It has been over a week and a half since I found out I could not be a donor for Lonnie. Although I am still incredibly disappointed, I continue to have a tremendous amount of faith that a donor will be found. There has been some talk of some of Ginger's relatives getting tested and I am just praying that will happen. The more testing that is done, the more likely the chances of getting a living donor. In the meantime he will wait on the list. The list is such a bittersweet one -- knowing that someone had to die to give life is always a sad thought. But I am so incredibly proud of every person who makes the decision to be a donor before death and of every family who carries out the deceased person's wishes after they die. Earlier this year my friends Chris and Carol lost their dear son Brent. Brent was a 10 year old who was a polite and friendly kid and it tore us all apart to think that Brent was gone forever. But even amongst their grief Chris and Carol made the painful decision to donate Brent's organs. Brent died, but in return others could live. I think that is pretty incredible.
As far as the "Hope For Lonnie" bracelets, the response has been overwhelming! Thank you to everyone who has bought one from Kellie, Janel, or I -- or from anyone else who has so graciously offered to sell them for us. Thanks to all of your support, Lonnie and Ginger will not have to worry about their expenses around the time of the transplant. Kellie has started an account at Bullseye Credit Union where she works and it already has a very nice nest egg! I need to take the time to publicly thank my dear friend Jolene who was my "business partner" in the bracelet endeavor. I couldn't have done it without you Jolene! And to anyone who still would like a bracelet, please let one of us know.
Several people have asked me if I would consider being a donor for someone else now that I cannot do it for Lonnie. I have to admit that it would be very difficult to say no now that I see the incredible need for donors out there. But I do want to be sure Lonnie gets taken care of as well. So I will just wait and see if anything comes my way for now. All I can do is pray about it, right??
Friday, September 10, 2010
Tuesday, August 31, 2010
God's Plans Are Not Always Our Own
Chris called today at 5:00. The committee that reviews the genetic markers and blood testing met at 3:00 today to discuss our case. The lab has been spending time doing extensive testing on the DQ7 genetic marker of mine which seemed to be incompatible with Lonnie's antibodies. After reviewing all of the results, along with our case, UW has decided that it would just be too risky to transplant my kidney into Lonnie. The risk of rejection is too high and Chris says that rejection in Lonnie, due to his age and vascular issues, could be a disaster. They have also decided that the desensitization process in him would also be just too dangerous. That was devastating news for me to hear, but I am so thankful that UW does this extensive testing. As I said before, other hospitals do not test for this and rejection would be almost certain if they moved forward.
So...what does this mean for Lonnie? Well, all it truly means is that he cannot have MY kidney. It does NOT, however, preclude him from receiving any other kidney that might be available. There is still the option of another living donor and he will also stay on the list to receive a kidney from a deceased donor. And the good news is that he has already built up quite a bit of time on that list as UW never dropped him when he originally was transferred to Froedtert. In fact, he has almost 2 years of time built up. That is good news as the average wait time is between 2 and 3 years on the list. The other option is a process that is called paired donation. This means that if another donor/recipient pair were to be rejected they can compare our bloodwork with theirs. If a match was found, I could then donate to that recipient and their donor could give to Lonnie! Amazing, isn't it? I had to decide whether to consent to this today, which I certainly did. Chris told me that finding those people is sort of like finding a needle in a haystack, but it certainly does happen.
On a happier note, the bracelets we have for sale are flying out of our hands. We have raised quite a bit of money so far and will continue to do so. Lonnie will still need a transplant and the expenses will still add up. Now more than ever the phrase on the bracelet, "Hope For Lonnie", is certainly true.
A sad time indeed, but it still is not the end of the road! Lonnie and his family will never leave my life and I will never leave theirs. We have a bond that cannot be broken. And if a paired donor situation should arise that UW determines will be good for us -- I will be there! And if Lonnie ends up with a transplant from a deceased donor -- I will be there cheering him on! I just ask you to pray for Lonnie and Ginger tonight and for their whole family. He is the one who is sick -- not me -- and our goal is get him well soon so he can enjoy life the way it is meant to be enjoyed!
And to Lonnie and Ginger -- "Never stop believing, hoping, and praying. That is what has brought us this far. I love ya!!"
So...what does this mean for Lonnie? Well, all it truly means is that he cannot have MY kidney. It does NOT, however, preclude him from receiving any other kidney that might be available. There is still the option of another living donor and he will also stay on the list to receive a kidney from a deceased donor. And the good news is that he has already built up quite a bit of time on that list as UW never dropped him when he originally was transferred to Froedtert. In fact, he has almost 2 years of time built up. That is good news as the average wait time is between 2 and 3 years on the list. The other option is a process that is called paired donation. This means that if another donor/recipient pair were to be rejected they can compare our bloodwork with theirs. If a match was found, I could then donate to that recipient and their donor could give to Lonnie! Amazing, isn't it? I had to decide whether to consent to this today, which I certainly did. Chris told me that finding those people is sort of like finding a needle in a haystack, but it certainly does happen.
On a happier note, the bracelets we have for sale are flying out of our hands. We have raised quite a bit of money so far and will continue to do so. Lonnie will still need a transplant and the expenses will still add up. Now more than ever the phrase on the bracelet, "Hope For Lonnie", is certainly true.
A sad time indeed, but it still is not the end of the road! Lonnie and his family will never leave my life and I will never leave theirs. We have a bond that cannot be broken. And if a paired donor situation should arise that UW determines will be good for us -- I will be there! And if Lonnie ends up with a transplant from a deceased donor -- I will be there cheering him on! I just ask you to pray for Lonnie and Ginger tonight and for their whole family. He is the one who is sick -- not me -- and our goal is get him well soon so he can enjoy life the way it is meant to be enjoyed!
And to Lonnie and Ginger -- "Never stop believing, hoping, and praying. That is what has brought us this far. I love ya!!"
Tuesday, August 24, 2010
The Waiting Continues...
Chris called me from UW this afternoon around 5:00. She explained that the lab has to do further testing on my blood to determine whether or not this DQ gene is going to be an issue. Apparently the lab is taking me out of the freezer(or at least my blood!) and running more tests in the next couple of days. There are two different variants of the gene that I could potentially have -- if I have the first variant, it is not a problem and we could proceed with the transplant process as planned. The second variant however could pose a problem. Chris explained that this genetic testing is really quite recent. Just a few years ago it was not even known that this gene could cause problems. But now through the miracles of modern medicine, not only have they identified the gene, but they have found a way to help decrease the odds of rejection due to the mismatch. So, if this second variant does indeed exist we will have to consider the desensitization process. Desensitization will make it less likely that Lonnie will reject my kidney, however the rate would still be 25-35% higher than if this genetic variant did not exist(that rate is for UW, the national rate is more like 40-60%). However, without desensitization the rejection rate would most likely be 100%! Just think, before they knew about this gene there were rejections that occurred that possibly could have been avoided. The desensitization process would consist of Lonnie visiting UW 3 times per week for a week or two prior to surgery to have plasmapheresis -- a blood filtering process that would remove the antibodies from his system that would likely attack the foreign kidney. So it would add trips to Madison, along with the knowledge that rejection would be more likely than it would be without the variant. So Chris told me I need to consider that as well. But as I have told Lonnie and Ginger before, I am here for the long haul! And as Chris said tonight -- there are just no guarantees in transplant surgery! Even a "perfect transplant" can be rejected. So now we wait...again! Chris hoped to maybe have answers from the lab by Friday.
Tonight Lonnie and Ginger's daughters Kellie and Janel met me at their house around 5:30 p.m. Lonnie and Ginger thought we just all "happened" to stop by to visit. But in reality we were there to tell them about the bracelets. After giving them each one I broke the news to them that we were selling the bracelets and all of the money would go towards their expenses for the transplant. They got emotional, as I think we all did! They are extremely grateful to everyone for purchasing and wearing the bracelets. Kellie's son Riley immediately took several and went around the neighborhood selling them. Within about 1/2 hour he had sold a dozen! I think he might be in the running for "Salesman of the Month"!
You may have noticed my updated picture. My friend Jolene mentioned to me that she thought everyone needed to see a picture of Lonnie -- so here it is! The picture is from tonight at their house. I had just arrived home from Packer training camp, where I treated my kidneys to a day of family fun. Lonnie changed into his Packer shirt so we would match for the photo! For those of you who don't know Lonnie, I hope you are glad to finally put a face to the name.
Tonight Lonnie and Ginger's daughters Kellie and Janel met me at their house around 5:30 p.m. Lonnie and Ginger thought we just all "happened" to stop by to visit. But in reality we were there to tell them about the bracelets. After giving them each one I broke the news to them that we were selling the bracelets and all of the money would go towards their expenses for the transplant. They got emotional, as I think we all did! They are extremely grateful to everyone for purchasing and wearing the bracelets. Kellie's son Riley immediately took several and went around the neighborhood selling them. Within about 1/2 hour he had sold a dozen! I think he might be in the running for "Salesman of the Month"!
You may have noticed my updated picture. My friend Jolene mentioned to me that she thought everyone needed to see a picture of Lonnie -- so here it is! The picture is from tonight at their house. I had just arrived home from Packer training camp, where I treated my kidneys to a day of family fun. Lonnie changed into his Packer shirt so we would match for the photo! For those of you who don't know Lonnie, I hope you are glad to finally put a face to the name.
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