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Author Topic: Advocating for a transplant  (Read 11419 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: May 14, 2009, 11:28:32 PM »

I incorporated various ideas and wrote an article for RSN's newsletter about helping Jenna find a living donor - it's in the news section http://ihatedialysis.com/forum/index.php?topic=13917.0
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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: October 04, 2010, 10:38:06 PM »

You can also go to http://www.kidneyregistry.org/ and click on the "I Do Not Have A Donor" button for more tips on searching for a donor.
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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
VintageVera
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« Reply #2 on: November 26, 2010, 07:29:21 PM »

Karol: Thank you for the info on advocating for a donated kidney. I want to have alternatives to a cadaver donor. Your hard work for us with kidney disease is greatly appreciated. VERA
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #3 on: November 27, 2010, 12:43:01 AM »

 :) :thx; Thanks Vera.
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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
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #4 on: November 27, 2010, 05:20:40 PM »

Okarol and IHD family has anyone heard about the website "matchingdonors.com"? A D patient and his wife were talking to me about it and how they were signed up. Of course you have to pay money ($600) to the site to find a match....what do you think? Good Morning America had a segment on it. Is anyone else a part of the site? What are your experiences?

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #5 on: November 27, 2010, 06:02:25 PM »


If you use the search here you'll find many references to matchingdonors.com. I personally have no experience using them. Our transplant hospital was clear that they would not accept a donor found through their website. Check with your center before signing up.
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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
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #6 on: November 27, 2010, 06:41:30 PM »

  thx  Karol
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
MooseMom
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« Reply #7 on: April 09, 2011, 03:14:27 PM »

My husband told me that he had been considering asking their HR director if it would be OK if he sent an email asking if anyone would be willing to be tested.  (My husband is an attorney for a largish city outside of Chicago; as I mentioned in another thread, he has worked there for 20 years and has done a lot of good for a lot of people.  The city has 1500 employees, including firefighters, paramedics and policemen.  My husband thought that perhaps one or two of the many people he has helped over the years might consider donation)  I don't know if this will be allowed (no one is soliciting money, and if there was a legal problem, my husband is ideally place to deal with that), but if it is, I'd like to make sure this email has the proper information.  Could any of you help?

I'm drafting just the bare bones of an email.  So far, I've said that a transplant from a living donor is the best treatment for renal failure, that the current wait time in Chicago for a deceased donor organ is 6 years, that "my wife" has been approved for transplantation and is currently listed, that our insurance would take care of a donor's medical expenses (the donor would have the same insurance we do, if the donor was a city employee) but that no other monetary compensation would take place, and that the transplant coordiinator's contact details are blah blah blah.

I also included the web addresses for the NKF's living donor page and that of the National Kidney Registry.

I need to keep it short and sweet without any hint of emotional manipulation, etc.  Does anyone have any suggestions as to what else should be included or left out?  I would really be grateful for any assistance.  thank you

Turns out my husband hadn't wanted to mention to me that he wanted to ask about sending out this email because he didn't want me to feel bad if he wouldn't be allowed. 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
jbeany
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« Reply #8 on: April 09, 2011, 08:46:10 PM »

I'd want to include a sort of general donor awareness plug, too.  How many people in general are dying on the list every year/month/etc.  Just a quick note that they could consider giving this fabulous gift of life to anyone who matches, not just the person mentioned.  Maybe that's just me, but I think I'd feel like it was a plea for help for anyone, not just me, and therefore less chance of the "emotional manipulation" you aren't comfortable with.

 Maybe a link to an article about a successful live altruistic donor, like Jenna's, or one that was more local?  An example of it happening in the real world can't hurt.
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MooseMom
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« Reply #9 on: April 09, 2011, 10:11:40 PM »

I'd want to include a sort of general donor awareness plug, too.  How many people in general are dying on the list every year/month/etc.  Just a quick note that they could consider giving this fabulous gift of life to anyone who matches, not just the person mentioned.  Maybe that's just me, but I think I'd feel like it was a plea for help for anyone, not just me, and therefore less chance of the "emotional manipulation" you aren't comfortable with.

 Maybe a link to an article about a successful live altruistic donor, like Jenna's, or one that was more local?  An example of it happening in the real world can't hurt.

Very good ideas!  Yes, asking people to consider donation in general would make me feel good.  Thanks for that.  I know that a security guard at our local hospital was given a kidney by another employee who just happened to hear his story; I'll look for a link to that.  I appreciate your thoughts!


PS...OK, I found the link and copied into the email I've drafted.  I've also included a request to consider live donation to anyone in need.  I am not sure what the city manager will determine what is appropriate and what might not be, so I have to be guided by his decision in this regard.  Of course, this is all assuming he will let my husband send this email at all.  If he does not, I've asked my husband if the city manager/HR director could give any suggestions on how we can spread the word that the city would find more palatable.

If anyone has any further suggestions, I'd really REALLY appreciate some guidance.  This is not easy for me. 
« Last Edit: April 09, 2011, 10:45:00 PM by MooseMom » Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
okarol
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« Reply #10 on: April 09, 2011, 11:50:58 PM »

MM - I would happily read your email if you want to share, just PM me.

I found the email we sent out to friends and family - and I also posted it on Jenna's website, with a photo, in 2004: http://i-korn.xanga.com/?nextdate=6%2f27%2f2005+0%3a16%3a9.260&direction=n
It is long, probably could be shorter, but for what it's worth, here it is:

~~~
Our daughter Jenna is praying for a kidney transplant. She is the oldest of our four children and was always a healthy, cheerful child. Jenna was diagnosed with kidney disease in the spring of 2001, at 15 years old. I remember holding her hand when the doctors told her the bad news. They said eventually she was going to lose those kidneys and there was nothing they could do about it. Her father and I were devastated. The damage was caused by a defective bladder, and had slowly occurred over time, with no apparent symptoms. She immediately began medications to control her blood pressure and to keep infections away.
 
Jenna was able to live without dialysis until her senior year of high school in 2003. She required emergency dialysis treatment that winter. She continues on dialysis to this day, and while it has sustained her life, it has also been very tough to endure. She must be treated three hours a day, three days a week.  Her life quality remains poor due to fatigue caused by anemia.  It is quite a challenge for a teenager to struggle with such demanding medical issues.
 
Jenna graduated from Maranatha High School in June 2004 and started classes at Pasadena City College in Sept. She loves books, video games, movies, singing and theater arts. She wants to be an actress someday. We hope that she will continue to dream for her future and pray she will be given the opportunity to experience the complete life she deserves to have.
 
Jenna is at the point where we need to locate a living donor. Her blood type is O Positive, which means she has still has a 5 to 6 year wait on the nationwide cadeveric organ list.  We had hopes that her father would be a match to donate, but due to recent health issues he has been disqualified as a donor. I (her mother) have an incompatible blood type, and her three siblings are under 18 years old, too young to be considered.
 
People often ask how they can help.  We hope someone will consider donating a kidney so she can get off dialysis. If you need to know more about the transplant process itself, we can email you information. Please contact us at the following email address: kidney4jenna@yahoo.com.  The donor must be blood type O (positive or negative) - between the ages of 18 and 65 and in good health. Any other medical conditions such as hypertension, diabetes, or any other medical problems could exclude someone from the donor process. Jenna's Transplant Coordinator will ask you some health questions to begin the evaluation process. She can also answer any questions you may have. Any communication or results with the transplant team is completely confidential.

The National Kidney Foundation has an online resource for living donation at http://www.kidney.org/recips/livingdonors/index.cfm. Whether you are a living donor, potential donor, recipient, family member or friend, you'll find many different resources here. You can also learn about living kidney donation from Living Donors Online at http://www.livingdonorsonline.org/kidney/kidney.htm. An updated blog about Jenna is at http://www.caringbridge.org/visit/jennafranks - please sign the guest book there!

Please spread the word and pass this site on to your friends and family.  Most importantly we appreciate your prayers and good wishes. Thank you from a grateful Mom. ~~ Karol Franks
~~~~
« Last Edit: May 19, 2011, 11:46:43 PM by okarol » Logged


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
MooseMom
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« Reply #11 on: April 10, 2011, 11:32:44 AM »

Thanks for that, Karol.  I am struggling with the appropriate tone.  I don't know if the email should have an "emotional" bent, or if it should just be dry and to the point.  Since it would be sent through the city's email, I need to be careful and guided by the city manager.  If he thinks a more emotional appeal would be OK, then I have your email to help me.  Thanks so very much!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #12 on: April 10, 2011, 11:45:38 AM »

You can see examples of posts made by other patients or their family members in the "Looking For" section on Living Donors Online here http://livingdonorsonline.org/ldosmf/index.php?board=5.0
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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
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #13 on: April 10, 2011, 01:58:39 PM »

okarol thank you for sharing your letter. What a great momma Jenna has!!!

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
MooseMom
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Posts: 11037


« Reply #14 on: April 11, 2011, 02:42:23 PM »

Well, my husband approached the HR manager for the city with the idea of getting out the message that I need a kidney.  She said that he could use the city's bulletin board for that purpose and asked that he write up something and let her see it before posting it.  I am not sure if the "bulletin board" is some sort of electronic thing that all employees can see via their email or via the city's website, or if it is an actual, physical bulletin board, but at least we have permission to post something.  It's a first step that I am comfortable with.  Thanks, everyone, for your input.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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