Hope Springs Eternal

Last night I was looking for answers -- any answers.  I started researching UW Health(UW Madison's healthcare system) online.  I found the page on kidney transplants.  Once again, as has happened so often throughout this journey, I couldn't believe my eyes.  There is a section on their website entitled "Why Choose UW Health For Your Kidney Transplant?"  About halfway down the page, here is what I read:

"UW Health Transplant consistently leads the nation in patient outcomes, despite taking patients whose conditions are so complex that other centers may not consider them for transplant."

Sound familiar?  WE have a case that another center will not consider for transplant!  Could this be another sign?  Not sure.  But for some reason I discover all of my signs after 11 p.m. -- much too late to call Ginger!  So I called her at 8:00 a.m. today to tell her what I had read.  Little did I know that she was ready to tell me that they wanted to seek another opinion as well.  It turned out that their coordinator at Froedtert had left a message for them late yesterday afternoon saying that the doctor said that if we wanted to go to another transplant center they would be happy to transfer our records.  So today Ginger called UW.  The coordinator she needs to talk to is out of the office until Tuesday, however she decided that she will call back tomorrow and see if someone else can help us.  The funny thing is that Lonnie was originally at UW, but due to insurance reasons he had to change to Froedtert.  Since then his insurance has changed and he can now go back to UW. 

What would we have if we didn't have hope?  God gives us hope when we choose to believe in Him and put our faith in Him.  It is a new day.  We have a renewed sense of hope.  God is good.

Defeated, But Not Broken

I sit here and write this with tears in my eyes.  I waited until the end of the day to write so I could gather my thoughts.  Today Lonnie was told that the surgeons at Froedtert have reviewed his CT scan and he has a vessel disease that they feel would cause a transplant to be too risky.  They have cancelled the surgery with no plans to reschedule.  Of course their family is devastated and I am distraught for them.  We were so close and now it will not be the case. 

So now we are left with wondering why this has happened.  Why did we have to get to this point before this happened?  What is God's true plan?  Are we missing something?  I can not say that I know any of these answers.  I am as confused as anyone else at this point.  All I can do is pray, be patient, and ask God to show us what the meaning behind all of this is.  I can not honestly believe that all of the signs, all of the reassurance, all of the emotions have meant nothing at all.   I did mention to Ginger that perhaps they should consider seeking a second opinion at UW Hospital.  If they choose to do this I will be right there by their side.  And if by some miracle he could have a transplant, I will be right there to donate my kidney!

Lonnie this is for you -- The bond we have formed is so very precious.  We have built a bridge between us that nobody can tear down.  You and I will always be true friends because of the joy you have brought to my life.  You have given me the opportunity to really get to know myself.  You think I was giving you a gift, but you have given me so much more.  You allowed me to come into your life and give you hope -- but you gave me hope too.  In the words of one of my favorite singers of all time, Garth Brooks, "I could've missed the pain...but I'd have had to miss the dance".  Thanks for dancing with me Lonnie.  This isn't the end.  I promise you that.

Waiting Once Again...

This afternoon about 3:30 I spoke with Elise, my donor coordinator.  She said the entire transplant team was going into a meeting at 4:00 today to discuss our case.  She said she isn't 100% sure what is happening, but she thinks it is just a precautionary measure on the part of the surgeons and everyone involved.  Lonnie just found out on Friday that his tests all came out fine, but Froedtert likely didn't get the official results until today.  Elise says they are super cautious and didn't want to do the pre-op until they are sure they can give us the go-ahead on surgery.  She said that so many different people have been communicating down there, but until now they have not sat down in a room together and truly all discussed the case.  They need to be sure everyone in on the same page and can express their opinion.  She said nothing could be worse than getting to surgery and finding out that one of the surgeons didn't know something about the case or feels uncomfortable.  I can completely understand their need to be absolutely sure everything is in order, however I will not hide the fact that this is very frustrating for both Lonnie's family and my family.  When I talked to Elise today I expressed some of those frustrations,  She is so very empathetic and has been a great coordinator for me.  I truly appreciate her! 

So, at this point I am hoping to hear something tomorrow morning.  Elise promised to call to tell me the outcome of today's meeting.  I am once again struggling with the reasons behind all of this uncertainty.  But I do know that God has a plan that will all make sense in the end.  And I STILL believe that this surgery will indeed happen....I will even go so far as to say the 13th is still the date I believe in.  Prayer is so powerful and I know it has brought us this far.  Please continue to pray if we come to mind. 

Unlimited Faith

This will just be a short post.  Tomorrow we were scheduled to head to Milwaukee for our pre-op admissions testing.  Today at 11:30 both Lonnie and I got calls from our coordinators telling us that they are cancelling tomorrow and deferring the surgery.  The surgeons are concerned about being sure everything is just right before they do the surgery.  Since Dr. Unwala saw a spot on the bladder when he saw Lonnie the surgeons are concerned.  Dr. Unwala told Lonnie on Friday however that the spot was fine and not cancer.  SO, we are hoping this is just a precautionary measure on the part of Froedtert.  They were going to call Dr. Unwala to talk with him about it.  We are both waiting on further calls from Froedtert at this point.

I was starting to think I had used up every ounce of faith I had on this rollercoaster of emotions -- but I know that I have an unlimited amount!  I truly still feel this surgery will take place as planned.  Please keep this in your prayers -- I will update as soon as I know more.

The Power of Prayer

Today I was at work and seeing a patient a little after 10:00 a.m.  She was telling me that she was going to be a grandma soon and that they had discovered through a routine ultrsound that the baby girl only has one kidney.  I proceeded to tell her my story and how I was waiting on news.  She said, "Maybe I am your sign that it will all be okay".  From inside my exam rooms I can hear my phone ring in my office.  While she and I were talking I heard my phone.  It rang two short rings each time, which told me it was a call coming from outside the clinic.  When I got done with her I walked back into my office.  Ginger had left a message at 10:05 a.m. asking me to please call her back.  She sounded very sober and not necessarily like a person with good news.  With my heart beating quickly I called their house.  Ginger answered and immediately put Lonnie on the phone.  He said, "Jill?"  I said, "yes"  He said, "IT'S NOT CANCER!!!!"  Then he started crying -- and so did I!!  It turns out he just has a cyst on his kidney.  Wow.  What a tremendous feeling.  Lonnie said he wanted to be the one to tell me so Ginger did a great job of not giving it away on the message!  Praise the Lord!!  He is good -- all the time!!

Tuesday we go for pre-op testing at Froedtert.  For now, we celebrate the power of the prayers of people that we know -- and many who we don't know!  Thank you all.  Your prayers mean the world to all of us.

Just over two weeks until my left kidney is no longer mine -- and I couldn't be happier to give it away.

Shifting Momentum

You know that moment in a baseball or football game when you can literally feel the momentum shifting and the team that was losing starts to gain ground and come from behind?  That is how I felt today.  After a ton of despair and heartache yesterday, my discovery of the calendar page last night started the shift of momentum.  I can literally feel God working now.  I can see that His plan is not always my plan -- and I need to let Him take over the controls.  I am reminded of a phrase I saw not long ago that says, "If you want to hear God laugh, just tell him your plans!"  How true is that??

Lonnie saw his dialysis doctor(Dr. Campbell) today.  Although Dr. Campbell doesn't know for sure what the plan is, he did say that they are not sure how to proceed with the testing.  Lonnie cannot have contrast dye as it will destroy any kidney function he has left.  A PET scan that would normally be used to look for cancer requires contrast.  There is talk of doing an MRI, but Dr. Campbell, Dr. Unwala, and Dr. Ewert(nephrologist) need to get together and decide what the best route of testing will be.  Once they decide it will hopefully be just a day or two until he can get in.  Dr. Campbell did say he feels that if this is cancer they caught it in time.  So IF it is cancer Dr. Unwala will likely remove the kidney and then we would have to wait 6 months to be sure the cancer has not spread.  If it has not, then we could hopefully proceed with the transplant.  If it is NOT cancer(which I still believe is the case), then we can proceed as scheduled.  At least that is the word from Dr. Campbell today!  So hopefully answers are on their way!  I just thank God for the skilled doctors and staff who have the training and expertise to know how to handle this situation.  I think this is a very unique situation that they don't come upon every day, so they are really putting their knowledge to the test!

Tomorrow morning I have a very important meeting with the Personnel Review Committee at Marshfield Clinic.  They are going to review my proposal that the Clinic adopt an Organ Donor Leave policy.  I am hopeful they will see this as a worthwhile policy and strongly consider it.  As a leader in the healthcare field I feel adamant that we should be making it as easy as possible for our staff and doctors to take the time off to donate an organ or bone marrow.

Today my kidneys just went to work with me.  Tonight they enjoyed pizza and the movie "The Proposal" with my wonderful husband.  It was good to laugh! 

The Ultimate Test of Faith

This morning I walked out into my waiting room to see Lonnie and Ginger sitting there waiting for his labs to be done.  I went over and talked with them and found out he needed to go to Marshfield today to get a stomach x-ray due to problems with his dialysis catheter.  I mentioned that maybe Dr. Unwala could see him today instead of Wednesday to save them a trip.  Of course we wanted to hear what Dr. Unwala had to say about the mass on the kidney, but then again did we really want to hear?  One of my technicians, Jean, graciously offered to call Dr. Unwala's office(bless her heart) and see if they would move Lonnie's appointment to today.  Dr. Unwala agreed to see him at 2:30 p.m.  A little bit after 5:00 I called Ginger to see what they found out.  She said it was not good.  Dr. Unwala is pretty sure the mass is cancerous.  I was crushed.  My first thoughts were of Lonnie and his health, which I so desperately want to be good.  My second thoughts were that of anger and a bit of distrust of God.  I'll be honest -- I was mad at Him!  How could He bring us this far only to crush our hopes?  What about all the signs?  Did I imagine them all?  I felt like I was led astray -- like nothing made sense anymore.  I also felt like I had gotten Lonnie's hopes up -- only to have them crushed.  And then I hung onto the hope that Dr. Unwala did say he COULD be wrong.  So he could be, right??  I mean doctors are wrong all the time.  But I must admit that I was heartbroken and my faith was in danger of heading downhill quickly.  Ginger said Dr. Unwala was setting up more tests -- hopefully for later this week.

I made it through the night at Josh's ball game and tried to keep a smile on.  After we got home and got everyone settled I was talking to my sisters on Facebook and I simply lost it.  I crawled into bed with Mike and sobbed in his arms for a good 20 minutes.  How could this be happening I wondered?  Had I done Lonnie a huge disservice by offering him hope where there might not be any?  Would it have been better if I had never offered to be tested? 

A few minutes ago I got up out of bed and went into our bathroom.  We have a perpetual calendar in there that has a fact, story, or joke for each day.  Generally they will be related to that particular date.  I suddenly had the urge to look at July 13th, our scheduled surgery date.  I could not believe my eyes.  Here is what JULY 13th says, "Random Fact of Origin...On June 17th, 1950 an Illinois surgeon named Richard Lawler removed a kidney from a donor who'd been declared brain dead moments earlier and transplanted it into a 44-year-old woman named Ruth Tucker....."  It goes on to talk about the transplant and rejection, etc.  It didn't matter to me what the rest of it said however.  My faith is restored.  Just that one simple sentence and it was restored.  God DOES have a plan!!  Why would there be a random fact on July 13th about something that happened on June 17th?(Which is Josh's birthday, as you might recall from an earlier post)  I often read ahead on the calendar when I am bored, but I had never even glanced at July 13th before.  As always, God's timing was perfect.  My faith is indeed restored -- and I needed to share that with you all tonight.

Kidneys went to Chicago over the weekend.  Hopefully that is the last time my left kidney will go there without Lonnie.  Please pray...please keep the faith.

Another Bump in the Road

I really struggled with whether or not to write this posting.  I was hoping we would simply get this problem resolved and I could skip this part of the story and nobody would be the wiser.  But tonight I knew I had to write it.

Wednesday afternoon Ginger called me.  I could tell right away that something was wrong by the tone in her voice.  She said that Lonnie had a CT scan done that day and they found a mass on his left kidney.  They said it could be a fatty tumor, but it could also be cancer.  She was told the transplant would have to be cancelled.  I was simply in shock.  How could we come this far only to have it all fall apart?  Was that even possible?  After several minutes of frantic conversation and a little silence between us we hung up and promised to call each other on Thursday when we each hoped we would know more.  Thursday morning I called Elise right away at Froedtert.  She had heard what was going on and reassured me that they would not cancel the transplant, but simply put it on hold until they had the results of any testing that would be done.  The date of both the pre-op(June 29th) and the surgery(July 13th) would stay the same as of now.  I felt better talking with her, as she is a rock and a voice of reason.  I spoke to Ginger that morning, but she had not heard any more.  Friday I talked with Ginger again and the news sounded a bit more positive.  She was now told that the transplant was not cancelled(but put on hold) and that if they found a tumor that was enclosed in a sac, they could remove the kidney and still do the transplant. 

Wednesday Lonnie is scheduled to see Dr. Unwala -- ironically, you have already met Dr. Unwala in this blog -- he is the "HAPPY BANANAS" doctor that I saw when they were ruling out any bladder problems with me!  He is a great doctor and so very thorough.  I feel better knowing Lonnie is in his hands. 

So, the reason I was not sure if I should post this is because I feel like I walk a very fine line between telling my story and invading Lonnie's privacy.  But tonight as I was getting ready for bed, at midnight -- late as usual, I just knew in my heart that I needed to write.  If there was ever a time for prayer, it is NOW!  Please pray for Lonnie.  I am simply positive that this transplant WILL take place.  God has reassured me of that.  But Lonnie can sure use your prayers.  And Ginger too.  They need peace and reassurance more than anything.  And of course we all need good news!  This journey has been about faith from day one.  And I sure do have it -- but it has been tested over and over and your prayers will keep it intact.

I will keep you posted.  In the meantime, thank you from the bottom of my heart.

What a Nice Surprise!!

Today I was done with patients around 4:30 and was just finishing up some charts for the day when my front desk called back to tell me that Virginia Jelinski(aka Ginger) was there to see me.  I started to walk up front and Lonnie came walking out of the lab and headed to the waiting room -- he didn't see me.  When I got out there Ginger gave me a big hug and got tears in her eyes.  THEN the hug came from Lonnie -- we embraced and didn't let go for quite awhile.  We both had tears!  Then my appointment coordinator Sherri called out, "hey, you are all going to make me cry!".  You see even though Lonnie and I live in the same town I had not seen him since before I was tested for compatibility.  All of our talking had been done over the phone.  This was the first face-to-face meeting since we knew the surgery would definitely be taking place, and it was an emotional one!!  Lonnie has lost quite a bit of weight and is tired -- especially in the afternoons.  Every night while he sleeps he is hooked up to a dialysis machine.  Just 29 short days from now he will be able to get rid of that machine and hopefully start returning to his normal life...and put some weight back on!!  Right now his diet is very restricted so it will be good to get him back to eating again.

As far as me, I have been eating just fine! :-)  I think my kidneys appreciate it.  Today we went to Isaiah's ballgame.  Tomorrow night I am taking my kidneys to Bunco night!  There is so much laughing and talking that goes on there that my left kidney will probably be happy this is the last Bunco night it will ever have to attend -- well unless Lonnie takes up Bunco!

Feeling good tonight!!

The Case for Organ Donor Leave

I was so excited in my last post about actually getting my surgery scheduled that I neglected to mention what happened on Wednesday afternoon.  As you may have read in an earlier post I have asked the Marshfield Clinic to consider adopting an Organ Donor Leave policy that would make it easier for potential donors to take time off work without lost wages.  The Personnel Review Committee(PRC) had graciously agreed that they would place the item on a meeting agenda for June or July.  Wednesday afternoon Human Resources called me to tell me that the next PRC meeting is scheduled for Wednesday, June 23rd at 7:30 a.m.  They have invited me to be there(by phone actually since we work in different buildings) to speak about the merits of such a policy!  I am so proud of them for even considering the implementation of this!  At Marshfield Clinic we have over 800 doctors and over 6,000 staff members.  We are a nationally and internationally recognized clinic and this policy goes along with our mission of excellence in healthcare to all.  So, if you get a minute on the morning of June 23rd, and it happens to come to mind, please say a little prayer that the committee will consider recommending this policy to our board of directors.  It is a fact that many people considering donation see finances as a barrier to going through with the donation.  Anything we can do to remove that barrier should be considered.

I also failed to give an update as to where my kidneys have been travelling the last couple of days.  On Wednesday I took them to El Mezcal.  I believe I may have heard my right kidney mocking my left kidney as to how it may not get to have as much Mexican food once it is in Lonnie's body.  We also have been watching a LOT of baseball, although kidneys tend to hide at baseball games because there is always a chance of getting hit by a stray ball.  And to celebrate our scheduled surgery I did buy them one of my very favorite candies -- Milk Duds! 

Feeling blessed!!

It's a Date!!

At 2:15 today I got a call from Elise telling me that our surgery could be Tuesday, July 13th.  I didn't hesitate at all to say that sounded great!  So, the plan is to do the surgery on that afternoon.  My time in the hospital will probably be a few days.  I will then be off work for approximately five weeks.  Lonnie will have to stay in the hospital longer -- how long exactly will depend on how his recovery is going.  Hopefully he will have a relatively short stay as well.  I called Ginger this afternoon to let her know.  She told Lonnie that I wanted a date with him on July 13th and that I wanted him to wear a suit and tie.  He immediately said, "I suppose she wants flowers too!"  Well...of course :-) 

Once again things worked out great as my staff all has vacations planned starting that week and ending approximately 4 weeks later.  Now we won't have to worry about getting fill-in help from other areas of the clinic.  Also, the Nekoosa baseball tournament is scheduled for the weekend before my surgery, so I will get to go to that and help out with the weekend.  And I would be neglectful if I didn't mention that July 13th also happens to be my dear friend Lisa Lancour's birthday!

It is so great to finally have a date set in stone.  Now we can work on logistics.  Lonnie and I need to go together to Froedtert one or two weeks before the surgery for our pre-admission testing and to meet our surgeons.  I suppose that technically means the surgery will be our SECOND date! 

Thank you to all of my friends and family for your support, kind words, and love!  I couldn't do it without you!!

Still Waiting On A Date...

Elise had hoped to call me today to set up a date for surgery.  I did not hear from her by 1:00 and I know the transplant team meets all afternoon on Mondays-- so, hopefully tomorrow we will connect and get the date set in stone. 

Today I took my kidneys to Mt. Olympus in Wisconsin Dells with Josh's class for a school field trip.  I didn't want to exercise them too much, so my girlfriends and I just spent the day lounging by the wave pool.  I thought every day I post from now until the surgery I can tell you the fun times I have been treating my left kidney to before I say goodbye...and also the extra treats I have been sharing with my right kidney before I make it work overtime.

Stay tuned...the best is yet to come!

Stamp of Approval!!

This is the most exciting post I have done to date on this blog.  Today at 5:00 p.m. Elise called me from Froedtert Hospital to tell me that the transplant team met today and approved our case.  The transplant date can now be set!!  What a call to receive!  Wow -- I can't even begin to put it into words.  Relief, joy, excitement, accomplishment....all the feelings came over me at once.  I was at Isaiah's baseball game at the time of the call.  The teams were just warming up so Mike was on the field helping coach -- I had to wait a bit to tell him.  So I called my parents first.  Then I called Lonnie and Ginger.  Ginger answered and I told her I was calling to ask her husband out on a date -- I told her I thought maybe we could go to the hospital for our date.  She said, "did you get approved?"  I replied "yes I did!"  She told Lonnie and he yelled, "Really??"  We talked a bit longer and then I said, "so is Lonnie happy?"  Ginger said, "well he has tears in his eyes!"  I didn't know whether to cry or laugh at that thought :-)

As you have probably gathered from the above paragraph the cystoscopy testing I had done this morning turned out just fine.  In fact, the urologist says my bladder is "shockingly normal"!  Imagine that.  He was quite an entertaining doctor and was a real treat to see.  He is from the Bahamas and at one point during the exam he was happy to hear something his assistant told him -- so he said, "well, HAPPY BANANAS!!"  I may adopt that phrase.  I have never heard that one before -- maybe that is a Bahamian saying?

So come Monday Elise will call me back and we can talk about dates for the surgery.  She said the biggest challenge is being sure both transplant surgeons are available at the same time.  Lonnie and I will each have our own surgeon since they will have to do both surgeries simultaneously.  It will likely be on a Tuesday or Wednesday in early to mid-July.  We have a trip planned to see my dear friend Amiee and her kids Abby and Blake, Amiee's sister Kelly and family, and their parents in southern Illinois for the Fourth of July and I do not want to miss that!  It will be our last hurrah for awhile!

I want to thank each and every one of you for your thoughts, prayers, and kind words.  They are very humbling and inspiring to me.  I never dreamt that I would have the opportunity in my life to give such a gift.  I am in awe of modern medicine and what we can give to others.  I am also so very aware of the hand of God in every step of this process.  His plan is so much greater than any of us can ever comprehend.

Just One More Test...

Let me start out this post by saying that sometimes in hindsight you see that events that disappointed you turn out to be a blessing in disguise....

Tomorrow I planned to take the day off of work to go to Mt. Olympus in Wisconsin Dells with Josh's class.  They have been predicting rain for Friday all week.  This morning his teachers made the decision to postpone the field trip to Monday.  Josh and I were very disappointed because I have patients on Monday and I now wouldn't be able to go.  But, as it turns out we were having staffing shortages for Monday afternoon and it actually worked out better for me to change patients from Monday to tomorrow and then I could once again go along for the trip!  This seemed like a great thing...but then it got better. 

As I said in the last post, Elise is planning to present our case to the transplant team tomorrow.  Today at 4:15 she called and said that the nephrologist was still a little concerned about the slightly abnormal urine test I had and he would like me to have a cystoscopy done at Marshfield.  She said the team could still approve our case, but it would be pending the results of the cystoscopy.  After I talked with her I went up front to my nurse's station.  At that point one of our incredibly wonderful appointment coordinators, Laura, came by on her way home.  I told her what I needed to have done and she offered to call Marshfield to arrange it for me.  After a little bit of begging on her/my part we were able to schedule the testing for 10 a.m. tomorrow.  Due to the fact that I had just signed back in to work tomorrow I had a light schedule and am able to go.  The urologist will give me the results immediately and they will be able to fax that to Froedtert in time for the transplant team meeting at 1 p.m.  Elise was thrilled when I called her back since she will now have a complete case to present.  SO...assuming all is okay with those results we should have an answer tomorrow as planned. So the field trip being cancelled was a blessing in disguise...now I can get my testing done in time for the team meeting AND I still get to go on the field trip!

On a side note, Elise told me that there is a situation in New York right now where the kidney donor was not fully evaluated.  It turned out the donor had cancer and now the recipient has cancer.  In Elise's words, "people are getting sued all over the place!"  So they are being extra cautious at Froedtert right now.  And who can blame them??

Taking it to the "Team"

Today I received an e-mail from Elise telling me that she will be presenting our case to the transplant team this Friday afternoon.  Everything looks to be in order and she feels it is ready to go.  Then it is up to them to decide whether they will approve the surgery.  From what I understand the team is made up of doctors, nurses, social workers, coordinators, and other medical personnel.  It is their job to make the final decision as to whether they feel the transplant can take place.  If they approve it -- then we can schedule it!  Elise is hoping she can get back to me on Friday, but if not she will for sure call me on Monday.  I am hoping it is Friday so I don't have to wait through the weekend!

I spoke with Ginger tonight.  Lonnie started dialysis this week and he is very tired.  The kidneys failing and the long days of dialysis are definitely taking their toll on him.  Please pray for him if you would.  I hope I can make this time of dialysis and weakness as short as possible for him.  If we can set a date then maybe he can see the light at the end of the tunnel! 

Another living donor advocate called me tonight to talk with me.  I was not able to get to his call so I will talk with him tomorrow.  It continues to amaze me how the hospital double and triple checks everything from the physical tests to the mental assessments to the social interviews.

Hopefully the next update will have the FINAL ANSWER!!