So, three weeks ago our heart failure clinic "flipped the switch" and designated Joe as a 1B category on the heart transplant "list". When they "flipped the switch" they seemed to have also flipped our emotional roller coaster to the "on" mode once again.
Things have been different since our crisis in May. Joe has now inherited a "fear of the machine". I can't blame him at all. When you go through this in January and in May you get a "total equipment failure", are a hairsbreadth from death and somehow miraculously make it through once again, only to find out that you suffered some small strokes while you were comatose for weeks on end, lose the ability of your kidneys to function, miraculously get them working again....Well you can imagine your "faith in the machine" gets shaken a bit (understatement). I don't believe that I will see the personality, that I love so much, again until after he is blessed with a transplant.
And for me, the "wingman", life has been pretty strange. I've been pretty much left to my own wills especially in the past few weeks. That's so different for me. I have a family that interrupts my life constantly (just kidding) - but for the last seven months I have seen them for maybe 3 days at a time 3 times, and my parents (whom we would both do anything for) we haven't seen in almost a year. For someone who relishes watching her grandchildren grow, visiting her parents frequently, and loving see my children do what they do this has been the hardest thing. I have virtually "replaced" my family and friends with people who actually can understand what you're going through and cannot only sympathize but empathize. It's not like I have control over this situation - which is another thing that is completely foreign to me - I was always in control, master of my own fate, keeper of the flame, and now it seems my head is spinning all the time.
It's even gotten so bad that I have a bit of writer's block ... (I apologize to those who follow our blog and promise I'll get my shi# together again soon) ... Those that know me, personally, know I am never short of words. I feel an obligation to continue the story of our time and to continue to educate this society of LVADers and Transplanters that we have all formed as to what the "techys" and the medical people just don't tell you. There's so much, maybe that's why my head is spinning constantly. Just when we get a handle on the LVAD information we have to switch gears and do the transplant research in an effort to understand everything that is happening, that will happen and what to expect for the rest of our lives, and make sure all of our ducks are in a row for in the event that we should get lucky enough to get that far.
So after I started this chapter of our blog, and I procrastinated about how to finish this chapter, we got the news Monday that Joe is now 1A on the transplant list. The elusive 1A status - the one that everyone who is waiting for a transplant longs for, and for the next 30 days it is ours and ours alone. Since it just barely happened it seems like a long time and then you stop and panic and think 4 days have already passed. In the blink of an eye we will either "get the call" or pass by our 30 days and start again at 1B. When we heard the news we just stared at each other and then I cried and couldn't stop crying. It was such a mixture of emotions, elation at being at the top and the realization that it has only been two months since they had to open his body during the crisis and only three months before that, that they opened him up the first time to put this new and exciting medical wonder into him to save his life. Facing another life altering surgery so soon is quite a scary endeavor. But I have to believe that this will end up okay - that Joe will have the life that he longs for back again. And we can begin life all over again. That would be the ultimate "red letter day".
As I've said before we have no choice but to sit down, shut up and be ready for the ride of your life once again.
Hey FATES, we're ready, let's get it on!!!!!!!!!!
There are approximately 3,000 people waiting for a heart transplant PER
DAY. Approximately 2,000 people PER YEAR get that transplant.
I have included a few helpful links to transplant sites....I will add more as I find them.
What to expect before a transplant
What to expect during a transplant
What to expect after a transplant
The Clinic's view on transplant (Cleveland Clinic)
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| Joe and Jenny Smith at the VA Hospital - Hi everybody! |
And for me, the "wingman", life has been pretty strange. I've been pretty much left to my own wills especially in the past few weeks. That's so different for me. I have a family that interrupts my life constantly (just kidding) - but for the last seven months I have seen them for maybe 3 days at a time 3 times, and my parents (whom we would both do anything for) we haven't seen in almost a year. For someone who relishes watching her grandchildren grow, visiting her parents frequently, and loving see my children do what they do this has been the hardest thing. I have virtually "replaced" my family and friends with people who actually can understand what you're going through and cannot only sympathize but empathize. It's not like I have control over this situation - which is another thing that is completely foreign to me - I was always in control, master of my own fate, keeper of the flame, and now it seems my head is spinning all the time.
It's even gotten so bad that I have a bit of writer's block ... (I apologize to those who follow our blog and promise I'll get my shi# together again soon) ... Those that know me, personally, know I am never short of words. I feel an obligation to continue the story of our time and to continue to educate this society of LVADers and Transplanters that we have all formed as to what the "techys" and the medical people just don't tell you. There's so much, maybe that's why my head is spinning constantly. Just when we get a handle on the LVAD information we have to switch gears and do the transplant research in an effort to understand everything that is happening, that will happen and what to expect for the rest of our lives, and make sure all of our ducks are in a row for in the event that we should get lucky enough to get that far.
So after I started this chapter of our blog, and I procrastinated about how to finish this chapter, we got the news Monday that Joe is now 1A on the transplant list. The elusive 1A status - the one that everyone who is waiting for a transplant longs for, and for the next 30 days it is ours and ours alone. Since it just barely happened it seems like a long time and then you stop and panic and think 4 days have already passed. In the blink of an eye we will either "get the call" or pass by our 30 days and start again at 1B. When we heard the news we just stared at each other and then I cried and couldn't stop crying. It was such a mixture of emotions, elation at being at the top and the realization that it has only been two months since they had to open his body during the crisis and only three months before that, that they opened him up the first time to put this new and exciting medical wonder into him to save his life. Facing another life altering surgery so soon is quite a scary endeavor. But I have to believe that this will end up okay - that Joe will have the life that he longs for back again. And we can begin life all over again. That would be the ultimate "red letter day".
As I've said before we have no choice but to sit down, shut up and be ready for the ride of your life once again.
Hey FATES, we're ready, let's get it on!!!!!!!!!!
There are approximately 3,000 people waiting for a heart transplant PER
DAY. Approximately 2,000 people PER YEAR get that transplant.
I have included a few helpful links to transplant sites....I will add more as I find them.
What to expect before a transplant
What to expect during a transplant
What to expect after a transplant
The Clinic's view on transplant (Cleveland Clinic)
Jenny be quiet????Never gonna happen.You and Joe are always in my prayers and thoughts.I am blessed to have you both as my friends as we go through this journey.Joe is one lucky man to have you at his side.Love you Both,,Bo
ReplyDeleteHey! Hey! I can comment now (different computer) but can't see the wonderful pictures I'm sure you put up :) Oh well... So I agree 100% with what the person above me wrote including the you be quiet part hehe! I have so much more faith now, than I did a few months back. And I credit it all on Daddy Joe and his miracle! I don't know what I would have done if he hadn't made it and I lost 2 dad's in the same month!! But that said I am 100% sure that when his new heart gets to him that everything will work out and we all can look back in a year or so and say "WOW what a ride!"
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