I'm not going to even try to catch up in one post. It has been quite a while and lots has happened. I'll start with the most recent since I can remember that the best.
Yesterday morning I attended my first kettle ball class. I have been "active" over the last couple years and figured I was ready for a greater challenge. I was trying my best to keep up but there were times I just had to rest or catch my breath. Making things a bit worse pride-wise was the fact that I am the only boy under 60 in the class and that I am next to a grey haired lady who is showing no signs of fatigue. I think yelping would best describe the noise I make when trying to get up, sit down, switch positions or essentially make any movement with my legs today. Apparently my definition of active and reality differ greatly.
Thus begins the road back to a health I have never known. I have both trepidation and anxious excitement as I look to continue to better myself thru exercise. The axiom is "use it or lose it" so this gift I have been granted deserves to be treated well and kept challenged. The heart is a muscle and needs exercise too.
Next class is tomorrow night. I hope my legs feel alot better by then or it is going to be a noisy class!
Remember, the only way to defeat a challenge is to go thru it.
Be good to each other...
JJ
Sunday, January 22, 2012
Sunday, April 4, 2010
The return to Boise!!!!
After 2 weekend trips and several weeks of packing, the final move back to Boise was completed on March 26. I owe a ton of thanx to my wife, family, friends and their families. Without all of them working so hard this would have been a nightmare. I had help from folks from the Salt Lake valley, Boise, Chicago, Portland and Rwanda. That's right! The country in Africa. Three young refugee girls from Rwanda came to help us unload in Boise. They probably did not come to America for that specific purpose, but they were there. They assisted in the unloading and then braided anything that didn't move fast enough, including my beard!
With all the helpers and the 2 pre-move trips we were able to load and unload in under 2 hours on each end of the trip. I played a key role by pointing, directing and encouraging those actually doing the work. My sisters took turns telling me to "put that down!!". I also had to keep track of Steve during the melee. The 5.5 hour drive in the middle went smoothly and we found out that Budget rental trucks have a governor at 90mph (oops).
It has been a week now and we are pretty well settled in, all due to Kitty's tireless work. Friday nite we continued our traditional Good Friday practice. Corn fritters and salmon patties for dinner and egg coloring for desert. We had 13 for dinner including us, and it went very well. I made 40 patties and countless fritters and as usual I put people to work as soon as they arrived. That was the only way to get it all cooked and served in a reasonable amount of time. By the end of the meal I had a very sore back and was pooped but it was well worth it to share this tradition with others. Part of the group was the Rwandan family including Mom and brother with the three girls. They had never had anything like this meal nor colored eggs. It made me think of how different the world is and how common we can make it. Just sharing a meal and some fun activities allowed us to cut through the cultural and language (French & Swahili) barriers.
Happy Easter to all!!!
Be good to each other,
Tin Man
Here is a link to pics from the move and Good Friday.
http://s663.photobucket.com/albums/uu351/jj12316/Move%20and%20good%20Friday/
With all the helpers and the 2 pre-move trips we were able to load and unload in under 2 hours on each end of the trip. I played a key role by pointing, directing and encouraging those actually doing the work. My sisters took turns telling me to "put that down!!". I also had to keep track of Steve during the melee. The 5.5 hour drive in the middle went smoothly and we found out that Budget rental trucks have a governor at 90mph (oops).
It has been a week now and we are pretty well settled in, all due to Kitty's tireless work. Friday nite we continued our traditional Good Friday practice. Corn fritters and salmon patties for dinner and egg coloring for desert. We had 13 for dinner including us, and it went very well. I made 40 patties and countless fritters and as usual I put people to work as soon as they arrived. That was the only way to get it all cooked and served in a reasonable amount of time. By the end of the meal I had a very sore back and was pooped but it was well worth it to share this tradition with others. Part of the group was the Rwandan family including Mom and brother with the three girls. They had never had anything like this meal nor colored eggs. It made me think of how different the world is and how common we can make it. Just sharing a meal and some fun activities allowed us to cut through the cultural and language (French & Swahili) barriers.
Happy Easter to all!!!
Be good to each other,
Tin Man
Here is a link to pics from the move and Good Friday.
http://s663.photobucket.com/albums/uu351/jj12316/Move%20and%20good%20Friday/
Tuesday, January 26, 2010
Why NOT me?!?!?!?
A little background first. I grew up in the Midwest in a pleasant suburb with everything I could want. Great parents, great sibs and most importantly, as a boy, great friends. We did everything together. We played football in the snow and had the Turkey bowl into our late 20s. We played golf, baseball, hockey, basketball and volleyball together. We fished and skied, snowmobiled and traveled. We went through growing pains together and bonded as brothers. The fellas, as we call ourselves, are still in touch with each other, into our 40s, that's not that amazing for a couple-three friends but there are 10 of us. I still look forward to seeing them, now that I can travel again it will be very soon.
Of all of the group, Kevin was the one that we were all drawn to. He had an easy way about him and caused you to smile by infection. He could make losing his wallet, his car conking out and losing a girlfriend, all in the same weekend, look like a fun time. He lived by the mantra I used to say to my staff. "if you're not having fun, it's your own fault". Kevin is loved by all of us, our parents, our families and our kids. He married a great girl he met at college and they have had a great life raising a couple kids, being great friends and spreading that infectious smile around.
While the majority of the group is still in the Midwest, I have travelled west. I started in Illinois with the fellas, moved to Utah, Arizona, Idaho and back to Utah and finally will return to Idaho later this year. The fellas have been able to track me as I moved and we have seen each other at least once a year until I was listed with UNOS 4 years ago. I have done everything to shorten my life and then I go and survive, getting my heart transplant at the last minute. Kevin, on the other hand never gained an ounce and with the exception of thinning hair, looked like he always did. January 5th he was playing video games with the kids, then retires upstairs to his office to work for a little while. A massive heart attack takes him in minutes, he was gone before the EMTs even arrived. The next morning the information starts to spread to the fellas. The afternoon of the 6th, the clouds took over the sky as I was notified of Kevin's passing. The irony played well in my ears for weeks. Why not me, I was always supposed to be the one to go. Kevin had everything to live for and lived his life. We are all alive but Kevin LIVED!!! He did not waste 1 minute of his 44 years on this planet. We will all miss him but we each have wonderful memories to bring us solice. RIP Kevin.
Be good to each other,
Tin Man
Of all of the group, Kevin was the one that we were all drawn to. He had an easy way about him and caused you to smile by infection. He could make losing his wallet, his car conking out and losing a girlfriend, all in the same weekend, look like a fun time. He lived by the mantra I used to say to my staff. "if you're not having fun, it's your own fault". Kevin is loved by all of us, our parents, our families and our kids. He married a great girl he met at college and they have had a great life raising a couple kids, being great friends and spreading that infectious smile around.
While the majority of the group is still in the Midwest, I have travelled west. I started in Illinois with the fellas, moved to Utah, Arizona, Idaho and back to Utah and finally will return to Idaho later this year. The fellas have been able to track me as I moved and we have seen each other at least once a year until I was listed with UNOS 4 years ago. I have done everything to shorten my life and then I go and survive, getting my heart transplant at the last minute. Kevin, on the other hand never gained an ounce and with the exception of thinning hair, looked like he always did. January 5th he was playing video games with the kids, then retires upstairs to his office to work for a little while. A massive heart attack takes him in minutes, he was gone before the EMTs even arrived. The next morning the information starts to spread to the fellas. The afternoon of the 6th, the clouds took over the sky as I was notified of Kevin's passing. The irony played well in my ears for weeks. Why not me, I was always supposed to be the one to go. Kevin had everything to live for and lived his life. We are all alive but Kevin LIVED!!! He did not waste 1 minute of his 44 years on this planet. We will all miss him but we each have wonderful memories to bring us solice. RIP Kevin.
Be good to each other,
Tin Man
Sunday, December 27, 2009
The Christmas Gift
Christmas has now come and gone and this is the first one post transplant. It has been a long road and I finally found out just how far. My wife and I were opening presents from family and friends when I came across a gift from my eldest sister. It was a tin man ornament. It looked sort of old and weathered which confused me at first. With this gift was a note which reads
"I made this ornament when my first born was a baby, so it's about 35 yrs old. Who'd have ever thought it would carry such significance in our family after all these years! It's so wonderful that your wish 'If I only had a heart' has finally come true, tho like the original tin man, we all know you have had the biggest heart - in your spirit and how you live your life. You, Baby Brother, will always be an inspiration to me."
After a short bout of tears, my wife and I looked at each other with the same expression on our faces. The look of understanding, just a bit better, than we had before. The second chance I have been granted is only worth what I make it. My transplant experience has been less than my favorite thus far and I have found myself on the pity train more than once. Support like this gives me the strength to work at my recovery and understanding that this gift has effected more than just me makes it all the more precious.
Be good to each other,
Tin Man
"I made this ornament when my first born was a baby, so it's about 35 yrs old. Who'd have ever thought it would carry such significance in our family after all these years! It's so wonderful that your wish 'If I only had a heart' has finally come true, tho like the original tin man, we all know you have had the biggest heart - in your spirit and how you live your life. You, Baby Brother, will always be an inspiration to me."
After a short bout of tears, my wife and I looked at each other with the same expression on our faces. The look of understanding, just a bit better, than we had before. The second chance I have been granted is only worth what I make it. My transplant experience has been less than my favorite thus far and I have found myself on the pity train more than once. Support like this gives me the strength to work at my recovery and understanding that this gift has effected more than just me makes it all the more precious.
Be good to each other,
Tin Man
Saturday, November 7, 2009
Don't Let Wellness Get in the Way
The transplant process is a double edged sword. Each side has its protocol to provide the best opportunity for success. Each case is unique and there are no guarantees or absolutes but these guidelines are based on past experiences. On the front side of transplant, one should stay as healthy as possible and follow all the directions regarding meds, diet and appointments provided by the transplant team.
On the post side of transplant there is a much different group of meds and a whole new protocol. Your opportunity to recover is very realistic, no matter how impossible it may seem. Even though there are new "issues" to deal with, such as diabetes, insulin, odd side effects, changes in long practiced habits like Caffeine, or even favorite foods. As you continue to "stay within the lines" with the visits, meds, exercise and diet, you will notice things getting better and easier. The word normal starts to show itself in the distance but it is spelled differently or in a new font. This will become the "New Normal" .
Maintaining your new reality and health is a new challenge that will require consistent adherence to change. That may sound like an oxymoron, but it is a good way of describing it. As you get further from the transplant date things will be changing. With your new organ functioning properly your meds may be reduced, some side effects will subside, you begin to feel better, appointments become less frequent and meds are reduced. This is, by no means, the time to relax any of the needed routines that remain. There are meds you will be on for the rest of your life and taking them exactly as prescribed is as important on day 4000 as it was on day 4 post transplant. The same goes for the dietary and exercise regimens. You need to maintain vigilance to continue to enjoy the second chance you have been granted. Never become complacent with your success.
Be good to each other,
Tin Man
On the post side of transplant there is a much different group of meds and a whole new protocol. Your opportunity to recover is very realistic, no matter how impossible it may seem. Even though there are new "issues" to deal with, such as diabetes, insulin, odd side effects, changes in long practiced habits like Caffeine, or even favorite foods. As you continue to "stay within the lines" with the visits, meds, exercise and diet, you will notice things getting better and easier. The word normal starts to show itself in the distance but it is spelled differently or in a new font. This will become the "New Normal" .
Maintaining your new reality and health is a new challenge that will require consistent adherence to change. That may sound like an oxymoron, but it is a good way of describing it. As you get further from the transplant date things will be changing. With your new organ functioning properly your meds may be reduced, some side effects will subside, you begin to feel better, appointments become less frequent and meds are reduced. This is, by no means, the time to relax any of the needed routines that remain. There are meds you will be on for the rest of your life and taking them exactly as prescribed is as important on day 4000 as it was on day 4 post transplant. The same goes for the dietary and exercise regimens. You need to maintain vigilance to continue to enjoy the second chance you have been granted. Never become complacent with your success.
Be good to each other,
Tin Man
Saturday, August 1, 2009
Kuala Lumpur?
Whilst whiling away the hours in my forced sedation, the city of Kuala Lumpur kept coming up in my dreams. To answer the obvious, I have never been there or even to that hemisphere yet the city was prominent and recurring in my dreams.
After waking I asked my wife a few questions about what was "real" and what was not. Questions like "are we in Kuala Lumpur?", "did I get arrested in Kuala Lumpur for running stolen boats?" Was I at a rehab facility in Kuala Lumpur where I wass recouping from my injuries?" "Why was I in Kuala Lumpur with family members and what were they eating on the beach?" Was I stuck in an Italian restaurant in , you guessed it, Kuala Lumpur, waiting for the owners to finish up their wine ????"""
All of this was dream but I did not understand the reason for the common thread of Kuala Lumpur. When I was finally moved to the tele floor, I recognized my nurse's name since she had been my nurse on previous occasions. My wife happened to ask her where she was from since her name was so unusual. Hold onto your hat…. She grew up in Malaysia, where one would find Kuala Lumpur. I got a chill that lasted the next couple days….
Be good to each other,
JJ
After waking I asked my wife a few questions about what was "real" and what was not. Questions like "are we in Kuala Lumpur?", "did I get arrested in Kuala Lumpur for running stolen boats?" Was I at a rehab facility in Kuala Lumpur where I wass recouping from my injuries?" "Why was I in Kuala Lumpur with family members and what were they eating on the beach?" Was I stuck in an Italian restaurant in , you guessed it, Kuala Lumpur, waiting for the owners to finish up their wine ????"""
All of this was dream but I did not understand the reason for the common thread of Kuala Lumpur. When I was finally moved to the tele floor, I recognized my nurse's name since she had been my nurse on previous occasions. My wife happened to ask her where she was from since her name was so unusual. Hold onto your hat…. She grew up in Malaysia, where one would find Kuala Lumpur. I got a chill that lasted the next couple days….
Be good to each other,
JJ
And there was much rejoicing…..
In my last entry I had just received the call notifying me that a match had been found for my needed heart. Well, suffice to say, things went well and I am now the recipient of the greatest gift. A second chance.. The surgeries went off like clock work and I was placed in a state of sedation for some 14 days to keep me safe from myself. My family made trip after trip to see me awake but most of them still did not get to.
I wanted to take this opportunity to thank everyone for their thoughts, prayers and well wishes. It is thru your strength and support that any of this is possible.
I especially want to thank my family members for the support they provided my wife and the great attitude that carried them all thru this.
Finally, I would like to thank the donor, whomever you are. None of this happens if that person does not live in charity and as a registered donor. I have truly been blessed with a miracle.
Be good to each other,
JJ
I wanted to take this opportunity to thank everyone for their thoughts, prayers and well wishes. It is thru your strength and support that any of this is possible.
I especially want to thank my family members for the support they provided my wife and the great attitude that carried them all thru this.
Finally, I would like to thank the donor, whomever you are. None of this happens if that person does not live in charity and as a registered donor. I have truly been blessed with a miracle.
Be good to each other,
JJ
Subscribe to:
Posts (Atom)
