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!!"
Tuesday, August 31, 2010
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.
Monday, August 23, 2010
A Major Hurdle Cleared...and the Bracelet Story
Today Chris called Lonnie and Ginger around 4:30 to tell them that the surgeons have cleared Lonnie for surgery! He is cleared for our live donor surgery, and will also be placed on the waiting list for a deceased donor. That is just done for precautionary purposes. Tomorrow morning Chris hopes to have the final results from our blood work. Tomorrow afternoon at 3 p.m. the committee will convene to discuss the bloodwork and any barriers the DQ gene could possibly be causing. There is a possibility that it will not be a problem at all -- and that is what I am choosing to believe! If all goes well, we can then set up my donor evaluation, which will hopefully just be a formality. But today's victory was a big one. In order to clear Lonnie for surgery two things needed to happen. First, his cardiologist, Dr. Rezkalla(Marshfield Clinic), needed to send a letter stating that he feels his heart is healthy enough for surgery. He did that on Friday. Second, Dr. Mezrich(UW Hospital transplant surgeon) needed to get his colleagues to agree that our case is a manageable case. He did that today! What a relief it is to know we have gotten past that point.
The second thing to happen today was the arrival of the bracelets! A few weeks ago, my dear friend Jolene and I were discussing what we could do to help Lonnie and Ginger with the expenses that they will incur during their time at UW. Jolene and I have been friends since Kindergarten, so we have been through a lot together! She has been such a huge support during this journey. We came up with the idea of ordering bracelets, similar to the Lance Armstrong Livestrong bracelets, and selling them to people. Not only would this raise money, but it would also serve as a visual reminder for people to think of Lonnie and hopefully pray for the whole situation. We scoured the internet to find a place to order the bracelets from. We finally settled on a place in Texas after they cut us a deal. We decided to get them in green, which symbolizes organ donation. Then we thought hard about what to have written on them. We settled on "Hope For Lonnie", which was simple and said it all! I placed the order and they told me the bracelets would arrive this Tuesday. Today Jolene was here visiting from Green Bay for a few hours. She had been at her mom's birthday party yesterday and came by to see me before heading back home. I had been tracking our order and saw that the bracelets were in Milwaukee this morning. Wouldn't you know it -- while Jolene and I sat visiting on my back deck the DHL delivery guy showed up on our front steps with the bags of bracelets! What great timing! So, now we have 1000 bracelets to sell -- 700 adult sizes and 300 youth sizes. We are asking for a donation of $1.00 per bracelet. ALL money raised will be given to Lonnie and Ginger. If you would like one, please get in touch with me and I will be sure you get one!
On a final note, you may remember from an earlier post that I mentioned a patient of mine who is expecting a granddaughter soon who will be born with only one kidney. This patient was in my office telling me about this while I was waiting on the results from Lonnie's cancer tests. As she was talking to me I could hear my office phone ringing. That turned out to be the call with the great news of "no cancer"! Well, she was back in about a month ago and I was filling her in on our cancelled surgery at Froedtert. At that time she said, "Well, maybe you will find something out from UW on or around the time my granddaughter is due." At the time I thought that seemed so far away. However, when Chris called today she said we will have our answer on the bloodwork no later than Wednesday morning. And yes, you guessed it...the granddaughter is due to arrive on Wednesday! Isn't God great? I love His perfect timing. The bracelets arriving in the three hour span Jolene was here...the baby being due the same day we should have answers....He never fails to amaze me!
The second thing to happen today was the arrival of the bracelets! A few weeks ago, my dear friend Jolene and I were discussing what we could do to help Lonnie and Ginger with the expenses that they will incur during their time at UW. Jolene and I have been friends since Kindergarten, so we have been through a lot together! She has been such a huge support during this journey. We came up with the idea of ordering bracelets, similar to the Lance Armstrong Livestrong bracelets, and selling them to people. Not only would this raise money, but it would also serve as a visual reminder for people to think of Lonnie and hopefully pray for the whole situation. We scoured the internet to find a place to order the bracelets from. We finally settled on a place in Texas after they cut us a deal. We decided to get them in green, which symbolizes organ donation. Then we thought hard about what to have written on them. We settled on "Hope For Lonnie", which was simple and said it all! I placed the order and they told me the bracelets would arrive this Tuesday. Today Jolene was here visiting from Green Bay for a few hours. She had been at her mom's birthday party yesterday and came by to see me before heading back home. I had been tracking our order and saw that the bracelets were in Milwaukee this morning. Wouldn't you know it -- while Jolene and I sat visiting on my back deck the DHL delivery guy showed up on our front steps with the bags of bracelets! What great timing! So, now we have 1000 bracelets to sell -- 700 adult sizes and 300 youth sizes. We are asking for a donation of $1.00 per bracelet. ALL money raised will be given to Lonnie and Ginger. If you would like one, please get in touch with me and I will be sure you get one!
On a final note, you may remember from an earlier post that I mentioned a patient of mine who is expecting a granddaughter soon who will be born with only one kidney. This patient was in my office telling me about this while I was waiting on the results from Lonnie's cancer tests. As she was talking to me I could hear my office phone ringing. That turned out to be the call with the great news of "no cancer"! Well, she was back in about a month ago and I was filling her in on our cancelled surgery at Froedtert. At that time she said, "Well, maybe you will find something out from UW on or around the time my granddaughter is due." At the time I thought that seemed so far away. However, when Chris called today she said we will have our answer on the bloodwork no later than Wednesday morning. And yes, you guessed it...the granddaughter is due to arrive on Wednesday! Isn't God great? I love His perfect timing. The bracelets arriving in the three hour span Jolene was here...the baby being due the same day we should have answers....He never fails to amaze me!
Subscribe to:
Posts (Atom)