Monday, December 26, 2011

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.

Monday, December 19, 2011

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.

Sunday, December 11, 2011

Getting sick after 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! 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.

Wednesday, November 23, 2011

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.

Tuesday, November 15, 2011

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!

Tuesday, November 1, 2011

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.

Monday, October 24, 2011

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 :)

Monday, September 26, 2011


Well life is good, well let me 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.

Monday, August 29, 2011

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.

Tuesday, July 19, 2011

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.

Saturday, June 11, 2011

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!

Wednesday, June 1, 2011

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.

Thursday, May 26, 2011

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 know you want to!
The newspaper story:

Great Strides website to my sponsor page:

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

Monday, May 16, 2011

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!

Thursday, April 28, 2011

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!

Tuesday, April 19, 2011

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!

Monday, April 4, 2011

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?

Friday, April 1, 2011

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.

Wednesday, March 30, 2011

Home Time

Today is my final day here. Monday I had my 2 chest tubes removed and was told a couple days and I can go home. Well Tuesday came and the morning went with no sign of the Lung Transplant team seeing me. Which was a little discouraging it was like they knew what I wanted and were avoiding me. Any ways I tried to stay busy which was hard, especially when you know you are now well enough to go home it just seems ohh that much harder. Before breakfast I Had to go down to the pharmacy and get raped for my insulin pen needles(normally free for me at shoppers in Penetang cause it is covered under my odsp) but they could not do it here cause they did not have a formal letter or account set up with ODSP. $37 for a box ouch! I will keep the receipt and see if ODSP will reimburse me. I also grabbed a coffee then came back upstairs to have my breakfast. When I was done it was time to do meds and such so I looked after that. Then went out to the lounge to find something to watch on TV. I sat in there for awhile till boredom crept up on me again. I then went for another walk around downstairs and got yet another coffee. Thank god I have a Timmies card care of a gift from my sister :) and then sat downstairs for a bit before heading back up to see what lurked for lunch. While waiting for the elevator I ran into my other fellow post tx friends dad and chatted a bit. He was happy to hear that I get to come home Wednesday(which is now today lol) And said that he would tell her daughter that they would come to visit after she was done her physio. Well lunch was chicken salad on somewhat stale rye bread. I ate it anyways, I didn't feel like going down and stuffing my face in the food court and feeling bloated all afternoon. When I was done went back to the lounge for a bit but couldn't find anything to watch, but got a bag of chips, I have become addicted again to Mrs Vicki's Sea salt and Vinegar chips lol. I have to have 1-2 bags a day lol. I then went walk about again. Went downstairs, where I ran into one of the lung transplant team in the elevator and asked if they were trying to avoid me and if he knew what was up for wed.? He said he had no idea that I would have to ask the other members, wow that was alot of help bud! So anyways walked thru the food court and went and sat outside for a few minutes, got to chat with my gf on the phone which was nice. Then came back in and wandered back up to the Timmies level lol where I sat in the hallway and talked to my mom and also roommate on the phone. I tell you the crack berry has really gotten a work out this last month. I then grabbed yet another I needed another, if you lost count that's the third lol. And headed back upstairs. I left a message with my nurse to find out from the Dr or the discharge nurse about my escape on Wed so I could make plans with my friend to come and get me. She later came in and said the Dr would be in sometime this afternoon to see me that they came in the morning and I wasn't in my room. She had told them I was in the lounge and they said ohh well. She told them they cant expect me to just sit in my room all day long lol. The dr came in and asked how I was feeling and looked at the dressings. He said I would be able to go home Wed and that I would probably not need home care. That they would just remove the dressings Wed morning and if not oozing at all just leave them off. He said Ill have some routine labs in the morning and meet with the discharge nurse for my meds and that I should be able to get out just after lunch. It was the best news I heard since the news the lungs were a go hahaha. Its been a long road, but like Ive told others I don't regret it. It feels nice to be able to take deep breaths, not cough at all. It will still take some time for my chest to heal and some of the pain to go away. But its slowly coming together. Just gotta take things easy and try not to rush and start doing all the things Ive been wanting to do pre tx lol. I will be most defiantly be keeping you updated even though im not in the hospital anymore. I also would love to say a huge thanks to all the love and support from all my family and friends it means the world to me. It truly helped me get thru this, thru the hard and challenging times, the emotional times.

Monday, March 28, 2011

A postive day

Today has started out wonderful. My 2 chest tubes barely drained at all overnight which was a relief :) So the Dr called for an x ray and 9am then when I got back they looked at the x ray and made the decision that both tubes can come out woohoo! Its so much more comfortable without these tubes hanging out of me. I feel like a free man lol. I then asked when I will get discharged and they said not for a couple of days, the only reason is cause of all the problems I had with the left side chest tube and leakage. When they first install the tubes they leave a stitch in that is loose so when the tube is pulled the pull the stitch tight to seal the hole where the tube is and help heal, well with the left side leaking so much they had to use that stitch last week to tighten the tube into my chest to stop the leakage. So today when the pulled it they did have anything to pull the hole close tight so the had to pack it with dressing. So they just want to keep an eye on the dressing but don't want to change it for 48 hours. So although I don't get to go home today its in the very near future, Wednesday I'm planning as long as there is no complications which I don't see happening, fingers crossed. The funny thing when the pulled the tubes I figured the left side would of been more painful seeing as it has been in there since Feb 25th but it no where as painful as the right side, hell I was almost in tears when they were tightening the stitches on the right side. But its all over now.

They then booked me another x ray after the chest tubes were out. Id imagine everything looked good cause the Dr never came back in. I am truly surprised if I'm not radioactive yet with all the x rays Ive been doing since Ive been in here lol.

While I was waiting for the porter to bring me back to my room after my last xray I started going through my records binder and noticed wrong info, they had my family Dr listed as Dr Freitag which was my old CF clinic dr when I attended Mcmaster University now 2 years ago, I have no idea where they got that info? There was no mention of my St Mikes CF Dr which I am now using. So I had to correct them on my family Dr in Midland. Guess it was a good thing I got nosey and checked things out lol.

Other then that, Ive been walking all over the hospital today, went up and visited them in the treadmill room and see about getting my appts set up for physio next week but they wanna wait to see when I have to come for clinic. So they can book the same day to save trips. They said I wont be able to get all afternoon appt's some will be 10:30am. so there will be a few early mornings.

I'm really looking forward to getting back home. I was gonna go to my moms for a few days but seeing as Ive been here for a month Ive been able to get pretty mobile and the drugs are not giving me and side effects so I think I'm just gonna go back to my own house. My roommate is there if I do run into needing any help. I am truly too independent and have been most of my life.

This morning I was sitting here chatting with my GF about things I'm looking forward to doing this summer like getting a nice veggie garden going. Already have the cottage booked for the second last week of August, so looking forward to that alot. Ive missed out on the cottage for the last 2 years but seems even longer then that. Being up there is like being able to hang out with my dad. Just hopefully its still warm, usually by then it starts getting pretty cool at night and 6 am fishing is kinda chilly and unproductive lol. But fingers crossed. I'm really hoping my gf can make it up so she can see how much of a relaxing and calming place it is :) Plus get to spend a nice week together!

Other then that I'm on the search again for a body for my jeep and hope I can get that back on the road by the summer to enjoy some topless sunny drives. Think I will still have to hold off awhile with all the offroading till I'm fully recovered but I still have the urge to drive it.

There is gonna be so much new experiences, life is gonna be grand. And even getting back to the normal life of not being attached to O2.

Saturday, March 26, 2011

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 :(

Thursday, March 24, 2011

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!

Tuesday, March 22, 2011

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, March 21, 2011

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 :)

Saturday, March 19, 2011

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 !

Friday, March 18, 2011

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.

Thursday, March 17, 2011

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

Tuesday, March 15, 2011

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!

Friday, March 11, 2011

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!

Thursday, February 24, 2011

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 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

Wednesday, February 23, 2011

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>>

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 :)

Tuesday, February 15, 2011

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.

Tuesday, February 8, 2011

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 :)

Wednesday, February 2, 2011

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.