Marshmallow Mondays


The Power Of A Share

Almost three weeks ago, I shared the news that Ryan is in need of a kidney.  Within the first 48 hours, that “Special & Urgent News” post received 6,257 views.  Even before those first 48 hours were up, I created A Match For Ryan, which currently has 538 “likes.”  I will never forget how it felt to sit here and watch “like” after “like” and “share” after “share” within the first few minutes of creating the Facebook page.  You all have blown us away with support in creating awareness for Ryan’s needs.  The power of social media is truly incredible.

I know not all of our readers, especially many of our family members, do not have Facebook, and therefore are not receiving all of the updates posted on A Match For Ryan.  Please understand that this is the fastest and most efficient way of reaching all our supporters, as well as potential living donors.

The list of potential donors currently includes friends, family members, but also friends of friends and people whom we’ve never met, but have been able to reach all due to that little “share” button.  Everyone is showing such genuine care and compassion, which provides us with an abundance of hope for better days ahead.

For anyone who needs caught up, or for anyone who isn’t on Facebook, today’s blog post is simply to provide an up-to-date report on where Ryan is at in the kidney transplant process, as well as provide a few educational highlights on kidney transplants and living donations.

Feedback from our all-day appointment at The University of Cincinnati Hospital last week:

  • After speaking with one of the transplant surgeons and a nephrologist (kidney doctor), they are suggesting that Ryan receive a kidney AND pancreas transplant all at once, which would come as a pair from a deceased donor.  Prior to today, we did know that he would need a pancreas transplant as well, but thought that it would happen months after the kidney transplant.
  • These are the reasons that our transplant team is suggesting a kidney/pancreas transplant, as opposed to two separate transplants done at two different times:
  1. Ryan’s diabetes have caused wear and tear on his current kidney, and will do the same on a new kidney.  By getting a pancreas AND kidney at the same time, it eliminates that wear and tear because he would no longer be diabetic.
  2. There is a lower risk of thrombosis (blood clotting) by doing a pancreas AND kidney transplant all at once.
  3. Anti-rejection medications are required for the life of a kidney post transplant.  These medications create antibodies, which make it more difficult to do a pancreas transplant down the road.
  4. ONE surgery as opposed to two separate surgeries.

Please understand that right now this is just an option being presented to us.  The goal is to keep Ryan off of dialysis, so depending on the rate at which his kidney function declines, he still may need to move forward with a living donor.  If his function gets close to the point where dialysis would be needed, he most likely will move ahead with a living donor.  If his function remains at the level it is now, he will wait for the pancreas AND kidney and have one surgery.

*What does all of that mean for our potential donors?  It means that we still need you!  We want to be ready with a match in the event that Ryan’s kidney function approaches the need for dialysis.

Is Ryan already on the kidney/pancreas wait list?

  • Ryan will be placed on the KP wait list after his tests are completed.  All transplant candidates must first go through a list of tests based on his/her medical history before being placed on the wait list.  All tests can be performed here in Lexington.
  • The benefit is that since his kidney function is still above transplant level, he can begin to accrue time on the wait list.
  • Reminder – depending on the rate at which his kidney function declines, it is still very possible that he would need to move forward with a living donor transplant.

What types of post-transplant medications will Ryan need?

  • There are two types of medications Ryan will need post transplant to prevent complications:
  1. Anti-Rejection: Meds that are used to prevent and/or treat rejection of a transplanted kidney.  These medications will be taken for the entire life of the transplanted kidney.
  2. Anti-Infection: Meds that are used to prevent and/or treat certain bacterial, viral and fungal infections post transplant.  These are taken for approximately one year.

What are the chances for Rejection?

  • Rejection occurs when the immune system recognizes the new kidney as foreign and attacks it.
  • Rejection is treatable in most cases.
  • The risk for rejection is highest during the first 60-90 days.  90 percent occur in the first three months after transplant.
  • 99 percent of rejection happens due to not taking post transplant meds at the same times every day.

Does Ryan know his blood type?

  • Not yet.  Ryan did have a blood test performed while we were in Cincinnati last week.  The hospital policy is that they need two separate blood tests, so he will have another test performed in Lexington sometime soon.  As soon as we know his type, all of you will know too. Below is a chart that shows how blood-typing compatibility works.

blood chart

What if I am thinking about being a kidney donor for Ryan?

  • For anyone who is thinking about being a potential kidney donor, the first step would be to contact our pre-transplant coordinator. If you do not live near Cincinnati, she can mail a blood kit to you, which you can take to a local lab and have your blood drawn.  The lab will then mail the blood sample to Cincinnati. The coordinator will interview each potential donor for medical and surgical history, and also educate each person on the donor process.  She will identify any conditions that may prohibit donation.
  • There is no cost to the donor.  Tests (with the exception of pap smears, mammograms & colonoscopies), surgery and post-op appointments are covered for the donor.
  • If you are interested in speaking with our pre-transplant coordinator, please email me at bwmarie@hotmail.com and I will gladly provide you with her phone number.
  • We do not want anyone to feel any pressure or obligation, and therefore will respect your decision, should it ever change.

I understand that this is a lot of information, so please don’t hesitate to contact me with any questions.  My goal with social media is to keep everyone as informed as possible so that each of you feels educated enough to share Ryan’s needs, and therefore increase his chances of finding a match.  My request to each of you who reads this post today is to SHARE it.  Post it on your Facebook page, reblog it, email it, print it out and show it to someone.  Just don’t keep it to yourself.  SHARE it.

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1 Comment so far
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Dear Bridgit,   You and Ryan, Rydan and Lily are truly loved, as evidenced by the outpouring  of responses to your  postings.  I, myself would offer a kidney, but at my age of 89, I think Ryan needs one thats a little less used and decrepit.  But my prayers for you all are ever youthful.  Rev. Fordon

Comment by jfordon511@comcast.net




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