Marshmallow Mondays


Thankful
11.24.14, 6:17 AM
Filed under: Holidays | Tags:

Today’s post is to wish all of our readers a very Happy Thanksgiving!  

This is by far our most thankful year to date. We continue to celebrate Ryan’s new life, and we remain so very grateful for the organ donor who made Ryan’s transplant possible. This individual donor has a permanent spot at the top of our thankful list. Every day, he motivates and inspires us to do everything we can to promote organ donor awareness. Our thoughts and prayers continue to be with his family, especially during this holiday season.

We cannot talk about the transplant without talking about our entire transplant team, who are a phenomenal group of people that have taken exceptional care of us since the very beginning. These surgeons, doctors and nurses have become our extended family. They provide us with comfort, reassurance, guidance, and remarkable medical care.

We are also extremely thankful for all of our family, friends and neighbors who have helped us throughout this journey. Whether you’ve brought us a meal, watched our kids, stopped by to let Brooks out, donated to our transplant fund, cleaned, mowed our grass, etc, you have made our life more manageable and allowed us to focus on Ryan’s recovery, and we love you for it.

All that being said, it is clear that God led us to Kentucky for a reason, and this year our hearts are filled with thanks for His love, blessings, and the journey that He has placed us on. The light at the end of the tunnel becomes a little bit brighter every day.

dccab2a87a6c48f876cc92c42dec616d

We’ll be spending Thanksgiving at home as usual, and I’ll be cooking way more food than what we can eat, as usual.  This year we have a very special guest joining us… my Dad!  He arrived on Saturday afternoon and brought us all sorts of goodies from Pennsylvania – our favorite chocolate straight from Hershey, Grandma Wiest’s homemade spaghetti sauce, Cooper’s cheese, and apple dumplings from the Gratz Auction. He’s already painted one bathroom, and is working on a second while we are at Ryan’s appointment in Cincinnati today. Having him here right now means so much to us!

Enjoy your Turkey Day, friends!  We sure will.



H O P E

One day a few months ago, Lily and I were having fun with some homemade clay, and an idea struck me when I found my kidney cookie-cutter in one of my kitchen drawers. I had used this to make medals back in June for our Share Your Spare 5K Fundraiser. Christmas is coming, so why not make some ornaments?  So we did.  And we stamped them with the four letter word that has kept us going throughout all of Ryan’s many health struggles. HOPE.

SONY DSC

This morning, Lily and I had the privilege of decorating a Christmas tree with our hope kidneys for an annual fundraiser called “Trees Of Life,” where decorated Christmas trees are auctioned off to support The Kidney Health Alliance of Kentucky (KHAKY).  I am truly honored to be part of this special event, which benefits such a valuable organization that is dedicated to serving kidney disease patients, increasing awareness and early detection of chronic kidney disease, and promoting organ donation.  KHAKY was one of our sponsors at Share Your Spare 5K, so I am absolutely thrilled to be able to support them on this event.

SONY DSC

SONY DSC

SONY DSC

 

SONY DSC

My goal for everyone who sees this post or attends Trees Of Life is that they can gain some hope from our story. Ryan was just one of the 100,000+ people waiting for a life-saving kidney. He was in end-stage renal disease with no other options but to receive a transplant. This tree represents the hope that we hung onto so tightly, and the new life that resulted from it. We share our story now to ignite hope in those who need it most.

SONY DSC

As I stood back and looked at our finished tree this morning, it hit me again that my husband is not on the waiting list anymore. I created these hope kidneys prior to Ryan’s transplant, so the fact that we can be part of something like this and offer our success story as hope, is something that I hold very dear to my heart. I also realized in that moment that I forgot to bring something for the top of the tree, but I quickly remembered that our family gained an angel on October 11, 2014, so maybe, just maybe that angel can shine down on this tree, brighter than any star could have.

SONY DSC

This holiday season, please keep all those waiting for life-saving organs,as well as all of the donor families, in your thoughts and prayers. The waiting list is long one, filled with people anxiously waiting for their phone to ring. Having lived that way for five months, we know what a battle it is to keep hope alive. For those who have been living that way for many years, you can only imagine how hard it is to not lose hope day after day, month after month, year after year, all while suffering health problems that become worse as time goes by. Sharing our story is just one way that we can help to keep that hope alive in those who are struggling with their wait.

SONY DSC

By “hanging some hope” on this special Christmas tree, we acknowledge each of the 100,000+ people waiting for a life-saving kidney, and we want them to know that we will never lose hope for them.



I Wish… 2014
11.10.14, 2:15 PM
Filed under: Holidays | Tags: , , , ,

I had to look at the calendar when our Toys R Us and Target Christmas catalogs arrived in the mail over a week ago. The month of October, which normally feels like such a long 31 days, now seems like a blur because of Ryan’s transplant. Today marks one month since we received “the call,” and here we are making Christmas wish books with the kids, and looking forward to spending our first holiday season in our new home, more thankful than ever before.

As usual, Rydan and Lily couldn’t wait to cut their “wishes” out of the toy catalogs and decorate their 2014 wish books. Rydan’s is filled with numerous Lego sets, Minecraft sets, Nerf guns and WWE action figures.  Lily’s is filled with a variety of Doc McStuffins, Peppa Pig, Hello Kitty and Furreal Friend toys.

SONY DSC

SONY DSC

SONY DSC

SONY DSC

SONY DSC

SONY DSC

SONY DSC

SONY DSC

Creating these wish books began when Rydan was just three years old, and we’ve made it a holiday tradition ever since.  I’ve kept every single book that they’ve each made, so it’s always fun to look back through and see what their interests were over the years. This is a method that works really well for family and friends who are looking for gift ideas.  Give it a try with your little ones!



Halloween 2014

Readers, I have not forgotten about you.  I know I’ve missed two weeks in a row of Monday posts, and I am so sorry!  This is the first time I have neglected my blog in five years, but hopefully you all understand and know that there’s been a really good reason for my absence.  (And in case some of you don’t know, please refer to my last post on October 13th.)

I will be honest, I didn’t even think about the first post I missed, which was two Mondays ago.  That’s the day that Ryan was discharged from the hospital after his transplant.  It wasn’t until Tuesday afternoon when I realized I hadn’t written anything.  Ironically, the following Monday (10/27), was the day that Ryan was re-admitted to the hospital for dehydration.  We’ve had some ups and downs throughout the week, but he did come back home last Wednesday.

Today, I am happy to report that Ryan is doing very well.  We are back in Cincinnati today for another check up, so please visit our Match For Ryan Facebook page later today for a report on the appointment.

Now, as you can imagine, life has been very full since Ryan’s surgery.  I hesitate to say that it’s been crazy or chaotic, because even though it feels like we are in a tornado some days, our hearts are filled with gratitude for the gift that Ryan has received.  As he continues to recover, I appreciate your patience with my blog.  I can’t promise that I will have a new post every Monday between now and the next few weeks, but I will definitely do my best.  We literally are taking one day at a time, and some days are filled with unexpected bumps in the road.  This recovery period is simply a phase we have to fight through, but Ryan is well on his way to a new life filled with good health.  We’ve learned to take each day as it comes and deal with each obstacle with patience while trusting in God’s plan.

Friday was one of those days.  An unexpected kidney biopsy left us feeling very discouraged, but as the day went on and little blessings fell around us, we realized that there was no need to become overly discouraged with something so out of our control. Our transplant team continues to take extreme care and caution to ensure that Ryan’s new organs are protected, and for that we are ever so thankful.  Because they know we have two little ones who were eager to go trick-or-treating, they made sure to get us out of the hospital so that we could make it home in time for Halloween.

It was extremely cold and rainy, so I carried my little witch with my zombie following close by, and we made a very quick loop around the neighborhood.  We returned home shivering, but with full bags of candy.  Mission accomplished.

SONY DSC

SONY DSC

 



A Match For Ryan

By now, you all know our fantastic news.  If you don’t, it is with so much joy that I tell you this.

THERE IS A MATCH FOR RYAN!

I received a call from our transplant coordinator, Darlene, on Friday at 10:30am. “Bridgit, we might have something for Ryan.”  My heart began to race, and a barely audible “okay” was all I could manage. Lily and I had just pulled into the parking lot at Kroger.  Darlene continued, “I need you to stay put and be ready. Pack a bag. I should know more this afternoon, so just take a deep breath and be ready to go.”  I hung up the phone, and Lily said “Mommy, what’s wrong?” I looked into the innocent eyes of my sweet 4-year-old little girl and said “The doctors might have a kidney and a pancreas for Daddy.” She smiled, gasped, and said “That will make Daddy so happy!”

Knowing that Ryan was on a teleconference, I texted him and said “You need to call me.” His response was “I can’t. I am on this phone call.” With no other choice, I typed “Darlene just called. They might have a match for you.” Not being able to hear or see a reaction from him was not exactly how I imagined this happening.  He wrote back “I guess you should pack a bag for me.”

So, that’s exactly what I did. When bags were packed for all of us, I started making phone calls to see who was available to watch the kids. Each person I called answered on the first ring or text, and within minutes I had a plan in place. Ryan texted and said that his co-worker offered to watch Brooks. All that was left to do was wait. Easier said than done when you’re talking about the possibility of your husband’s life-saving transplant. So, I started cleaning toilets. Why? I don’t know, but it gave me something to do while Lily jumped up and down asking every two minutes when it was time to go to Miss Nicole’s house.

At 12:40pm I was eating a bowl of soup, and my phone rang. “Bridgit, it’s Darlene. Dr. Diwan wants you to leave right now.”  I hung up, called Ryan, who was with a co-worker at Five Guys for lunch, and told him we needed to go.

Within a few minutes he was home, and by 3:30pm we were in Cincinnati at the hospital. For the next 11 hours, we waited, unsure if the transplant was going to happen. I cannot explain the emotions of not knowing, of wondering about the donor, and of feeling so exhausted during such a critical time.  When we were finally taken to meet with the anesthesiologist at 2am, our hope was ignited.

At 4:30am, the nurse looked at me and said “They’re ready for him. Time to give him a hug and a kiss goodbye.” I hated the way she said that. Deep down, I knew she didn’t mean it the way that it sounded, but I couldn’t help but be affected by it. Choking back tears, I wrapped my arms around Ryan and tried to focus on that moment for as long as I could. “It’s okay. Be strong,” he said.

Then began my next wait, this time, alone. I sat in the waiting area for almost 8 hours, my feet propped up, blanket wrapped around myself, clutching a pillow. Sleep was impossible. There was nothing more important than talking to God.

At 5:50am, I received my first update from the operating room.  Surgery had begun about twenty minutes ago, and everything was off to a good start.

My second update came less than an hour later, and was much like the first. His vitals were good and things were going well.

At 9:15am I learned that his new kidney was in place. An hour later, his new pancreas was in place. By 11:40am, Ryan was out of surgery.

AMFR_CoverImageI was extremely thankful for the sweet nurse who provided me with these updates, which allowed me to keep all of our Match For Ryan Facebook followers updated as well.  With each post I made, it was a matter of minutes before notifications went crazy with “likes” and comments.  Reading everyone’s encouraging words gave me so much comfort.  I sat in that waiting room with such a hopeful heart and a strong spirit.  With so many prayer warriors on the job, I had no doubts that God would take care of Ryan.

It was 1:30pm when I was allowed into Ryan’s room. As I approached his bed with caution, scared of what he might look like, I was relieved. Despite all of the wires, machines and tubes, he looked much better than I thought he would. I gently placed my hand on the side of his face, and he opened his eyes just long enough for him to see me smile.

As I sit here this morning, Ryan will likely be moved out of the ICU. Both organs are working the way they are supposed to. His sugar has remained normal since surgery. His blood pressure has remained in a healthy range for the longest period of time that I have ever seen.  He has a long recovery road ahead, but this is the start of a new life for Ryan, and for our whole family.

As overjoyed as I am, I cannot stop thinking about Ryan’s donor, who was just 23 years old.  I wish so badly that I could hug this angel’s family and tell them what a miraculous gift has resulted from their tragic loss. I pray that God gives them comfort during this devastating time. There are no words that can express our gratitude to them.  This individual donor has done for Ryan what doctors could not. He has cured Ryan’s diabetes.

This journey has been one like no other, and though it is far from over, I feel like there’s nothing we can’t face. God worked this out for us better than I ever could have imagined. There isn’t a shred of doubt in my mind that He will continue to take care of us and provide for us as Ryan begins his recovery.

I truly thank all of you for your love, support, and prayers.  It is such a comfort to know that we have such a strong support system.  I have really enjoyed all of the texts, messages, and Facebook comments/likes, because it’s a constant reminder that we are never alone in this.  God is so good!



Inspiration

10671365_1459628137634380_6568619464564425453_nHappy Monday, friends!

Today, I would like to bring attention to our dear friend, Nicole Nelson. Tomorrow, Nicole is traveling to Los Angeles for three days to complete her medical testing and evaluation, which will determine if she is a suitable candidate as a living kidney donor. 

By now, you all know that Nicole was the first person to step forward as a potential living donor for Ryan a few months ago. Nicole and I share a mutual friend on Facebook, which is how she stumbled upon our page. After reading our story, Nicole acted on the compassion in her heart and eagerly offered herself as a potential donor.

When Ryan’s plan changed from needing a living kidney donor to needing a deceased kidney/pancreas, Nicole easily could have disappeared. Instead, she remained, and continues to remain, a strong, hopeful, encouraging, caring, supportive friend to us. From thoughtful care packages, to thinking of you text messages, Nicole has shown us the true meaning of compassion.  I still remember her response when I told her that Ryan no longer needed a living donor.  She said “Is it weird that I’m kind of disappointed?”  From that moment on, I knew that Nicole wasn’t going anywhere, and that I had made a new, amazing friend who I could count on no matter what.

10665797_1467405060190021_8607662305981988558_nNicole’s compassion has led her to take action and travel to L.A. to see if she can donate her kidney to someone else in need. Nicole is a true inspiration, and I hope you will all join me in offering her your support and love. Her one-of-a-kind personality, zest for life, positive attitude and comedic side are the perfect combination to bring joy and hope to those in need.

Nicole is a big part of the silver lining that we’ve found through Ryan’s health struggle, and I will be forever grateful to her for reaching out to us.  Knowing that she has chosen to help another person like Ryan gives hope and inspiration to not only us, but to the hundreds of thousands of people who are waiting for a life-saving organ.  

We’ll be posting updates on Nicole’s journey through our Match For Ryan Facebook Page, so please stay tuned.

We love you, Nicole!



GoFundMe – MFR Transplant Fund

It has been over four months since Ryan was placed on the kidney/pancreas wait list.  Though we had high hopes that Ryan would be in recovery with his new organs by now, we have to continue to trust and have faith in God’s perfect plan.

In the few months that Ryan has been waiting, our Match For Ryan page has attracted over 700 followers. This is definitely something that we are proud of, because that’s 700+ people who are being provided with daily information on kidney disease and organ donation.  So many of you have shared our posts, which means that our reach has extended to an even larger audience.  The more we all understand this awful disease, and the more we encourage others to become organ donors, the better outcome there will be for people like Ryan.

2014-05-08 09.30.12Ever since we announced Ryan’s need for a transplant, a lot of you have asked how/where donations can be made to our Match For Ryan Transplant Fund. I have finally set up a GoFundMe.com account, where online donations will directly support Ryan’s medical costs associated with transplant surgery, hospital stay and post-transplant medications.

As a reminder, Ryan will be in the hospital for approximately one week when his transplant takes place. Post-surgery appointments will occur in Cincinnati three times a week for a month, then two times a week for a month, and then one time a week for a month. He will need anti-infection medication for the first year post-transplant, and anti-rejection medications for the rest of his life.

This is our personal link, so please feel free to share away!  

Please note, donors are not charged any processing fees when making a donation.

http://www.gofundme.com/euy8f4

As always, we thank each of you for continuing to follow Ryan’s journey towards receiving his transplant, and for all of the love and support that you provide.  Having such an awesome support system gives us comfort, hope and encouragement.




Follow

Get every new post delivered to your Inbox.

Join 30 other followers

%d bloggers like this: