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!
Thursday, 24 January 2013
Be Patient
Patience, n. A minor form of despair, disguised as a virtue
Devils Dictionary;Ambrose Pierce (American satirist)
It seems to me that technology is expanding at such a rate that we are in a constant state of anxiety just trying to keep up. This seems to contradict what the technology creators tell us. Isn’t all of this new technology supposed to make our lives easier, to make accomplishing tasks quicker, thus freeing up time for us to spend with our family and friends or doing other things we enjoy doing? Is that what is happening? I think not.
It appears that we have become so conditioned to believe that we should not have to wait, that we have a society that is in a constant state of impatience. How many times have you stood beside the fax machine waiting for a document to come through and steamed with the delay, or waited for something to download onto your computer or Smartphone? I think it is time we recognized that the faster things can be done, the more we are expected to do. There is no new “free time” as a result of technology; we are just expected to do more. We need to recognize that the advancement of technology to make things faster, is not about making our lives easier, or freeing up our time; it is about money, pure and simple.
It seems we have become so conditioned that we must have everything quickly, that if we are forced to wait, while we ride the bus, or wait in line at the bank, we must have something to distract us, we have lost all sense of patience. Although it is nice to have a phone with you in case of an emergency or to call someone and let them know you will be late, do we really need it to watch TV on, to play games on? Before it was available, did you even think that is something you wanted, or needed?
And now we are starting to train and condition our children in this same way, at a very early age. I just saw an Advertiement for the Ipotty!? Seriously? Do we now have to give our children computer games to play while they sit on the potty? Listen, I’m not against technology, but I have been thinking more about its impact lately. Mainly because I have been thinking a lot about waiting, which makes me think about patience. I am thinking about patience, because I am sitting in a recliner chair waiting for my pager to go off to tell me that it is time to go to the hospital for a lung transplant.
According to Wikipedia:
Patience (or forbearing) is the state of endurance under difficult circumstances, which can mean persevering in the face of delay or provocation without acting on annoyance/anger in a negative way; or exhibiting forbearance when under strain, especially when faced with longer-term difficulties. Patience is the level of endurance one can take before negativity. It is also used to refer to the character trait of being steadfast.
Yup, that pretty well sums up what I am doing. Trying to persevere. People tell me “Oh Mike I can’t believe how patient you are being”. And I sit here and think, “Well it is not like I have any other option”. However, you know what, that is not true. I do have an option, and you do too. Although it is true I have no choice but to wait, it is also true that I can choose the attitude I will have while I wait. I don’t enjoy waiting, but I don’t see any advantage in complaining about it. Even if there was someone to blame, what would be gained by yelling at that person? In any event, I anticipate the pager going off soon, so, in the words of Margaret Thatcher,
“I am extraordinarily patient, as long as I get my own way in the end”.
One last quote, this from Leonardo Da Vincini:
Patience serves as a protection against wrongs as clothes do against cold. For if you put on more clothes as the cold increases, it will have no power to hurt you. So in like manner you must grow in patience when you meet with great wrongs, and they will then be powerless to vex your mind.
So, be patient, don’t be in such a hurry. You only get one life, enjoy the journey
Saturday, 19 January 2013
Viva Las Vegas
OK, so Las Vegas..
I had spent months looking at websites and talking to people to figure out what we were going to do on our trip. We were to be there for 7 days and neither of us our big gamblers. So we had a convertible car booked, with plans to drive out to the Hoover Dam and the Grand Canyon, see a show, go out for some nice dinners. But here is how it went....
When we last left our heros, we were in the ER at the Desert Springs Hospital in Las Vegas. I was being poked and prodded by the doctors and nurses, and Arletha left to retrieve our luggage and get checked into the hotel. I can still see the look of bewilderment on Arletha's face as she realized that she was going off into Las Vegas unescorted. If I wasn't so concerned for her, it would have been comical. We both laugh about it now, but at the time, Arletha by herself in an unknown big city, was scary for both of us. But bless her heart, off she went to the airport and got the luggage. Next step...rental car. Much more of an issue. She had no intention of driving, just wanted to check in and let them know that we wouldn't need the car for a day or two. Despite the situation, the kind and caring people at Alamo Car Rental still tried to upgrade Arletha and charge her an additional $400 for the rental. Clearly they were not aware of my darling wife's frugal tendencies, there would be no upgrade. So from the airport to the hotel. To hear her tell the story is priceless. Anyone who knows Arletha, knows that she can and does make friends everywhere she goes.... while waiting in line at Safeway, the concession stand at the park or even in an elevator. For some reason people always open up to her. I could know somone for months, but Arletha could meet the same person and talk to them for a half hour, and she will know way more about them than I do, or I dare say, ever would. And so it went in Vegas
She checked in at the front counter of the three hotel resort and they drove her in a golf cart type vehicle to her hotel and dropped her off. She gathers up the bags and heads to the room. Unfortunately they had dropped her off at the wrong building and it is a long way back. Well just as she is lamenting the terrible day she is having, the elevator doors open and she hears the ladies inside mention that they are from New Brunswick. This wonderful group of ladies, travel together on a regular basis and call themselves the Smelly Cats. In this case they were there to celebrate the b'day of one of the group. They never missed a beat and quickly adopted my darling wife, named her the 'Stray Cat' and got her back to the front desk and then into her room. Thier kindness and helpfulness didn't stop there however. As Arletha was now on her own, they took her with them out to dinners, the casinos and tried to help her have at least some fun in Sin City. I have never met these ladies, but I cannot thank them enough.
We had made prior arrangements to hook up with my brother Bren and his wife Pam. I was texting with them from the hospital, and each day I thought that would be the day I was going to be discharged. Well they showed up, but the only good time we had in Vegas together was bedside in the hospital. They did go out with Arly one night, and from the couple of talks we had on the phone that night, it sounded like a few beverages were enjoyed. I think Arly even won a few dollars at the slots.
The impetus for the trip in the first place had been to celebrate Arletha's birthday. Instead of going to a show and dinner, Arletha went to a Red Lobster that was not too far from the hospital and brought supper back to my room, where we toasted her special day with Cokes.
Well the only good thing about the trip, was leaving...We were loaded onto a private jet with just the two of us, the pilots, a nurse and a paramedic. Personalized service extrordinaire!!
So that was the trip. I stayed in the hospital and tried to get the doctors to discharge me, and Arletha for the most part, rode in taxis back and forth to the hospital. Not the trip we had planned. We just never envisioned, even after a week in the hospital, that we would still be dealing with the same medical issue almost a year later. But here we are. Who knows what the future holds, or how long it will take to get the transplant? All we know is that we have faith that we will have a sucessful transplant, and that we will return to our home....we just don't know when. We will talk about waiting next time, In the meantime,,,Live Life, Pass it On
I had spent months looking at websites and talking to people to figure out what we were going to do on our trip. We were to be there for 7 days and neither of us our big gamblers. So we had a convertible car booked, with plans to drive out to the Hoover Dam and the Grand Canyon, see a show, go out for some nice dinners. But here is how it went....
When we last left our heros, we were in the ER at the Desert Springs Hospital in Las Vegas. I was being poked and prodded by the doctors and nurses, and Arletha left to retrieve our luggage and get checked into the hotel. I can still see the look of bewilderment on Arletha's face as she realized that she was going off into Las Vegas unescorted. If I wasn't so concerned for her, it would have been comical. We both laugh about it now, but at the time, Arletha by herself in an unknown big city, was scary for both of us. But bless her heart, off she went to the airport and got the luggage. Next step...rental car. Much more of an issue. She had no intention of driving, just wanted to check in and let them know that we wouldn't need the car for a day or two. Despite the situation, the kind and caring people at Alamo Car Rental still tried to upgrade Arletha and charge her an additional $400 for the rental. Clearly they were not aware of my darling wife's frugal tendencies, there would be no upgrade. So from the airport to the hotel. To hear her tell the story is priceless. Anyone who knows Arletha, knows that she can and does make friends everywhere she goes.... while waiting in line at Safeway, the concession stand at the park or even in an elevator. For some reason people always open up to her. I could know somone for months, but Arletha could meet the same person and talk to them for a half hour, and she will know way more about them than I do, or I dare say, ever would. And so it went in Vegas
She checked in at the front counter of the three hotel resort and they drove her in a golf cart type vehicle to her hotel and dropped her off. She gathers up the bags and heads to the room. Unfortunately they had dropped her off at the wrong building and it is a long way back. Well just as she is lamenting the terrible day she is having, the elevator doors open and she hears the ladies inside mention that they are from New Brunswick. This wonderful group of ladies, travel together on a regular basis and call themselves the Smelly Cats. In this case they were there to celebrate the b'day of one of the group. They never missed a beat and quickly adopted my darling wife, named her the 'Stray Cat' and got her back to the front desk and then into her room. Thier kindness and helpfulness didn't stop there however. As Arletha was now on her own, they took her with them out to dinners, the casinos and tried to help her have at least some fun in Sin City. I have never met these ladies, but I cannot thank them enough.
We had made prior arrangements to hook up with my brother Bren and his wife Pam. I was texting with them from the hospital, and each day I thought that would be the day I was going to be discharged. Well they showed up, but the only good time we had in Vegas together was bedside in the hospital. They did go out with Arly one night, and from the couple of talks we had on the phone that night, it sounded like a few beverages were enjoyed. I think Arly even won a few dollars at the slots.
The impetus for the trip in the first place had been to celebrate Arletha's birthday. Instead of going to a show and dinner, Arletha went to a Red Lobster that was not too far from the hospital and brought supper back to my room, where we toasted her special day with Cokes.
Well the only good thing about the trip, was leaving...We were loaded onto a private jet with just the two of us, the pilots, a nurse and a paramedic. Personalized service extrordinaire!!
So that was the trip. I stayed in the hospital and tried to get the doctors to discharge me, and Arletha for the most part, rode in taxis back and forth to the hospital. Not the trip we had planned. We just never envisioned, even after a week in the hospital, that we would still be dealing with the same medical issue almost a year later. But here we are. Who knows what the future holds, or how long it will take to get the transplant? All we know is that we have faith that we will have a sucessful transplant, and that we will return to our home....we just don't know when. We will talk about waiting next time, In the meantime,,,Live Life, Pass it On
Tuesday, 15 January 2013
Sorry for the delay
Let me start out by first saying, in the words of Gary Bettman, "I'm sorry". I have no real excuse for not posting more frequently. All I can say is that at the end of each day I say OK, tomorrow I will post something, and then the day slips away and that night I again promise myself I will post tomorrow... It seems ridiculous, given that I am stuck in this recliner chair and, with the exception of the odd doctors appointment, don't have anything else I have to do. All I can say in my defence is that the cough that comes along with the fibrosis, has gotten worse. As a result I am taking more medication to control that. The meds make me a little loopy (I hear you that are saying I am loopy even without the meds), and drowsy. But I think even more to the point, it seems to drain any ambition. In any event, here I am again.
So, quick health update. Despite my tardiness in posting, I am fine. As noted above, my cough has got a little worse, but that is mostly controlled by taking more drugs. Outside of that, and the fact that I can't walk to the bathroom, even with increased oxygen, I feel very healthy. No aches or pains, no headaches, and even though I am restricted to the recliner, not stiffness or soreness. Outside of recent digestive issues, resulting in nauseous feelings and upset stomach, I am surprised at how well I feel. There are friends and family that have recently contracted the Flu and they look and sound worse than me!
As many of you know, this ordeal has left Arletha and I without any source of income. Back in May 2012, when I was told that the only treatment option left was transplant, it became apparent that we were going to be in some serious financial trouble. Visions of losing our home and having to go on Welfare were front and centre. It was then that we came to understand and appreciate the depth of love and support from our family and friends. One can say that you should be able to count on family to step up, but I know that does not happen in all families, sometimes due to the family relationship themselves, but sometimes simply due to the fact that the familyy does not have the funds or the wherewithal with which to help even if they wanted to. My family has done so much more than just step up. Their constant love and support, both emotionally and financially, has been truly life saving. We have been so fortunate and we try to never lose sight of that fact. In addition to our families, Arletha and I have been blessed with the generosity of truly amazing friends on the Sunshine Coast like Gary & Sharlene, Marc & Ingrid, Mike & Kate, as well as dear friends from Thunder Bay, John & Patti and Arlethas' friends, the Smelly Cats from New Brunswick, and so, so many others. There are so many and too many to list, some of whom we have never even met, but please know that all of you have a special place in our hearts.
Over the Christmas holidays I, like so many others, enjoy listening to Christmas songs. My brother Tony introduced me to some very off colour songs by a fellow by the name of Kevin "bloody" Wilson. He does a song in which a small boy and girl express their displeasure with Santa for not bringing them the things they asked for. One line from the song goes " Hey Santa you geriatric old fart, you forgot my f---ing bike" While I don't condone the use of foul language during the Christmas season, I must also express my displeasure in not receiving my lungs for Christmas. for those of you who are not easily offended you can get the song on youtube. Substitute lungs for bike, and you will get the idea about how I feel about still sitting here waiting lol
OK, that is is for now. I know I promised a story about the stay in Vegas and I will get to it, but really wanted to get this update out there. Thank you to everyone for their ongoing love and support, it truly means so much to Arletha and I.
So, quick health update. Despite my tardiness in posting, I am fine. As noted above, my cough has got a little worse, but that is mostly controlled by taking more drugs. Outside of that, and the fact that I can't walk to the bathroom, even with increased oxygen, I feel very healthy. No aches or pains, no headaches, and even though I am restricted to the recliner, not stiffness or soreness. Outside of recent digestive issues, resulting in nauseous feelings and upset stomach, I am surprised at how well I feel. There are friends and family that have recently contracted the Flu and they look and sound worse than me!
As many of you know, this ordeal has left Arletha and I without any source of income. Back in May 2012, when I was told that the only treatment option left was transplant, it became apparent that we were going to be in some serious financial trouble. Visions of losing our home and having to go on Welfare were front and centre. It was then that we came to understand and appreciate the depth of love and support from our family and friends. One can say that you should be able to count on family to step up, but I know that does not happen in all families, sometimes due to the family relationship themselves, but sometimes simply due to the fact that the familyy does not have the funds or the wherewithal with which to help even if they wanted to. My family has done so much more than just step up. Their constant love and support, both emotionally and financially, has been truly life saving. We have been so fortunate and we try to never lose sight of that fact. In addition to our families, Arletha and I have been blessed with the generosity of truly amazing friends on the Sunshine Coast like Gary & Sharlene, Marc & Ingrid, Mike & Kate, as well as dear friends from Thunder Bay, John & Patti and Arlethas' friends, the Smelly Cats from New Brunswick, and so, so many others. There are so many and too many to list, some of whom we have never even met, but please know that all of you have a special place in our hearts.
Over the Christmas holidays I, like so many others, enjoy listening to Christmas songs. My brother Tony introduced me to some very off colour songs by a fellow by the name of Kevin "bloody" Wilson. He does a song in which a small boy and girl express their displeasure with Santa for not bringing them the things they asked for. One line from the song goes " Hey Santa you geriatric old fart, you forgot my f---ing bike" While I don't condone the use of foul language during the Christmas season, I must also express my displeasure in not receiving my lungs for Christmas. for those of you who are not easily offended you can get the song on youtube. Substitute lungs for bike, and you will get the idea about how I feel about still sitting here waiting lol
OK, that is is for now. I know I promised a story about the stay in Vegas and I will get to it, but really wanted to get this update out there. Thank you to everyone for their ongoing love and support, it truly means so much to Arletha and I.
Wednesday, 21 November 2012
Updates
OK, so I started this Blog mainly with the intention of keeping interested folks up to date on what has been happening with me, and what is currently happening. However I discoverde that I had a story(s) to tell. So now it has been brought to my attention that I have been somewhat remiss in bringing eveyone up to date as I digress into other stories. So, for the benefit of those who would like a quick update, I will provide a quick timeline and we will continue with filling in the gaps later:
2012
February 25: Admitted to hospital in Las Vegas with what was initially diagnosed as pneumonia
March 06: Discharged from hospital in Las Vegas with undiagnosed pulmonary condition
March 07: Admitted to St. Pauls hospital in Vancouver
April 04: Discharged from St. Pauls with what is now diagnosed as an Interstitial Lung Disease (ILD). this is an umbrella diagnosis of which there are numerous sub catergories and hundreds of possibilities. Idiopathic Pulmonary Fibrosis (IPF), Non-Specific Interstitial Pneumonia (NSIP), connective tissue diseases (ie lupus, rheumatoid arthritis etc) and on and on. Bottom line is that they know there is progressive scarring of the lungs. The damage done is irreversible and it is getting worse. What caused it and why is unknown. I am told that the sudden onset is rare. They start me on monthly IV treatments of Cyclophosphamide. I am on supplemental oxygen full time
May 10: Meet with Medical Director of the Lung Transplant Program of BC. Decision is made to proceed with the Pre Assessment process for a lung transplant
September 01: Pre Assessment process is almost complete and we move to Vancouver in order to be close to the hospital and we are required to be in Vancouver for a minimum 3 months post transplant
October 20: Condition deteriorated, can't have any exertion, can't get up out of bed. back to St Pauls
November 13: Placed on the priority list for a lung transplant. Discharged once again. Supplemental oxygen requirement has increased to 6 lpm through nasal prongs at rest, plus an extra 15 lpm through a simple mask with any exertion (standing up)
Today: Sitting in the basement suite in Vancouver patiently awaiting the new lungs, which apparently have been delayed in transit somewhere....
That's it, you are now current. One other note though, my niece Brenda is also awaiting a transplant, a kidney transplant. She could be on a waiting list for up to eight years. So please do me a couple of kind favours:
1. Register as an organ donor. If you found this blog, then I am confident that you can find the appropriate agency and requirements for your Province or State
2. Check out her Blog: beanstalkblogger.wordpress.com. Her recent post on waiting for a transplant is an excellent read
Last thing, for those who were having difficulty leaving a comment, I think I have that fixed, so try again
OK, next time we go back to Las Vegas.
2012
February 25: Admitted to hospital in Las Vegas with what was initially diagnosed as pneumonia
March 06: Discharged from hospital in Las Vegas with undiagnosed pulmonary condition
March 07: Admitted to St. Pauls hospital in Vancouver
April 04: Discharged from St. Pauls with what is now diagnosed as an Interstitial Lung Disease (ILD). this is an umbrella diagnosis of which there are numerous sub catergories and hundreds of possibilities. Idiopathic Pulmonary Fibrosis (IPF), Non-Specific Interstitial Pneumonia (NSIP), connective tissue diseases (ie lupus, rheumatoid arthritis etc) and on and on. Bottom line is that they know there is progressive scarring of the lungs. The damage done is irreversible and it is getting worse. What caused it and why is unknown. I am told that the sudden onset is rare. They start me on monthly IV treatments of Cyclophosphamide. I am on supplemental oxygen full time
May 10: Meet with Medical Director of the Lung Transplant Program of BC. Decision is made to proceed with the Pre Assessment process for a lung transplant
September 01: Pre Assessment process is almost complete and we move to Vancouver in order to be close to the hospital and we are required to be in Vancouver for a minimum 3 months post transplant
October 20: Condition deteriorated, can't have any exertion, can't get up out of bed. back to St Pauls
November 13: Placed on the priority list for a lung transplant. Discharged once again. Supplemental oxygen requirement has increased to 6 lpm through nasal prongs at rest, plus an extra 15 lpm through a simple mask with any exertion (standing up)
Today: Sitting in the basement suite in Vancouver patiently awaiting the new lungs, which apparently have been delayed in transit somewhere....
That's it, you are now current. One other note though, my niece Brenda is also awaiting a transplant, a kidney transplant. She could be on a waiting list for up to eight years. So please do me a couple of kind favours:
1. Register as an organ donor. If you found this blog, then I am confident that you can find the appropriate agency and requirements for your Province or State
2. Check out her Blog: beanstalkblogger.wordpress.com. Her recent post on waiting for a transplant is an excellent read
Last thing, for those who were having difficulty leaving a comment, I think I have that fixed, so try again
OK, next time we go back to Las Vegas.
Tuesday, 20 November 2012
Ambulances
I had been in an ambulance twice before in my life.
You see ambulances go by all the time. Do we really give thought to who is inside or why? Whose life has been impacted, how badly or how much, is not really anything we give thought to as we pull over to the side of the road and wait for it to pass. I try to remember now, that every time an ambulance passes with the sirens going, something tragic has happened in someones life and I am grateful it is not mine.
My first time in an ambulance, I was 16. I "borrowed" my Mom's 1975 Vega, It was fire engine red, with a white racing stripe down the middle, kind of a cool looking car really. I still wonder now, as I did then, why my mom, a middle aged mother of twelve had such a sporty looking car. Anyway, I took the car and picked up my friend Doug and we headed to Downtown Vancouver to visit some friends. I only had my license for a few months and the roads were snow covered (yes it used to snow in Vancover back in the day) so I was driving slowly and carefully. The visit went well and we were heading home, in plenty of time to get there before Mom & Dad got home. Although Doug was a year older than me, he had only recently obtained his learners permit. Despite that, he asked if he could drive for a bit. Certainly against my better judgement I agreed, however implored him to drive carefully. I remember the events leading up to the accident so clearly. We were driving East on Prior St, just east of the Georgia Viaduct. There are two lanes heading East, we were in the curb lane. Due to the snow on the road, traffic was slow. However Doug decided it was too slow and so he went into the left lane to pass. Snowplows had been down the road, and thus there was a big pile of snow separating the East and West bound lanes. Due to Doug's inexperience, more likely due to his youthful haste, he did not succesfully negotiate his pass on the left and the left front tire of the Vega hit the snowbank in the middle of the road. Doug completely lost control and the car went into a spin. I remember spinning and then nothing. I woke up laying on the road, I heard voices. Police officer: "Who was driving?" Doug :"Mike was". I had no recollection at that time. I looked over and saw the car literally wrapped around a Hydro pole on the passenger side, it looked terrible and the kind of damage where you look and wonder how anyone could have survived. I was put in the ambualnce and taken to Vancouver General. I remember the smell of the ambulance, the sound of siren, the voices of the paramedics. I tried to look around, because I was amazed that I was in an ambulance, but they had me immobilized.
We arrived at the hosptial and I was checked over. Bumps and bruises and scrapes, but nothing serious and apparently I was going to live. However rather than being thankful I remember thinking I hope I am somewhat injured because that will at least delay, and hopefully reduce the punishment I know I am going to receive from my parents when I get home. A police officer came in and asked who had been driving. I had no recollection at the time, however I did remember hearing Doug say at the accident scene that I had been driving, so I said I was. He left and then returned 10 minutes later and said we have a problem, Doug says he was driving. Ok I said, I don't recall so just go with whatever he says. Bad decision, cost me $3,000.00. I allowed an unlicensed driver to operate the car and so insurance wouldn't pay, Doug didn't have any money and Dad rightfully insisted on being paid for the loss. $3,000.00 for a 16 year old in 1976, was a lot of money. You ask my 19 year old daughter now and she will tell you that $3,000.00 is a lot of money in 2012. Anyway, the story was to be about my first ambulance ride, not the costly mistakes of my youth. There are lots of examples of those, maybe we'll talk in future.
Flash forward 33 years. Went camping for a long weekend at Katherine lake on the Sunshine Coast. Good time, sitting around the fire at night. Had a few too many drinks, got up to go get another (like I needed it) stumbled and did a faceplant. Pretty embarrasing, and I got pretty cut up. Had to call an ambulance and it was a forty minute drive into Sechelt to the hospital. Completely different experience from the first one.This time I was awake and aware, well kind of aware, as I was pretty drunk. I thought I was being charming during the transport, however I suspect the paramedics may have a different interpretation and were most likely happy to be rid of me. Anyway, fairly uneventful.
I could have easily gone another 33 years before having to get into an ambulance again and not missed it, but that was not meant to be. Before getting to the ambulance from the plane, I am wheeled on a stretcher through the airport, but in the back storage areas and such. The paramedics are quick to tell us that use of this route is generally only allowed by VIPs and such. Well I am not impressed, and still not pleased that I am on a stretcher anyway. Although I msut now be honest and admit I was glad I didn't have to walk, I was just so tired. So through the airport and loaded into the ambulance. Young fellow, no more than 22 - 23 is driving with Arletha in the passenger seat, and the senior man, maybe 25 years old, is in the back wiht me. Then the interrogation starts. I don't think he meant it that way, but Jesus, Mary & Joseph, the number of questions was getting quite tiresome. He got my entire life history. We arrived at the Desert Springs Hospital in sunny Las Vegas at around 2:00 pm. I am placed in Station #10 and told that a doctor will be with us shortly. In the interim, I tell Arletha to call the travel insurance company and apprise them of the situation. Long story about that, but that is for another time. Male nurse takes all of the vitals, doctor arrives and completes an assessment and orders a chest X Ray, which is done bedside. This is followed by a CT Scan that I am wheeled away for. In the end they decide I have pneumonia and put me on IV antibiotics. At this point I am still thinking I may get out, but nooooo. We are going to have to admit you they say, you are too sick to be out. How long will I be here, a day or two they say....Crap! We don't have a bed available yet, so you will have to stay in ER until a bed opens up.....Crap!
With me in the hospital, Arletha, my dear wife who has never lived in, and has no desire to ever live in, a big city, is now going to have to return to the airport, retrieve our luggage, secure the rental car and check into the hotel. This may be old hat for some travellers, but as I mentioned before, Arletha and I had only travelled once before, and I looked after all of that. Although she did her best to hide it, my heart ached for her as I knew the fear and trepidation she had as we kissed good bye and she headed out to get a cab at about 7:00 pm. By 10:00 the ER is starting to get busy. This is the closest hospital to the world famous Las Vegas strip and thus as the evening progresses more and more inebriated people are coming in with various afflcitions and injuries. Lot of blood, lots of drug over doses, a truly horrific and unending horror movie which I could not turn off. By 2:00 am I am ready to say the heck with it and get myself out of there. Unfortunately I am trapped. So I lay there, listened to the endless harmony of all of the medical alarms going off, watched as the fellow who came in passed out and was placed in the bed next to me woke up and pulled out his IV and started to bleed everywhere, listened to the old lady two beds down call out every 10 minutes or so telling anyone who could hear her that she was in pain. It was the longest night of my life. At 9:30 am on Sunday, I was wheeled upstairs to a ward and given a bed. Even though I still really wanted to get out of the hospital, I have to admit that getting into a real bed and getting some peace and quiet to go to sleep was blissful. Little did I know that the blissful feeling was to be short lived.
You see ambulances go by all the time. Do we really give thought to who is inside or why? Whose life has been impacted, how badly or how much, is not really anything we give thought to as we pull over to the side of the road and wait for it to pass. I try to remember now, that every time an ambulance passes with the sirens going, something tragic has happened in someones life and I am grateful it is not mine.
My first time in an ambulance, I was 16. I "borrowed" my Mom's 1975 Vega, It was fire engine red, with a white racing stripe down the middle, kind of a cool looking car really. I still wonder now, as I did then, why my mom, a middle aged mother of twelve had such a sporty looking car. Anyway, I took the car and picked up my friend Doug and we headed to Downtown Vancouver to visit some friends. I only had my license for a few months and the roads were snow covered (yes it used to snow in Vancover back in the day) so I was driving slowly and carefully. The visit went well and we were heading home, in plenty of time to get there before Mom & Dad got home. Although Doug was a year older than me, he had only recently obtained his learners permit. Despite that, he asked if he could drive for a bit. Certainly against my better judgement I agreed, however implored him to drive carefully. I remember the events leading up to the accident so clearly. We were driving East on Prior St, just east of the Georgia Viaduct. There are two lanes heading East, we were in the curb lane. Due to the snow on the road, traffic was slow. However Doug decided it was too slow and so he went into the left lane to pass. Snowplows had been down the road, and thus there was a big pile of snow separating the East and West bound lanes. Due to Doug's inexperience, more likely due to his youthful haste, he did not succesfully negotiate his pass on the left and the left front tire of the Vega hit the snowbank in the middle of the road. Doug completely lost control and the car went into a spin. I remember spinning and then nothing. I woke up laying on the road, I heard voices. Police officer: "Who was driving?" Doug :"Mike was". I had no recollection at that time. I looked over and saw the car literally wrapped around a Hydro pole on the passenger side, it looked terrible and the kind of damage where you look and wonder how anyone could have survived. I was put in the ambualnce and taken to Vancouver General. I remember the smell of the ambulance, the sound of siren, the voices of the paramedics. I tried to look around, because I was amazed that I was in an ambulance, but they had me immobilized.
We arrived at the hosptial and I was checked over. Bumps and bruises and scrapes, but nothing serious and apparently I was going to live. However rather than being thankful I remember thinking I hope I am somewhat injured because that will at least delay, and hopefully reduce the punishment I know I am going to receive from my parents when I get home. A police officer came in and asked who had been driving. I had no recollection at the time, however I did remember hearing Doug say at the accident scene that I had been driving, so I said I was. He left and then returned 10 minutes later and said we have a problem, Doug says he was driving. Ok I said, I don't recall so just go with whatever he says. Bad decision, cost me $3,000.00. I allowed an unlicensed driver to operate the car and so insurance wouldn't pay, Doug didn't have any money and Dad rightfully insisted on being paid for the loss. $3,000.00 for a 16 year old in 1976, was a lot of money. You ask my 19 year old daughter now and she will tell you that $3,000.00 is a lot of money in 2012. Anyway, the story was to be about my first ambulance ride, not the costly mistakes of my youth. There are lots of examples of those, maybe we'll talk in future.
Flash forward 33 years. Went camping for a long weekend at Katherine lake on the Sunshine Coast. Good time, sitting around the fire at night. Had a few too many drinks, got up to go get another (like I needed it) stumbled and did a faceplant. Pretty embarrasing, and I got pretty cut up. Had to call an ambulance and it was a forty minute drive into Sechelt to the hospital. Completely different experience from the first one.This time I was awake and aware, well kind of aware, as I was pretty drunk. I thought I was being charming during the transport, however I suspect the paramedics may have a different interpretation and were most likely happy to be rid of me. Anyway, fairly uneventful.
I could have easily gone another 33 years before having to get into an ambulance again and not missed it, but that was not meant to be. Before getting to the ambulance from the plane, I am wheeled on a stretcher through the airport, but in the back storage areas and such. The paramedics are quick to tell us that use of this route is generally only allowed by VIPs and such. Well I am not impressed, and still not pleased that I am on a stretcher anyway. Although I msut now be honest and admit I was glad I didn't have to walk, I was just so tired. So through the airport and loaded into the ambulance. Young fellow, no more than 22 - 23 is driving with Arletha in the passenger seat, and the senior man, maybe 25 years old, is in the back wiht me. Then the interrogation starts. I don't think he meant it that way, but Jesus, Mary & Joseph, the number of questions was getting quite tiresome. He got my entire life history. We arrived at the Desert Springs Hospital in sunny Las Vegas at around 2:00 pm. I am placed in Station #10 and told that a doctor will be with us shortly. In the interim, I tell Arletha to call the travel insurance company and apprise them of the situation. Long story about that, but that is for another time. Male nurse takes all of the vitals, doctor arrives and completes an assessment and orders a chest X Ray, which is done bedside. This is followed by a CT Scan that I am wheeled away for. In the end they decide I have pneumonia and put me on IV antibiotics. At this point I am still thinking I may get out, but nooooo. We are going to have to admit you they say, you are too sick to be out. How long will I be here, a day or two they say....Crap! We don't have a bed available yet, so you will have to stay in ER until a bed opens up.....Crap!
With me in the hospital, Arletha, my dear wife who has never lived in, and has no desire to ever live in, a big city, is now going to have to return to the airport, retrieve our luggage, secure the rental car and check into the hotel. This may be old hat for some travellers, but as I mentioned before, Arletha and I had only travelled once before, and I looked after all of that. Although she did her best to hide it, my heart ached for her as I knew the fear and trepidation she had as we kissed good bye and she headed out to get a cab at about 7:00 pm. By 10:00 the ER is starting to get busy. This is the closest hospital to the world famous Las Vegas strip and thus as the evening progresses more and more inebriated people are coming in with various afflcitions and injuries. Lot of blood, lots of drug over doses, a truly horrific and unending horror movie which I could not turn off. By 2:00 am I am ready to say the heck with it and get myself out of there. Unfortunately I am trapped. So I lay there, listened to the endless harmony of all of the medical alarms going off, watched as the fellow who came in passed out and was placed in the bed next to me woke up and pulled out his IV and started to bleed everywhere, listened to the old lady two beds down call out every 10 minutes or so telling anyone who could hear her that she was in pain. It was the longest night of my life. At 9:30 am on Sunday, I was wheeled upstairs to a ward and given a bed. Even though I still really wanted to get out of the hospital, I have to admit that getting into a real bed and getting some peace and quiet to go to sleep was blissful. Little did I know that the blissful feeling was to be short lived.
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