A Journey Like No Other

There is not any other way to start this post except to again say that I AM BEYOND BLESSED, and God’s timing is ALWAYS perfect. While I am thankful everyday for the incredible gift that has been given to me, today is a day that reminded me of just how incredibly blessed and thankful I am.

Today I received a letter from the mother of my donor. There is a waiting period that must follow the transplant before we are able to contact the donor or recipient. It has been 1 year and 4 months, almost exactly to the day, since I was given the amazing opportunity to experience life in an entirely new way, and in some ways “start over”.I have prayed over this family daily since I was place on the transplant list in April of 2013. I have prayed that God would give them an overwhelming peace and comfort when the time came for me to receive their gift.

As I opened the envelop I was unsure of what was inside, it was sent from Mayo Clinic in a large packing envelope, and I was not expecting anything to be shipped from them recently. When I opened the folded papers inside, a handful of pictures fell out, and I knew what it was. I immediately put everything back inside and just sat on my bed and cried. I have wanted to know who had been the giver of such a life changing gift for me, but at the same time I am very emotional every time I think about the fact hat someone had to die in order for me to live as I do. After a few minutes I told Brandon what was inside the envelope, he asked if I was going to read it yet; I picked up the package and took the contents out once again.
As I began to read the most beautiful letter from another mother, emotions and hurt for that entire family consumed me. I knew my donor was very young, that is all of the information I was given the morning they called to tell me they had found a match.

Julianna was BEAUTIFUL and full of life, many things that she enjoyed are things that I enjoyed as a kid, and many that I still do. Her mother told of her love and devotion to Christ and is at peace knowing that she WILL see her daughter again. She was a fan of theatre, had starred in many performances at the local performing arts center, and was even cast as Tinkerbell in the production of Peter Pan after her passing. Tinkerbell was a shimmer of light and sound whenever Tinkerbell showed up. How amazing to still be part of such a huge production and still performing even after life on Earth. The face of both Julianna and her mother are eerily familiar to me. I recognized the face of Julianna as soon as the pictures fell from the folded envelope, and as I thumbed through the rest her mother became more and more familiar.

Julianna was diagnosed with a Brain Tumor and taken to Shands Hospital in Gainesville, Florida where a sugury was scheduled for the next day to remove the tumor. The day after Julianna had gone through such a traumatic event, she had a massive stroke and lost all brain activity, this is when her life here on Earth ended and I was given the most amazing gift from a beautiful, selfless 14 year old girl, who had her whole life ahead of her.

Not a day goes by that I do not think of my donor and I now have a name and face to accompany my thoughts and prayers everyday. This family lost their youngest child, something that I could never imagine, and decided to let her live on by giving complete strangers the gift of life and health. I am eternally grateful and indebted to this family and Julianna.
THANK YOU ❤

WOW, I have surpassed the 6 month mark since my “new addition”!! Every day is still amazing to me and I am becoming a little bit more open about my story and what brought me to this season in my young life. I always get a crazy look or question when people hear that I have had a transplant, 🙂 My favorite so far is ” really? you don’t even look like it!” Im not sure what a transplant recipient looks like, but apparently I don’t match the description! lol! I have been doing great with recovery and am in awe of how much everything has changed over the course of the last 6 months. I feel so much better and am not constantly dealing with the high or lows in my day. I actually know what it feels like to have a day where I feel fairly consistent. When I was still on insulin I had days that were awful and eventually I had gotten used to them. My moods would change erratically, I had migraines and I was always tired.

Since the transplant I have a new set of meds, but am so excited to say that none of them contain a mood stabilizer or anti depressant, which is HUGE for me. I had been placed on an anti depressant when I was 15 years old due to the hormonal changes that came from the insulin and fluctuating blood sugars, and had been on it up until July 23, 2013. I was able to start back to work in January and honestly I was scared to death that I would be sick and that I made the wrong decision to go back, but it has been great and everyone I come in contact with is so supportive and I have yet to have any problems. There are so many small things that I am still noticing, and its exciting to know that the road only gets better! A lot of people have asked how long my new pancreas will last, and the answer is…technically my new pancreas is supposed to have a life of 8-10 years in most cases. But I pray every day that God will wrap his hands around my pancreas and make it last as long as I do! If it does happen that the life of my pancreas runs its course before I my time is up, I will be back on the list for another hand me down!

I am still and always will be an advocate for Type 1. I told a friend after my transplant that if I had the option to give the new pancreas to a child with Type 1 that I would willingly and without hesitation hand it over and go back to the old way of living. No child deserves the life that diabetes has to offer.

My God gave me a life story far better than I could ever have dreamed of!!

Natalie

In the last 24 hr I have gone through almost every emotion there could be. It began like any other Monday night. We had put the kids to bed and were getting settled ourselves. Around 11:20pm my phone rang and immediately 3 things went through my head 1) its Mayo 2) its one of my closest friends, she is the only one who has ever called that late or 3) something has happened..like an emergency. I looked at my phone and all it said was FLORIDA, and the area code was 904, which is Jacksonville, my heart sank. I answered and the lovely lady on the other end informed me that they had found a match and since I lived so far away that I needed to leave to come there as soon as I could…..the organ was scheduled to be procured and back at the hospital between 8 and 9am.
We rushed to get the kids up, threw some extra stuff in our somewhat packed suitcases that we have been living out of since April, all while trying to explain to our kids what is going on and why we woke them up. I was crying and trying to sort out the emotions and feelings that were running through my mind. I was scared, more so than I had ever been in my life, I felt guilty for being scared because I had wanted this and it was here…why was I freaking out? I couldn’t pull myself together, and when my oldest started crying and asking if I was going to die…I wanted to just get back in my bed and pretend like the phone had never rang. She was trying to be strong and she couldn’t hold it in any longer. It broke my heart to think that my kids were this scared and for what? Something I had decided on, that was out of the normal “DR” visits that had brought me this far in life?
We met Brandon’s mom about 30 minutes away to give her the kids and start the 6 hour night trip to Jacksonville, Brandon had been up since 6am and sleep was not on the agenda. I cried most of the way to Jacksonville, I was terrified of what could happen, how would we afford everything and how we would arrange things for the kids and so much more. My dad was driving to Jacksonville from Alabama alone in the middle of the night and my mother was driving from Gulf Shores, where she was on vacation, alone in the middle of the night as well. Anyone who knows me, knows I worry myself to death and was scared something would happen to one of my parents while they were rushing to be with me. As we came into the city I became even more anxiety ridden and the emotions were taking over.
We arrived at Mayo Clinic around 5:45am. A room was waiting on me, Room 329 on the transplant floor. They immediately began prepping me for surgery, took me to get and xray of my heart and lungs to make sure I had no fluid and that everything checked out. We came back to the room and were told that they would be back in a few minutes to do an EKG..normal procedure. A few minutes passed and they came back, but then left suddenly. Around 7:30am 2 nurses came back in and the first words from her mouth were..”Im so sorry Mrs. Mathews, the pancreas is no good” I just stared at her. Brandon asked if she was serious and of course she said yes. I was filled with another wave of emotion, totally different from the emotions I had while driving to Mayo. I wanted to cry, scream, cuss, question God, question the nurses, hate everything and I couldn’t do anything but just sit there.
We were told this was a possibility when I was placed on the list, however human nature allows you to think that it won’t happen to you. I was so angry and the question WHY was resonating like a million screams all at once. Why would God allow me to see my kids suffer and be terrified of me dying, why would he allow for me to be filled with such emotion and have spent those 8 hours in complete fear, why would he allow for us to spend so much money to come down at the spur of the moment, money he knows we don’t have laying around, just to send me back home with feelings of despair and hopelessness? I have been saying all along that I WILL trust in HIM and I believe there is a plan, but my human nature wants to understand the plan and make sense of everything, and I can’t.
Every night I pray for God to prepare the organ he has for me, prepare their family and give them peace. To prepare my body to be able to accept the organ without complications. I pray for God to let it happen sooner than later because in my head it would make more sense..the kids are out of school, I am not working etc. But on the way home God kept telling me…see, your plan failed. I have complete faith that He will allow this to happen in His time. If I don’t secure a job, so be it..that is part of the plan. If it happens a year from now. so be it…that is part of the plan. So many things that I have consumed myself with and tried to control and beg God to work in my favor on my terms are no longer relevant.
In time HE will provide the organ, the finances, the peace and the security of knowing that this is His plan and all things will work out according to His will.
Thank You from the bottom of my heart for your support, encouragement and faith that will carry me through this journey! ❤
Natalie

Its been almost a month since I posted, but there really has not been anything exciting to post. I went on May 20 to have my monthly blood draw, and it was sent to Mayo. I found out that they only test my HLA every 3 months, so when I called to check and see what my HLA was, I was a little bummed that they couldn’t tell me anything:(

While I am waiting I am still trying to find a job, which is not going that great unfortunately. I decided to tell people about what was going on before I found employment and now I am afraid that deciding to has come back to bite me! I have interviewed at places, they say I do great blah blah blah, and then they decide to go with another applicant. The places I have interviewed at, know someone or they have a connection to someone that knows my journey and all I can figure is they know. Let’s be honest…who wants to hire someone who could potentially have to leave at a moments notice and be gone for 3 months…..BUT at the same time, the same thing happens to those teachers who have babies during the year.

I am frustrated and feel a little defeated, I know this is all part of the plan, but it is really hard to focus and stay positive about the plan God has when everything feels like its not fitting into place. That’s the human nature, I suppose:)

While we still have no idea when we will be called, we are still looking into our finances and how we will be able to afford all of the related expenses etc. We are starting to pull together some fundraisers with the help of some great friends and I will keep everyone posted about them:) Feel free to share the blog page, and thank you all for your support!!!

Natalie

This information came from transplant living.org. It is eye opening as far as realizing the exent of care and the cost of care that is associated with this decision..YIKES! I know everyting we need or will need will be taken care of. We have set up a savings account at Peach State Credit Union, so if you make a donation via PayPal it goes directly into that fund. If you would like to help out and want to go to the bank, all they need is the member ID number(85599) and they can place the donation into that account as well. I cannot even begin to tell you how much everyone’s kind words and offers of support mean to us. The journey is just starting:)

Costs

The cost of a transplant, including preliminary testing, the surgery itself and post-operative recovery costs vary across the country and depend on the hospital and organ type. These costs start to add up, even before your transplant. Therefore, patients commonly rely on several sources to help pay for their medical and non-medical costs of pre- and post-transplantation.

Medical Costs

Medical costs include:

• insurance deductibles
• insurance co-pays
• pre-transplant evaluation and testing
• surgery
• fees for the recovery of the organ from the donor
• follow-up care and testing
• additional hospital stays for complications
• fees for surgeons, physicians, radiologist, anesthesiologist and recurrent lab testing
• anti-rejection and other drugs, which can easily exceed $2,500 per month
• rehabilitation

Non-Medical Costs

Non-medical costs include:

• food, lodging and long distance phone calls for you and your family
• transportation, to and from your transplant center, before and after your transplant
• plane travel to get to your transplant hospital quickly
• child care
• lost wages if your employer does not pay for the time you or a family member spends away from work
• If your transplant center is not close to your home, lodging close to the center before and after your surgery. Some centers offer free or low-cost hospitality houses for you and your family.

We heard from the Mayo Clinic this week and they have approved me to be placed back in “ACTIVE” status. The only thing is since I am now considered a harder match,it could take 1 month or 1 year to find someone with a match. I am first on the list, because of the points  have due to the HLA count:) Iam hoping and praying that the cal comes sooner than latr for many reasons….I have applied to manyjobs recently and am scared to death that if I get a job fo the upcoming school year, that I will be called at the start of the year or something awful like that, I want to be able to take my kids down to Jacksonville with us, because 30-40 days without them would seem like an eternity for them and me and I’m sure for whoever is watching them as well:)

One thing we are going to hav to deal with in the upcoming months as well s the time after the transplant, is finances…the average cost of a Pancreas Transplant is upwards of $120,000 after insurance. This includes bills, medicines after transplant, food, lodging etc. We will live in Jacksonville for 30-40days after the transplant,  is mandatory and I will be seen at Mayo every other day to test my blood and all my meds etc. We are hoping that we can raise enough mony through fundraising and savings for Brandon to be able to stay with me in Jacksonville, as of right now, if they call…he only has 1 week o paid leave, so i wouldbe a huge financial stuggle and overwhelming time fo our family. I have placed a “Make a Donation” buton on the page, and we are in the works of trying to organize fundraisers etc. We know that our God will not leave us in a bind and he will provide for every single need and we are trusting that at evey step.  

In my last post I had mentioned that they told me I had no antibodies and this was seemingly a good thiing. WELL…since then I was notified that I had been placed as Status 7, meaning that I was not suitable for transplant at this time because of some blood work that they needed to recheck. Once they recieved the bloodwork and did the testing, I would be placed back in “approved” status. After a few days of being frustrated and annoyed beyond explanation, I finally was able to get the sample drawn and sent to Mayo. The test was an additional screening for my antibodies, they wanted to make sure that I really did have 0 antibodies or HLA factors in my blood.

I heard back from Mayo Clinic yesterday, and come to find out I actually have 88% of these HLA markers…I was shocked first of all that they could have made such an error and told me a completely different scenario just 2 weeks before, and second I was devestated! I was thinking to myself…GREAT, now my wait time is increased and everything you guys told me before is now considered crap..right?! So naturally I asked what this meant, and if my wait time would be prolonged. Sandy..my awesome coordinator at Mayo explained it to me like this…when they thought I had 0 HLA factors, my pool of donors was large, because I was able to pretty much match with anyone with Type O blood. Now, the pool of donors that they can pull from has become significantly smaller…as I am now harder to match of course.
Right now the number of people on the waiting list is 7, and only 4 of us are considered active. If a pancreas becomes available and the person at the top is a match and I am also a match, they will give the pancreas to me because I am the harder person to match, regardless of how long that person has been on the list.

Now, they take blood samples every 30 days and do the same tests again because your HLA can change from month to month based on many different factors…if I were sick, or stressed out a lothad a blood transfusion(which I don’t plan on), and even the fact that I have given birth to 3 children will cause the HLA to fluctuate. With all this information I was a little discouraged, they assured me that the wait time was still projected as the same because the list was so short.

I am still trying to decide how to handle everything. I am scared if it does not happen soon, that it will impact the ability to find a job or accept a job. Usually school systems begin looking for new hires in the late summer and if I am living in Jacksonville, I will not be able to apply..much less interview for a job. And if I happen to be here and the transplant has not happened yet…I am scared as soon as I am hired I will get the call and have to leave a new job, classroom and school at the drop of a hat and that would be terrible!! I keep telling myself everything will happen in God’s time and he already knows the date, and the outcome and every minute detail of the process and how it will all unfold….amazing to me that would transpire before I was even formed. I know trusting Him is the only way to have peace, but at the same time….my human nature and mind get distracted by everything that could be, and the “what if”. Clinging to Jerimiah 29:11:)