when they were done. By this point I am a nervous wreck and I don't want to wait anymore. So we go in the lounge and there is one other person in there. She is in her wheelchair and she is watching a movie. She is also yelling at the movie, which was more than a little creepy. And Dan kept thinking that she was talking to him! HaHa!
So we waited for quite a while and finally the nurse came back and said we could go back into the room. We get in the room and Sean is all decked out in his hospital gown stretched out on the bed. Dan goes and sits on the far side of the bed and leans on the table. My mom sits in the corner in the chair and tries to relax against a small counter. Me I take turns between sitting on the edge of the bed and standing in the doorway. At that point I was just too stressed out to try and relax. We were really not sure what was going to happen at this point. The way everyone was talking though, it seemed like this time around it might be the real deal and Sean was finally going to get his lungs!
I was finally able to get another chair brought into the room for me. Shortly after a Doctor came in and took a list of all the medications that Sean was taking at home. And he was told that she should "Take a Sleep" lol. The surgery was scheduled for 8am Friday morning. So the four of us, all crammed it to this tiny area all nervous, scared and excited were supposed to rest. Fat chance that was going to happen. We sat awake for a while, Dan decided he was going to sleep and decided it was time to take his contacts out. This is a big deal because without his contacts in, Dan's vision was useless. Blind as a bat! So I had to take him down to a bathroom, and then guide his blind ass back to the room. Once he got situated and stopped trying to text when he couldn't see his phone he leaned over and fell asleep with his head resting on the table over the bed. My mom had brought a couple of home made pillows from home. She had one out on the countertop and was attempting to sleep. I had the other pillow my mom brought, and I was doing everything in my power to find a comfortable position to sleep. IMPOSSIBLE! I tried behind my head while I slid down in the chair… nope. I tried propping my elbow on the arm of the chair and holding the pillow in my open palm… nope. I even tried resting the pillow against the small sink by the door and stretching my legs out.. That didn't work either. The only position I found any comfort with was to sit with one leg crossed over the other and sit my back pack in my lap, placing the pillow on top of the backpack and leaning my head onto the pillow. It worked a little bit. I think I was able to get an hour or hour and a half at most.
That's when the doctors and nurses started finding their way back to us. They came in and hooked Sean up to some IV meds, they had him take his first dose of the Anti-Rejection drugs. Soon after that they told us it was time to move him down to the Surgical Waiting area!
Another person showed up outside the room with a bed for him. So they got Sean out of the bed that he was in and stuffed him into the one in the hall. From there they took us to the Waiting area.
In the waiting area we met the anesthesiologist and she went over some of the procedure that would happen when they prepped Sean. Sean asked her about using his disposable cameral to take pictures of his old and new lungs. She promised him that a colleague of hers would do that depending on time frame and such. The Surgeon came over to speak to us and told us a little about what to expect and how long it would be.
It was all happening so fast all of a sudden. You wait for this moment for months and then when it comes, everything moves at lightning speeds! We were told Sean would be in surgery for the better part of the day, and that we could wait in the lounge on the 3rd floor. They told us that when it was possible someone would be up to give us any updates as they arose, depending on time constraints and the amount of people available to leave the surgery. We went up to the lounge/waiting room to wait for news. It was not easy that's for sure. We left Sean at about 8:20am in the morning, and we finally got an update from a nurse around 11am. She came in and told us that everything was going as it was planned. The new lungs had arrived and were very "Pretty". She said the Surgeon had cut Sean open 20 minutes ago (10:40am) and that everything looked great. She told us that if at all possible someone would come up and give us another update around the time the first lung was put it. She also told us not to be too discouraged if no one came up, as they would all be very busy tending to the surgery. She said if no one could make it up to see us that someone might call. But for sure the Surgeon would be in to see us as soon as the surgery was done and Sean was closed back up. Again with the waiting game. We lounged for what felt like forever, some of us tried to sleep, but I found sleep was escaping me. I didn't want to fall asleep in case someone showed up with some news about Sean. I didn't want to miss it. Dan and I went for a few walks, which always turned into coffee runs. I found that I had to keep going to the far side of the lounge area to find myself an electric outlet so that I could charge my iPhone. Apparently when everyone is constantly messaging you and you are trying to make constant facebook updates, the battery doesn't last very long. I had to charge my phone quite a bit. At one point in an effort to get some sleep in a comfortable spot, Dan started taking the cushions off the waiting room chairs so that he could make a make shift bed. We waited another 5 hours from the first update before we heard any news. This time it was the surgeon himself. He came in and handed my Mom Sean's disposable camera and told her that he was able to get three pictures of Sean's lungs. One picture of both bad lungs, and then one picture with one of the good lungs transplanted and then another picture of both healthy lungs side by side. We have yet to have the pictures developed.
The Surgeon told us that everything went great and that Sean pulled through the procedure very well. Said there were not any major complications. He told us that Sean would be brought up to the MSICU ward in an hour and that we would be able to go in and see him. He told us it would probably be a good time for us to go get something to eat. He wished us all well, he hugged my Mom and shook mine and Dan's hand. I shook the hand of the man that gave my brother his life back. Amazing!

We went to the food court in the hospital and we got something to eat, killed an hour there and then headed up to 10 west, the MSICU ward to see if Sean was there. We went into another room with lots of chairs. Common theme over those past couple of days. There was a desk with a phone, you were supposed to call the nurses station from the phone and ask about the patient you were there to see. So we did, and they told Mom that he had not arrived on the ward yet. They told us that we should take a seat and the phone would ring when it was time to come see him. Again with the waiting game and lack of more sleep. We sat around in this waiting room for about an hour too. Finally the phone was ringing and no one was answering it. So I walked over and picked it up. When I said "Hello" the voice on the other end said "Edwards?" and I said "Yeah, is he ready for us to see him now?" She told me the room number told us we could come on down.

When we got there I could see Sean through the glass. It's hard to explain all the emotions that were involved at this point. I could see that he was ok and that he was breathing. There were nurses still all around him hooking up various IV's and sensors and all that stuff and getting him his necessary meds. I was relieved to see that he pulled through. But the sight of my brother, laying there unconscious with all those tubes and wires…. It was tough for me at the time. I kept saying to my Mom "I can't look at him like this." We said our short goodbyes to him, as were going to leave him rest for the night.

The nurses told us that we should probably go and get some sleep. She also said that he would probably be out like a light all of the next day as well. She said it would be better if we just went home and came back to the Hospital on Sunday. He would probably be awake by then. So that was our plan. We left the hospital and we all went home for some much needed sleep. Although were all still kind of stressed, we were also so relieved.
The next morning my phone rang an 9am. It was my Mom. She said she had just heard from the hospital and that Sean was awake. They told her that he still had the ventilator hooked up with his breathing tube, that Sean was agitated with all the tubes and what not. Being unable to talk with the breathing tube in he was writing notes. Mom said that Sean was asking for me. When she told me this, my heart broke in two. I felt so bad for leaving the hospital, I thought I should have been there for him as soon as he woke up. We had some stuff we had to do early that Saturday so we went off and did that, but we planned on heading to the hospital as soon as we were done. I was told I could bring Sean's Blackberry down to him so that he would be able to talk to people. So I brought his phone and some toiletries down with me. Before we got there my Sisters Geri and Penny were there to see him, as well as my Niece Lynn. While they were there, Sean had his ventilator removed with the breathing tube and was able to sit up and talk. He was making remarkable progress. I could't wait to see him. My sister took a picture for me and sent it to me. It was like night and day the difference between the last time I saw him and the next morning!

TO BE CONTINUED...

CF Awareness?

I often hear the line that Cystic Fibrosis is the largest, most common genetic disorder causing death among children and young adults across Canada and the United States. However people sit idly by while it happens. There does not seem to be the steam behind an aggressive Cystic Fibrosis Fundraiser. Once a year Cystic Fibrosis Canada (formerly: The Canadian Cystic Fibrosis Foundation, CCFF) holds an event at the Metropolitan Toronto Zoo, called "Great Strides" The event is always successful, however, I don't think it's enough.
I feel that there has to be some way to get CF on the map, and make people aware of the disease. If it was not for me speaking to my co workers about my brother Sean's condition and tribulations with CF, people I work with would have no idea what it is. I find myself day in and day out explaining to someone else what Cystic Fibrosis is. It's always the same questions too "Oh… How long has he had it?" People don't even realize that its a genetic disease and that you don't end up with it, you're born with it. I believe for something that is so common, that there should be more awareness, and more education.
I would like to see more fund raising events taking place over a larger geographical area. You always hear about charities for other illnesses, Cancer, Diabetes, Alzheimer's, Multiple Sclerosis, but only occasionally do you see an ad on Television for Cystic Fibrosis research, or events that are held to raise money. Every year there is a lot of publicity for Breast Cancer awareness and research. Walk a thins and rallies and the whole nine yards. When was the last time you saw an advertisement for "Great Strides" for CF? How many people know, that MAY is CYSTIC FIBROSIS MONTH? There has to be a way to spread the word.
I sent an email to Cystic Fibrosis Canada to ask for some advice or insight on how to start up a fund raising event in my area. I sent the e-mail a week ago and yet I am still waiting for some kind of response or acknowledgment. It's disappointing. I don't want to sit around anymore and feel helpless. I may not be the person with CF but it affects my life. It goes beyond my brother. I know what it's like to be close to someone with CF and to know the daily routine and the struggles. I know what the family members of other CF'ers are going through too. It's time everyone got involved and we take care of this. We need to end CF. Hopefully with modern day advances in medicine we can achieve the goal of finding a cure in my lifetime.
If anyone has any thoughts on how we can come together and work as a team to get an event in the Barrie Ontario area, I am open for suggestions.

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*