Transplant Progress Report: Living Donors

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If you would like to post this button on your blog, click here for the code and Thank You.

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and you would like to read more about our story, you can use the links below:

My Story : Part 1

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For other posts, feel free to click through the archives, located in the right sidebar.

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A few months ago, I was placed on hold with UNOS for a kidney transplant. Alot of it had to do with this hospitalization. There were some other issues that needed to be addressed as well, and things seem to be coming back together now.

After talking to my coordinator today, I anticipate being "active" on list again within the coming month. This means they will begin to contact living donor candidates one by one and begin the testing process. This is a crucial step for me since we know that I will be a hard match.

To refresh the situation, as a transplant candidate I am required to submit a PRA blood test every two weeks. It basically measures the level of antibodies / antigens in my blood at that moment in time. This will determine what organ would best "fit" me with the lowest chance of rejection.

Since my PRA levels have been so high to this point, I stand a greater chance of rejecting 90% of the organs that may become available through the general population.

So, it becomes a numbers game. The more available organs I can be exposed to for consideration, the higher the chance I have of finding one that will work. Right now, they are estimating my wait to be 6-10 years.

The best match would come from a family member. John's blood type is different, and the kids are not 18 (the minimum age required to donate). This is one drawback to being an only child.

I'm going to step completely outside my comfort zone here.

Since this started, I've been uncomfortable with asking the question of anyone, but as this disease progresses I am beginning to understand that my current treatment is not an effective long term solution. At times and in the back of my hear, I've just assumed this would all work itself through.

Would you consider being a living donor?

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Here are some FAQ's on the process:

Who can be a kidney donor?
While it is not necessary for living donors to be related to the recipient, they are usually friends or relatives. The decision to donate an organ is important and must be made by the person and his or her loved ones. You should not, under any circumstances, feel pressured to donate an organ. Our experienced transplant team stands ready to advise and assist you in this process.

General requirements of living kidney donors are:

• age 18 to 70 years
• good general health
• normal kidney function and anatomy, as determined in the evaluation process

Conditions that would exclude a person as a living kidney donor:

• diabetes
• certain forms of cancer
• intravenous drug use
• certain infectious diseases, such as AIDS or hepatitis

How do you donate a kidney?
When you agree to donate a kidney, you need to be evaluated at Mayo Clinic's Dialysis and Transplant Center. You will first have a brief telephone interview. Based on this information, a kit for blood sampling may be mailed to you. You then take this kit to your local medical lab or hospital and have a blood sample drawn. Instructions for mailing the samples to Mayo Clinic are included in the kit.

 

If these results prove suitable, you will need to have a medical evaluation to make certain that the donation will not cause you harm. Much of this can be performed by your own health-care providers.

 

At a suitable time the donor must travel to Rochester to meet with a Mayo Clinic nephrologist (kidney specialist) and surgeon and complete the assessment. These Mayo physicians will discuss all aspects of the testing and donation with you.

 

If at any time a test result shows that you do not meet the criteria for donation, the evaluation is stopped. One of every five potential donors is found not to be suitable for donation.

 

What risks are associated with kidney donation?
Although some risks are associated with any major operation, donating one kidney does not pose a major risk to a healthy donor. Studies show that the remaining kidney will continue function normally and will compensate for the loss of the other kidney.

 

Kidney donation should not restrict or interfere with your lifestyle after full recovery from the surgery. There is no routine need for any special diet or medication after donation.

 

When is the transplant scheduled?
When a suitable donor is identified, the transplant is scheduled at a convenient time for both donor and recipient. Every attempt is made to identify a time convenient for both parties. This is usually four to eight weeks after the completion of the evaluation. Donor and recipient both return to Rochester a few days before the transplant.

 

How is the donation surgery performed?>
The term "nephrectomy" refers to the surgical removal of a kidney. Two types of surgery can be used to accomplish this:

 

•   Laparoscopic Donor Nephrectomy
  This operation is performed by using a "scope" to peer into the abdomen through a small incision. This approach makes it possible to locate, secure, and remove the kidney through a surprisingly small wound. This "minimally invasive" surgery allows for a faster recovery than with the traditional operation. Donors are generally able to leave the hospital one or two days after the surgery and can often resume work within two to three weeks.
• Traditional Donor Nephrectomy
  This operation is performed using an incision across the flank on one side of the back. The kidney is secured and removed under direct vision. Most donors need to stay in the hospital for four to five days and can usually resume work in three to six weeks, depending on the type of work they do. This method is widely used in other transplant centers, but is rarely required at Mayo Clinic.

Will I need any follow-up evaluations?
Six to nine months following your surgery you will need to have blood and urine tests and be evaluated by a nephrologist. The kidney transplant coordinator will schedule these follow-up tests, which do not require a stay in the hospital. The results will give a good indication of the function of your remaining kidney.

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I am currently working with Denver Porter Adventist Hospital, in Denver CO. Once I go active on the list again, I will also be going back to the Mayo Clinic here in Scottsdale AZ as well as looking at at least one hospital in the Los Angeles area. Our nephrologist seems to think there is one in LA that does High PRA protocol transplants, so once we have the name we will move forward as well.

The first requirement is that you have a blood type of either A or O.  If you don't know your blood type, no worries. They will test you if accepted for consideration.

*To answer the questions below, I have been told "any A or O" will be considered. Thanks for asking to clarify :)!

Please know that all costs associated with the entire transplant experience (with the exception of costs related for travel to/from the hospital for surgery) are completely covered 100% by my insurance.  We are working on ways to offer payment for travel related costs to the final approved donor. 

The process can be done anonymously (to me) if you chooses, simply by contacting Porter Transplant at 1-888-872-8891. Ask for the Living Donor coordinator and tell them you are interested in consideration for Kelli Bach. She will ask some health related questions from the list above, and if you are ok, they will mail some paperwork to fill out. A simple questionnaire.

From there, they will take all candidates and put them in order of potential match. Testing would be done locally to you and mailed back to the transplant center. No travel to the center is required (that we have been told about) until the actual surgery.

I know this is a huge request. I don't expect a huge response.

Also, another request - would you consider a link back to this post on your site? There may be someone out there beyond our scope that would be interested. Maybe not for me, but another person needing an organ transplant. We never know.

Either way, if God lays it on your heart to  participate in this in whatever way, then all glory to Him.

And to step even further out of my comfort zone, I'm going to finally post a picture. I'm totally insecure about doing this, because of the weight I've gained through the dialysis process. I will say that in the last 2 months I've lost 40 pounds, and am nowhere near where I want to stop. But, it's time to put a face to the story.

To my sweet, loving, cajoling friends who helped me see that I was needing to take this step, I love you all. I mean, seriously, I guess I was being silly. Insecure. Human.  I don't know why this is so hard, but somehow, oh well.

I hope that came out right :)

Again, I love you all. Thank you for keeping me honest and real.  Accountable.

Here goes ....

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Comments

[Joanne Kennedy]

Hi Kelli,

First I want you to know I am keeping you in my prayers. This has to be a really hard time for you.

I have O- blood and have always wanted to dontate a kidney. So I'm here for you! I've been told I have super good kidneys too so lets pray this works out for you.

Do I call or do you call or what should I do from here?

Please email me at jk51958@yahoo.com and let me know how to proceed.

Big hugs,
Joanne

[Bill Smith]

Kelli I will be praying for you. I know what you are going through, I am on my second transplant. My first lasted 33 years before it failed. I am 4 years into my second transplant. I truly beleive that my faith and trust in GOD is what got me through. My fisrt was easy because my mother was the donor. The second was not as quick. I had been on dialysis for a year and also on the transplant list. One night my sister-in-law called and asked if she could be a donor. The rest is history. I pray that perfect kidney will come along very soon. GOD has blessed me in so many ways I just wanteed to offer you encoragement. GOD will not take you to, something he cant bring you through.

[Sonya]

Praying for you! Hang in there. My BIL just had a kidney/pancreas transplant a few days ago. He'd been waiting for close to a year and had "false alarms" three previous times. We thought he would never get the transplant but God is gracious and blessed him. I pray He shows you the same mercy. Raising awareness and the need for organ donation is a great way to get things jump started. So many people never even consider it. Keep the faith and pray diligently, as all of us in the bloggy world do the same!

[Sonya]

Praying for you! Hang in there. My BIL just had a kidney/pancreas transplant a few days ago. He'd been waiting for close to a year and had "false alarms" three previous times. We thought he would never get the transplant but God is gracious and blessed him. I pray He shows you the same mercy. Raising awareness and the need for organ donation is a great way to get things jump started. So many people never even consider it. Keep the faith and pray diligently, as all of us in the bloggy world do the same!

[sara]

I would totally do this, I met a girl at the walmart check out lane, she's 20 years old and end stage renal failure. I jumped all over giving her one of my kidneys. I have this stupid blood disorder that I've had since I'm two, I just have to get blood and iron a few times a year to correct it, it has nothing to do with my kidneys, yet they wont accept me. She isn't even healthy enough for a transplant now.

Anyway, the community really pulled together and a lot of people got tested. I'm going to share your story with my church, and community. Somewhere, someone can help you. I'm sure of it.

Praying for you Kelli

[Overwhelmed With Joy!]

Kelli, I only have one kidney myself (I had to have my right one removed when I was 2 years old) so I'm not even able to consider your courageous request.

I will be praying that the right donor match comes to you very soon! I'm putting your button on my blog sidebar and linking it back to this post, in the hopes that someone will see it and consider.

I'm glad you posted a picture of your sweet face. It's nice to finally "see" you.

Hang in there and know that you have many, many people praying for you!

[A]

You're in my prayers.
My brother will liekly need a kdney transplant soon, so I understnad what you're going through.

[Melissa]

Here via Shannon at Rocks in my Dryer - you and your family are in my thoughts!

[Tamara Cosby]

Praying and Linking. Praying...

[Fox's Momma]

Kelli,
I've posted this on my little blog, and our church and small group is praying.
I've called and been interviewed, and they are sending me the packet to complete. I hope if I'm not your donor that you will find him or her soon.
Continuing to pray,
Michelle

[Alli]

Kelli,

You are in my prayers during this time. I know that God is holding tight you to, and he will find you the perfect match!

Alli

[Beth_C]

First, let me say, you are beautiful! I am praying for you. I am asking God to send you the perfect kidney and to heal you.

Blessings,
Beth

PS - I have multiple sclerosis. I can't even donate blood. I'm sorry!

[Nancy]

I will post a link on our site:
PMS Club - Prayer, Ministry, Sisterhood; and will add you to our prayer list.
God bless you.
www.pmsclub.weebly.com

[Cricket's Hearth]

Hi Kelli,
I will hold you in my prayers.
Blessings, Cricket

[Sheila]

Oh Kelli thank you! THank you for being so vulnerable and beautiful as God does this amazing work in and through you! I will post a link on both my blogs and be prayerful about my role also. I will also keep you in prayer!

Praying even now for God to raise up His kidney for you and His glory to be revealed in it all!

[Pastomac's Ann]

Praying for a miracle. Praying what my part in that may be.

Love you.

[Elisa]

Kelli, I'm going to post a link on my blogs and pray for answer to this real need. It will be a match made in heaven, for sure, as God has you in the palm of His hands.

Love,
Elisa

[Liza's Eyeview]

Praying that a donor comes soon.

http://lizas-eyeview.blogspot.com/2008/01/kidney-for-kelli.html

[Greatfullivin]

I will add you to my prayer list and snag your button with a link back. God said he would supply all of our needs. I am claiming that promise for you!

[Chris]

You are a BEAUTIFUL woman.

[Chris]

You are truly beautiful, inside and out. Praying for you as always.

[Rocks In My Dryer]

Kelli, I'm posting a link to this on Sunday.

Many prayers, dear...

[Gretchen]

Praying for you, Kelli. Thanks for the picture. Now I can better imagine you in my prayer time. I'm going to put up the sticky link today.

[Episcopollyanna]

Kelli, I just found your blog last night through BooMama and I want you to know that you are in my prayers. I am in the bone marrow registry but I just found out that I can no longer be a donor because I've had cancer twice and have had chemo. So I can't be a living donor either, I don't think. :( But I can offer you my prayers and support. God does mighty things each and every day! ((hugs))

[Denise]

Big prayers for you. We adopted our son 2 years ago from Haiti, and he has FSGS... we know his eventual prognosis is most likely a transplant.

I pray a kidney is available for you soon.