Wow 1 Year Mark Coming Up!

It crazy that come the 25th of this month will be a year that I received the gift of life. It has truly been a blessing and and so happy that I have almost beaten the first odd. I hope there is many many more years ahead! I am at Toronto General 3 days next week for my assessment. Its gonna be a very long day Monday and then Tuesday and Wednesday are just half days. I am planning a huge party on the 25th to celebrate my 1 year mark my 36th birthday which is the 27th and my brothers birthday which was the 4th. It should be a great time and cant wait for it!

On other news, im still working my ass off. I have signed up for the warrior dash in July and in a few weeks will be heading to Orlando.
I have been deciding on what I'm gonna be doing. As I can not really afford to stay where I am. and then on the other hand cant afford to sell. Seems to be a vicious circle. What I truly need is a nice lottery win, although you have to have money to buy the ticket hahaha.
In actual reality I shouldn't really be going off to Florida, even though I have put some money away for it I don't wanna leave myself short later, but on the other hand I doubt I will ever get the chance to go ever again.

Well I will update after all my tests next week and let you all know how I made out.

2011 has come to an end!

This should of been the last blog of 2011 but its a day late so I guess we will call it the first blog of 2012.

This year has been an extreme roller coaster. The first month and a bit I was still living on 02 and had a pager by my side waiting for my call. I got my first one on Feb 2nd, 2 days before my brothers birthday which turned out to be what they call a dry run. My second call came at 9:30pm feb 24 which was a go and I received the gift of life Feb. 25th, 2 days before my 35th birthday. Things went pretty smoothly with only a couple bumps in the road. Was out of the hospital in a month due to sternum issues and it not wanting to stay clamped together. I returned back to my full time job 2nd week of June only 2 weeks after my 3 month assessment. Things have been good so far. Had a great summer, got my jeep all back together and back on the road. Got a few long awaited things done around the house and yard that I couldn't do while having next to no lung function and on o2. Got back up to the cottage this Summer and also ventured out by Parham to my older brothers cottage for a weekend of fishing. All in all was a pretty wicked summer with friends and family. Had many bonfires too the summer which was nice as I missed that for the past year. Then ending of this year brought some terrible news for my niece and her family and that her little girl would need a liver transplant, same as her older son needed 2 years ago. I have tried to give as much support as I can as I have been down the transplant walk too. And have tried to make it down to Hospital for Sick Kids in Toronto when ever I can. She did receive the gift of life from her father and took place just this past week. She is doing well but still has a couple more surgeries to go thru. I came down with my first illness since transplant. And like I blogged about it earlier it is weird and a little scary. It left me with a ear infection which is not nice and is the first one I have ever had. I had to go to the Hospital here in town and get a script for some antibiotics. I then had to call my transplant coordinator to inform her of what was going on. She said that I may require a longer dose then 7 days cause of my compromised immune system. Well after the 6th day it was wasn't any better so I called this Friday to inform her and see if they could write me a refill as my family dr was on holidays and I didn't wanna go back to the ER. So she did some research and asked me a few questions. She called me back after lunch to inform me that they were gonna change my antibiotics to good ol Cipro. Her reason was cause they found some pseudomonis in my lungs at my 9 months assessment when the did my bronch. What the hell???? I thought they would of been on top of that and got me on something as soon as they found it. I did have some at my 3 month mark which they figure was from my sinuses and they had a picc line put in and had to do 2 weeks of home ivs to clear it up. So I am keeping my fingers crossed that the cipro looks after it. I know before transplant with my old cf lungs and lung infections that the cipro started not doing the trick so not sure if its the same with new pink lungs.

To end the year I held a New Years bash at my house. I was a pretty awesome party and lots of friends came, im guessing there was about 15 drunk people here. Had the coffee table pushed aside and had dancing going on and of course the infamous gathering of drinkers in the dinky kitchen,whats up with that. This year we decided to get dressed up in out best cloths and we all weren't looking too shabby! So now its the starting of 2012, I sure hope is a great year with many great adventures and new experiences, and that its all good health for me, my family and friends. My first adventure for 2012 is a trip to Orlando Florida in March with my brother, cant wait for that :)

Christmas is over finally

I am glad Christmas is finally over. I didn't do anything at all this year except go to my moms for dinner. I have just about kicked this cold but it left me an ear infection.....not fun! I can barely hear out my left ear and it drives me crazy I can hear my heart beat in it and after awhile it gives me a headache. At first I thought it was just a blockage as ive had one before. Went up to the ER in Midland Saturday morning cause I couldn't take it anymore. Usually when you go there your a guaranteed 3 plus hour wait. I was in and out in 20 minutes, I don't know if it was cause they were efficient or that they knew I was a dbl lung transplant recipient and imune compromised so they didn't want me sitting with all the sickies lol, but I'm not complaining. The Dr looked in both my ears and said my left was clear and he could see my ear drum but it looked all red and swollen so he gave me a 7 day course of antibiotics. If it isn't better by then to see someone. So I'm keeping my fingers crossed. Its 3 days I've been on them and haven't really seen any difference :( So if not cleared up not sure what the next step is. Maybe iv antibiotics :(

Easy call called me Friday, well got 2 messages from them, first was that no calls will be taken and replied to after noon and not till the holidays are over. The next was about my blood work the day before, my white blood count was at 14 and it usually is at 7, thank god I still have some WBC left alot of people after TX get it wiped to 0. So they said I must obviously fighting something and wanted me to let them know how I was feeling, WTF? I called them 5 days prior on this sinus cold I had and coughing up a little bit of phlegm. So I left a message leting them know and about my ear and of course they never called me back before noon. So not sure if they will get ahold of me this week or wont be till the new year.

Today I ventured back down to Sick Kids to visit my niece who's daughter is waiting for a liver transplant. She told me that all the tests came back and that her husband is a match, which does take some stress off things, she thought may be on the search for a donor. I have alot of friends who offered to be tested too, I am so grateful for wonderful friends.

Yesterday was my 10 month lungavisary. It was kinda a sad day for me, sure I was happy to still be here but for my precious donor and their family. Not being able to celebrate this Christmas with their loved one. Who knows if they had children who had to try and cope with not having their mother/father there :( I know for me it was really tough trying to get into the Christmas mood after my dad passed away. It just didn't feel the same at all! So I completely imagine what they are going thru. I thought about my donor all day long. Thank yous can never say enough, you gave me my breath and life back! Maybe next Christmas will be a better Christmas for me, like I said before I don't like all the commercialization they have made out of it, being sick at Christmas (this will be the 3rd Christmas sick ) and not having someone special to share the times with. I guess life goes on.

Below is a picture of my nieces daughter Alyson.

Finally feeling better

Its been just over a week now and today was my first day back to work. I still have a partially plugged nose and ears plugging up. It seems to get worse at night when I go to bed. Don't ask me why. Last night I ended up getting up at 3am and sleeping downstairs on the couch and actually got some sleep. I guess its just gonna take a little longer. I gotta say though being sick for the first time is kinda scary and a learning experience all at the same time. At least I know what to expect the next time around.
Well its only a week away from Christmas. I still have no feeling what so ever. I'm sure its not a good thing but really doesn't bother me one bit! Christmas for me has just not been the same since my dad passed away over 11 years ago. Just couldn't really get back into it. Another factor is not having a significant other to celebrate the festivities with. But ohh well guess its what life has dished out for me.
I am planning on a big New Years party at my house again. This year a bunch of us are gonna dress right up for it. It should be fun :)

This past weekend I went down and visited my Niece,her son and daughter. Her daughter was born May 5 2011 and is now waiting for a liver transplant. Poor girl has no idea what is going on. I feel so sad for her. My nieces dad is starting tests to see if he can donate some of his liver. My niece is unable seeing as she donated some of hers to her son back in 2009. If her husband is not a match then the terrible task of trying to find a match begins. I do have a couple of friends who have said they would get tested to see if they are a match which means alot to me! As I was telling my niece that its so crazy that the waiting list for livers and kidneys are so high seeing as they can be a living donation and not from a deceased donor. I checked the list today and liver waiting list is almost 300 as the lung waiting list is at 69. Even since my dbl lung tx I have had 8 friends who have received their new lungs. Its just so crazy!

Today is my dads 77th birthday its hard to believe he would of been that old if he was still here.

Getting sick after transplant...so different

Well come December 25th it will be 10 months since I got the chance of a new wonderful life only made possible by the gift of life from my lovely donor and their family.

Well this past week and a half I have came down with this cold. You never know where you pick it up, I stay away from sick people like the plague hahahaha. It all hit the same time my transplant coordinator called on my results of my 9 month assessment. Everything looked good by my blood pressure was up a bit still so they prescribed me some blood pressure meds. I picked them up at the drug store here in town, the pharmacist went through a few things with me then said that this med may cause me to have a tickle in the back of my throat and cause me to have a dry cough some or all the time....great I put up with 34 years of hacking my brains out! I don't wanna cough anymore lol. She also said it may cause fatigue too...wtf! Sounds like a great med. Especially a person like me that is on the go all the time and doesn't wanna cough anymore.

So anyways I called my coordinator and left a message the Easy Call system on what I should do about this cold. Tell you the truth I was kinda scared. It was the first time getting sick after transplant. I was afraid of it getting into my chest...which is the way it worked overtime before transplant. So my coordinator said to just take things easy and drink plenty of water. I also went and had blood work done just for piece of mind. They called the next day (Friday) and said that my cyclosporin level was high and cause of that my creatin level was up(kidneys) so I have to go back Monday and have blood work done again, if its still high then they will decrease my cyclosporin med level which means one less pill probably.

My brother and I attended a party my nephews put together for my brother and sister in laws 30th wedding anniversary (actual date is my dads birthday Dec 19) It was down in Kitchener. It was fun, got to meet some extra extended family...but for the life of me dont ask me names lol. We left there about 11 pm and drove back to Barrie to drop my brother off then came home. Today has been a write off. Got up to do my meds at 9 then fell asleep on the couch and didn't really get up and do anything till after 3pm. It was nice to be able to just relax and hopefully give my body a chance to kick this colds butt.
With talking with other transplant friends they say they have been sick and it just takes us longer to get over it then a person with and A1 immune system. I do happily still have some white blood cell count, I think it was 9 for my blood work for my 9 month assessment.

Below is a picture of my brother giving my sister in law a ring as his 30th wedding anniversary gift and one of me getting dressed up at my brothers.

9 month assement

Monday I was at Toronto General Hospital going thru my tests for my 9 month assessment of my pretty pink new lungs. So the day went as follows. Was up at 5am seeing as I had to be in the city by 7:30 for my ct scan, that went with no hitch then I was off to blood work which was fasting so I couldn't eat anything the night before or have my morning coffee booooo! When that was done it was off to the pft lab for breathing tests and the annoying ABG (arterial blood gas) The resperoligist had a hard time getting it, after two pokes and poking around in my arm he finally got it, I was so glad when that was done and could finally get some breakfast! That was a yummy bacon breakfast belt on a cheddar cheese bagel and a coffee. After that was my 6 minute walk test. They had 2 students doing it. I did it and seemed to do the same as I did at my 6 month mark. The one physiotherapists looked at the results then asked how I was feeling "fine" I told her then she told me my walk test was down significantly from last time, she then suggested maybe they missed counting a couple of laps and asked if id like to do it again in another 10 minutes and I said fine. So I did it a second time and the physiotherapist did it and just as we suspected they had miss counted and it was actually the same as my 6 month mark 630 metres which is 93% pred of a healthy person my age.

Next was lunch time, mmmm hero burger is my fav! then it was good ol clinic time. I was prepared for a long wait as it usually goes. I got up just after 1 got called in 10 minutes later and then waited in the room, the transplant coordinator came and talked to me, I showed her the article that I had in the circle of friends which she liked. She also asked if I'm doing any awareness stuff for cf and organ donation which I told her yes. I gave her my letter I wrote to my wonderful donor family and asked about my letter I submitted at 3 months and she said she was gonna contact the trillium gift of life to see if the rejected getting my letter so hopefully I hear something. I was out of clinic by 2:30 which wasn't bad at all.

Tuesday was the same early rise to be down at TGH for 7:30 for my bronchoscopy. I stopped in Barrie and picked up my brother to come down with me. I went in for my bronch and was done in about 30 minutes. I was awake for the whole procedure which doesn't bother me one bit. The even had me taking a deep breath when the wanted to take the biopsy clips. The good thing about not being right out is that its very quick recovery after. When I was down me and my brother went up to the 7th floor (transplant ward) and visited a fellow transplantie that was in, she had her double lungs 5 months ago. We then stopped by and visited with a fellow cfer who received her new lungs last weekend, which she is doing awesome and id imagine will be heading home shortly.

I was able to get a cd of my before and after xrays, the first one is of Feb 24th which was the night I went in for transplant the second is my new lungs and was taken on Monday.

We then headed back to Barrie and then I came home. Today it was back to work as normal.

The day from hell

Well I got up this morning and was looking forward to seeing some old faces at clinic and meeting up with a good cf friend.
I had planned on stopping in at my brothers work and dropping off my passport so his partner could sign my photo which he had forgotten to do and was gonna pick it up on my way home.
Well that didn't happen :( I grabbed my coffee at Tim Hortons and headed out of town, the sun was in a real nasty spot and couldn't see crap, all sudden this lady in front of me stopped and I couldn't even see her brake lights.....well you can guess what happened next...yupp whamoo! It didn't do much damage to my truck. So we had to wait for the police and fill out a report. So I never managed to get out of town till 10 :( I managed to make it to St Mikes by 11:30, had to do routine blood work which included an extra vile for a study they were doing for bacteria found in cfers blood and which also affect the lungs. I asked if it was necessary as I have new lungs lol and they said it would still work for the study. ohh well was just an extra vile. Im use to having my blood sucked, I would be a total hoar for a vampire lmao!
After blood work I went back up and had to wait in the waiting room again. I was then call for pfts then back to the waiting room. My friend Michelle and her husband showed up. We got to sit and chat and exchange books :) So we all waited and waited, they left for some food and I followed shortly after for a Tim Hortons run, that was 3:00. I came back to the waiting room and sat some more. I didn't get called into a room till after 4pm. I sat in there till 5:30 when I was finally. It wasn't much, it was the same dr that I deal with at TGH, I was really wanted to see Dr T but this is the second time there and still didn't get to see her :(
I didn't get out of St.Mikes till close to 6pm. They were also gonna give me my flu shot but it apparently wasn't where it was suppose to be so they didn't wanna hold me up any longer.
I didn't get home till just after 8p, What a long long day.
I sure hope tomorrow is alot better!

Just dont know?

Well the last few days I have had this feeling. A feeling like something is missing? I have been back to work now since June and seem to have fallen back to the regular routine before I got sick and had to be listed. Get up in the morning, go to work,home make dinner,do a few things then head to bed only to start it again the next day. I feel I need a change, dunno what. Sometimes I think maybe I should sell my house and just find a small place all inclusive which would free up some of my money and maybe do a little traveling? Maybe a different career? I just don't know! Or maybe I just need some excitement in my life lol. Maybe its just cause I feel alone, not that I don't have wonderful friends just that person that you can share moments in life with. I have been out to a few parties and the bar the last month but I have never been the one to approach a person and strike up small talk. It just seems to be a fatal flaw :( I am sure I have missed out on opportunities and such or missed the "signs" of someone being interested. I just totally suck. I have been trying the online dating but I am beginning to think that's a crock lol.


So ya that is where I stand, I'm sure it will eventually pass.


Although this was kinda difficult for me to write and put out there I figured it had to be said.

Wow 8 months.

Well writing this at 8:30 at night of the 24th marks 8 months since I got the call for a new wonderful life. Tomorrow oct 25th is the day I was wheeled into the operating room at 8:30 am. Its crazy how the time goes by so fast.
I love how inspired people get when I share with them my story. A few I have talked to didn't even know that double lung transplant was possible. Which in other words kinda upsets me. That is why I love sharing my story and raising awareness. I have several cf friends that are now waiting for their call. and some that have received theirs and are on the way thru recovery and a start of a new wonderful life like me. I also have friends that have lost their battle either waiting for the call or after transplant which is very sad and are always in my thoughts. That is why organ donation is so important.
I still wonder everyday if I would receive a letter from my donors family but have yet heard anything. A interview I heard on cbc with a friend of mine and who her donor family found were was great! I am so glad she has that connection with them, I do wish they would change the law in Ontario. As in Quebec as long as both parties agree information can be given, along with some states in the US.
I attended a local CF fundraiser in Barrie over the weekend. It was great to see all the people come out and support the cause. I believe they raised $4000 which was awesome. I also got to meet the 2 fundraiser groups (Barrie Kinsmen and the O'Ryan project) They were a group of great people! I have to start writing my speech as well. I have been asked by the Barrie Kinsmen and Kinettes to speak at one of their meetings in April to educate them on life with cf before and after transplant. As Marc said to me (Kinsmen) he said they do know about cf but don't know all the little specifics and the treatments before and after transplant. At first I was a little worried about doing it, but you only live once and like others told me I should do awesome cause Im talking about something that is close to my heart.
As for life, im still living each day to the fullest. Went out and danced my heat out all night long on Saturday, I use to never get up and dance, but like I told a friend. I really don't care what people say!
November 21-22 is my 9 month assessment so I will post on the results of that,

Till then have a good one :)

Life

Well life is good, well let me rephrase...life is great! Summer has pretty much wrapped up. What a great one it was! Plus getting to enjoy it with new lungs and no oxygen. Got up to the cottage. Made it out to my older brothers cottage for a few days. and made it to Canadas Wonderland. This past weekend I got to enjoy some fun at a local beer where we met up for a few drinks and some dancing. For one im not a real fan of dancing but hey get enough in me Ill do anything lol and yup I got up and danced and never go wore out. Still managing to make it to the gym at least 3 time a weak.
Who knows what the fall will have to offer and I know one thing this winter im deffinatly getting out to do some snow tubbing!

As for my health, everything has been going great. I have had to adjust my insulin a bit, am now taking some long acting insulin in the morning to look after my small blood sugar spike late afternoon/dinner due to the prednisone. I just started on that today so I will see how that goes. I have been talking with the diabetic nurse at my CF clinic. She really knows her stuff! Im now doing monthly blood work and Pft's. My 9 month assessment is coming up at the end of November. I still cant believe its been that long already.

6 month assessment

Thursday night fish fry,fresh Largemouth Bass!

Largemouth Bass Northern Pike

Sunset on Rainy Lake.

Well today I started my 2 days of tests for my 6 month assessment. It went pretty well id say. There was a couple little issues to work on but nothing to do with my lungs. My cyclosporin level was in the 400's which is way too high. It went high once before then came back down, so they told me to skip my 3pm dose and then take my dose from 275mg down to 250mg and then do blood work next week. My blood pressure was a tad high but not sure what was up there, they did take it right after I found out I had either lost my truck keys or had fallen out of my pocket into the truck so was waiting for a tow truck to come get into my truck, also if it was cause my cyclosporin level was high. So they are just gonna keep an eye on it. My ac1 level was up a bit due to my sugar spiking in the afternoon after my prednisone kicks in, usually around 3 pm which I usually adjust with insulin and have a snack. So they also decreased my pred. from 15mg to 12.5mg in hopes it will help out. They want me to get in contact with Anna Tsang at St Mikes cf clinic and see what she thinks, if she suggests me taking a small dose of my long acting Humlin N in the morning to look after the afternoon spike. Other then that all was well x ray and ct scan looked even better then my 3 month mark. My walk test put me in the 93% of a person my age with no lung issues so I'm happy with that.

I got to meet up and have lunch with a couple other lung recipents which was great, we shared our hospital stay and recovery.

It was sad when I went up to the treadmill room for the walk test and still seeing people in there pre tx that were there when I first on the journey, I really hope they get their call soon and a chance at a better life!

Tomorrow is my bronchoscopy at 8:45 and have to be there an hour before. Dr Chapiro popped her head in the room when I was waiting for the other Dr to say hi which was really nice of her, and I asked if she was doing my bronch tomorrow and she said more then likely so we will see.

In other news, life is still grand. Just got back from a week up at the cottage, I hadnt been able to go for the last 2 years which was very upsetting seeing as my dads ashes are spread on the lake so it really felt like I was missing spending time with him. The water was way down the year, but the fishing was still decent, caught a few nice ones the first few days but after that the fishing kinda died off. We caught stuff but mostly small and not worth keeping.

Work is going great, this coming weekend is a long weekend, hoping to get people over to help get my body onto my jeep frame. I am hoping to be driving it by the end of sept so we will see.

Busy busy busy but with mixed emotions

July 25th will mark my 5 month mark from receiving the gift of life and breath. A chance to enjoy life as what it was meant to be. I am still keeping my fingers crossed that I receive a letter back from my donors family. I submitted it a few months ago. I have been extremely busy at enjoying life, been back to work for over a month now and I love it! Recently got a promotion to Service Manager. Its so nice work pretty much 7-5 or sometimes 5:30 and get home make dinner and then hit the gym. Without being worn out at all. I have gained some weight but some reason has seemed to level out for now. I know at clinic they told me that I would have to start watching what I eat. Some you that are friends on FB have seen all the pictures of my meals and I don't cheap out on the portions lol.
Well my weekends have been busy and exciting. Seems every weekend I have something to do :) I tried roller skating last Saturday with my gf. I manage to get them on stand up and move a bit without breaking a tailbone lmao. Next time I will be trying to roller blades, at least Ive been on them a couple of times in my life. I guess it would help if I could actually ice skate. This weekend I'm heading to my older brothers cottage out between Trenton and Ottawa. Its the first time Ive been out that way so it should be fun and I heard the fishing is awesome! Weekend after that me and my younger brother are heading up to Rainy lake for a day of fishing and visit with the cottagers (seeing as we will miss them this year cause we ended up going at a later date,second last week of August instead of July) Weekend after that me and my gf are gonna go visit my older sisters trailer north of Parry Sound. Weekend after that is our little family get together (hopefully no blood shed lmfao) then week after that is our week of holidays at rainy lake. So ya summer is getting booked up really fast.
I still haven't had much time to work on the old jeep. Still need to do the body work on the new tub then install it onto my frame.
A couple of my good cfer friends got their call. My one good friend got hers just over a week ago, I was almost in tears when she messaged me that she got her call! She was in really rough shape but is a true fighter! I cant wait to hear her enjoying life when she gets out of the hospital. Another got her call about a month ago now. She is out of the hospital now and enjoying life.
Which brings me to my mixed emotions, I know alot of cfers, pre and post tx and I almost feel guilty announcing all the great stuff im doing while others sit just trying to hang in there waiting for their call. I have also been way too busy to keep up with people :( I have a few really close cfers that I talked to everyday pre transplant but now just am never around after tx. I feel like I'm abandoning them. I know they all say go out and enjoy life for what it is but just deep down that's how I feel.
So to all ya out there sorry :( Just cant wait till your post tx and we can at least somewhat hangout in person while still keeping our distance.
Also if you noticed I have really slacked on blog writing. This is my first one since the end of may lol, ya I totally suck!

Anyways its my bed time, another day of work tomorrow.....god I love saying that now hehehe.

Just a quiet Saturday night

Its Saturday, I just finished my first week back to work. It went great! I have never felt so good to be back to work. Its been such a journey to get back to this point in my life. It has been over a year since I worked last. So lets hope it keeps up this upward direction:)
As for my 3 month assessment I had a couple of weeks ago it went pretty good. No rejection was found this time and they lowered my Prednisone dose by 5mg. The bronchoscopy before that had shown stage 1 rejection. The only thing they found after blood work had time to culture was some antibodies in my blood. So they called and informed me they are gonna change my one rejection med(Imuran) to Celsept and will be on 1000mg 3 times a day. They also said this drug can cause gastro problems and live problems and that they want to monitor my blood once a week for the next month. So I will have to go to Orillia now once a week. It would be so nice if there was a Lifelabs here in town. Also if there was a proper Pulmonary Function lab. Ohh well at least its better then driving two hours to the city. My next clinic isn't scheduled till the week of August 29th(during my 6 month assessment)
In other news.....
My summer is getting pretty booked up with stuff planned and stuff I wanna do. Have a bonfire planned for next weekend. Ive been invited to my brothers cottage July 23 for the week. Want to plan a Canada's wonderland trip sometime this summer.Brother and I are heading to Rainy lake second last week of August. Then the last week of August is my 6 month assessment.
I'm still rocking the single life. It gets lonely at times. Ive always like having someone to be with. But meh I will find that right person one day.
Tomorrow is an early morning, gonna hit the gym early, it feels so good to be able to go workout and lift weights. I feel so great after and nice to build some muscle...guess you can say I'm getting ripped! lol
Im still eating lots. Im almost at 140 lbs now in just over 4 months from 117lbs (which is the heaviest I ever weighed before tx) Its amazing how many calories you burn when you cant breath.
I am still keeping my fingers crossed that my donor family will write back. I still can not express my gratitude towards them and their loved one that has given me back this great life!

What a great walk!

Sunday May 29th was the Great Strides walk for Cystic Fibrosis. This year they held one in Barrie down at the waterfront. It was organized by Lynette and Dave Mader(who has cf) and they did a fantastic job! The Barrie walks goal was $8000 and we exceeded it almost triple at $23,000.

My Team did great our team goal was $1000 and we raised over $2000. I was a little slow starting on getting donations and pushing it (only 2 weeks or so before the walk) and still managed to collect $920 worth of donations. With the help of a fellow customer of the garage I work at donation after he read my story in the local paper.

The day was overcast and it threatened to rain all day but it was still nice walking weather. Another fellow cfer/friend Allison and I were part of the ribbon cutting ceremony to start off the walk and we were also both interviewed for the local news. Its great to be able to get out and tell people of the cause. Next year I'm planning on fundraising alot earlier and to get alot more businesses in town involved.

May is Cystic Fibrosis month!

I have been busy the last few weeks raising money for the Great Strides walk for Cystic Fibrosis. I was a little late getting out to collect cause of all the appts and stuff I had going on. I had actually got my pledge forums when I was still in the hospital after my double lung transplant. Next year will be bigger and better for fundraising! Next year I am going to try and focus on some corporate donations. As it is to date my team is up to over $1200 our set team goal was $1000 so were doing awesome. The local paper here wrote an article about my transplant and the walk coming up. So lets hope it gets some more donations :) Here's the link for you to read and I will also include the link to pledge online if ya like.....you know you want to!
The newspaper story:
http://www.simcoe.com/news/news/article/1014954

Great Strides website to my sponsor page:
http://my.e2rm.com/personalPage.aspx?registrationID=1088255&langPref=en-CA&Referrer=http%3a%2f%2fwww.cysticfibrosis.ca%2fen%2fGreatStrides%2findex.php


Thanks everyone, every dollar counts! Lets make C.F stand for Cure Found!!!

3 Month Assessment and Life Happenings

This week I began my 3 month post transplant assessment. Its actually a week ahead but its the only time they could fit me in due to the coming weekend being a long weekend making next week a short week. Today was mostly the routine Monday, started off with Pulmonary function test at 7:45, only this time it included and arterial blood gas. These are only pleasant when a real experienced person does it and doesn't have to poke around in your arm with a needle to find the artery. They started off with my left wrist and after a few attempts moving and jamming the needle ever so deeply into my arm and me cringing in pain they gave up and moved onto the right wrist. He then decided to call in another resperologist to give it a shot and after just a little poking around finally got it. I have had them before when one shot they got it and didn't feel a thing, guess the Resperologists at St Mikes are just better for that lol. Well after all this time trying to get it, it ran into my time for my routine blood test and fasting blood test. So I had to rush up to the 12th floor and get it done out of my picc line. Made that just in time to take my 9:00 antirejection meds, which have to not be taken till the morning blood work is done so they can check for the rejection med levels in my body. After that was CT scan and chest x ray which were both pretty quick and was done by 10:00. Now came the wait till clinic at 1:30 :( this is one day I wish I had physio for something to kill time. I ended up just heading back to the underground parking and sitting in my truck listening to the radio. I headed up to clinic around 12:30 and waited, surprisingly they called me in just after 1:30 which was surprising, last time my appt was 2:30 and didn't get called in till almost 4:00.

I seen Dr C who had 2 surgeons, one from France and the other I believe from Sweeden. She was all excited to see me so I could show them my transplant pics of my lungs. They were totally amazed. My cyclosporin level is finally up to 277 so its within target now, they had to put me on 275 mg 3 times a day cause it wasn't working on 2 times a day, the coordinator told me there is only 3 of us that are on 3 times a day due to bad absorption due to Cystic Fibrosis. I was back on the road home by 2:30. I don't have clinic now for 2 weeks and she said after that not for my 6 month mark which is August, its gonna be nice to have less traveling to the city. I will still have to go to either Orillia or Barrie for weekly blood test and pulmonary function test. I have to make some calls tomorrow when I get home after my bronchoscopy.

In other news I am now single :( Crystal and I broke things off. She has alot going on in her life and doesn't feel its time for a relationship. We agreed to stay friends and who knows what may happen in the future. So here I am back into the dating scene, maybe it will be a little easier not having to drag around an o2 tank but in hind sight I find it hard to find someone that I am comfortable with when dealing with everything going on health wise, that was one nice thing about Crystal she had basically already gone thru it all. This was actually the first relationship since I got separated/divorced almost 4 years ago. Dunno if that's pathetic or what lol. But to me its hard to meet people or get up the guts to make the first move/introduce myself, break the ice lol.

The last week or so I've been working like crazy in my garage, something I haven't been able to do in over a year. Its nice to get some grease under these ol nails lol. I picked up a parts jeep which will lead me into my next story. I found a parts jeep on Kijiji and went down to Toronto to see it. I was mainly looking for a decent body for "SEANSJP" This one was in good shape with only a couple little holes to repair. So anyways the owner comes out into his driveway and the first thing out of his mouth is "hows your transplant" I almost fell down, how did he know I never mentioned anything to him at all, he is a complete stranger lol. Turns out he googled my email seansjeep and came across this blog and read it. He said he wanted to know who was gonna buy his jeep. So anyways we chat ted for a bit and told him I would take the jeep. He then said he would knock $100 off the price cause of everything I've been thru with transplant. Just too cool!

So ya couple of weeks ago me and a buddy went down with a tow dollie and picked up the jeep and brought it home. Its just about ready to have the body lifted off of it. The rest of the jeep I will tear down and sell the parts.

I am hoping to return to work in another couple of weeks, as long as everything looks good on my bronch.

This Saturday im planning a big bonfire in my back yard. I am hoping the rain lets up, suppose to rain right up till Friday, I have a feeling there isn't gonna be and dry wood lol. So we will see.

I think that covers just about everything that's been going on right now, its rather long cause I haven't updated in awhile just been too busy!

Keepin Busy

Its Thursday and my last day of the week for my post transplant physio. I'm counting down the days till I'm done. Apparently they told me they go for the 3 month time line from day of transplant and not day of starting up in the treadmill room. It was a pleasant surprise considering I thought I would be there till the end of June. When actually ill be done mid may when I do my 3 month transplant assessment. Which I cant believe is coming up so fast. Where does the time go? That is only 3 weeks left of physio....9 more physio appts lol. Can you tell there is a countdown happening lmao. Physio has been going awesome. Im up to strength level 7 on the bike (pre I was between 2.5-3.5) the treadmill I'm up to 3 mph and a grade of 3%. Denise asked me yesterday if I wanted to jog? I'm like on the treadmill? she says no outside. So I say no, i've never been a jogger. I said I have a bike at home ill be riding so she said they would concentrate more on the exercise bike.I have yet to make it to the Y, I will probably be going after I'm done physio so I have some more spare time. I'm also thinking of finding or returning to some part time work after my 3 month assessment is done. Seeing as I wont be overwhelmed with all the dr appts.As my other cf post transplant friend, I found a great women who supports me and understands all I'm going thru. Things have been going great with her. Got to meet her kids a few weeks ago and they all love me lol. Its great to be able to go outside and keep up with them and all their energy.Easter weekend was great! Spent most of it staying at my gf's then Easter Sunday we took her daughters to the park here in Midland then came back here for an Easter lunch bbq...which was sort of a fail as ran out of propane half way thru cooking burgers...isn't that always the way.I'm still amazed at everything I can do now, you don't realize how sick you are till after the fact. And now I think about it its scary as hell!Got out in the garage too and got some work on the jeep done, mostly cutting and grinding old rusted bolts off pieces of the body. I think I found a body for my jeep so hopefully it comes thru and I can possibly be driving it again this summer...its been so long hell 2 years now :( plus I miss driving standard lol.

Well I think I'm gonna wrap it up here, have to get ready to hit the road for TGH.

Have a good day all!

Slackin or busy?

Dunno if Ive been slacking or just busy enjoying life and these beautiful new lungs! So here is an update of things since my last blog. I had clinic last week where they gave me my results of my brochoscopy the previous week. They said they found stage 1 rejection. It sounds scary but they said its nothing to even worry about. They said there is 6 stages I believe. They just monitor things. So if they aren't worried I'm not worried :) They also removed every other staple from my incision which was nice. I didn't even feel a thing when the pulled them. Other then that they were pleased with my progress, my pfts were up to 70% Then Tuesday I got a call and a message that they also found a trace of Pseudonise in my lungs which they wanted to treat with a 14 day run of iv meds. So Thursday I went in and had a picc line installed. Was not a big deal, they had it in in 15 mins, said its the easiest and fastest one they had lol. When I got up from the table they still had the xray up of where they watch where the picc line goes into your chest and you could see my sternum lock (pic below)

This weeks clinic went well too,except for the mix up in the blood lab and upstairs blood lab for people with picc lines installed, who knew if you had a picc line you couldn't get blood drawn at the regular lab you have to go up to the transplant day unit. At least I know for next time lol. I also had another pft and it was up another 3% so now I'm at 73% So things are still going along great.

As for other things going on in my life, been busy with Toronto appointments and traveling to Orillia to spend time with my girlfriend, which im glad is going great! Ive never been this happy :) Ive gotten out to the garage to work on the jeep a tiny bit but its been kinda cold out. Other then that not much else going on.

One more thing to add, my Brother and I have started a Great Strides Team to raise money for Cystic Fibrosis. Ill post the link feel free to join our team Strides 4 Sean or sponsor us! help find a cure!

http://my.e2rm.com/personalPage.aspx?registrationID=1088255&langPref=en-CA&Referrer=http%3a%2f%2fwww.cysticfibrosis.ca%2fen%2fGreatStrides%2findex.php

Busy Busy Busy

Well the weekend has come and gone now. I had a wicked weekend. Got to spend the entire weekend with my gf which was great! Saturday I went to Ikea in T.O with my brother. Did tons of walking and browsing and felt great and full of energy. I still cant get over how much of a difference there is. It seems you just slowly get use to doing less and having less energy that you don't seem to miss it till you get a new life after transplant and have all your energy and breathing back. As it is its almost 1 am and I cant really sleep. Just cant seem to shut my mind down. Too many things running thru it from the excitement and great times of the weekend to stuff I wanna do this upcoming week. I have to be at Toronto General before 9am to have blood work before meds and cant sleep a wink. I ended up coming back downstairs to watch some tv in hopes it would let me drift off. So far no luck lol. I have also been thinking of how after transplant I have already picked up a few traits that I really didn't have before. Makes me wonder if its from my lovely donor family? There have been reported cases where donors have picked up certain traits they may not have had after receiving organs from their recipients. Just a couple of things I have noticed : I seem to be more social and open, before I was kinda shy and quiet person and would only talk when felt necessary,I very rarely would strike up conversation with someone let alone with someone I didn't even know. I have noticed I have become alot more emotional and in touch with my feelings and being able to express them, not keeping them bottled up. Third is chewing gum lol, I was never a huge gum chewer now I seems I always have to have some in my mouth to chew on. Seems strange but makes you wonder?

Life is grand!

Sorry for no updates for a couple days but as most of you know I was discharged from hospital on Wednesday March 30th. This is when my new true freedom began, care of my lovely donor and their family! I have been kept busy doing things around the house, out visiting friends and just generally enjoying breathing. Trying to give these lungs a workout. I have not been able to sit still for 2 days lol. I just feel like I'm wasting time sitting in front of the computer or watching tv. It seems that was my old life when I didn't have energy and having to wear O2 all the time. I still cant get over the difference. It truly blows my mind. I already have holidays booked for the summer and cant wait to get up to the cottage and relax and reflect on everything that has been going on. Another thing I cant get over that I was telling one of my good cf friends, is the look on peoples face when your standing there and say that I just got out of the hospital from having a double lung transplant. Most of the time they are completely lost for words and their jaws hit the ground lol its priceless. In other news my post transplant appts start this Monday. I have to be at TGH before 9 am for blood work to check for my Cyclosporin levels which is my anti rejection meds. Then its off for PFT's (Pulmonary Function Test) I am really anxious to see what my numbers are. I then have to have chest x ray then clinic at 12:15. I then have physio Tuesday at 1 pm and then Wednesday at 2:30pm, I then got a call saying they had a bonchoscopy booked for wed too at 9:15 and like me to be there and hour before. So it will be another long day. Thank god physio said I could just do 2 days this week cause of Mondays stuff.