The blog I have been waiting to post

I had prepared a short update post last week and thought I had posted it, but obviously the drugs were still affecting me, because it isn't here. So with out any further ado, I am extremely proud to introduce to the world, my brand new set of healthy lungs.Well I guess I can't introduce new lungs,  so the real announcement is that I have new lungs. Let me say that again, I HAVE NEW LUNGS!!!

There is so much I have to, and want to say, but I am going to try and do this in  shorter stories. However this first story here has to be about "getting the call". As some of you know my condition  had deteriorated significantly around Thanksgiving last year. As a result I was admitted to St. Paul's Hospital  on October 13, 2012 for the second time. At this  point I was unable to stand up or walk even 6 feet regardless of the  20 litre flow of oxygen. The effects of the Cyclophosphamide that I had been receiving the previous 6 months had apparently worn off, continued use would damage other organs. The new drug they had me on was apparently not working. They put me on another new drug, Mychophenolate, which is generally used post transplant, but the thought was what the hell let's give it a shot. The drug worked in the aspect that I did not deteriorate further, however there was no improvement either. I lay in bed at St. Paul's until November 20, 2012. At that point the doctors told me I had been moved to the very top of the  list for transplantation, however there was nothing further they could do until new lungs became available and so I was sent home with a pager and we began waiting. I on nasal prongs with a steady flow of 6 lpm flow of oxygen, from an oxygen concentrator.  When I went to stand up and move, I placed a mask over my nasal prongs and cranked up an extra O2 canister with an additional 15 litre flow

For  the first couple of days I slept in the  bed and got up in the morning and walked the 12 feet to my recliner in the living room. I must admit, I was happy to be home. If you have to just sit around and watch TV or read, you might as well be at home instead of the hospital. However the amount of exertion required and subsequent shortness of breath from the walk to the recliner in the morning, and then back to the bed at night, became far too difficult, and most likely dangerous. It was taking up to half an hour to catch my breath after that 12 foot walk. One night I decided it was simply not worth  the effort or the risk so I stayed in the chair that night, and the next day, and the next night, and the next day and.....And we waited for the pager to go off. I rose out of the chair and stood up for personal care  but that was it. The only time we left the apartment was to go to a doctors appointment once every three weeks, and what an ordeal that was. A nurse came to the house once a month to take blood, a home support worker came over for a few hours a couple of times a week so Arletha could go grocery shopping or something, at least get out and see some of the world anyway. And we waited for the pager to go off.

Every night before we went to sleep we'd hold hands and say "Maybe tomorrow" and every morning we'd say "Maybe today". And we waited for the pager to go off. In October my respirologist told me that he believed I would need to have a transplant within the next 30 - 60 days, basically Christmas, in his mind, was a long shot. We were encouraged somewhat by the transplant doctor, who thought that was a little grim and he felt I could go several months maybe even to Easter. The median wait time for a double lung transplant in BC at the time was 10.7 months. I'm  not sure of the wording but 10.7 sounds like more than several. So we waited for  the pager to go off.

People came over for visits, and I hated that they always had to lean down to the chair to give me a hug and I couldn't stand up and greet them, but I was always happy to have company.It is said that one of the keys to a successful medical outcome is a positive mental attitude, which I truly believe. However what I also believe, is that it is far easier to have or maintain a positive outlook, if you are surrounded by people who love and support you, either in person, text emails, cards whatever. Knowing that there are people out there cheering for you helps you stay positive and determined. I was blessed by any overwhelming  amount of the love and support. So we told everyone we were fine, and we waited for the pager to go off

We were told that that they are going to send you a test page  every second Thursday. I remembered that the first time, so was not shocked when the pager went off and I made the call and they confirmed it was a test. Disappointed, but not surprised. But the next time, I was in the middle of a nap when the pager went off, I woke up and heard it. I started yelling for Arletha, I was digging out my phone for the Clinics number, it was crazy. Arletha came running in asking what was going on and I told her, and although we were still hopeful, she reminded me it was Thursday.....So we waited for the pager to go off, for real

I will write more tomorrow  night. No  real suspense here, because I already told you I have new lungs, but  the story is fun to tell. We'll talk soon and thanks for caring

Please also take a moment and quietly thank the donor for giving me this wonderful gift. It is truly the greatest gift we have in us to give. Be a donor!