At 12:40 am today we received the much anticipated call. Kathy, from the UW transplant team called to say that there is a young donor who Dr. Mulligan, the surgeon, believes has the perfect lungs for Clay. While we didn't get all the info we would like, Kathy said that it is anticipated that Clay will receive one lung and someone else will receive the other.
Our instructions at this point is to be at the hospital by 4 PM, Clay will get checked in, and the surgery won't begin until sometime late this evening or tonite. We do know that the donor is not here is Seattle but that Dr. Mulligan will be flying where ever. Kathy is not at liberty to let us know the location, only that it is not here in Seattle.
That is all the info we have for now. I will keep you all informed as much as I can along the way. Keep those prayers coming!
Thursday, January 20, 2011
Tuesday, January 11, 2011
Day 20 - After the Support Group Meeting
As I said, we always gets lots of good info at our monthly support group meetings. And today did not disappoint. There were about 27 people there, made up of post and pre transplant people along with caregivers and supporters.
First for the stats I was looking for; last year there were 52 lung transplants. The most they have done in a single year is 53. So last year was great, they averaged one per week.
And the fun thing was that both the woman who had the 1st transplant of 2010 was there as was the man who came in at #52! He had his transplant on December 22nd and up until he said that I would never have guessed it. He looked like someone who was there supporting someone else, I was truly surprised. Obviously, he is doing very well.
There were several post transplant folks there, several of us pre people, on the list and waiting, and a few people who are in the process of getting onto the list. Currently, there are 40 of us on the list, waiting for the appropriate donor to provide the gift of life.
All of our meetings involve sharing experiences, concerns, and lessons learned from each aspect of our individual, and shared, experiences. We boost the morale of those who are feeling beaten down by the process of waiting, either by the advice of those who are now post transplant, or by those of us who have battled that same demon in the past and found a way to get past it, at least for the moment.
Several months ago I was so discouraged myself that I told Clay I wasn't going to go to another support group, that we have attended enough already, I just wanted this process to end. And as I was explaining to a woman today, it really doesn't matter if you decide to have a hissy-fit or not, it doesn't change anything, the wait doesn't suddenly end, the call doesn't miraculously come because you've had enough.
And then she said something that I have said so many times myself, that part of my "lesson" out of all this is to be forced to learn patience. And I explained to her how I had actually entertained that thought for a number of years myself. I do believe that there are lessons to be learned in everything we experience. But there came a time when I just had to finally admit learning patience thru this process is just hogwash! I'm no more patient today than I was 9 years ago! I'm being forced, and the key word here is "forced," to tolerate this process - because I have no choice - but I certainly am not patient with it.
Patience would denote some type of acceptance, an understanding, a feeling of peace, and let me state right now that I have none of that! The person who has evolved enough to gain patience and acceptance from this process is someone I have yet to grow into. I feel that I have been forced to learn tolerance, not patience, of a situation I cannot change, control, or escape. We will ride this thru to the end , regardless of the outcome, but I'm not seeing any sign of "acceptance" here.
What these meetings do is to remind each of us that we are all dealing with the same issues, we ride our own private roller coasters but we have the same highs and lows. And we hopefully get to be one of those people who gets to come back to the group as a "post" and tell all the "pre" people to maintain their hope, that when all the waiting is behind them that it will seem like just a blink of an eye, that it will all be worth it. Which is what we hear also at each meeting, and that continues to give us hope. Today did not fail either.
The last stat that I was looking for was to find out how many, if any, transplants have occurred this year so far. We always like know that surgeries are happening even if it isn't us on the table, ya know? It means that we are getting that much closer. At the beginning of the meeting we were told there have been no transplants. Midway thru the meeting however, we learned that one of the "pre" people from the group actually was being taken into the operating right then for his transplant! How exciting! The only way it could have been better is if it had been us. But hey, we're that much closer now, right?
First for the stats I was looking for; last year there were 52 lung transplants. The most they have done in a single year is 53. So last year was great, they averaged one per week.
And the fun thing was that both the woman who had the 1st transplant of 2010 was there as was the man who came in at #52! He had his transplant on December 22nd and up until he said that I would never have guessed it. He looked like someone who was there supporting someone else, I was truly surprised. Obviously, he is doing very well.
There were several post transplant folks there, several of us pre people, on the list and waiting, and a few people who are in the process of getting onto the list. Currently, there are 40 of us on the list, waiting for the appropriate donor to provide the gift of life.
All of our meetings involve sharing experiences, concerns, and lessons learned from each aspect of our individual, and shared, experiences. We boost the morale of those who are feeling beaten down by the process of waiting, either by the advice of those who are now post transplant, or by those of us who have battled that same demon in the past and found a way to get past it, at least for the moment.
Several months ago I was so discouraged myself that I told Clay I wasn't going to go to another support group, that we have attended enough already, I just wanted this process to end. And as I was explaining to a woman today, it really doesn't matter if you decide to have a hissy-fit or not, it doesn't change anything, the wait doesn't suddenly end, the call doesn't miraculously come because you've had enough.
And then she said something that I have said so many times myself, that part of my "lesson" out of all this is to be forced to learn patience. And I explained to her how I had actually entertained that thought for a number of years myself. I do believe that there are lessons to be learned in everything we experience. But there came a time when I just had to finally admit learning patience thru this process is just hogwash! I'm no more patient today than I was 9 years ago! I'm being forced, and the key word here is "forced," to tolerate this process - because I have no choice - but I certainly am not patient with it.
Patience would denote some type of acceptance, an understanding, a feeling of peace, and let me state right now that I have none of that! The person who has evolved enough to gain patience and acceptance from this process is someone I have yet to grow into. I feel that I have been forced to learn tolerance, not patience, of a situation I cannot change, control, or escape. We will ride this thru to the end , regardless of the outcome, but I'm not seeing any sign of "acceptance" here.
What these meetings do is to remind each of us that we are all dealing with the same issues, we ride our own private roller coasters but we have the same highs and lows. And we hopefully get to be one of those people who gets to come back to the group as a "post" and tell all the "pre" people to maintain their hope, that when all the waiting is behind them that it will seem like just a blink of an eye, that it will all be worth it. Which is what we hear also at each meeting, and that continues to give us hope. Today did not fail either.
The last stat that I was looking for was to find out how many, if any, transplants have occurred this year so far. We always like know that surgeries are happening even if it isn't us on the table, ya know? It means that we are getting that much closer. At the beginning of the meeting we were told there have been no transplants. Midway thru the meeting however, we learned that one of the "pre" people from the group actually was being taken into the operating right then for his transplant! How exciting! The only way it could have been better is if it had been us. But hey, we're that much closer now, right?
Sunday, January 9, 2011
Day 18 on the List
Nope, no phone call as yet. Hear us drumming our fingers on the table? You should, it sounds that loud - to us.
Clay hasn't been feeling very well this week. He's done battle with one of those irritating viruses going around; something like a cold that seemed to be building but doesn't actually go anywhere other making the person feel achy, weak, and tired. He's feeling better today though, not totally over it, but says the achy feeling has gone. He's laying low to ensure that he's on the mend.
Good news about his weight - it continues to move in the right direction, as of this morning he weighed in at 218. Max weight for listing was 230 with a BMI of 30. Remember the surgeon explained that studies are showing people with a BMI of 28, rather than 30, do even better? He assured us Clay is fine to be listed (which he was just a day or two later) but encouraged him to do what he could to continue to bring his weight down. A BMI of 28 for Clay equates to a weight of 215 lbs. When we heard that number we both felt a little weak in the knees sine it was about 10 lbs less than where he was at that time. We all know how hard it is to loose 10 lbs. I've been trying to do for about 5 yrs now with no success. But hey! It's only 3 lbs away at this point so everything continues to look good for a successful transplant.
If you read my previous blog you know that I was able to track the actual number transplants; how many had occurred each month and for that year. Those stats aren't available to me anymore. Not because they are a secret but because the person who maintained the website passed away and the person who picked it up doesn't do it the same. But the best we can figure out is that there were 53 transplants at the UW Medical Center in 2010. Which has been about the average for the last several years, the highest being 55 early in 2000 (I think).
I will attempt to find out more exact numbers (not necessarily because any of you are interested but because I personally like stats and this way I will have that info for myself). The monthly support group is this coming week so I should have more info after that.
Keep your positive thoughts coming this way. And please, everyone, just think about - consider - being an organ donor. If you aren't comfortable being one then don't, but if you feel that it could be the right thing for you then please make sure your driver's license marks you as a donor. And please, discuss your choice with family and friends, let everyone around you know that should something horrible happen and your life is cut short, you want to donate life to anyone else that can benefit from an organ donation.
Talk to you all soon!
Clay hasn't been feeling very well this week. He's done battle with one of those irritating viruses going around; something like a cold that seemed to be building but doesn't actually go anywhere other making the person feel achy, weak, and tired. He's feeling better today though, not totally over it, but says the achy feeling has gone. He's laying low to ensure that he's on the mend.
Good news about his weight - it continues to move in the right direction, as of this morning he weighed in at 218. Max weight for listing was 230 with a BMI of 30. Remember the surgeon explained that studies are showing people with a BMI of 28, rather than 30, do even better? He assured us Clay is fine to be listed (which he was just a day or two later) but encouraged him to do what he could to continue to bring his weight down. A BMI of 28 for Clay equates to a weight of 215 lbs. When we heard that number we both felt a little weak in the knees sine it was about 10 lbs less than where he was at that time. We all know how hard it is to loose 10 lbs. I've been trying to do for about 5 yrs now with no success. But hey! It's only 3 lbs away at this point so everything continues to look good for a successful transplant.
If you read my previous blog you know that I was able to track the actual number transplants; how many had occurred each month and for that year. Those stats aren't available to me anymore. Not because they are a secret but because the person who maintained the website passed away and the person who picked it up doesn't do it the same. But the best we can figure out is that there were 53 transplants at the UW Medical Center in 2010. Which has been about the average for the last several years, the highest being 55 early in 2000 (I think).
I will attempt to find out more exact numbers (not necessarily because any of you are interested but because I personally like stats and this way I will have that info for myself). The monthly support group is this coming week so I should have more info after that.
Keep your positive thoughts coming this way. And please, everyone, just think about - consider - being an organ donor. If you aren't comfortable being one then don't, but if you feel that it could be the right thing for you then please make sure your driver's license marks you as a donor. And please, discuss your choice with family and friends, let everyone around you know that should something horrible happen and your life is cut short, you want to donate life to anyone else that can benefit from an organ donation.
Talk to you all soon!
Saturday, January 1, 2011
Happy New Year 2011
We are feeling so excited and encouraged that 2011 will bring a new set of lungs for Claiborne! He was officially re-listed on 12/23/10, we even received actual listing in writing by certified mail yesterday. What a great way to leave 2010 behind and embrace the wonderful possibilities of 2011.
As I write today we are on day 10. People who are waiting on these lists count first the days, then weeks, moving into months, and unfortunately into years. Last time, as I said, it was 14 months. And again, we don't have 14 months this time to wait.
Let me remind those of you who have traveled this road with us, and explain for those who are new, being on the "list" is not like going to the DMV and pulling a number out of the slot to let you know when your turn will come. You can't sit with number 75 in your hand and watch the number board slowly creep upwards toward your number.
Envision this (I'm very visual so I try to write in those terms for others); those who are fortunate enough to make the "list" get permission to enter this imaginary room where everyone just wonders around waiting to be called. No numbers, no line in which one can see themselves moving forward toward the surgery room. The order in which names are called are dependent on a scoring based on disease, current condition, blood type, lung size, etc. It can get very complicated as I said in my last blog. And we do know that this time Clay is in the top third of the list, given his current condition.
On 12/29 Clay had the right heart catherization done. Went absolutely smoothly. Only issue was the cath lab was backed up, we got there on time but has to wait about an hour before they could take Clay in.
The right heart cath is much easier than the left heart, which Clay has also done. The left heart is done by snaking a tube from the femoral artery requiring 6 hours (or so) laying completely flat and still before a person can be released to go home. The right heart is done using the jugular vein, takes about 20 actual minutes of procedure (the pre and post time adds another hour) and allows the person to be released promptly. Hurrah! I didn't even get through a whole magazine I had brought.
So all the tests are done, all details completed, Clay is on the list (nationwide, by the way), and now we watch Clay's weight and wait for that all important call. And let me add here, after the entire battery of tests that have been done on him, it appears that Clay is in extremely good health other than this bumm set of lungs he continues to carry around.
I encourage anyone who would like to respond to this blog to do so, Clay would love to hear your responses. With the last blog I didn't have the right settings marked but I think I have corrected that now. If not, please let me know by email.
So Happy New Year to everyone who continue to send us positive thoughts and I will let you know as we continue on our way.
As I write today we are on day 10. People who are waiting on these lists count first the days, then weeks, moving into months, and unfortunately into years. Last time, as I said, it was 14 months. And again, we don't have 14 months this time to wait.
Let me remind those of you who have traveled this road with us, and explain for those who are new, being on the "list" is not like going to the DMV and pulling a number out of the slot to let you know when your turn will come. You can't sit with number 75 in your hand and watch the number board slowly creep upwards toward your number.
Envision this (I'm very visual so I try to write in those terms for others); those who are fortunate enough to make the "list" get permission to enter this imaginary room where everyone just wonders around waiting to be called. No numbers, no line in which one can see themselves moving forward toward the surgery room. The order in which names are called are dependent on a scoring based on disease, current condition, blood type, lung size, etc. It can get very complicated as I said in my last blog. And we do know that this time Clay is in the top third of the list, given his current condition.
On 12/29 Clay had the right heart catherization done. Went absolutely smoothly. Only issue was the cath lab was backed up, we got there on time but has to wait about an hour before they could take Clay in.
The right heart cath is much easier than the left heart, which Clay has also done. The left heart is done by snaking a tube from the femoral artery requiring 6 hours (or so) laying completely flat and still before a person can be released to go home. The right heart is done using the jugular vein, takes about 20 actual minutes of procedure (the pre and post time adds another hour) and allows the person to be released promptly. Hurrah! I didn't even get through a whole magazine I had brought.
So all the tests are done, all details completed, Clay is on the list (nationwide, by the way), and now we watch Clay's weight and wait for that all important call. And let me add here, after the entire battery of tests that have been done on him, it appears that Clay is in extremely good health other than this bumm set of lungs he continues to carry around.
I encourage anyone who would like to respond to this blog to do so, Clay would love to hear your responses. With the last blog I didn't have the right settings marked but I think I have corrected that now. If not, please let me know by email.
So Happy New Year to everyone who continue to send us positive thoughts and I will let you know as we continue on our way.
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