We went to sleep Monday night February 11, 2012 after once again saying "Maybe tomorrow". We awoke on Tuesday morning a little late, maybe around 9:00 - 9:30. When you knnow you aren't getting out of the chair all day, there is no hurry to wake up. Arletha was up and about and being her regularly busy self. You know with just the two of us living in this one bedroom suite, I don't know how she kept herself so busy, but she always was. Lots of "puttering around" I called it. Keeping herself sane I think is what she called it. In any event, no striking dream through the night, no sudden revelation, no flashing lights, nothing that would give us any reason to think that February 12 would be any different than February 11, and yet we looked at each the same as every other morning and said "Maybe today"...and we waited for the pager to go off.
I think sometimes we are tested when we aren't even aware of it. I have spoken of patience before being the ability to maintain a postive attitude while waiting for something. I believe that a lack of patience is not only detrimental to your emotional and physical well being, it can also screw with your Karma, if you believe in that sort of thing. So we try to be patient and be postive. Arletha's patience was put to the extreme test on February 13. It is funny that as I write this I just think I am writing to some friends, and I have to remind myself that anyone and everyone can read this, so I won't go into great detail here. Suffice it to say that Arletha had just about enough shit to deal with and a plunger wasn't helping. Just as she threw up her arms to ask God how much more shit she was going to have to deal with, my cell phone rang. It was Carol from the transplant clinic. The time was 1:13 pm.
Carol (C): Hi Mike, it's Carol, how are you?
Me: Oh good morning Caorl, I'm fine thanks, yourself? (Arletha in the background immediately recognizing who it was, was pointing at me and saying "don't you tell her you're fine, tell her you need those new lungs")
C: Well I have some good news
Me: Oh
C: Yes, it looks like we have that set of lungs you have been waiting for.
Me: (pregnant pause) Uh, how can that be, the pager is right beside me, and it did not go off
C: Well I am the one who alerts the page, but I prefer to make the direct call when I can
Me: OH (long pause) um, so now what (I'm pretty sure that at this point she thinks I have lost my mind)
C: Well it will be for a double lung transplant and we need you to get to the Emergeency Admitting at VGH as quickly as you can
Me: A double transplant? Excellent!
C: Yes, do you want me to call you an ambulance?
Me: No, that is OK, my daughter and my brother as well as Arletha are all here, I think we can manage. How much time do we have?
C: Get here as soon as you can, if everything checks out, the operation should be around midnight
Me: Um, OK, well I guess we better get moving. Thank you so much for the call
And I hung up. I believe the total length of the call was about 1 minute and change. The stress, worry, tears and everything that we had gone through awaiting that one minute call, was such that, when I hung up, it just seemed so anti climatic. Like now there should be a band playing, fireworks going off ......
But instead of that I had something so much better! I had my wife and daughter almost in tears as I officially relayed to them what I knew they had already interpreted from the call. Of course, because of a bit of a late start to the morning, and the "shitty time" Arletha had dealt with already, I was not yet offcially ready for the day ie wash and a shave, clean clothes and such. And these things genearlly take time. But we were well oiled machine now and everyone knew what they had to do. It was a blessing actually that we had something to do, tasks to focus on. Because thinking about the fact that we were actually going to the hospital to get the transplant, could cause you to simply break down and cry. And there were moments when that was simply unavoidable, but we had tasks to accomplish, and that was good. Well, I use the Royal We, my primary function, as it had been since we got home November 20, was to cooperate when asked, and keep breathing. As I mentioned, John was off work that day, so he was enlisted to help me into the wheelchair and load me into the car, and he followed us in his vehicle. time frmm call to time to admitting, 1 hour 6 minutes. John had made a couple of calls before we left the house, and Arletha and I made a few while en route to the hospital, so it seemed like everyone, including our relatives in Ireland and England knew we were on our way, by the time we got to the hospital.
I am simply not near enough of a wordsmith to express the emotions that I felt, never mind the emotions of Arletha, Raylene and John, as we went through the admitting procedure at the hospital. It was surreal. It is a moment we had been hoping and praying for so long for, it was so hard to fathom that the time had finally come. It was hard not to cry, so I did. Family came to visit us in the room before the surgery once I was admitted. And there were more tears. Those were some of the best tears I have ever shed.
Saturday, 23 February 2013
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!
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!
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