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!