Losing a kidney, gaining family (This is Jenna's donor!)

[okarol]

Losing a kidney, gaining family

By JUNE CHANDLER-WHITE
Staff Writer, The-Daily-Record.com

Feb. 12, 2007
Wooster, Ohio

Patrice Smith is the kind of person who would give her left kidney to help a stranger. Everyone who knows her is not surprised she did.

"I wasn't surprised at all, not with her. Patrice is one of a kind, and such a compassionate person. She just felt this need to be able to help somebody because she could," said Pam Tegtmeier, recalling her reaction when she learned her best friend of 20 years planned to pay her own way to fly to California to donate an organ to a young woman she'd never met before.

It doesn't take two decades to see Smith, a secretary at The College of Wooster, mother of four, competitive swimmer and veteran marathoner, has a truly giving spirit. All it takes is her story.

It began when Smith read in The Daily Record early last year about a local man who was coping with kidney failure, dealing with dialysis, feeling his life was in limbo as he waited for a transplant. She didn't know the man in the story.

"But I just couldn't let it go," Smith recalled.

She clipped out the story and showed it to her husband, Jeff.

"I gave the article to my husband and had him read it. He said, 'You want to donate, don't you?'" Patrice Smith recalled, noting her husband was concerned for her welfare, but supported her fully, in part, Patrice joked, because after 12 years of marriage, he knows her very well.

"He said, 'Does it really matter what I think?'" Patrice Smith recalled, adding serious discussion with the entire family led to everyone agreeing donating was the right thing for Patrice to do.

With the support of her family, stepdaughters Ceason, 27, and Jordan, 25, and sons Brian, 20, and Kevin, 18, Smith's research began. In March she contacted the local kidney foundation, who put her in touch with a transplant coordinator at the University of Pittsburgh Hospital. Preliminary tests determined Smith, of Wooster, was a match for David Sherrill, the man she had read about in the paper.

"We weren't friends to start, but through the course of it, we became very close friends," Smith said, noting both hoped the transplant would take place in summer. When more tests on Sherrill determined he needed heart bypass surgery, the transplant was rescheduled for October.

Then came "awful" news. A blood transfusion during Sherrill's bypass surgery had changed the antibodies in his blood, making him incompatible with Smith for a kidney transplant.

"Three days before the transplant was supposed to take place, we had a final cross-match, and his antibody levels were high. It was awful, it was really awful," Smith recalled. "They said, 'We can't do this.'"

Smith felt devastated for her new friend, who is still waiting for a transplant. She also was confused about what had happened. Unable to answer her questions, the transplant coordinator referred Smith to an online site for donors.

"I put my questions online, and this person, Karol, answered. I was really thankful. She was very articulate and explained to me what had happened," Smith recalled.

In clicking around the Web site a little more, Smith found the story of a young woman named Jenna Franks who lived in California and needed a kidney. She sent an e-mail, and learned Jenna was the daughter of Karol, the woman who had answered her questions.

"(Karol) never told me anything about Jenna. I found her on my own, basically," Smith recalled. "I wrote to Karol (again) after I read Jenna's story. I said, 'I am the same blood type, I may be able to help your daughter.' We were both being very reserved and cautious," Smith recalled, explaining the communication was a leap of faith for all parties involved.

"She gave me the name of the coordinator of the Scripps Hospital in La Jolla. I contacted them, and I actually filled out an application," Smith said.

Within days, the transplant coordinator at Scripps contacted Smith, asking if she could arrange for her records to be sent from Pittsburgh. In November, Smith and her family were on a plane to California.

"They are very cautious out at Scripps. They required us to meet. They wanted to make sure that everything was ethical, that I was not getting paid or being coerced. I met with the social worker and the nephrologist and the surgeon, and it was the same questions, over and over; they were very thorough," Smith recalled.

She also met the Franks family -- Karol and Jenna, dad Ed, James, 18, Becca, 16, and Johnny, 9.

"It was very emotional. It is hard to explain what it felt like to meet them," she said, noting because Jenna is so close to her eldest son's age, she felt a special desire to help her.

"Jenna is shy, she is incredibly confident. She is, other than this illness, a typical 21-year-old young lady," Smith said, noting she believed the media attention Jenna's story drew was overwhelming to her. For that reason, Smith said, when the surgery was scheduled for Jan. 16, Smith entered the hospital anonymously.

"The hospital said they had gotten some calls (from media) wanting to follow the story," Smith said. "I was afraid that something would happen, and I didn't want to make anyone uncomfortable."

Smith said she slept well the night before the surgery, despite having to get up to use the bathroom as medications to clear out her system did their job.

"I didn't have to drink 'the stuff,'" she said, referring to high-powered laxatives she'd heard "horror stories" about.

After 3 1/2 hours of surgery, Smith woke in the recovery room, her left kidney already busy at work in its new body. Smith admits her mind was relieved, but her stomach was upset from the general anesthesia.

"I was throwing up, and of course a new incision, it feels like you are just going to bust out," Smith, who also is a veteran of two Caesareans, recalled. "Thank God Jeff was there, because he took care of me. He did a great job."

After two days in the hospital, and the 10 outpatient days required by the hospital, Smith and her family were on the plane for home. Jan. 29, she returned to work. And less than two weeks after the surgery, she was back to doing what she loves best of all.

"I started running less than two weeks after the surgery. I am training for the Boston Marathon with Pam (Tegtmeier)," said Smith.

Just as no one who knows Smith was surprised to learn she was donating a kidney, no one was surprised to learn she was back to training for her next marathon less than two weeks later.

"We did an 18-miler the day before she left for the surgery," Tegtmeier said.

Smith acknowledges being so fit has played a large role in her quick recovery. She credits her friends and family for supporting her decision to donate.

"The closer I got, I'll admit the more scared I got, but the closer I got, the more support I got," she said. "This sounds so corny, but it did feel like it was a football team and we were at the Superbowl, I had so much support. I was just the quarterback throwing it to the receiver. It couldn't have gone any better."

There also have been some laughs.

"Did she tell you about the chocolate?" asked Smith's co-worker Kim Tritt. Smith is a known chocolate lover, Tritt said. Jenna Franks never was -- until she got Smith's kidney.

"We joke around that Patrice's cravings have been transplanted," Tritt said with a laugh.

Tritt added she and her co-workers also joke Patrice had an ulterior motive in donating to a woman in California.

"A part of her always wanted to live in the warm weather," Tritt joked.

Smith takes the joking in stride. After all, that's what friends are for, and she says she never realized until now how many she had. She also said she didn't know how much she would gain by losing a kidney.

"(The Franks) family, they are so cute, they are funny, and just very normal, and close, you can tell they are close," she said, noting she maintains regular contact with the Franks family, who calls Smith "their hero."

For the first time since her kidneys failed six years ago, Jenna Franks is able to dream of a bright future, which she hopes includes finishing college and starting a career, possibly as an actress. For Smith, that is the greatest reward of all.

"She is doing really, really good," Smith said with a big smile.

--------------------------------------------
Reporter June Chandler-White can be reached at (330) 674-1811 or e-mail jwhite@the-daily-record.com.


URL: http://www.the-daily-record.com/news/article/1593282

Here's the news story of Jenna's search for a donor http://ihatedialysis.com/forum/index.php?topic=2167.0



EDITED: Topic Stickied - Epoman, Owner/Admin

[angela515]

Such a beautiful story! 

[livecam]

What a great story and an inspiration to other patients and prospective donors.  Another happy story similiar to yours is going to be happening for another member of this site.  Just who that might be is a state secret but you'll be hearing about it one of these days.  Another happy day coming to a computer near you soon.

[Sluff]

Great story for Patrice. I'm just curious as to how this case gets all this media coverage and others don't get any.

[okarol]

Great story for Patrice. I'm just curious as to how this case gets all this media coverage and others don't get any.

Hi Sluff, I am not sure how newspapers decide what to cover and what not to. It's up to the reporter to tell a story.
When the reporter for the LA Times first contacted me he was actually writing a story about the ages of recipients
and the cadaveric kidneys they received. He was looking for young people who had been on dialysis for awhile. He
didn't end up interviewing us for that article, but through later conversations became interested in developing a
story about living donors met through the internet. The story about Patrice was written because she lives in a small
town and it was front page news!

[Sluff]

It's great that her story was covered but I wish others stories were covered as well. Great story.

[okarol]

I read many stories every day in papers all over the world about people needing kidneys
and people donating kidneys. There isn't a day that goes by that I don't see them. I post
what I can, but you could fill books with all of them. Maybe you just see ours, but that's
obviously because I am posting them. Maybe I am making too much of them, and that makes
you (and maybe others) uncomfortable. Sorry, that is not my intention. From day one I took it
upon myself to post articles because I think it can inspire people to hope. There is a lot of
media attention in this area of medicine, which is the best way to create awareness, thereby
hopefully motivating people to sign up as donors after death, or to even become living organ
donors! Patrice decided to donate after reading a story in her local paper. That's the best
possible outcome, in my opinion.

[Sluff]

I read many stories every day in papers all over the world about people needing kidneys
and people donating kidneys. There isn't a day that goes by that I don't see them. I post
what I can, but you could fill books with all of them. Maybe you just see ours, but that's
obviously because I am posting them. Maybe I am making too much of them, and that makes
you (and maybe others) uncomfortable. Sorry, that is not my intention. From day one I took it
upon myself to post articles because I think it can inspire people to hope. There is a lot of
media attention in this area of medicine, which is the best way to create awareness, thereby
hopefully motivating people to sign up as donors after death, or to even become living organ
donors! Patrice decided to donate after reading a story in her local paper. That's the best
possible outcome, in my opinion.

Actually OKarol I think it is an inspiration for the renal community to see these articles.

[DeLana]

Great story!  I guess one reason why we don't see more of those is that there simply aren't a lot of anonymous living donors out there.  It's a wonderful, very selfless thing to do.  Many people donate blood or even marrow, but that's completely replaced by the body.  A kidney is a whole different story, and very few, very special individuals are willing to do this.

I think it would be a good thing if the media would ALSO focus on people who donate kidneys to their own family members - siblings, parents - because the need is great (many ESRD patients have siblings who are potential donors) but so is the fear of the would-be donors.  The more attention - and therefore education - the better.

Thanks for sharing.

DeLana   

[okarol]

I don't understand. There are TONS of stories everyday about living donation, related and non-related.
I post a lot of them, but sometimes barely anyone reads them. But there are lots. Maybe you aren't
looking for them, like I am, but if you do, you'll find them. If I posted all of the ones I see everyday I
would use up all of Epo's bandwidth!

[Wattle]

Hi Karol

The stories are great. There are not many that come out of Australia. I don't read them in the paper very often. If I do I cut them out... my collection is not very big...

[Epoman]

This thread has been given a "Sticky" 

- Epoman
Owner/Admin

[Sluff]

I don't understand. There are TONS of stories everyday about living donation, related and non-related.
I post a lot of them, but sometimes barely anyone reads them. But there are lots. Maybe you aren't
looking for them, like I am, but if you do, you'll find them. If I posted all of the ones I see everyday I
would use up all of Epo's bandwidth!

Your right I try to read them, and you are right I guess I could try a search to find them, I was just generalizing my Local area you never hear anything.

I wish for it to be so common that the general populous would see it and realize that a donors position could be a rewarding experience.

They make more issue about banning smoking everywhere instead of getting people to donate.

[angela515]

You are correct sluff, I don't see them in my area either. I read the paper everyday here, not one story the whole time I lived here.

[kelliOR]

Karol,

That is a great article on Patrice!  It was nice to read about her view of the experience.  Thanks for posting it.  Kelli


I want to add that I like reading all the articles that you post about recipients and donors, but for some reason, they make me feel sad, too.  Although they inspire hope,  they also bring to a realization of how many people go without an altruistic unknown donor.

[okarol]

Hi Kelli, I agree, it makes me sad too, to think of all the people here, and all the people at Jenna's dialysis center,
all the patients that may not have options. But you cannot give up, if I can find a donor who is willing to make
a sacrifice for a stranger, so can anyone else. It isn't easy. But waiting isn't easy either.

[kelliOR]

But you cannot give up, if I can find a donor who is willing to make a sacrifice for a stranger, so can anyone else. It isn't easy. But waiting isn't easy either.

You are absolutely right, Karol.  Can't give up hope.  I am totally in awe of all your efforts put forth for your beautiful daughter.  I can't help but think I would do the same if it were my daughter/son instead of me.  It makes me wonder how many people at IHD wanting a transplant have looked online for a living donor.

[thegrammalady]

this is wonderful, however we had a case not to long ago in Denver where a doner was found online for a transplant (not kidney) and the hospital/surgeon refused to do it because of finding doner online. i guess it just depends on where you are

[okarol]

Yes, our first hospital said "We don't believe altruistic donors ever pan out. Jenna will get
a good enough cadaver kidney" - this was from the head transplant surgeon, with Jenna
having 6 more years to wait.
We switched hospitals.

[paris]

The two centers in my area won't do altruistic donation.  A couple of years ago, it was in our newspaper because someone had found a donor online and Duke Hospital refused to do it.  There is so much for the public to learn on this subject. But, I have had to learn so much myself since being diagnosed.  It does seem that Breast Cancer gets so much publicity  (and they should!) but I feel transplant and donation is not as publicized.  My sister-in-law has breast cancer and the whole family wears pink ribbons, runs marathons,etc.  No one has a donatelife bumper sticker, green ribbon.  They don't really understand why I haven't gotten a transplant yet!    Karol, your story is great and we are all glad of the outcome.  Each story gives the rest of us hope.    HOPE - what a beautiful word!

[mrhecht]

I think it would be a good thing if the media would ALSO focus on people who donate kidneys to their own family members - siblings, parents - because the need is great (many ESRD patients have siblings who are potential donors) but so is the fear of the would-be donors.  The more attention - and therefore education - the better.

Oh what a wonderful world it would be if every ESRD patient who has family could hear the words "I want to be tested." Karol, I am so happy for you and for Jenna. YOU are an awesome Mom and all of your children are blessed by you!

[okarol]

I still have resentments toward some family members. Not because they didn't offer to donate, but because they
never said ANYTHING at all. I understand that organ donation is not for everyone, but at least say "I wish I could
help but... blah blah blah." But to say nothing at all, when they know we are searching for a donor for 3 years,
it's just so depressing! I will get over the resentments, but it may take a while. In the meantime I am going to
focus on gratitude! Thank GOD for people like Patrice - what an incredible gift. She's a part of our family now -
and a part of her is in our family!

[mrhecht]

I still have resentments toward some family members. Not because they didn't offer to donate, but because they
never said ANYTHING at all. I understand that organ donation is not for everyone, but at least say "I wish I could
help but... blah blah blah." But to say nothing at all, when they know we are searching for a donor for 3 years,
it's just so depressing!

I know what you mean about family. I have been on dialysis since 1989. In 1992, I was on a transplant list in Denver (Took myself off after a couple of years, but different story) and I wrote a letter to my family (all in Texas) asking if any of them would consider donation. I have 4 siblings. Only one of my sisters responded with a phone call to tell me why she wished she could but didn't feel able to at this point in time and her reasons were absolutely valid. But to have no one else even respond hurt soooooo much. Now I am living in Texas and have been on the list now since November. Everyone knows I'm on the list and now my brother-in-law is on dialysis (husband of sister that called me) and everyone has heard him talk about the 4, count'em 4 friends who have said they are willing to be tested, yet all my family can ask is, well have you heard when you're going to get a kidney? have they said how long the waits going to be? like it's some kind of thing you just stand in line at Wal-mart for!

And then (God bless him) a friend of my Dad's that has known me since infancy, wanted to donate a kidney to me! Unfortunately, he's 80 years old and of course, that was not possible, but even then, when all my siblings knew about it, no one said, "I'll get tested." I so want to ask again, but I just don't think I can do it. I was so hurt last time and even now when I think about it, I tear up. I love my family and I don't want to bear resentment, but I think if I were to ask again and not get any response, it might affect our relationship.

No, I can't is so much better than nothing.

[kelliOR]

No, I can't is so much better than nothing.

You said it!!  I got NOTHING from my family also.

And after my transplant (from a friend's husband), my mother wanted a picture of him to paste on a family photo for xmas  as "our newest member".  That annoyed the crap out of me.  He is a far better person than ALL of my family.  He never even asked why my family never stepped up to the plate. 

I refer to my kidney as St. John.


didn't mean to rant and stray off topic,  that was my evil twin speaking

[Sluff]

One would think or expect family to be the first in line, it's just unbelievable when most run and hide.