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Author Topic: Advocating for a Family Member  (Read 2602 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: May 14, 2009, 11:25:52 PM »

Advocating for a Family Member

by Karol Franks
Renal Support Network www.rsnhope.org
Spring 2009 Newsletter Live N Give

When our daughter Jenna was diagnosed with kidney disease, it was a huge shock to our family. The doctor said, “In 1 to 5 years, she will need dialysis or transplant.” That was the worst news ever. She was 15 years old and in (what we thought) good health, besides having what they called a “non-neurogenic, neurogenic bladder.” After the initial angst and mourning, I got busy trying to find answers and solutions to help her.

We took her to numerous appointments the month following her diagnosis. We had her examined by 3 different urologists, 2 nephrologists, 2 neurologists, and all the information came back the same. She was facing a life-long illness with no cure.

I began to research on the internet. It took a while to find help, but when I came across message forums with other patients and caregivers sharing their experiences, it was great support. So many people had been down this path before, and their knowledge was invaluable. Good sites are ihatedialysis.com and kidneyspace.org.

When it came time to begin dialysis, Jenna was a senior in high school and very sick. Life inside a dialysis unit was a foreign and frightening experience. Even though we had tried to prepare for it, I don’t think we really knew what to expect. We were fortunate to live close to a well-regarded unit and she got good care. But we had to stay on top of what was going on, always reviewing her lab slips, double checking her dry weight so they would not remove too much fluid, asking questions and again, getting help from other patients.

Jenna was evaluated and accepted on the wait list for a kidney. Sadly, there are thousands of other people waiting as well. The wait time in our area was 5 to 7 years at the time, with the list growing every day. During her three years on dialysis, Jenna had about nine people offer to donate a kidney, but for various reasons they were found to be unsuitable donors. I had hoped I could donate a kidney to Jenna, but unfortunately was the wrong blood type. We changed transplant centers because the local one did not accept strangers as donors. We began to look for an altruistic donor willing to give a kidney to Jenna.

To find a living donor, I would recommend what worked for us:

1.) Set up a free Caringbridge site (it's FREE) and post your story and some photos and start your journal. http://www.caringbridge.com

2.) Let your story be known. Email all your friends, relatives, co-workers, alumni association, fraternity/sorority, neighbors, and church that you have the Caringbridge site and ask that they get the message out that you're hoping to find a kidney donor.

3.) Be sure to check to see if your hospital will accept an altruistic donor (some do not) and if it looks good go to http://www.livingdonorsonline.org/recipients.htm and read about searching for a kidney. You can also post a "Looking for" message on the forum at http://www.livingdonorsonline.org/cgi-bin/dcforum/dcboard.cgi - NOTE: set up a separate yahoo or hotmail email specifically for responses so you will not get spammed or give out your primary email. It is illegal to buy organs. Use common sense when dealing with strangers on the internet.

4.) If your transplant center will accept them, post a plea for a donor on www.Matchingdonors.com. There is a fee, but it will be adjusted or waived for those people who cannot afford it.

5.) If you have a friend or family member who is willing to donate but is the wrong blood type, you could possibly arrange a swap through John Hopkins Hospital or the paireddonationnetwork.org

6.) We went through a rollercoaster of feelings with each donor who turned out to be unsuitable. And each time I would think "What if no one else comes forward...?" But then I would hear from another kind soul. It really gives you faith in mankind when strangers offer to help. You want your transplant team to be thorough in their evaluation of a potential donor. Protecting the donor while giving the recipient a new start is the goal!

6.) If you are the patient and are too sick or overwhelmed to explore options, or don't have access to a computer, ask someone to help do this for you.

7.) Don't give up.

Jenna is now two years post-transplant and doing great. Her donor is also healthy and back to her normal activities. There is a lot of support and hope, whether you’re the patient, caregiver, family member, or friend. The whole process can be daunting, but it’s worth it.

Karol Franks lives in Southern California. She is married and a mother of 4. Her 22 year old daughter received a kidney from an altruistic donor in Jan. 2007, and as a result Karol became an advocate for patients and living donors. She serves as an administrator for livingdonorsonline.org - an online community for living organ donors, potential donors, their families, and medical professionals. She also volunteers as an administrator for ihatedialysis.com, a patient support forum for patients and their families as they cope with living with kidney disease.

.............
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
pelagia
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« Reply #1 on: May 15, 2009, 02:12:38 PM »

 :thumbup; :thumbup;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
willieandwinnie
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« Reply #2 on: May 15, 2009, 03:09:53 PM »

 :yahoo; I needed some good news this week.  :flower;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
monrein
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Might as well smile

« Reply #3 on: May 16, 2009, 11:59:13 AM »

That's a really helpful guide to the process Karol.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
okarol
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Photo is Jenna - after Disneyland - 1988

WWW
« Reply #4 on: July 10, 2010, 03:56:44 PM »

To update this, I would add:

If you have a willing donor but they are not a match - there's still hope!

The National Kidney Registry (NKR) has facilitated more than 100 transplants at 24 centers in the past 2 years and the numbers are rapidly increasing. The NKR has inherent capability for rapid change as innovations are developed and incorporated in the approach to matching donors and recipients in transplant chains. Kidneys are shipped with geotracking devices utilizing existing OPO procedures whenever patients are willing to accept them. This reduces the need for donor travel and increases the geographic area where matches can be made. Kidney Recipients - Tips for the best outcome: http://www.kidneyregistry.org/kidney_recipients
 
The Alliance for Paired Donation can help. Kidney paired donation matches one incompatible donor/recipient pair to another pair in the same situation, so that the donor of the first pair gives to the recipient of the second, and vice versa. In other words, the two pairs swap kidneys . APD has also pioneered a new way of using altruistic, or good Samaritan, donors, so that the transplants no longer have to be performed simultaneously. Non-simultaneous Extended Altruistic Donor Chains (NEAD Chains ) allow donors to “pay it forward” after their loved one receives a transplant. http://www.paireddonation.org/

The Paired Donation Network is
a not-for profit 501c3 corporation that consists of a network of regional, multistate paired donation consortia whose purpose is to make paired donation available to all patients with kidney failure. Paired donation is a procedure that allows individuals who wish to give a kidney to their loved one, but cannot because they are incompatible (they have the wrong blood type or their loved one has immunity to their kidney).  In paired donation, the donor and recipient are matched with another incompatible donor/recipient pair and the kidneys are exchanged between the pairs.   http://www.paireddonationnetwork.org/
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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