Another weekend in the hole

Well its Saturday morning, 1 month 1 day since being in here. Lets see whats new. If you follow me on FB you know that they sprung another surgery on my yesterday. My sternum had moved yet again. Which meant they had to go back in....boooo. So least to say yesterday was another emotional roller coaster. I know it was nothing serious but still ended up breaking down. Guess like I said previous its a good way to shed that extra liquid but I can think of better ways then in tears :( So the morning started ok, breakfast came and dug in to eat. Then the Dr showed up and told me the news. That they had noticed it from the x ray the evening before yet had seemed to miss it in the afternoon x ray of thought there was something there so that's why I had another one in the evening. So after he was done and I was done tearing up a storm yet again...yah seems to be routine now sadly. I got a hold of my mom. She scrambled to get a hold of my best friend Dan to see if he could drive her down as she has no drivers lic. Finally got a hold of him and plans were set. They gave me no definite time for afternoon procedure. They said it could be anytime and that they were gonna move around the schedule to fit me in. The porter came to pick me up around 12 to take me down. I was going crazy I had no idea where my mom and friend were. I went down to the holding area where I sat there for 2 1/2 hours before going in. Luckily I got the nurse to call up to the floor here and to advise to send my mom down when she got here. They showed up about 30 minutes before I went in which was nice and what I needed instead of just sitting there with stuff running thru my mind, not a good thing I think.
I was wheeled into the OR where they started preping me. And me being me trying to be funny and keep my sense of humor, offering my help to hold anything they need during the procedure. I never got so many laughs and was told that was the first time anyone had ever said that. Although clearly id be completely useless once I was under.
I woke up just after 5 in recovery where I sat there trying to suck on ice chips to moisten my mouth yet again. While I was under they also preformed another Bronchosopy so so far I have had 3. And seeing as Ive heard nothing back must all be good with no signs of rejection YAY! That's the kinda news I like to hear.
So what had happened is the top of the sternum lock the screws had come loose due to weak bone from some osteoprosis, another lovely cf charastic due to the melabsorbtion that we face with. So they were gonna put some larger screws then wrap everything up with wire so nothing should move now. If it does I will have to get the superman logo tattooed on my chest lmao. I have been their first case that have had so much problems with the sternum fixation. Like I say its the Edwards luck.
I was in alot more pain the normal after,which I don't know means they did a better job?
I had read awhile back and there is actual scientific proof that some recipients will pick up certain character from their donor, weather food wise or athletic stuff, or really anything that they would have never dreamed or seemed themselves ever wanting to do if they had not gotten a transplant. So with this in the back of my mind I asked my mom if its just the hospital stress that is doing it or was my donor a very emotional person that was not afraid to show their feelings. Why I say this is ever since I have become very sensitive to things happening or happened to me resulting in tear fests lol. I guess I will only know for sure after I get out of the hospital.
Well I think that's about it, hopefully the weekend flys by, the drainage tubes slow right down and I can get outta here sometime next week. They already seem not too be draining as much which is a good sign.
And besides I'm gonna try and catch another nap seeing as its almost 4:45 in the morning and I've been awake since 4am and didn't really get to sleep till after 1:30 :(

Almost a month down

Here I lay in the hospital bed trying to sleep which I cant. So I'm gonna blog lol. I only have a couple of days till I have officially been admitted for a month. Still cant believe I had transplant all the way back Feb 25th. The Dr came in today and checked my chest and sternum to make sure everything was still good. If you read my previous blog I had another surgery Monday to repair and refasten my breast bone. I asked the Dr today how big of a piece of titanium do they use. He says here ill show you pictures. He whip out his crackberry and shows my pictures of my procedure WTF. Its not an long flat piece, its a short "H" shaped piece with a green coating. I don't know to feel special that I was a special case resulting of him taking pictures. If I see him tomorrow I will see if he can email them to me. Those kinda things interest me. The weird stuff they jam in your body. So as it is its just another waiting game on the drainage tubes, they have slowed down. Now if they just slow down enough to be removed this week then I can hit the road home for the weekend. I have another chest x ray tomorrow. This time I'm gonna take it easy stretching around the x ray table. I seriously pulled something last night during the x ray and left me with a really sore chest :(
I am getting so antsy to get out and enjoy the outside and get my life back on track. I have lots planned :)
Right now my brother and I are getting things together for the Great Strides walk down at the Barrie waterfront. Its the first year its being held down there. The other large one is held at the Toronto Zoo. We are gonna try and make it very public. With getting hold of the local news station. Also get some big dignitaries to walk as well, my brother has already contacted the MP of Barrie Patrick Brown and he has agreed to come out and walk with our team. I also have to contact the mpp of simcoe county and see what he might do, his Secretary did tell me awhile back to keep them posted on my outcome of transplant, that they were very interested. I think this is gonna end up bigger then we expected which is awesome. I'm also wanting to get home so I can start collecting some pledges, my brother has already collected $400 of the teams $1000 goal which I'm sure we can pass! It just feels like I have to give something back for this wonderful gift I have received. Cause god knows Thank You just isn't enough!
In other news, today was a good day. The swelling in my legs and feet didn't seem to be as bad, its taking a long time to get rid of this excessive water in my body. But any little improvement is better then nothing. My good friend Dan brought my girl friend down today, I haven't seen her for a couple of weeks. I enjoyed spending the afternoon together and quiet frankly have never felt more happier in life right now :) its truly amazing. Its been along time since Ive had the falling in love feeling and it feels wonderful!
When they got here we all headed downstairs for some lunch. I had to get my Hero burger combo, man I cant believe how addictive those burgers have become lol. Usually I stick to that or Subway.
They had a nice winter storm here in the city, well what they call a storm we would call a dusting up north lol. Its so funny lol.
Well its getting late, I should try and get some sleep....ya right lol.
Goodnight all!

Tuesdays here

I didn't get much sleep last night. Not really cause of pain but I wasn't very tired. Didn't get to sleep till 2:30 am and then was up at 6:30. My chest is feeling really tight, its hard to say if its really more sore then tight. Ive only used the pain medicine on demand a couple of times. Bad experience last time I had it so I'm trying not to use it too much. On the plus side my water retention seems to be down this morning. My legs don't seem to be as swollen :) hopefully it stays that way lol.
I guess I will just be trying to take it easy and give my body some rest. Fingers crossed that I can get out of here by the end of the week. I don't think I can handle it in here any longer lol.

Monday Monday

As of midnight last night I haven't been able to eat or drink anything well except water to take my meds. Ive been chewing alot of gum which is kinda helping out with the starving pains lol. The one nurse came in to shave the last 2 hairs off my chest in prep of surgery, I told him that all the tape has pretty much taken care of that lmao. According to his sheet im not booked till 3:30 in the OR. The Dr was just in and was telling me that they will have to put another drain tube on my rt side to take care of the small pnmothorax that is there from the clamps rubbing but should only be in for a couple of days. I asked that when the tubes are all out is when I can go home and he said YES! so here's to a speedy drainage! My water retention seems to be a bit better today, still sore after walking for a bit but any little step forward is better then a step backwards.
So here's to hoping I can make an escape to home sweet home at the end of the week. T minus 5 days :)

Pondering life

I slept in this morning till 5 am wooo hooo. I still don't understand how they expect you to comfortably sleep in a hospital, I think its just the atmosphere.
Anyways I came online surfed a bit, not too much happening 5 am Saturday morning on facebook lol. So then I just laid back in bed thinking. Remembering the days when I would run anywhere I wanted to go, ride my bike with my brother (that died when I got my licences lol) just the general freedom. Previously I had been pretty lucky living with CF with only 2 hospitalizations which I'm not sure is good miss treatment. The last year was hell with having to wear O2 24/7. I could go out to places but really only for a limited time and I always had to be home to sleep. My whole life was planned around O2. I tried to stay as active as I could which I think helped me out with the fast recovery. I guess I really never noticed the gentle decline of the activity I use to do, just slowly do less with out much notice. I have your word that these new air bags are going to get a good work out. I am looking forward to long walks, back to enjoying summer activities and bonfires(that is the one thing I missed the worse last summer) I I am already counting down the days that I can get back to work. The way I feel it should be about Sept. that will be 6 months post as long as I don't run into any complications. I should be done my required 3 month physio by the end of June/starting of July then will have the summer to spend catching up on stuff.
They say you don't suppose to drive for 3 months because of the meds playing with your head and such, but I have had no symptoms of anything so depending on how my chest feels I may drive before then. Although I will get rides to T.O for physio to play it safe.

Again I am speechless for the gratitude of the donor and their family that have given me a second chance. Thank you Thank you Thank you !

An update from yesterdays news

They came in a talked, stated that I was too strong and had pulled the wires binding my breast bone together. So the surgery is now booked for Monday afternoon. Where the will put me under, remove the crappy wire ties and install a titanium plate. That's right gonna be part cyborg lmao.
In other news the "team" came in this morning for a check up and said they are gonna pull my central iv line in my shoulder cause Ive done the 3 weeks of antibiotics. They will just put a regular saline lock iv in my left arm. They also want to do and ultrasound on my right arm for all the swelling to make sure theres no blockage.

Thats all for now.

Terrible news Thursdays what good are they?

Went for a chest x ray yesterday and this morning they told me they thought they seen a little bit of pnomothorax starting again on the right side lung. So they scheduled another x ray this morning. Which it turn still showed the same thing. First thing this morning the one dr came in to try and tighten my last chest tube up cause it keeps leaking all over me and my bed. He managed after excruciating pain. Then noticed the bump on the top of my sternum incision, which I had shown them last week and was told not to really worry about. The Dr started pressing down on it trying to replace it with no luck. Getting back from lunch he met me in the hallway where the porter was taking me for an ct scan which I was unaware of. The dr asked if I could get a family member here for 6pm or so cause they want to explain and get me into surgery to realign my sternum. They believe that that one of the three internal rings holding it together is now moved and is scratching around the right side lung causing the pnomothraxs.
I pretty much lost it there, I was nothing but tears, he said everything is fine, they just have to completely put me under to do the repair and its the best thing. Although I do agree it just all came at once. The stress of spending day in day out alone away from family and friends is really getting to me. I told the Dr flat out I have never liked hospitals. And even worse for losing my dad. I know I have gotten this far but its still tough on the mind and soul. There is just no explanation. And you just cant give up although at times I wish I could just pack my bags and say see ya!

So as this comes I don't know what my timeline is now to get out. I would imagine when I come to I'll be riddled with more chest tubes to start the process all over. I have no idea if I can mentally handle another 2 weeks in here. The food, the atmosphere, non freedom just sucks. I haven't been outside for 2 1/2 weeks now. This retention of water is driving me nuts. It seems soo slow to go, wish they could just suck all the extra water out while I was under getting my sternum repaired. I cant take much more of the pressure on my legs (cant even bend down, dropped my bank card downstairs and had to ask someone to pick it up for me.) and the pressure off all the water collecting around my groin makes like terrible. Makes me wish I was a women lol. I know probably too much info but I need a cup I I think to hold everything up :( But I don't think they sell them at the hospital lol.

I should also let you know the doctors reason why things shifted...."im too active" but isnt that the thing they explain they want you to be as soon as your out of surgery? Im confused

Just wanting to get out of here now.

You can truly tell when your back to yourself, when hospital life starts getting to ya and you get fed up over little things.
Things have been moving fairly smoothly along. Since being in step down. I was moved up to the 7th floor a day or so...ive already started forgetting dates things happened along the road. So ya I got up to the 7th floor and bunking with another roommate. All who have seem to keep to them self and have their curtain drawn right around them, does not bother me more privacy for me.
I ended up with a bout of hiccups which I ended up having for almost 6 days, unbelievable annoying and painfull. To the point that after meals when my stomach was full and was trying to take all my meds I would bring stuff up. So they decided to send me for my first Bronchoscopy and a endoscopy to make sure there was nothing happening in my stomach. The Bronch came back good nothing looked bad. Then came the endoscopy which showed that I have a slow opening stomach go figure, which can be looked after with a simple pill. So that was that. So I just continued on my merry way. Next I can into low hemoglobin which a couple of transfusions brought that back, im guessing from all the blood they take from me day in and day out. The next thing on the list to deal with was low sodium it was only at 116 when normal should be 130 plus. They figured it was just cause of the big operation. So for the last week and a half I have been on a fluid restriction of 800ml of liquid per day. Let me tell you this is freaking hard especially when your a big drink person. I got that back up by this Monday so they raised it to 1000mls so generous lol. I have now started reattaining water in my leg,feet and groin area. Not fun at all. im slowly working it down but its really hard especially in the groin area makes it really hard to walk. I had gotten 2 chest tubes removed when I was in step down and then 1 inserted for a tiny pnomothorax that showed up on an xray. That one just got pulled so now I still have my last 2 original ones. They are still showing alot of draining so they can not be pulled. The doctors have pretty much said as soon as they come out I get outta here. I hope its soon, they have been in so long that they have worn the hole into the skin bigger so they are forever leaking. That is one reason I am writing a blog at 5 am cause it started leaking all over me yet again and they have to change the dressing. I then just couldn't sleep at all tonight. Ive kept the foot of my bead elevated high to help with the fluid retention in my feet which helps. They are also doing reno work in the room next to me all Ive heard since 2am is a router going. I guess I will have to try and catch up during the day on sleep. Believe me it got to me after having my dressing changed that having to change myself, I pretty much broke down in tears :( The one thing that is preventing me to get home is making me uncomfortable too how fair is that Boooo!

The day

Sorry fellow bloggers for being so behind,some of you that are also on my FB know Thursday Feb.24 at 9:30 pm I got the second call for lungs, only the tone in the voice they sounded alot more hopefully of these. Was told the OR is booked for 8am the next morning.
Well as you may have seen my playing around with a contest cup we have going on up here in Canada that I photoshoped the win lungs! That night too me and my roommate were hanging out on the couch, the average weekly night. Friend messaged me to watch Greys Anatomy as they were dealing with a double lung transplant patient due to CF.Not even 5 minutes into the show. "Mr Edwards? How are you tonight this is Toronto General Calling, we have located a set of lungs for you. How are you feeling? and can you be down here by12:30?" while hes talking I'm kicking my roommates foot. Get off the phone and say they got lungs. He rushes upstairs to get his son of of bed to drop him off at his grandparents. After that headed past my moms to pick her up then south to the city. stopped at the service station where my brother jumped in.
We were already familiar with the plan because of the dry run last time. Only this time they seemed alot more organized and speedy at getting things done. The final word came around 7 I think that the lungs were at TGH and would be heading down to pre op at 8. While we waited in the pre op we chatted and kid around trying to keep spirits up. Then the time came to wheel me away, I said my goodbyes and kisses. As I was leaving them I was in tears. The last time I cried was when my dad passed away. When I got into the ER it was a sure cramped spot. They got me on the table and then tried starting my artery line in my wrist then had to switch to the other to try, only they ended up using both wrists lol. I then handed them my disposable camera and asked if they would mind taking a few pics of the operation. They said they would see what they could do because they would be very busy, I said well I mean don't drop everything to take a pic that's ok lol. Here's me laying the OR table and still joking around.
So they held a mask against my mouth and told me to take some deep breaths to get my o2 up next they said your gonna start to feel a little drowse.
The next words I heard were Congrats Sean! you have new lungs! when I woke up Saturday morning. Hell I cant even sleep in after major surgery :P

I will Write some more another day, there is lots to cover!

A man and his jeep

This is completely off topic but its one thing that is dear to my heart lol. So here is the story...

I driving a piece of crap 1982 Chevy Celebrity. This thing left me stranded more then a few times. Seemed it had a appetite for alternator belts. I wish I would of stuck with my 1985 Ford Tempo, except for the rust (yah who would of thought a Ford could rust lmao) the thing was a tank and never left me stranded once! Anyways I decided to start looking for another vehicle. I had driven by this car lot a few times and noticed a 1987 Jeep Yj. So after hours I stopped in and had a look over (I hate going during business hours and dealing with pushy sales men. It was a decent price and they offered guaranteed financing! This was good cause up to then I did not have any credit behind me. So I talked to my buddy that weekend and he gave me some tips for driving standard as id never driven stick before. I took his moms VW a few rounds around the mall. So Monday came and him and I went over to the lot and talked. We got to take it out for a test drive which was interesting, after a few stalls we were on our way. It felt a little weird everything seemed so tiny in it lol. But I liked it! So the deal was made, financing approved and at that time a crazy rate! The next day my dad drive me down to the lot to pick it up. It was a little icy out. After getting the keys and the handshake I went to drive off, burning the clutch and spinning the tires lol. My dads words to the sales man was "he'll be back next week for a new vehicle lol" So I got home, was an interesting drive. It took a day or so with alot of driving and I got the hang of it. I now prefer standard over automatic lol.

Who ever had traded it in had a add-a-leaf lift on it which raised in about 2 inches. So when the spring came I took a little drive thru the Simcoe County forest behind my house at the time and then I was truly hooked! A couple of years later my other friend and his then gf traded in her toyota 2wd p-up for a jeep. And then it was the two of us with friends hitting the trails every Sunday. I then installed a 4 inch lift and 31inch tires....so I could get stuck deeper in the bush lol. Ive have my share of stucks, my first was out in Coldwater. Me and a buddy were coming back from the auto flea market at Burls Creek and decided to take the back roads, which then led into a snowmobile trail. Which then lef to alot of sloppy clay which does not go well with almost bald tires. We ended up walking out of the trail and knocking on a door to get a ride home. My jeep was stuck there over a week. It was alot of digging to get it out. The next big stuck was up in Port Severn were the left front spring hit a rock coming up a hill resulting in cracking the bellhousing on the transmission and snapping the leaf spring. Again I had to leave my Jeep out there and all pile in my friends jeep. We went back the next weekend and managed to get it out to the road to have it towed home. I have now added a 2" body lift and 35 inch mud tires. I haven't been out on the trails now for a few years, due to money and such. But am really hoping to get back into the jeeping community. As of now my jeep sits in my garage awaiting a new body, thanks to Canada and all the salt they put on the roads. The rust demons have claimed it.

Like the say JEEP stands for Just Empty Every Pocket !

Here is a few pics of the life of the jeep ending in what it looks like right now sitting in my garage

Just taking things in stride.

Its been almost a month now since my dry run. Im not sitting here every second waiting for my pager to go off again, I figure when its my time it will go off. You have to keep your sanity or its just no fun lol. My Friend Allison got her call almost a week ago now. She is still recovering, she had a little what they say bump in the road but its just a normal thing in transplant. But shes strong and still doing great. Hopefully she will be out in a few weeks and be able to enjoy those new lungs.
I have been feeling pretty good, the other day I decided to take my O2 off and see what my saturations dropped down to, they only went down to 92-93 percent which isnt bad. Thats where I usually sit when wearing O2. They like to keep you above 90% its less of a strain on your heart. I dont need to wear that puppy out too lmao. It would be nice if I didnt need it to sleep with, would make life alittle easier. I still seem to need it for moving around so I wont be able to completly get away from the O2. That is the one big downfall of having to wear it to sleep with that I cant easily crash overnight anywhere.
This week ive escaped from going to the city at all. Just have to do my two days of Pre transplant physio in Orillia. Speaking of Orillia im still talking with the lady that I went to the show with. We were hoping to get together this past weekend but unfortnatly plans didnt come together. So were hopeing for next week sometime *fingers crossed :)
I was on fb the other day and one of the guys at the shop posted a video thing that I found pretty funny, its just like some of the customers I had to deal with when I was working there>>

http://www.xtranormal.com/watch/7452561

I still can't believe that in four more days it will be my birthday (27th) ill be 35 and yes I was almost a leap year baby. Its pretty amazing, as my one good cf friend said I'm a grandpa in cf years! Thanks for making me feel even older. But in all reality when I was born the doctors had told my parents that I would only live till I was 13. You have to just sit and think in awe how far CF treatments have come. All us cfers are living alot older then ever expected...and hey I'm not complaining one bit lol.
As for birthday plans there isnt really much planned. Getting some friends together for breakfast on Sunday, not really birthday breakfast cause we were planning it before the fact lol just happend to fall on that day. Then my brother planned a birthday dinner Sunday night at my moms....then told my mom she was cooking dinner haha.
As for the weather its still cold and snow hasnt melted yet boooo! Ill be glad when the warm weather comes and can sit out on the deck.. Like my one friend noticed we are all pretty non social in the winter. But come spring and summer we are all getting together alot of time to just hang out on the deck or what ever. Guess thats part of the winter blahs.
Ill end with a pic that I made with a roll up the rim cup from Tim Hortons....if it was only that easy :)

Just a weekly update

Its been 2 weeks now since my pager went off. It has yet to go off again lol. Heard there was another cfer that got his call the day after my call and he got his lungs. Hes doing good so far.

Friday night I had a date with a lovely women, it was nice. We went to the show and seen The Roommate. It was kinda a creepy movie. Lets just say I will be keeping an eye on my roommate lmao. After the show we came back and just hung out, it was really nice. We are getting together again Wednesday night :) I hope things workout, I like her. Saturday and Sunday I just hung around, grocery shopping,cleaning and laundry, all the fun stuff.

Monday morning when I woke up I found my bunny had passed away in the night. He was getting really old. I still remember the night me and my ex had found him on the side of the road, actually just up the road from where I live now. A few Easters he worked at the Stewart Vincent photography as a Easter model for kids to have their pics taken with. He was a star lol. He retired a couple of years ago. He is predeceased by his girlfriend Abby who had to be put down last year due to and hemorrhage eruption. I took him to the vet for a animal cremation and will have his ashes back in a couple of weeks. Its funny what we will do for our pets.

Monday at physio went well except for the nice hefty parking ticket I got. When I got to TGH they were lined up out to the road waiting for spots in the parking garage so I had to go into the parking at the mArs building. The only downfall there is its a pay and display and for some reason their stupid machines do not accept bills only change or credit cards. Well I don't have any credit cards and seriously why carries $18 in spare change with them? So after going thru my truck I managed to get $4 scrounged up mostly in dimes. So that only gave me 1/2 hour of parking which is a complete rip off! So I decided to take my chances. Went and did my physio, met yup with a distant cousin who was there for his transplant assessment due to pulmonary fibrosis. I made my way back to my truck to find a ticket. I paid at 11:00 and paid for 30 mins they ticketed me at 11:50. There was a hell of alot of cars parked how they managed to nail me 20min after is crazy. Anyways it is $74 or if paid within 7 days its $42. Fuck its cheaper to park in a fire route! I question if the tickets are legit and will actually effect me getting my plate ticket next year. Anyways I gave my mom the money and she paid with her visa online. I then called their main office to complain about the machines not taking bills and found out they are in BC wtf? anyways I got nowhere on the phone it was only if the machine wasn't working at all, so I had to submit a complaint online which probably just goes to their junk mail and gets deleted anyways.

This weekend is a long weekend, for my non Canadian bloggers we have a day called "family Day" so Monday there is nothing going on at TGH. They said it would be fine just to do my 2 days in Orillia. Which is awesome I get to save a trip to Toronto.

cf and pre tx clinics

Well the last two days I've had clinics. Monday I have my physio which was scheduled for 10:30 am and then transplant clinic at 1pm. Clinic went well, it usually doesn't consist of much, just how are you feeling are you still on all the same meds as previous? I did ask about why the donor lungs didn't meet their standards and was suprised to hear that upon checking all other organs for other life saving transplants they found some spots on the liver which they put down as cancerous so cause of that non of the organs are usable. So I guess even though the donor may not have known Cancer has affected more peoples lives and their possibility for life saving transplant. Although the donor is still in my thoughts for being courteous and signing their organ donor card....if only more people did.
Tuesday (today) I have my CF clinic. Things went well in their too, my PFT's were up from .99lt to 1.12lt which is amazing. The wait was like always long. I finally seen Dr T around 2:15. She was sad when she heard about my dry run last week. I described all the details of what happened lol. She was happy on my results today and said I have been pretty stable and in great shape for transplant as I'm up and about and such so keeping my strength up.
Well I think that's about all I have to update for now :)

First call a no go.

Monday was a long day. I was up early to travel down to Toronto General Hospital for my regular pre transplant Physio. It went good, had to redo my 6min walk test again as you know if you read the previous blog. But anyways there was really no change in distance from when I did it three months ago. I went 513meters in 6 min, that was good considering some inconsiderate people that wouldn't get out of the way in the hallway Dumbasses!So I got home around 4:30 and was a little tired. I got on to check fb and everything and learned that a couple of my fellow cfers were not doing so good. It kinda got me in a sad mood. I didn't have much for dinner just a Scandishake and a peanut butter sandwich. I then just laid around on the couch watching Tv. Thinking of my one friend that got some terrible news, something I don't know how I could handle if was told but she seems to be strong and continues to fight! It was about 9:20 when my pager started beeping away, I figured it just needed a new battery. I checked and it said one new but figured it was from last time I called it to check that it was still working. So I called the number and got a message to leave a number so I was convinced. Then my phone started beeping saying I had another call. I answer it and it was Toronto General Hospital. Hell this is Toronto General Hospital, we believe we have found some lungs for you. and then asked how I was feeling and such. She then asked how quick I could get there and said as long as I was there around 12:00am, she said have a bite to eat now and a shower if you like. So I called my roommate that I just got "the call" and ask where he was. I told him to meet me at my moms house in Victoria Harbour. So I informed my mom and a few friends that I was talking to online at the time. Filled my o2 tanks,got dressed and drove over to my moms. I got there which is about a 15 minute drive and my roommate wasn't there yet. He showed up about 10 minutes later, hell he was more of a wreck then I was, I was wondering if it would be safer for my to drive lmao. So we hit the highway. We had to stop and pick my brother up at the service center in cookstown. We arrived at TGH at 12:10am and went in thru emrg. I signed in there and was directed on where to go to have a chest xray done. For an emrg dept it was really quiet, I think there was only 2 other people sitting in there. I had my chest xray done and headed up to the 7th floor. They put us in a room that was full of recliner chairs. They took my vitals,drew 12 vials of blood and put a iv line in my right arm. They gave me a 5 page questionnaire to fill out. After that they had someone come in and do and ekg to monitor my heart. The on call doctor came in and talked with us. He said some of them had left to retrieve the donor lungs. And they will know around 3am what the condition of them are in and if its a go. The nurse came in around 2:30 and gave me my first large dose of cyclosporin which is an anti rejection drug. At 3am the came in to check my blood sugar which I figured would be high as I didn't take my night time humlin because I could not have a snack but it was only 5.8 whats with that? Then the nurse said try and get some sleep. Wtf how does a person suppose to sleep with all this going on. Its like saying congrats you won the lottery but first take a nap. 3 am came and went and no word. The nurse said the time of surgery is booked for 6 am but still no word on the lungs. 6 am came and went and the nurse came in and said they have rebooked for 8:15am but yet still no word on the lungs. The porter came to transfer me upstairs to the 10 floor holding area. When he showed up his cell went off. after he got off he said everything is on hold and just to stay here. I think it was 9 am when the transplant nurse came and took us up to the 10th floor. When I got up there and in a room, she started an iv drip of antibiotics and gave me a shot of heaporin in the arm (blood thinner) then we sat and waited some more. The transplant surgeon came in and told us that they were still waiting on the cond of the lungs, the way he was talking sounded like they had to fly out west to retrieve them. It was close to 10am when Dr Chaperio walked past and noticed me, she came in and was all happy I had gotten the call, she then left for a but then came back in to say they did not like the lungs so everything is off.

I wasn't overly disappointed cause I have read of others having dry runs. And lets face it I only want the best lungs for me...dont want any "as is" lungs I need fully certified lungs ready for the road of life!

So it was an experience and I fully know what to expect for the next time the call comes. As of today it is 5 months I have been listed.

Ones thoughts when driving

Well today was my day at Toronto General for my Pre transplant phyiso. It all went well,at least the rest of it. I got there and they said I was due for my 6 min walk test. For those who have never had to do this it is basically a measurement of how far you can walk in 6 minutes. They monitor your heart rate and o2 saturation. So I get thru it and as I'm standing at the end of the test and she is recording all the info that is downloaded into their palm pilot the nurse drops it on the floor and the back comes off and the battery flys out. I'm thinking great, she puts it back together and turns it on and yes that's right it didn't save anything the whole test was a waste of time. So we go back into the treadmill room and she says she might have me do it again later on I'm thinking wtf? Then the physiotherpy nurse comes over and says that they think my distance is down from last time and that they should just wait and do it next week. Im thinking that's a good idea seeing as I'm already worn out so to do it again today would most definitely be a shorter distance....it doesn't take a rocket scientist to figure that out. So lets hope next week she keeps the palm pilot in hand nice and tight!

So back on track, as I was driving to Toronto today I was thinking and mind wandering on different things. I was thinking of what a fellow cfer saying about the higher power as if god and religion. I myself am not religious at all. I kinda think along the same lines as my dad did of reincarnation...it explains why you have those episodes of dega vu....like you may have done it in a different life and form. I'm sure theres arguments for and against this but I'm not gonna get into that. But then I thought what if there is a place where people go in spirit...guess some people would call it heaven. So then I wonder about my late father.

See he was a huge aviation fan, he knew tons about airplanes and built and flew radio control air planes. I still have one of his that he built which does need some repairs due to other events not needing to go into detail.

So last night I watched the movie Amelia it was the biography of Amelia Earhart, if you don't know who she is you need to brush up on your history, she was the first women to fly across the Atlantic back in the 1930's. She then attempted to fly right around the world only to get lost in the pacific ocean. To this day nothing has been found of her plane or her or her passenger. Another big person, actually people are the Wright brothers, they were the first to actually fly out in kityhawk. Those were two people that interested my dad, mostly the Wright brothers. So here is what I was wondering. That indeed if there is a place of spirits if he has actually got to meet them?

Its a pretty calming thought to think he has.

Just another Saturday night

Well folks its still winter here in the north country lol. Suppose to go down to -21c with a windchill of -30. Not very nice and of course not great to be outside walking with crappy lungs and on o2. Had to go to Walmart today and it hit me, couldn't stop coughing, its the most I have coughed in a month so I know its just the cold air that is my enemy.
Other then that my health has been pretty stable, physio is still going good. I have my CF clinic on the 1st of February so will see if my FEV1 has gone up anymore.
For me its another quiet stay at home weekend. Seems to be the norm now, seems the winter no one seems to come over to often to hang out.
Not much new in the dating scene either, still single and hating it lol. Theres alot of times I wish I wasn't waking up in an empty bed or had someone to curl up with in the evening to watch a movie with. I personally think the whole CF thing scares alot of women off, But I guess not much to do about that.
Another month I will be turning 35 which is crazy. I cant believe I will be "mid 30's" Where does the time go?

This and that ramblings

I don't really have much to talk about, well nothing of real importance. Its just a Friday night. Sitting here with nothing to do and no plans. Seems to be typical now of the way things go. Everything happens when I'm not feeling the greatest and don't feel like much socializing or doing things but when I am feeling good I want to get out and do things but never seems to be anything happening. I remember when all us friends would get together ever weekend and just hang out. Kinda sucks how times change.
Not much happening on the transplant front. Back to my Mondays at Toronto General and Tuesday and Thursdays in Orillia. The physio has been going good. My o2 sats stay right up. I feel good after I'm done. No coughing which is a relief. February 2nd will mark 5 months being listed. Getting a little worried as I haven't even had any dry runs yet. I heard from a friend who had a loved one pass away that they were an organ donor and the doctors were locating people for their organs. So hopefully his lungs were usable and someone is now breathing easier. I was kinda hoping I would be on the road to recovery by now but now the way the timeline goes I more then likely still be off work for the rest of the year booo!
My first cheque is in the mail from Google As Sense for them advertising on my blog page, they are sending me a whole $15.87us, so I guess there has been a few people clicking on the ads.
So other then that life is hanging in there. No real excitement getting kinda bored lol. Hopefully only have another 2 months of winter and it will start to melt.

Funny how things go

Last 2 days of phyiso have gone good. No hacking my brains out which is nice. Yesterday as I was driving down College st on my way home from Toronto General I was thinking to myself wow, until Nov/09 I had never really driven in the downtown. Now I feel like I know my way around pretty good...not no pro yet but can manage. Of course downtown city driving is alot different then my country town driving, you have to pretty much turn into an arrogant dodge in and out of traffic kind of person. Sometimes when I get home I find myself still driving like I was in the city and have to take a moment to switch back to country driving lol.
I am still amazed and and disappointed that within the span of one year my health and life have just about hit rock bottom. Although I'm still glad I'm a bit mobile and able to get out a bit. I don't know what I would do if I was stuck in the house, not being able to drive and completely depending on others. Don't get me wrong I am nowhere able to do the tasks I use to be able to. My roommate looks after putting all the garbage and recycling out and the snow cleaning of the driveway. Hell I think that would take me several hours and many tanks of o2 to complete lol. So for now I hope to just stay around this level till the call for lungs come.

Todays Clinic

Today's clinic wasn't too bad. Got to st Mikes and went right to the blood work lab. I thought I was in for a very long wait as there was a full room and people also waiting in the hallway. But the wait was only about 15 mins...not bad. They couldn't draw blood from my picc line so they had to poke me again in the other arm. When I was done I went back downstairs and grabbed a coffee then headed up to the Cf clinic. I went and sat in the waiting room, and there is where I sat from 11:00 to 2:00 One odd thing, I dont know if the reception knew they did it or not but there ended up being at least 4 cfers all sitting in the waiting room at the same time. It didnt really bother me but kinda makes you wonder when they are so tight on cfers mingling and such. Anyhoo they then called me and I went for pfts. My FEV1 was back to .99LTS which is pretty much where it was before my infection. I went back and they had a room ready for me. So I dropped my stuff then went to the Marakteria and grabbed a snack, Milk, oreos, rice crispy square and an apple. Went back to my room and ate. The nurse came in and took all my info, plus she unlocked the computer which was perfect now I could play around on the net while waiting, which I figured would be a few hours. She left and I jumped in the chair. Just logged into FB and knock knock on the door the Dr was here. Wow that was freakin fast. So anyways he asked if I wanted to pull my picc line out or leave it in, I'm like PULL it! lol So out it came. I can now stretch my arm out, shower proper...back to normal life. So now I don't have to go back for a month.
Tomorrow I'm back off to the city for my pre tx physio at Toronto General. Then Physio on Thursday in Orillia. I'm already looking forward to this week being over.

2011 is here and today marks 4 months being listed.

Well I haven't talked to anyone since last year...where does the year go lmao. Anyhoo my New Years wasn't too bad. I figured I would just be sitting at home alone. I hate going out to huge parties lately well having to cart the o2 around isnt fun so I would rather just stay home. But I headed over to a friends. He had a few people over and it was a night of sitting in his basement listening to them pound away on the drums and play guitars. It wasn't that bad...LOUD but good. Hell even the few of us down there missed the count down. It was like ohhh Happy New Year lol. I didn't get to bed till after 1:30 in the morning. Which is extremely late for me, im usually in bed by 10:30-11:00 lol. So I pretty much slept the whole next morning away.
Today is Jan 2nd so I have now been listed for transplant for 4 months. Last I checked the list was down to 58 people waiting for lungs.
I think the iv meds did their job. The last few days I've been feeling pretty good. Seem to have alot more energy then before. Which is always good. I still get SOB (shortness of breath) but not as bad but its still there non the less :(
My brother and his partner have planned their March break trip to Florida. I have really been itching to go with them one year but with money, work and then my health its been a no go. But I have put money away and plan on going somewhere with them after transplant!

So that's all I have to say at the moment, I have CF clinic on Tuesday and will update on what they say. Id imagine feeling that I have more energy means my pft's will be back up.


Happy New Year every one!!!!