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.