I finally got the video I made to post to youtube so I thought I'd share it again.
Click the link below to watch!
Pre-Transplant Video
Tuesday, August 27, 2013
Tuesday, August 20, 2013
Waiting, Waiting, and More Waiting
Well, it has been over 13 months now waiting for a new pair of lungs. I never thought that I would be waiting this long when I got on the list last July. I thought "heck, this won't be a long wait. They will find me some new lungs, put them in, and then I can get on with my life." Unfortunately it did not work out like that. It is definitely true that waiting is the hardest part. I've heard that even the recovery seems easier than this dreadful waiting game. Every time the phone rings I look at the display hoping to see if it reads "University Hospital". But still nothing.
On the 12th of August my mom and I went back up to the transplant clinic for a visit. We met another one of the doctors there and he was a very nice man. He answered a lot of our questions and reassured us that they are still thinking of me and searching for the perfect lungs for me. It's always nice to visit the clinic there to get that reassurance because this waiting is so hard. Sometimes I feel as if they have forgotten about me, but I have to quickly erase that thought from my head and know that they are doing their best.
The main problem in finding lungs is the lack of donors in Alberta. I've been thinking of ways that I can help spread the word about the need for organ donation. I know that it is often the last thought on people's minds when a loved one is dying, but it is so very important. I hope people will have conversations with their loved ones about their wishes regarding their organs if something was to happen to them. I am also thinking of writing to a few newspapers in Alberta to see if they would help me in raising awareness.
On the 19th of August I was back down in Calgary seeing my regular CF team. My lung function is relatively stable, but is also declining very slowly. I also put on another 2 kgs and am now a whopping 124lbs. Perfect weight for surgery! The doctor is thinking of hospitalizing me this fall for a tune up. I usually get sick in the fall and end up in the hospital anyway. I certainly don't need to lose any more lung function though! If I can stay the way I am right now, than I do have time to wait for the perfect lungs, but if I start declining faster there will be a greater urgency for lungs.
I've been keeping pretty busy. We've been camping a few times out at the lake. I also went in our boat for the first time last weekend. The weather has been nice so that makes things a lot easier for me too. We are planning on going camping for the September long weekend as long as it is not pouring rain. I'm trying to get out a do a lot while it is nice out because I know when it starts snowing and getting cold I will be cooped up inside. I do not do well in cold weather.
I guess all I can do for now is keep waiting and hoping that a suitable donor comes along soon!
Oh, I've also been having dreams lately that I have been called for transplant. That has to be a good sign right? I think it means that I am emotionally and mentally ready to get in and get this done! Last night I dreamt that we were sitting on the couch watching tv and I got the call. Other dreams have included me waiting at the hospital to go into surgery, etc. Mom also has been having dreams about me getting called. I know it HAS to be coming soon!
On the 12th of August my mom and I went back up to the transplant clinic for a visit. We met another one of the doctors there and he was a very nice man. He answered a lot of our questions and reassured us that they are still thinking of me and searching for the perfect lungs for me. It's always nice to visit the clinic there to get that reassurance because this waiting is so hard. Sometimes I feel as if they have forgotten about me, but I have to quickly erase that thought from my head and know that they are doing their best.
The main problem in finding lungs is the lack of donors in Alberta. I've been thinking of ways that I can help spread the word about the need for organ donation. I know that it is often the last thought on people's minds when a loved one is dying, but it is so very important. I hope people will have conversations with their loved ones about their wishes regarding their organs if something was to happen to them. I am also thinking of writing to a few newspapers in Alberta to see if they would help me in raising awareness.
On the 19th of August I was back down in Calgary seeing my regular CF team. My lung function is relatively stable, but is also declining very slowly. I also put on another 2 kgs and am now a whopping 124lbs. Perfect weight for surgery! The doctor is thinking of hospitalizing me this fall for a tune up. I usually get sick in the fall and end up in the hospital anyway. I certainly don't need to lose any more lung function though! If I can stay the way I am right now, than I do have time to wait for the perfect lungs, but if I start declining faster there will be a greater urgency for lungs.
I've been keeping pretty busy. We've been camping a few times out at the lake. I also went in our boat for the first time last weekend. The weather has been nice so that makes things a lot easier for me too. We are planning on going camping for the September long weekend as long as it is not pouring rain. I'm trying to get out a do a lot while it is nice out because I know when it starts snowing and getting cold I will be cooped up inside. I do not do well in cold weather.
I guess all I can do for now is keep waiting and hoping that a suitable donor comes along soon!
Oh, I've also been having dreams lately that I have been called for transplant. That has to be a good sign right? I think it means that I am emotionally and mentally ready to get in and get this done! Last night I dreamt that we were sitting on the couch watching tv and I got the call. Other dreams have included me waiting at the hospital to go into surgery, etc. Mom also has been having dreams about me getting called. I know it HAS to be coming soon!
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