The Waiting

Kate wrote today about a synopsis of our week was like, and you might be thinking to yourself, well the surgery only got delayed a week why is it so frustrating.  As you read this you will realize where the frustration comes from, also you need to remember that to this point we haven’t told my work yet, and we haven’t gone public with the news.  So for most of you, you have only known about the donation for a couple of months.

Back to the story: December 2011

After Ashley’s insurance approved her we were contacted by the UNC coordinators and they informed me that we would need to go through with the colonoscopy and endoscopy.  To be honest I was trying to get around having to do this, I wasn’t particularly excited about it, and as a man it is something you grow up dreading the thought of.  There is one other problem with this though, UNC knew they were going to make me have this test since June, I asked them on multiple occasions if I should get this done while we had time, and they told me not to do it, they could make it happen quickly when it was time (I honestly wasn’t sure what that meant, I thought maybe they would do it when I went back up there).  But it meant for me to go back to Dr. Gilbert and schedule an appt with a local Gastroenterologist.

Well I don’t know how many of you have had to setup one of these appointments but they don’t take you next day, so I had to go meet with Dr. Gilbert so he could get me a referral to Dr. Niemark. The first available appointment they had was on Dec. 14th, which to be honest seemed fairly quick to me, however this was just to meet him and schedule the procedure at a later date. 

At this point I guess I should mention that for my Tuesday night men’s group we had been reading a book called the mystery of marriage (make your own joke).  I brought the book with me to do some studying and make some notes while I was waiting. Dr. Niemark was an incredibly nice man and when he found out what I was doing he was very interested and immediately suggests that they would waive my co-pay.  It was a huge blessing and totally unexpected but very much appreciated.  This also was the first Dr. appt. where I sat in an actual doctor’s office to discuss what was going on. 

When he walked me down to the examining room I put the book down on the table, he noticed it and remarked that marriage really was a mystery and he asked if he could have it when I was done with it. Kate and I have gone back and forth on this, she says I should have given him the book right then and there, but the copy that I had with me was my copy for the bible study, I had already read it and highlighted all the important points so I couldn’t give it to him. 

We Scheduled the Colonoscopy/Endoscopy for Dec. 21^st which 3 of my appointments have been on, including my nephrologist appt. in January and now the surgery is scheduled for that date as well so maybe it is a sign.  He told me that they would do everything they could to make sure that insurance would cover as much as possible; since I was so young he thought insurance might decline to cover the procedure.

Now a colonoscopy itself is not that big a deal, they knock you out for it so you don’t feel anything (this would be the first time I was ever put under) it is the preparation that is the bad part.  My preparation involved something called citrus nitrate you buy it in a 14oz bottle it tastes like cough medicine, followed by 64 ounces of Gatorade mixed with miralax over 2 hours.  Basically you spend a whole night on the toilet, the only redeeming fact is you really aren’t allowed to eat anything the day before so there aren’t many solids coming out; my only piece of advice is to make sure you get the moist toilet wipes, they are a life saver.

The next day Kate took me to the office because you can’t drive home and we waited to go in the room.  It was also my first experience in a hospital gown, which for this particular procedure make perfect sense.  I heard one guy come out and the doctor said everything looked good but there was still some stool so they couldn’t see everything (I thought to myself that guy really didn’t do the prep right cause there is no way there could be anything left in there).   

They rolled me into the room, turned me on my side, told me to take a deep breath and I woke up in another room. (i was going to post the pictures but Kate said that was just wrong) It is crazy what they can do to you without you knowing, when Dr. Niemark came out to check on me I gave him a copy of the book (you didn’t think I would forget did you?) which he appreciated and when we got the bill several weeks later he had written of $140 dollars of the charges.  What an amazing blessing.

All of the tests  from the procedures came back negative and we were once again cleared to donate at least that’s what we thought, but there is always more to the story.

Surgery Update: A Snapshoot of our Week

Monday, January 30^th:

3:30 - Jeremy’s case is presented to the board

                5pm - No Word

Tuesday, January 31^st

                Morning – UNC approved Jeremy!!!!!  Moving forward for February 14^th

                Afternoon – start the process of booking apartment and submitting dates to work

Wednesday, February 1^st

                Morning – Apartment booked and confirmed! And Work dates submitted

                Evening – UNC coordinators (both Jeremy’s and Ashley’s) think the 14^th is doubtful.

Thursday, February 2^nd

                Morning – UNC takes away the 14^th as a surgery date.  Our next hope is the 21^st.

Who knew 4 days could bring so much up and down.  The UNC final board approval is what we have been waiting on for a year and a half.  It was our goal.  Something to rejoice and celebrate.  But when we got word of the approval it did not bring much joy or excitement.  There was a heavy shadow hanging over us – Ashley’s Medicaid has not approved Jeremy.  There has been a frenzy of phone call and emails to both coordinators.  But it basically comes down to Medicaid.  They have 15 days to approve Jeremy and they have said to stop calling, they will take as much time as they need.  

So this morning, Ashley’s coordinator emailed and said the surgeons would not hold the 14^th any longer.  The 14^th is no longer an option and they are now holding the 21^st.  The 21^st was our last choice and gets complicated for several reasons.

1.       I (Kate) have to be in Florida on March 1^st for a weekend show – my largest in the spring.  That does not give a large enough window for Jeremy’s recovery

2.       We will have to figure out a new plan that might involve flights back and forth, family members driving back up, etc.

3.       Our apartment is only available till March 2^nd – so we will have to find another place for Jeremy to stay after that. 

4.       And the biggest – we are ready for the surgery to happen NOW!

There is still so much unknown.  Jeremy does not have a confirmed pre-op date.  And the biggest issue is the Medicaid approval.  They have 15 days to give a response.  And we are not guaranteed an approval – remember after all they denied Ashley and it took a several month legal battle to get the approval. 

With all the ups and downs we have experienced, this week did bring a great victory – Jeremy is matched to be Ashley’s donor!  Even though it is a struggle, we have to change our mindset.  We have to rejoice that Jeremy is a match and that the surgery is almost here.  We have so much to be thankful for!  But the battle is not done.  Please pray for Medicaid approval.  God hears our bold and audacious prayers.  We know He has the perfect timing and the perfect plan.  Please also pray that everyone involved can relinquish their worries and anxieties to God. 

Philippians 4:6-7
6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Thank you for your support and prayers through this all.  We really could not face this without the love and support from our family and friends. 

2 Corinthians 4:16-18
¹⁶ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷ For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸ So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

               

Groundhog Day

Kate and I found out today that the surgery date is most likely going to be pushed back to Feb. 21st.  It is starting to feel like Ground Hog Day the movie, we keep getting told dates and then they keep getting moved back.

This is frustrating for Kate and for many reasons which you will find out as the story continues.  The problem with this is that Kate has a show on March 2^nd that she has to be back to Florida for, and most likely I won’t be able to leave North Carolina until March 4^th.  We are currently waiting for the Insurance Company again! They have to approve me as the donor; legally they have 15 business days to respond, and they told the coordinator they weren’t in a hurry.

If you could please lift this up in prayer for us we would really appreciate it so that they make their decision sooner, it is possible if they make the decision by the 8^th we can still do the surgery on the 14^th. 

After a long day with some frustrating news Kate and I decided to ride our bikes up to target to blow off a little steam.  You’re wondering what could happen on a 1 mile bike ride to a store that could possibly be interesting?

A)     Bike Crash

B)      Flat Tire

C)      Shoe Lace gets caught in the chain

D)     Weird walking fat guy try to fake punch you on the sidewalk.

That is correct option D, we were riding up the sidewalk and this guy is walking towards us, I kind of figured he would get out of the way and let us go by.  He figured he would stare us down and then throw a fake punch while saying an incoherent word.  Not sure how I stayed on the bike while trying to block it but we just kept on riding, I figured there was nothing good that could come out of circling back to figure out what that was all about.  The rest of the ride their and back home was uneventful thankfully. 

Back to the story: July/August 2011

When we left the story I had been cleared again to donate by a hematologist who determined my low iron level was acceptable and my enlarged spleen was only misshapen.  UNC told us they would submit me in front of the board at the next available meeting.  This was in July/August of 2011.  We didn’t hear anything back from the hospital which wasn’t a large concern because we were hoping to the surgery in January anyway, but when we finally went to check in we were told the donation was on hold.

It turns out that Ashley’s insurance was denying her, and saying they would not pay for her to get a kidney.  Even now this makes my blood boil, check that it makes me twice as mad now as when I first heard this because I understand more what Ashley has had to go through.  To know you are going to need a kidney, find someone who is willing to donate and is an actual match, and is actually healthy enough to donate, only to have an insurance company say they aren’t going to pay for it.

They were basically telling her that her life was not worth the money they would have to spend, what a terrible thing to say, yet alone to have to hear.  Ashley I am so sorry that you had to hear that and go through that, and I just want to let you know that you are worth it. 

We spent the next several months in a holding pattern while Ashley had to hire attorneys so that the insurance company would cover the transplant.  This was a time where we were praying a lot and we had asked for a lot of prayer from all of you.  I just want to take this time to thank you for all of your prayer because on Dec. 6^th, 4 months later as the case was about to go to trial the insurance company dropped the case, and the surgery would be covered, it was a very exciting day and this put Kate and I back on the clock. 

Finally Board Approval

It looks like things are starting to come together, we got the approval from the doctors today, I feel like I should be more excited.  The only problem is the first sentence my coordinator said after we got the approval was that we are still waiting for Ashley’s insurance to approve me for the donation.  So one last hoop, tell me where it is, tell me how to get there and I will jump through it.

Kate and I have slowly started packing getting our stuff together and thinking about what we need to take for the 3 weeks in Chapel Hill, we are taking suggestions for anything we need to take, or anything we should do in Chapel Hill.  Please let us know in the comments. 

I’m going to take a day off from the story today and make an argument for why you need to be in a small group, bible study, life group, or whatever they are being called now.

Proverbs 27:17 - “As iron sharpens iron, so one person sharpens another.”

My men’s small group was tonight, if you remember from the story I joined this group at the same time I signed up for the trip to Peru when I met Ashley and Kate.  I am the only guy that has been in the group since then, a couple of guys have been in the group for about three years, but the entire original group has cycled out. 

This is going to be the last week before we leave for UNC, a couple of the guys have agreed to step up and host the group while we are out of town.  It is really exciting to see what God has done with this group, and there is nothing better than to know that whether I am here or not the group will function without me.  I am so proud of these men who have become such an important part of my life, it is so humbling to see them step up and take on leadership roles in the group and throughout the church.

Matthew 18:20 “For where two or three come together in my name, there am I with them."

Now let me let you know something about me. I have no idea how to act when people are telling me that I am doing a great thing.  I get totally uncomfortable when people make a big deal out of this.  It isn’t lost on me the importance of this and I understand how people feel about it, but I don’t think I deserve pats on the back or an award or anything.

I’m also not very good at asking for help, or asking for things.  Tonight the guys offered so much help that I wasn’t sure what to do with myself, it is truly humbling to lead this amazing group of men.  At the end of the group they prayed over me, and that is where the verse above came from because God was definitely with us tonight. I haven’t been prayed over a lot but you could definitely feel his spirit.  Even Abby was in the circle putting her prayer in as well.

So thank you for indulging me today, tomorrow we will get back to the story and hopefully be talking about how we got the insurance approval and Kate and I will be on our way to Chapel Hill on Feb 8^th.