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!!" 

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. 

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 Dairy Queen Gene

It has been over a week since we visited UW for Lonnie's evaluation.  Today I sent an e-mail to Chris to see if they had heard anything back on our bloodwork, even though I thought it might be a bit premature.  She said it was funny I e-mailed because the lab had just called her regarding us.  She relayed that the antigen match was fine -- we matched 1 out of 6 antigens and that is not a problem.  (On a side note, Froedtert tested for 8 antigens and we matched 2 -- Dr. Mezrich explained to me that some places test more antigens, but only 6 are truly important).  The only concern on our bloodwork was that Lonnie's blood did not seem to like one of my genetic markers, specifically DQ7.  I can only assume this is the Dairy Queen marker, although I cannot for the life of me figure out why he would not like that!  So anyway, the lab now needs to place a "value" on the dislike.  If he only dislikes my DQ by a little, then it will not be a problem.  But if he dislikes my DQ by a lot then we will need to sit down and talk with UW on how to proceed.  There is a procedure which can be done called plasmapheresis.  In this procedure a machine filters blood and removes the antibodies that react against genetic markers.  At the precise time they feel the antibodies are adequately removed, the transplant can be performed.  The entire process is called desensitization.  Desensitizing Lonnie's blood would make it much less likely that his body would reject my kidney.  Interestingly enough, this process can only be done on recipients with a living donor as the timing has to be precise -- something that would be nearly impossible with a wait-list donor.  Chris did say though that we will not even know if this is a concern until we get the final lab report.  Hopefully that will be by early next week.  On Monday the surgeons are slated to meet to approve Lonnie as a recipient.  They will need cardiac clearance from his cardiologist first though, which still has not come through.  Assuming they approve him they will then need to meet on Tuesday to discuss our antibodies -- and see if Lonnie decides to like DQ! 

It seems like we spend a LOT of time WAITING!  But Chris from UW has been just incredibly great at keeping us up to date on what is happening, so at least we know where we stand.  That makes the waiting much more bearable.

On a wonderful side note, Zeke was released from Mayo today -- three weeks after receiving "Chloe", his new kidney from Sarah.  He is doing great and the surgeon says he could not have hand-picked a better kidney for him!  Sarah returned to work this week as well and continues to recover nicely!

Stay tuned....I have an exciting opportunity for you all to help out in a small, but significant way in the near future....I will post more in the next couple of days!

The Surgeon's Name is What??

At 6:23 a.m. this morning Lonnie, Ginger, and their daughter Janel arrived at my house for our trip to UW Hospital in Madison.  As many of you know, I am not a morning person!  But this trip had me excited, so I had no problem leaving so early.  We arrived at UW Hospital at about 8:30 a.m. and checked in for our 8:45 a.m. appointment.  The first step was to complete admissions information, which Lonnie and Ginger took care of while Janel and I sat and chit-chatted in the waiting area.  Then the admissions gal took us down one floor to the Transplant Clinic.  We sat there for quite awhile until they took us back into the room that we would stay in for the next three hours while several folks from different specialties came in to see us.  The first couple of people got Lonnie updated in the system and took his vitals.  Next we were visited by a nutritionist who discussed the type of diet that Lonnie should be following now.  Because his dietitians in Marshfield have been doing a stellar job, she did not have much new to tell him!  After that the social worker came in and spent about 1/2 hour talking with us about financial, social, and emotional issues that Lonnie and his family have faced up to this point and will likely face in the future.  The next person on the agenda was Lynn, one of the transplant coordinators at UW.  She was filling in today for our usual coordinator, Chris, who has been so spectacular in helping us out with getting established at UW(actually in getting Lonnie re-established since he was originally at UW before his insurance company balked and sent him to Froedtert!).  Although Lynn was a great person to talk to, she didn't have much for new information since Chris has kept us up-to-date on the happenings so far.  She did, however, give both Lonnie and I our lab orders that we would need later in the day.  At this point I glanced at the surgeon's name that would be seeing us today -- his name??  JOSHUA!  Same as my oldest son!  I told them it MUST be another sign!  Dr. Joshua Mezrich is his full name.

Shortly after Lynn left the room, Dr. Mezrich(or Josh, as I like to call him) entered the room.  I could tell right away that I liked him.  He was a younger guy and had a smile on his face.  And of course the fact that his name was Josh was a bonus!  Dr. Mezrich reviewed Lonnie's case and asked him a few questions.  Then we girls left the room while he gave Lonnie a very brief physical.  Then it was time to review the dreaded CT scan -- the scan that made Froedtert scream and run the other way!  Dr. Mezrich brought it up on his computer and took the time to explain exactly what we were looking at.  He then showed us the areas where there is some plaque build-up on the vessels around the kidneys.  He explained that this can be a problem because placing the clamps during surgery can dislodge the plaque and cause blood clots in the legs.  He also said that of course the blood flow could be a little more difficult to the new kidney.  But then he said the words we were waiting to hear...."This will be a bit challenging and a little higher risk, but I am confident I can do it."  HALLELUJAH!!!  We all smiled when he said that....and so did he.  He told Lonnie that the fact that he has a living donor is especially important in this type of case because the excellent health of the kidney will lower the risk of problems long-term.  He answered so many questions from us and was so very patient.  We then asked if he would be Lonnie's surgeon.  He said it would depend on the scheduling, but we could request him.  We said we would definitely do that! 

In the end we both got blood drawn -- Lonnie won the "tube battle".  He had 7 tubes drawn and I only had 3.  Next week we will find out the results of our compatibility testing -- it should match Froedtert's results, but they wanted to be sure.  We finished up with Lonnie's chest x-ray.  Dr. Mezrich will need to present our case to his colleagues and be sure they all agree that it can be done, but he says they have definitely seen worse cases so he is pretty confident they will agree.  He did mention that they may take Lonnie back first during surgery instead of the tradition of taking the donor back first.  He wanted to do this just to ensure that they didn't have any surprises once they opened him up.  If all the blood work comes back okay and his colleagues approve Lonnie, then they will set up my evaluation. 

At UW Hospital as you enter their transplant clinic they have a darkened area with a wall full of names.  On this wall they have the name of every living donor who has donated a kidney at their hospital -- all lit up in different color lights.  How cool is that??  I am of course excited to have my name on that wall -- and Lonnie of course is jealous that he does not get his name on that wall!  Poor guy.

We finished up the day with a late lunch at Chili's.  What a great experience and a message of hope today was!!  We did indeed feel like we were celebrating!  Thank you all who are praying for us and following our story.  You are an inspiration and a wonderful support to us all!

The Pulse

Yesterday Sarah and I had an article published in our Marshfield Clinic's internal newsletter, The Pulse.  I will include the link at the bottom of this posting in case you would like to read it.  I once again have to thank Steve Thayer of our Corporate Communications department for getting our stories out there.  Sarah and I are so grateful to have our stories told in the hopes it will bring the subject of organ donation to light.  Steve also included a link to my blog in the article, so to anyone who is a new reader of my blog, WELCOME! 

Speaking of Sarah, she is doing well, but having some problems staying hydrated.  It sounds as though this is a pretty common issue after donation.  Prayers are appreciated for her!  We are getting together for lunch on Wednesday again.  I cannot wait! As for Zeke, he is doing great!  His doctors continue to be amazed at how wonderful he is doing.  He is meeting all sorts of people at the Gift of Life Transplant House where he and his wife are staying and hearing so many incredible transplant stories.

As for Lonnie and I...well, we are truly looking forward to our trip to UW on Tuesday.  And we both found out we don't have to fast before coming down, so we can eat as much as we want!  That is a bonus!  It sounds like it will be Lonnie, Ginger, and I...and possibly their daughter Janel...making the trip.  I told Mike he might as well stay home with the boys this time since this visit will mostly concentrate on Lonnie.  Our appointment is for 8:45 a.m. that day.  Again, prayers are always appreciated!!

Here is the link to the article....http://www.e-pulse.info. 

And We Have A(nother) Date

Lonnie and I are going on another date -- to UW Hospital this time.  Next Tuesday, August 10th, we will visit UW to have Lonnie's evaluation and my bloodwork.  We will likely spend the entire day at UW as Lonnie will have to have most of his original testing redone.  As much as this might sound like a pain, we are willing to go through anything if it means we are one step closer to transplant!  After that day they will run my bloodwork and review all of Lonnie's tests.  As long as everything looks okay, we will proceed with my evaluation.  Of course we could face more bumps in the road, but we will take those as they come.  We are optimistic that we are on the right path, and we are so grateful to UW for giving us a second chance!

Today is my husband Mike's birthday.  I want to take a minute in my very public blog to thank him for walking this journey with me.  He has laughed with me, cried with me, listened to hours of my "kidney talk", and he rallied behind us when we decided to get another opinion.  So Mike -- I thank you from the bottom of my heart for being a wonderful husband and dad to our kids.  I couldn't do life without you.  I wouldn't even want to try.  I love you and wish you a very happy birthday.

And The Answer Is.....

I was on the golf course today participating in the YMCA golf outing with three of my fellow co-workers from Marshfield Clinic.  (Notice I say participating and not golfing because my game today was almost not worthy of being called golfing!)  Anyway, about 3:00 p.m. my phone rang and I saw that it was Lonnie and Ginger's number.  I answered and Ginger started making small talk with me.  Then she said..."hang on a minute".  I had a feeling she was getting Lonnie.  Sure enough...Lonnie came on the phone.  He said, "Jill??  Madison said they don't see a reason why we can't move forward!"  Or at least that is what I THINK he said!  We were both laughing and overwhelmed by emotion!  Chris had called from UW just a few minutes earlier and said that the committee had reviewed our case and they don't see any problem with scheduling an evaluation.  Apparently they are not as concerned about the medical issues that had shot down the deal with Froedtert.  It was so exciting and thrilling!  When I got home tonight I had an e-mail from Chris telling me basically the same thing that she told Lonnie.  After I calmed down my golf game even started improving!

So what happens next?  Well, UW would like to repeat the evaluations that Froedtert did.  Sure it will be a lot of the same testing, but we don't care.  As long as they are willing to do it, we are willing to go through it!  We should know in the next few days when the evaluations will be scheduled.  If they cannot get them on the same day, I will likely still go down with Lonnie and Ginger so we all hear the same information.  Plus I want to share in the excitement of the day!

I want to say a big thank you to each and every one of you who have been praying for us and thinking of us through this whole process.  You will probably never know just how much it means to us.  We all feel so loved!!