How God Does Kidneys

Jeremiah 1:5 "Before I formed you in your mother's womb, I knew you; before you were born I set you apart."


Jeremiah 29:11 "For I know the plans I have for you," declares The Lord, "plans to prosper you and not to harm you; plans to give you hope and a future."
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That picture is of my best friend, Bobbette, and her kidney donor, Courtney. It was taken a couple days after we all realized just how firmly in God's hands we were being held.

You see, Courtney lives in my hometown of Slidell, LA. She moved there not to long ago. It's not a big town, nothing really notable about it. She lives less than a mile from my grandparents. Last summer, her sister, Leanne, moved there and began working at First United Methodist Church. I spent the first 18 years of my life being raised in that church.

I randomly sat down a few chairs away from a man in the waiting room on the morning of Bobbette's surgery. He has a bag from the Komen 3 Day in Dallas under his chair. It belonged to his fiancee', who was donating a kidney that day. It was Phillip, Courtney's fiancee'. Courtney is a 3 Day Walker.

Courtney got the blog I wrote last December with the info on getting tested to be Bobbette's donor from Leanne, her sister. Leanne began following me on Twitter last summer because we are both Komen 3 Day Walkers. I walk on Team Betty as part of Remember Betty. We walk in memory of Betty Wood, mother of Danny Wood from the New Kids On The Block. There are dedication plaques on the doors of the hospital rooms at Vanderbilt. Bobbette's room was dedicated to a lady named Betty.

When the New Kids On The Block reunited, Bobbette was the one who got me to go to the concert. It was at one of the shows we went to that I heard Danny speak about Team Betty and decided to get involved.

Donnie Wahlberg from New Kids On The Block retweeted the blog from last December hours after it was written. Vanderbilt was overwhelmed with calls from fans wanting to be tested to be living donors. The number of people receiving organ transplants just from those calls is in the double digits. It does not include bone marrow, plasma or blood donors, nor the people who have chosen to donate after their death.

If God has a plan that puts together kidneys, small hometowns, reunited boy bands and breast cancer walks in to one package, I promise you He has a plan for your life.

Benefit for Bobbette

On June 18, we will be holding the 'Benefit for Bobbette Miller' in her hometown of Lobelville, TN. The proceeds from this benefit will go towards covering her surgical and post-surgical medical expenses. The average kidney transplant, including hospital stay, is approximately $40,000 - $50,000. However, because of Bobbette's pre-existing medical conditions, her surgery is expected to run upwards of $100,000. It could potentially reach $200,000, depending on the length of time she's required to stay in the hospital. This total does not include the medications she is currently on or the ones that will be added after her transplant. Insurance will cover approximately 80% of the surgical costs. The amount covered for the medications varies depending on which one we're talking about. The remainder of the costs will fall to us.

Yes. Us. Not her... US. Some may think I'm stepping out of line for speaking for all her friends and family, but I feel quite comfortable saying that none of us will leave her to carry this burden by herself. We take care of our own.

Benefit For Bobbette

June 18 -- 2pm til 7:30pm

Main St. in Lobelville, TN

Musical performances by Lost Creek, Coley McCabe, CJ Garton and more.

Silent auction featuring items from Michael McDonald, Darryl Worley, Keith Anderson, Gander Mountain, PF Chang's, and many more.

Food will be available for purchase, as well as a cake walk.

If you would like to donate items or gift cards for the benefit, please send them to the address below no later than June 17:

Benefit for Bobbette Miller

c/o Abbie Vicknair

124 S. 17th St.

Nashville, TN 37206

For those of you who cannot be there but would like to donate, you may donate via the Paypal button below OR a fund has been set up at a local bank:

First Bank

The Benefit of Bobbette Miller fund

Linden, TN

931-589-2161 - ask for Naomi
 

THANK YOU!!

June 23

Bobbette will be receiving her new kidney on June 23. Thank you to everyone who has gotten tested, spread the word, prayed, or even thought about her during this time. On behalf of Bobbette, her family and friends, we love you.

Dropping The Ball... or The Kidney

I don't really know how to begin this blog, but this seems like the most appropriate way. Vanderbilt University Medical Center, in particular their Organ Transplant Program, completely and totally dropped the ball with Bobbette's kidney transplant.

Since January, we have been told that the first person on the list of potential donors was going through the final stage of testing. While this testing is extensive, including a psychiatric evaluation, blood work, etc., it seemed to be taking a bit too long. The donors who had made themselves known to us continued to check in with Vanderbilt every so often. They were told the same thing each time, "We're testing the first person. Don't call us, we'll call you."

With Bobbette sitting at five percent kidney function, we became increasingly worried about the lack of progress. They have been doing all they can to keep her off of dialysis. The veins in her arms are shot after years and years of blood work and procedures. The alternative to using the veins in her arms for dialysis would be to put in an abdominal port. They are hesitant to do that because of her previous liver transplant, and because that would essentially create an open wound in an immuno-compromised patient. (Her body doesn't fight infection due to the anti-rejection medications she has to take.)

Bobbette received a phone call earlier this week to tell her that she was being activated on the waiting list for a kidney. This wait is approximately three to five years long. After asking why, she was placed on the phone with Margot, her transplant coordinator. Margot informed her that she was afraid some of the donors had "slipped through the cracks," and that we needed to have the ones we knew of contact Vanderbilt. Thanks once again to the power of Twitter, several of the donors contacted Vanderbilt. What happened next was nothing less than shocking to me.

One donor was specifically told to stop calling; that Vanderbilt had this under control and they were testing the first person. Even after explaining that they had been instructed to call, the donor was still treated in a disrespectful manner. After several phone calls to Vanderbilt, the next donor on the list was finally contacted. We're hoping that the final round of testing for them will begin soon.

It took calling out Vanderbilt publicly on Twitter to get a response. Their media department requested an email with information. After sending that, I was assured that things had been sent to the head of the Patient Advocacy program at Vanderbilt. Thanks to some wonderful friends, we were also given the information that allowed us to begin the process of lodging a formal complaint with UNOS, which handles all transplants. And thanks to a mother who is high up in the medical world, we are looking in to our options with Joint Commission.

Personally, I have lost a lot of faith in Vanderbilt University Medical Center. Yes, they are supposedly doing what they can now to rectify the problems that have occurred, but that's only been at the non-stop urging of family and friends who knew enough to ask questions and not accept half assed answers. What about the people who don't have someone to do that for them? How many times has this happened before? And how many times will it happen again? A link in the chain is broken, and it needs to be fixed.

Update on Bobbette

Before I get in to the update on Bobbette's health and our search to find her a new kidney, I'd like to let you read some words from Bobbette herself. She posted this on her Caring Bridge page last night and has asked me to copy it to this blog.

"Hey all, it's Bobbette here. Just a little note to let you all know what is going on right now. I go back to the doctor tomorrow to see the Nephrologist, but as of right now I am still holding my own. My kidneys are functioning at 6 percent right now, still no yellow in my fingertips or eyes. Really about the only thing that is bothering me right now is still the swelling and I am tired a lot. Things are going well though, still working and feeling well for the most part. With all of that being said we do have great news; I have been informed that they have found 3 positive matches (Abbie's note: After this posting we were notified of 3 additional matches). God is the greatest and He does work in mysterious ways.

I would like to thank everyone for the prayers, thoughts, and well wishes. This all has been a little overwhelming to me but please know that it touches my heart way beyond anything that I could have ever imagined. My family and friends are the best. I would like to say I love you to my Blockhead family. You all are amazing and I pray I get to meet so many more of you soon. To my sister Annette, I know I drive you crazy but thank you so much for everything you have sacrificed over the years and for everything you continue to do for me. I do love you. My best friend Abbie aka my chicken:-) I don't know what I would do without you, my partner in crime. Whether its been two weeks or two months since we have seen each other--- you are the greatest friend ever. Donnie Wahlberg - I could never have imagined the love and support you have shown for me, or for any of your fans. You let us know that you do care and we do matter, even if its hard for us to see sometimes. I absolutely adore you and will never forget our meeting in June of last year. Simply saying thank you for all you have done just doesn't seem like enough. God Bless you and your family.

I am gonna go for now, will let you all know more tomorrow when I get out of the doctor. Love and God Bless
Bobbette"

Anyway you look at this, miracles have happened. Most people struggle to find one kidney to match. As of right now, Bobbette has 6 kidney matches. None of the matches are family members or close friends. They are all strangers with hearts of a size I cannot even begin to imagine. More on that in a moment.

The next step is unfortunately not transplant. There is one more series of tests to be run. It will start with the person who is the best possible match for Bobbette. It is an extensive battery of tests, which includes blood work, a psychiatric evaluation, and a tube match. If the donors tubes do not match well enough with Bobbette's, they will need to move on to test the next person on the list. If the tests run as smoothly as we're praying they will, Bobbette could very likely receive her kidney transplant no later than the end of February.

Because some of the potential donors have asked to remain anonymous to people outside of our very small inner circle, we will not be revealing any of their names. A few of them have made it public that they are matches, and that's fine. However, Bobbette and her family and friends will not be revealing names. Should the person who ends up donating their kidney wish to make their identity public, we will do so at that time.

Another major thing has happened in the midst of all of this. On Christmas morning, Bobbette's boyfriend, Matt, proposed to her... and she said yes!

Neither Bobbette nor any of us close to her could have ever imagined an outpouring of love and support like the one we have received. We are beyond blessed to be in this situation. I know that may sound weird, considering that we're fighting for Bobbette's life, but if you can't find beauty in the struggle and the hard times, you'll never truly appreciate when things are going good. But I'm hoping that this grace does not end with doing something for Bobbette. There are so many people out there who need organ transplants. If you did not match for Bobbette, maybe you will match for someone else. If you don't have the opportunity to be a living donor, please consider sharing the gift of life and donating your organs when your life is done.

Thank you doesn't seem to be a big enough phrase. I love all of you who have read these words, but even that doesn't begin to cover the gratitude in my heart. And to one Mr. Donnie Wahlberg, it is with an amazed and grateful heart that I wish God to bless you, as well as your 4 NKOTB brothers. I'm sure when the 5 of you reunited, you never imagined you'd be saving lives, but you have. I'll be bringing Bobbette to see you on June 21 at the Nashville show. You bring the hugs, I'll bring the Kleenex, Bobbette will bring the kidney.

Saving Bobbette - Donate Life

As some of you know, my best friend of eleven years, Bobbette, is facing a kidney transplant. This her not her first organ transplant. She received a liver transplant at the age of 3. Her parents were told that she MIGHT live to be 7. She is now 30. Unfortunately, the medications she has taken during her lifetime to keep her liver functioning have destroyed her kidneys.

We are now beginning the search for a kidney donor for Bobbette. A living donor is her best option. A kidney from a living donor will last twice as long as one from a cadaver. With this being said, we were also informed that at her young age, this will be one of two kidney transplants that she will be facing in her lifetime. A kidney transplant is only a method of treating kidney disease, not a cure. We were told by Margot Chaffin, RN, BSN (Bobbette's transplant coordinator at Vanderbilt) to "open the gates," to ANY and ALL potential donors. The best way I know how to do that is word of mouth. And those of you who know me know that I have a very loud mouth when I need to get a point across.



While we do not have all of the criteria for a potential donor, I'm going to give an overview of what was explained to her. Any questions you have after that, her sister, Annette, will be happy to assist with at the following email address: Donate4JBM@gmail.com. She will probably be referring you to Vanderbilt University Medical Center's toll free # for donors: 1-866-748-1491 (you will pick option 3).

DONORS HAVE NO FINANCIAL RESPONSIBILITY. THE RECIPIENT'S INSURANCE & FEDERAL GRANTS TAKE CARE OF A DONOR'S TESTING,SURGERY TRANSPORTATION, LODGING, EVEN FOOD ALLOWANCE IF NECESSARY...PLEASE KEEP READING.

BASIC CRITERIA FOR POSSIBLE DONORS:
1. You must not be on medication for high blood pressure.
2. Cannot have any heart conditions.
3. Cannot have been treated for any type of cancer within the past 2 years. If you have had radiation or chemo, you are ruled out.
4. Must have a BMI (Body Mass Index) of 35% or less.
5. Cannot have diabetes.
6. If you are A or O blood type (+ or - doesn't matter), you can donate a kidney or blood. If you are NOT an A or O type, you can still help Bobbette. If you truly want to be a donor,then get tested to see if you match another recipient on the kidney waiting list. If you are a match for someone higher on the list, Vanderbilt participates in the nation wide swap program. Bobbette would move into their spot on the list. Example: Bobbette is #150 on the waiting list (it's hypothetical, don't know the actual #) but you get tested, match #75, donate to them, then Bobbette moves up to #75.

IF YOU ARE INTERESTED IN BECOMING A POSSIBLE DONOR FOR JANIS BOBBETTE MILLER THEN PLEASE CALL THE VANDERBILT KIDNEY TRANSPLANT TEAM TOLL FREE AT 1-866-748-1491 OPTION 3.

***YOU ARE NOT OBLIGATED IN ANY WAY BY CALLING THE NUMBER IT IS FOR INFORMATION AND COMPLETELY CONFIDENTIAL.

Annette has set up a Caring Bridge site to give people that may not know Bobbette more information on her and this medical journey.You can follow her progress and show your support.Visit the website in two easy ways:

1. Visit her CaringBridge website by clicking the link below.
http://www.caringbridge.org/visit/janisbobbettemiller

OR

2. Enter the website name, janisbobbettemiller, at www.CaringBridge.org

When you visit you’ll be asked to log in because she has chosen to keep the site private.



Let me take a minute for some personal thoughts: Bobbette has been my best friend for 11 years. When I first moved to Nashville, she was the only person I knew. We have been on many road trips together, lived together, and made so many memories that are priceless to me. We have spent holidays and birthdays with each other's families. She has taught me more about forgiveness and love and grace than almost anyone else in this world. She has held me on the floor while I cried, laughed hysterically with me, and held my hand through a lot of life's ups and downs. She is one of the strongest people I know, and I will fight for her life in any way possible.

Thank you for taking the time to read this and, hopefully, pass it on.