Thursday, May 26, 2011

Happy Bananas!!

On Monday Chris emailed me and told me that she would send my blood to the lab along with Sara's to see how we got along with each other.  She reminded me that it could take 1-2 weeks to get these results back.  Ugh!  More waiting!  I called her on Tuesday and we had a long talk about what my options were whether or not Sara and I were a match.  It was good to talk to Chris again.  She is so knowledgeable and yet so very compassionate.  I let Sara know that we would be waiting awhile -- neither one of us liked that idea, but it had to be!  In the meantime, we spent a lot of time on Facebook and email "getting to know each other".  Sara also saw her surgeon to discuss her surgery to implant her dialysis catheter -- a procedure she is not really looking forward to!

Today I was working the Market Day fundraiser at Isaiah's school when my cell phone rang.  It was Kathy(Sara's coordinator) from UW Hospital.  Chris was on vacation and Kathy wanted to call and tell me that she already had our results.  I was nervous to hear what came next.  To get results that quickly it either has to be great or terrible!  She said that our results were very, very good -- and that Sara and I were "a wonderful match"!  She explained that there are several categories of antibody levels(the number of antibodies that Sara's body has against mine).  The lowest level, and the one they desire, is anything under 100.  She said they will consider taking anything up to 3,000, but nothing higher than that.  She told me that our numbers were right around 50!!  WOW!!  She asked me if I still wanted to proceed.  Well of course I said yes!  Then she told me that because these are technically my results she had not yet talked to Sara.  She told me that with this wonderful of news she felt I should do it myself.  I agreed!  So I called Sara.  She was just getting home from work.  We talked for a few short minutes and I told her the great news!  We were both so happy!  Kathy asked me to have Sara call her, so we kept it short then -- but as I write this we are chatting on Facebook.  So many emotions!  And such a thrill!

What's next?  Well, I need to go back down to UW and have a few more tests done.  When I was testing in the past I had trouble with a little bit of blood in my urine.  That will need to be tested again, but as Dr. Unwala has said in the past -- my bladder is shockingly normal!  Happy Bananas!!  (If you don't know what that means you will need to go back and read my previous posts from many months ago -- it is a direct quote from Dr. Unwala!).  And I will also need to pass a psychological evaluation again.  That is certainly never a slam dunk :-)  After that Sara and I can schedule surgery.

I was thinking tonight about Lonnie.  It is amazing to me how this whole thing was started because of his need for a kidney.  I spent so long with him and developed such an incredible bond with their whole family and that will never be broken.  He is the reason that I will now be doing this for Sara.  He is my inspiration.  It never made any sense to me -- why I would come so far with Lonnie only to have it all fall apart.  As my friend Jolene said tonight -- now this past year all makes sense.  We have come full circle.  Life is amazing.

Sunday, May 22, 2011

Decision Made

I kept waiting for another sign.  I had so many before that I figured surely I would get another one that would help me decide whether I should still consider donating a kidney or just drop the whole thing.  The thing is that I thought about it every single day.  I believe so strongly in donation and the journey had been so incredible that it just didn't seem to me that this could be the end.  Mike and I talked about it at length and his only concern was that I might feel emotionally empty if I donated anonymously(as a "non-directed" donor).  The recipient always has the right to choose whether or not they want to meet, so there is a chance I could donate and never hear from the recipient.  Finally this past Wednesday I was having lunch with my dear friend Roxie and telling her that I just wish she could tell me what to do!  I was pretty sure I knew what to do, but was waiting for that final "do it" from God.  She didn't have the answers, but promised to pray about it.  That night I happened to be on Facebook and glanced at an old group I had joined many months earlier about living donors.  There was a blog posted on there by a non-directed donor.  I read the entire thing and cried at her emotions -- they were so similar to mine.  Then the next morning I opened my email to find that my mom sent me a link to an article late the night before.  It was a story about a man who became a non-directed donor at UW and started a donation chain.  My mom had no idea that I had just talked with Roxie about what I should do.  I texted Roxie and told her about the email.  The text I received back said this, "Why don't you just wait for a kidney to fall out of the sky and hit you on the head?"  Well said Rox -- well said!!  After getting the final blessing from Mike, I sent an email off to Chris at UW telling her that I wanted to go ahead and make a donation.  It was such a peaceful feeling!  I just knew it was right.  Chris emailed me back and told me she thought that was wonderful news and she would turn me over to Kathy Miller, who is the coordinator for that program.  I was sad to know I couldn't keep Chris as my coordinator.  She is so incredible!!

I decided that I would initially tell very few people what I had decided until I was ready to update my blog and knew my next step.  But I did let one of my co-workers know due to the fact that she was going to be taking some medical leave as well and I figured we maybe could coordinate it.  Then on Friday I also told my co-worker Laura.  She just smiled at me and told me that she knows a girl who actually needs a kidney.  Her name is Sara.  She is married with a 5 year old girl and also works at Marshfield Clinic!  She said that Sara had just posted on Facebook that she had some family members tested, but nothing worked out and she would be starting dialysis soon.  Laura said that Sara was also worked up at UW Hospital just like I had been.  I told Laura to get in contact with Sara and ask her if she would like me to have our numbers compared.  It is really a simple procedure to check for a match once all of the bloodwork has been done -- the coordinators just need to look at our antigen numbers and see if there is any chance I can donate directly to Sara.  

Tonight Laura texted me and said that Sara was thrilled to hear about me.  It turned out that she had read about me back when the Clinic wrote an article about me in their newsletter.  Without having an update she just figured that I had already donated and it was over and done.  Laura told her what happened with Lonnie and I and that I still had one to spare!  Sara immediately "friended" me on Facebook and we just spent the last two hours chatting and getting to know each other.  It turns out she is a cousin to my friend Jodi as well!  Jodi had inquired about donating herself, but blood types were not a match.  During the time Sara and I were chatting I also emailed Chris at UW and asked her to compare our numbers.  She should be able to give me an answer on Monday assuming she is in the office that day.  Will we be a match?  That would be incredible!  I also mentioned the paired donation program to Sara.  She was not even aware of that program yet, so I told her about it.  If we were not a match, perhaps this would be an option for us as well.  Mike's concern about my lack of emotional connection with a non-directed donation could be solved!  If Sara and I can work this out then perhaps she will become my new recipient!  I am excited to see what Monday brings!

Today, May 21st, was my birthday.  I had a wonderful day with my husband and kids and was reminded of just how blessed I am.  Tonight my conversation with Sara just cemented that further.  My health is worth so much!  I will never take it for granted again.

Wednesday, May 11, 2011

Goodbye Dialysis Tube, Hello Life!!

It was exactly four months ago tonight that the call came in that a kidney was available for Lonnie.  It was January and freezing cold out.  The Packers had not yet won the Super Bowl, or even the NFC Championship game for that matter.  We were all so excited for the new kidney, but apprehensive as well.  Would the surgery be a success?  Would the kidney reject?  Would Lonnie's vascular system make it more difficult than the surgeons at UW thought it would be?  How would our emotions hold up through another set of possible highs and lows?  We knew that we needed to fall back on exactly what had gotten us this far -- HOPE and PRAYER.

So here we are....4 months later.  Lonnie has been back down to Madison for follow-up a couple of times now. He gets bloodwork twice a week, which is decreased from the original regimen of three times per week.  The only complication thus far has been that he developed a virus called BK virus(you may remember that back in our days of testing we had trouble with the DQ gene which I promptly dubbed the Dairy Queen gene -- well this one earned another food nickname, the Burger King virus!).  This virus is apparently quite common among kidney transplant patients and comes about due to the immunosuppressing actions of the anti-rejection drugs.  Fortunately, UW managed to adjust the anti-rejection drug dosages down to a level that caused the virus load to drop right back down.  Now they are slowly increasing the medications again until they can find a happy medium.  The doctors and medical staff at UW do not seem to be concerned however that this will be a long-term issue, which we are thankful for. In spite of that Lonnie's kidney functions continue to be very good, which is simply amazing in my opinion!  When I think back to the day that Froedtert Hospital told Lonnie he would never have a kidney transplant I am simply in awe of where he is today.  

As I am writing this post I just happened to glance at the clock in the corner of my computer.  11:07 p.m.  The exact time 4 months ago when Ginger called me to say that the call had come in from UW.  And then I think about today.  This was the day that Lonnie traveled to UW Hospital to have yet another surgery, however this one much simpler.  They removed his dialysis tube that gave him life for so many months while we went on our kidney journey.  With God's grace he will not ever have the need for that tube again.  What a feeling of being set free that must be for him.  Getting that tube out is not just removing a nuisance from his body -- it is also setting him free to enjoy life once again.  Even though he has not used the dialysis tube since the day before surgery, it was always there as a reminder of where he had been.  Now it is gone and life with the new kidney can truly begin!

Many people have asked me whether or not I will still donate my kidney to someone else who needs it.  I have prayed for 4 months about this.  It is on my mind every single day.  Mike and I have talked at length about the options.  While I do not have a set plan at this point, I believe something is in the works.  Stay tuned.  God has a plan!!