GOD IS IN CONTROL

For some time, Becky had been on hold for a transplant because her hemoglobin was too low. About a month ago, that hold was lifted.

On July 20 she received notice that she had two viable donors and that she, and her donors, were being entered into the NKR (they weren’t a match to Becky, but were willing to give a kidney so Becky could get a better match in return. It was verified that both these folks came from the  SHARE YOUR SPARE! campaign from last fall  and did not know Becky.)
Wow! How awesome is that! We were so excited to have a living donor. We had been told of many advantages to have a living donor over a deceased one.

Then she received the call to come to Christ Hospital and have blood work done.
They have a potential deceased donor.
They will hand deliver the blood to Hoxworth Blood Center and we will have and answer by evening. If the match is verified, the transplant surgery could be as early as tomorrow morning.
Even though we are excited beyond words, the thought of those “advantages of a living donor” are stuck in our heads.
I remembered what I wrote on Becky’s “ABOUT” page…

 “Becky is a strong, determined woman of God. She stands strong in her faith in God’s Devine Healing. She knows that ultimately the kidney that she so desperately needs will come from God. The time, the place and the people He uses will be His choice. Her financial needs are many and mounting as each day passes. Still Becky stands strong confident that God is her source!”

Lord, help us now to remember that you are in control.

It took until morning until the phone call came.
Becky would NOT be getting the kidney.
Someone that also matched the donor needed two organs to be transplanted.
That took priority.

BUT…7 We have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. 8 We are afflicted in every way, but not crushed; perplexed, but not driven to despair; 9 persecuted, but not forsaken; struck down, but not destroyed; (2 Corinthians 4:7-9)

Since the power inside the “jars of  clay” (us) belongs to God and not us, we can be afflicted, but we can’t be crushed; we can be perplexed, but we can’t be driven to despair; we can be persecuted, but we can’t be forsaken; we can be struck down, but we can’t be destroyed!

Hallelujah!

GOD IS IN CONTROL!

He is her Healer (Jehovah-Rophe) and He is her Provider (Jehovah -Jireh) Who He uses and How He uses them, I will leave to Him.

Becky will continue to be in the NKR with the two approved donors. We are praying earnestly for more volunteers to increase her chances to get a living donor.

IF YOU, OR ANYONE YOU KNOW, WOULD LIKE TO FIND OUT MORE ABOUT BEING A LIVING DONOR FOR BECKY, YOU CAN CALL-
JESSICA ENZWIELER, DONOR COORDINATOR @ 513-585-1427

There’s more about being a living donor in this post-
What is a Living Donor

You can find loads of information about the NKR here-
www.kidneyregistry.org

UPDATE- A YEAR LATER

It was one year ago today that Becky was scheduled to have her transplant. Everything was set to go.

Our sweet daughter-in-love, Nikki was to be the donor-

The 2 week desensitization program was over–

The mold problem in the bathroom and laundry room were taken care of-

Meals were planned for both families-

Childcare and rides for the children in both families-

Every detail planned and coordinated-

THEN- The phone call came…….

THE TRANSPLANT WAS CANCELLED.

Not postponed, not rescheduled, CANCELLED.

It seems Becky had a sudden and extreme raise in her antibodies. In disbelief, we try to move forward. There doesn’t seem to be an explanation.

There have been ups and downs all year.

Her phosphorus has been high.

Her hemoglobin has been low. 

A little at a time, she had gone from doing dialysis for 8 hours every night on a cycler to doing 10 hours on the cycler, plus 2 manual exchanges. One, 6 hours before she hooks up to the cycler at night and another one in the morning. (She’s basically on dialysis for 20 hours a day)

Her Epogen (a man-made form of a protein that helps your body produce red blood cells) has been doubled to try bring the hemoglobin numbers up. She gives herself a shot once- now twice- a week. The count needs to be at 10 to go forward with surgery. Hers are at 7.

There’s a constant battle with tiredness and weakness.

In the fall, we started the “Share Your Spare” campaign. We wrote on all the family’s cars to let everyone know that Becky needed a kidney. The response was overwhelming!

We put pictures of the vehicles on Facebook.

It went Viral!

We received @ 130 emails from folks wanting to be a donor!

We did interviews with Channel 19, 5 and 12 and one is pending with channel 9!

But… with the hemoglobin so low, the transplant was put “on hold”. It has been taken off and put back on several times. It has been an emotional year for sure.

The last up-date is about Becky’s Financial situation.

With help from precious family and friends, we were able to have several Fund Raisers this last year to help with Becky’s overwhelming, on-going financial burden. THANK YOU, THANK YOU, THANK YOU, to each and every one that helped!  Also,  “Blessings for Becky Transplant Fund” at Go Fund Me   raised $1910.00. This money has been used for bills, home repairs and we were able to add a nice deck to the back of her house. THANK YOU to all those that gave online or at Fifth Third Bank (Blessings for Becky Transplant Fund)  or in person.

Two major financial events have happened recently. 1.  Becky’s vehicle “gave up the ghost”. She’s currently borrowing our van until it can be replaced (A nice, dependable vehicle would cost $4-$5000.00.) and 2. Her furnace also “gave up the ghost”(A new one is $2000.00)  So I’m asking all Becky’s family and friends to share this post on Facebook and any way you can to raise the money needed for these two burdens. I know so many reading this have given and given again, but now I’m asking you to share Becky’s situation with your friends on Social Media, at church, at work, at school, wherever you can, and ask everyone to share with whoever they can.

Thank you to everyone that is holding Becky and our whole family up in prayer. It’s where our strength comes from.

Becky is a strong, determined woman of God. She stands strong in her faith in God’s Devine Healing. She knows that ultimately the kidney that she so desperately needs will come from God. The time, the place and the people He uses will be His choice. Her financial needs are many and mounting as each day passes. Still Becky stands strong confident that God is her source!

 

SHARE YOUR SPARE!

To say this last week was a whirlwind roller coaster for our family would be an understatement! We had birthdays, out of town visitors, people moving, life-changing decisions and all the usual family chaos.

Oh, AND…. we were on the NEWS!

Let me start at the beginning. (♪ It’s a very good place to start ♪)
This is how the “SHARE YOUR SPARE” campaign came to be.

The first part of October, I saw a post from Tanya O’Rourke at WCPO News on Facebook . I Shared it on my Facebook page. The same day I saw this video on Facebook and shared it also.

Pasadena Woman’s Search for Kidney Donor Goes Viral

So…

I decided to do the same thing.

Then…

It was shared as far as New York.

Then…

We did everyone’s vehicle.

Then…

Someone took a picture of one of our vehicles.
Then… It went Viral! it has 6,714 shares and counting.

Then…
http://www.fox19.com/story/30430216/mother-of-5-needs-a-kidney?clienttype=generic
Shawn Lanier From Fox 19 News did an interview.

Then…
http://www.wlwt.com/news/kentucky-mothers-search-for-a-kidney-donor-goes-viral/36281152?utm_source=Social&utm_medium=FBPAGE&utm_campaign=News
Miriah Turner from WLWT New did an interview.

The rest of the week has been spent replying to about 110 emails from people willing to donate for Becky!

The best  part of the week has been seeing God’s hand move every step of the way! I’m so thankful for the two news stations that interviewed Becky (at least one more wants to). I am also thankful for Facebook; It sure is a good way to “get the word out”, but the Media and Social Media are not Becky’s source. God is. He is her Healer (Jehovah-Rophe) and He is her Provider (Jehovah -Jireh) Who He uses and How He uses them, I will leave to Him.

4 Things You Should Understand About Living with Kidney Disease

4 Things You Should Understand About Living with Kidney Disease

A simple question—“What do you wish others understood about living with kidney disease?”—unleashed a torrent of comments on our Facebook page recently. Kidney disease itself is often invisible until the late stages; once it progresses to kidney failure, patients need dialysis or a transplant to live. People living with kidney disease and kidney failure tell us they often feel that others do not understand what they are going through, both physically and emotionally.

1. It’s exhausting

There’s a special kind of tired that often accompanies kidney disease, and it’s not always predictable.  “I have my good days and my bad,” notes Emily. “Some days I want to sleep and most I’m ready to go.” For many, the fatigue is pervasive. “I’m not lazy,” says Linda. “My energy level is like someone at the end of a full day of work when I wake up.”  Valerie writes, “I’m always tired! And I think my family and friends get tired of hearing that.”  Some patients compare it to the flu: “It’s like feeling flu-like tired all the time and not thinking clearly because you’re so tired,” says Lori. Emily sums up what patients want: “Most of all, all we want is understanding, patience and acceptance.”

2. Looks can be deceiving

Kidney disease does not have outward physical symptoms, so friends, coworkers and even family members may have a hard time understanding just how poorly patients often feel. “Just because I look OK doesn’t mean I feel OK,” writes Natalie. “Every day I have to get up and try to be normal, try to be a good mom, try to be a good friend, try to be a good employee, try to be a good wife.” Mary Ann concurs: “Just because we may look the same, we don’t feel the same and cannot function the same the way.” Many patients make keeping up with their appearance a priority: “I always try to put on a ‘normal’ and ‘healthy’ appearance when I leave the house,” writes Jill. “I hope they understand the strength it takes to do that.”

3. The pain is real

The pain that often accompanies kidney disease and dialysis treatments can make it difficult to do many things healthy people take for granted. “The pain never stops,” writes Heather Marie. “Even picking my kids up to hold them hurts and no one could understand that type of pain.”  Notes Delores: “Even the smallest simplest things are hard to do, not to mention the pain and fatigue, especially the day after dialysis. And dialysis is painful. You are not just sitting there for 3-4 hours enjoying yourself with two big needles stuck in your arm.” Michelle offers this advice: “Be supportive and know we deal with some type of pain daily, sometimes extreme.”

4. There is no cure

Once the kidneys have failed, the only treatments are dialysis or transplant. “Dialysis is not a cure,” writes Kevin. “It is, for all intents and purposes, a life sustaining treatment.  And that is all.” JeJe says, “Not even a transplant will make you healthy. Your life is just sustained with drugs and drastic treatments.”

Despite these obstacles, many patients tell us they work hard to maintain a positive outlook and live their lives to the fullest. And they want others to avoid experiencing what they are: “A LOT of people with kidney disease don’t even know they have it,” writes Roselie. “Get tested!”

What is a Living Donor

I’m rebloging this post because I’ve updated the contact information.

Rebecca's Road 2 Transplant

FACTS ABOUT LIVING DONOR KIDNEY DONATION

There’s two ways a person can be a LIVING DONOR.

1) As a Direct Donor. This is done by calling or emailing the Donor Coordinator to register to be cross-matched. (just a blood test) If found to be a match, a complete physical work-up would be given to determine if the potential donor is healthy enough to donate without any risk to their health or risk of rejection of the kidney for the recipient. You DO have to match your recipient’s blood type to do this.

2) By entering The National Kidney Registry (a Paired- Kidney Exchange where a the donor gives a kidney in return for a better match for the recipient.) You DO NOT have to match your recipients blood type to do this.

⦁ WE ARE BORN WITH AN EXTRA KIDNEY.  You only need one to live a…

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Donating a Kidney to Anyone in Need

Today I’m sharing a video from Joe Sinacore from National Kidney Registry

“I really enjoyed working with these amazing people who were kind enough to let us share their story after they donated their kidneys so selflessly to patients in our program. Check it out when you have a chance”

To Becky from Mom… I’m Going To Love You Through It..

This Blog Post is to Becky. The rest of you can read and listen if you want….

This song, which is also sung by Martina McBride, is actually the story of Sonya, Ben, and Becky Isaac’s mother, Lily, who is a cancer survivor. Sonya and her husband, along with Ben Hayslip, wrote the song. I chose a video of The Isaacs singing it to their mom because 1) I love the Isaacs, and 2)I love to watch their mom watching them sing.

The story of the song is different from your story. It’s about the promise of a husband to his wife, after she was diagnosed with cancer. For your story, it’s about the promise of a mother (Me) to her daughter (You) after the daughter was diagnosed with E.S.R.D.  Though the verses tell a different story from yours, the chorus says just what I have felt since that day five years ago when you called to tell me, “Mom, they want to keep me overnight. They say my kidneys have failed”, and our lives changed forever…..

I’M GONNA LOVE YOU THROUGH IT.

She dropped the phone and burst into tears
The doctor just confirmed her fears
Her husband held it in and held her tight
Cancer don’t discriminate or care if you’re just 38
With three kids who need you in their lives
He said, “I KNOW THAT YOU’RE AFRAID AND I AM, TOO
BUT YOU’LL NEVER BE ALONE, I PROMISE YOU”

WHEN YOU’RE WEAK, I’LL BE STRONG.

WHEN YOU LET GO, I’LL HOLD ON.

WHEN YOU NEED TO CRY, I SWEAR

THAT I’LL BE THERE TO DRY YOUR EYES.

WHEN YOU FEEL LOST AND SCARED TO DEATH,

LIKE YOU CAN’T TAKE ONE MORE STEP,

JUST TAKE MY HAND, TOGETHER WE CAN DO IT.

I’M GONNA LOVE YOU THROUGH IT.

She made it through the surgery fine
They said they caught it just in time
But they had to take more than they planned
Now it’s forced smiles and baggy shirts
To hide what the cancer took from her
But she just wants to feel like a woman again
She said, “I DON’T THINK I CAN DO THIS ANY MORE”
He took her in his arms and said
“THAT’S WHAT MY LOVE IS FOR”

WHEN YOU’RE WEAK, I’LL BE STRONG

WHEN YOU LET GO, I’LL HOLD ON

WHEN YOU NEED TO CRY, I SWEAR

THAT I’LL BE THERE TO DRY YOUR EYES

WHEN YOU FEEL LOST AND SCARED TO DEATH,

LIKE YOU CAN’T TAKE ONE MORE STEP

JUST TAKE MY HAND, TOGETHER WE CAN DO IT

I’M GONNA LOVE YOU THROUGH IT.

AND WHEN THIS ROAD GETS TOO LONG,

I’LL BE THE ROCK YOU LEAN ON.

JUST TAKE MY HAND, TOGETHER WE CAN DO IT.

I’M GONNA LOVE YOU THROUGH IT.

I’M GONNA LOVE YOU THROUGH IT.

National Kidney Registry

Today I want to share a story that was aired on the “Doctors” TV Show. The Transplant “Chain” they are talking about is the program that Becky hopes to enter soon. It is a “Paired Kidney Exchange”, meaning, for Becky to receive a kidney that’s a good match for her, she will need at least one person that is willing to donate their kidney to enter the program with her  So far several people have tried to enter with her, but been eliminated because of minor health issues. Our prayer is that more people will try.

Man’s Gift Launches Chain Reaction

Any questions about being a  LIVING KIDNEY DONOR or to receive a donor packet, contact-

Jessica Enzwieler, Donor Transplant Coordinator-    513-585-1427

How to help Becky

Most of you reading this blog have already helped Becky in one way or another. Thank you. Our family is so blessed to have such loving and caring friends and family.

Today, I’m going to talk about Becky’s needs and how each one of you can help with that.

1. Becky needs a kidney. As I mentioned in the  About Becky page of this blog, we are confident that God is the source of that kidney, but there are some things that you can do to help. First is to prayerfully consider being a donor yourself. See What is a Living Donor for more about that. Of course, we want to say “THANK YOU” to each one that has been willing to be tested so far. God is going to pour His blessings on you because of your willingness to sacrifice. Also, you can share Becky’s story with everyone you know. There’s a perfect match out there somewhere.
   
2. Becky needs financial help. She is unable to work so her only income is disability which isn’t near enough to cover her overwhelming financial needs. Donations have been coming in through deposits into the “Blessings for Becky Transplant Fund” at Fifth/Third Bank and also through “Blessings for Becky Transplant Fund” at Go Fund Me.  Many of you have given to these accounts and helped in other ways (An Awesome Yard Sale, Christmas Blessings Beyond Measure, donation of time and talent, gifts from Churches and Folks, gifts in the mail,  just to mention a few.) Now, Becky needs her story shared so others can have the opportunity to be blessed by giving.
3. Becky needs encouragement. If you’re Becky’s friend on Face Book, write something on her wall. Leave a comment here on this blog. Visit Blessings for Becky Transplant Fund at Go Fund Me and leave a comment. Drop her a card in the mail, text her or call her. You can email me for her address or phone number nkygrammy@yahoo.com. Besides encouraging Becky, if comments are made on here or on Go Fund Me, it makes them more “visible” to the public.
4. Becky needs prayer. If you or your church are praying for Becky, please go to Praying for Becky and leave your name or your church’s name in a  comment. I know some of you have already commented on this on Face Book, but I would like to see how long of a list we can make in one place. I want to put all the names in a Remembrance Book for Becky. 
5. This one is for me. I need your prayers. Being a “Kidney Champion” is hard. I have to separate being Becky’s Mom and being her Advocate. Pray that I would be bold as I tell her story. Also, I am open to ANY input or ideas how to spread the word, how to raise funds or how to make this blog better.

Thank you,

Sharon

Praying for Becky

If you are praying for Becky, please leave your name in a comment here on this blog post.

If your church is praying for Becky, leave your church’s name and address in a comment.

What an encouragement it will be for Becky to see the list!