Share a Spare...on the Road to a New Kidney - Blog Entry #1
Hi, this is Carol, Sam's mom, writing Blog Entry #1.
For those of you who know me personally, I usually am not at a loss for words; either in speech or written word. I guess I have the gift of the gab! So when Lauren from Children's Organ Transplant Association (COTA) encouraged Joe, Sam and me to blog about this experience, I thought "No problem - I love writing". However, it has taken me several weeks to sit down and actually create a blog entry. Why? I don't know...I can't put my finger on it. I am a task-oriented person that likes to check items off of the "To Do" list and this has definitely been on that list. Each time I thought about what I want to share with people who visit Sam's website and read what I have to say, I would not have a clear thought in my mind that gave me a place to start. So tonight, the 23rd of January 2016, I decided to just sit down at the computer and put something down in words to kick start this part of sharing our journey with those who would like to join us.
First and foremost, my heart is truly overflowing with thanks and praise to God for bringing us this far. His love and provision is never-failing. This was by far the scariest thing that I have ever encountered in my life. When we first found out Sam's kidneys were irreversibly damaged and that he will need a transplant, I was in shock and very scared. Then as time went by and the doctors helped us get Sam's overall health stabilized, we were able to better comprehend what we were dealing with and how to go about treating Sam's kidney disease with a transplant. One of the ways that I coped was to learn as much as I could about the disease and the transplant process. The doctors gave us all kinds of information and resources to get that education. Another praise is that we live 45 minutes from a major hospital in Milwaukee that specializes in kidney transplants. That gives us peace of mind - knowing that Sam's doctors are close by compared to the distance other families have to travel for this type of specialized health care.
For those of you who are parents, you know that when your child is ill, whether it is a minor or major illness, you want nothing more than to see them well. Many a night, I prayed to God for a miracle to heal Sam completely. He still could choose to do so if that is His will; however, during these past 10 months since we found out that Sam was in Stage 4 kidney failure, I have seen God's hand in so many aspects of this experience that assure me He is answering my prayers for Sam's life. We have received an outpouring of love, encouragement and support from our family members, friends, co-workers and people all over the world. No exaggeration there - I have emails from a family member in Holland and a former co-worker in Greece. Not to mention all of the people here in the US that are praying for Sam and donating to COTA in honor of Sam. My co-workers have shown concern and love for Sam, many who have not yet met him. Our church family and Sam's friends and their families have embraced our family in ways that overwhelm us. Our COTA volunteer team members are angels on earth who are giving of their time and energy to help us. What is really amazing is the response from people that don't know Sam personally, yet when they find out about his need for a kidney transplant, they reach out to us. Is not all this a miracle!?!?!
The most profound aspect of this experience is watching Sam handle what God is allowing to happen in his life. I am not going to speak for Sam in my blogs however I am going to brag about him every chance I get. From my vantage point, Sam is handling this experience better than I am! He is going to work, hanging with his friends, looking forward to getting his GED test done this May, trading cars for pick-up trucks, playing in the worship band, fixing his motorcycle and doing all the things a 17 year old guy does. He is maturing right before our eyes and, now that he is going to turn 18 this Tuesday the 26th, he will be more involved in his healthcare decisions and other aspects of this journey. I am blessed beyond measure to have been chosen by God to be Sam's mom.
I will take a few minutes here to give you a medical update. Sam's kidney-related labs as of 12/22/15 were stable which we are of course thankful for because it allows us time to find a living donor. He has labs every 4-6 weeks to keep a close watch on those numbers. I went through the living donor screening process and all the tests I completed show I am healthy enough to donate a kidney. The second-to-last test showed that I have a glomular filtration rate (GFR) of 85. GFR is the best test to measure one's level of kidney function and kidney volume. A GFR of 85 is the lowest that the Froedtert donor team will let a person donate one of their kidneys. The last test they use to screen a donor is a CT scan of the kidney using contrast. They only do this test when they are very certain that donation will proceed. They don't like to do this test more than once because the contrast agent is cleared by the kidneys. So, I am "parked" for now and the doctors are having Joe (Sam's dad) go through the screening process to find out if he can donate his kidney (with the hope that it is larger than mine with a higher GFR) either directly to Sam or into the national kidney exchange. The goal of the exchange is to find a living donor that matches Sam and is closer to his age. Sam would get his kidney transplant first and then Joe would donate his kidney to the next recipient in line. So we are waiting for the doctors to let us know what the next test is that Joe needs to take to continue in the screening process.
Next Wednesday, Sam has to have few more baseline tests done and then the transplant coordinator will arrange to have him put on the national waiting list for a kidney from a deceased donor. This is done so that in the event a live donation does not occur, Sam won't have lost time on the waiting list for a kidney donation from a deceased donor.
Thank you very much for your time to read my first blog entry and more than that, thank you for your on-going support, prayers, positive thoughts and love for Sam.
Deuteronomy 31:8 "It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.”