Relying on the kindness of strangers

How many health conditions rely on the kindness of strangers for help?
This is our daughter Jenna. She needs a type O kidney donor.
Please share. Thank you!

Living donors make miracles happen!!

Thank you to the over 133,000 living donors (since record keeping began in 1988) who gave of themselves to save another.

facebook.com/wantedkidneydonor

Forget the chocolates - how about signing up as a kidney donor? www.facebook.com/WantedKidneyDonor

No act of kindness, no matter how small, is ever wasted.

~ Aesop

Advantages to being a living kidney donor:

No medals. No ticker tape parades. Just the everlasting thanks of another human being.

Living donors make miracles happen!

A quote from the 1965 NBC documentary entitled "Who Shall Live?" narrated by Edwin Newman. In those early days of dialysis technology, only a few patients could be treated, and even then at great cost. The demand greatly exceeded the capacity to treat patients, and some means of selection was needed. The highly controversial decision-making process had anonymous committee members deliberating over the merits of each case. The documentary examined the troubling questions underlying decisions by the committee. Should patients with children get priority? Those who went to church? Those who had the most productive jobs?

Thanksgiving reminds me of what a joyful November we had 5 years ago, when Patrice, a stranger turned friend, offered to donate to Jenna. The surgery date was set for the following January, 2007. My heart is full of gratitude, knowing that a person could be so generous, so selfless, and willing to give our daughter a kidney. There's never enough ways to show or say thanks for what Patrice did. But I wanted to mention her - we are forever in awe of her loving gift.

And even though Jenna lost much of the kidney function through rejection, she has been stable nearly 2 years afterwards, Patrice's Brave Little Kidney still keeps running, steady and strong. We have a lot to be grateful for.

Jenna's 26th birthday - with her brother James

First, the good news!
Jenna's creatinine is lower on her June 8 labs: 3.15 with a GFR of 20 - this is the lowest creatinine and highest GFR since her rejection episode 18 months ago. By comparison, last month her creatinine was 3.48, GFR 17.

All of that means she is stable and Patrice's kidney is still doing a good job. But it's the equivalent of about 18% kidney function, which can be knocked out by something as simple as the flu, so we are trying to be prepared.

The frustration with the transplant hospital continues. Jenna met with the psychiatrist each of the last two months, as required. It was a Mid April when Jenna asked why she needed to redo the voiding cystogram, a bladder test that she's already done in the past. After waiting 2 weeks for a reply she emailed the head of the transplant dept. He wrote back and said the urologist was the one asking for it (Jenna's never met him) and that they would get her prior scans and after "obtaining these we will keep you posted." That was April 27th.

Jenna's frustrated. I am pretty much done. This is the same lack of follow up and attention to detail that is a rerun of our experience with this local hospital in 2004. They have promised it would be better, but it's not. If the patient doesn't push for action, either nothing happens or they come up with a list of things that do not apply to THIS patient.

This last Wednesday I sent a note to her nephrologist at Hospital A:

"Dear Dr. XYZ,
Jenna's wait list evaluation status has been basically dead in the water since this last
correspondence from Dr. ABCD 6 weeks ago. It feels like she has been forgotten.
What do you think about her switching to Hospital B?"

His response: "I will get back to you soon."

This is what's been going on since October 21, 2010. Nearly 8 months of slow progress and incomplete status. Jenna has done all that's been asked of her. She is entitled to be be actively wait listed. Yes, her Brave Little Kidney may last a few years, but there are no guarantees. She could be getting desensitization, or working toward a preemptive transplant.

I remember what it was like, the first time she was wait listed. She was 18 years old and had started dialysis halfway through her senior year of high school. We went to the transplant hospital and did all the tests. She met the requirements for financial and insurance coverage. Her final tests were a chest xray and EKG. Then she waited. And waited. Like so many other patients, she felt that surely she would get some word soon, hopefully good news, but something either way. Waited. Like good folks, patiently waiting. Finally, months later, we get a call. Ooopsie, her file sat in someone's in box because they were "between coordinators."

Then, three years at that hospital before she was multi-listed down south and realized there was a much better choice out there. If it weren't geographically difficult, we'd had gone there again immediately.

It makes me so angry. Not just for Jenna (as I said, we've been down this road before.) But several times a week I hear from people who are waiting to hear something, anything. Some cannot even get an appointment for an evaluation! Others are waiting for word from their "team" and hoping to get the news that they are finished with all the tests and they are on the LIST. Some even have potential living donors, people willing to be tested! And yet, they wait to get the word, to have their evaluation finalized and to be approved to move to the next step. They are afraid to ask what's happening for fear of alienating the team they so desperately rely on to take them to the next chapter of their kidney life. Don't want to rock the boat. It makes me crazy, so mad and hurt - these are people - with a chronic disease - they have feelings, they need hope and encouragement - they need to feel supported! They are facing years on the wait list - help them to at least get started on the path.

No hospital is perfect. But some are certainly better than others. If a patient wants a transplant, why is it so difficult? And they have insurance and support at home. Why not shoot for a preemptive one if they are lucky enough to bring donors to the table? Why delay until they are so sick that they have to begin dialysis?? They should be able to obtain the care and service they desire, not go begging for it.

I would love to bring some patients to a hospital and give the transplant department some training. This is not a gas station you work in, or a Walmart. These are humans, facing their mortality -- give them some dignity. Return their calls. Check in on them. Act like you give a damn - or get out of the business of "caring" for patients.

Please vote for Jack Black for Person of the Year - Donate Life Hollywood - each year he donates his time to entertain kidney teens at the annual Renal Support Network's Teen Prom- whatta guy!! Please share this - thanks! http://svy.mk/lGhTnN

I started this blog in 2006 and shortly afterward a very generous woman offered to donate a kidney to Jenna. The surgery was in Jan. 2007 and both Jenna and her donor recovered well. Now, 4 years later, we are once again learning about options. It was just over a year ago that Jenna experienced a rejection episode that knocked out about 83% of her kidney function. She has been stable ever since, and we are hoping she can stay that way for some time, but the doctors warned her that an infection or flu could damage the remaining function, so she is working on getting wait listed again.

Patients can choose to pursue a living donor or deceased donor transplant. We hope Jenna can find a living donor, as the wait time here in Los Angeles for a deceased donor transplant is now 10 years.

Things have changed, even in the few years since Jenna's transplant. Back in 2004, when she began dialysis, she also began the process to get listed on the national UNOS wait list. Patients are now eligible to get evaluated BEFORE beginning dialysis, and perhaps avoid it altogether by getting a preemptive transplant.

Years ago nine people stepped up to be tested as donors for Jenna, but none were found suitable. Now, if a patient has a willing donor who is not a match, there's still hope. The National Kidney Registry allows transplant centers to register donors and recipients directly in a database and participate in multi-center paired exchanges or "swaps." Since 2008, the National Kidney Registry has become the most productive paired exchange system in the world, and to date has facilitated 240 transplants. UCLA and USC are both enrolled in the registry. There are a couple other smaller paired donation programs, and UNOS has also begun a pilot program that is in the infant stage.

Another new option for patients is a desensitization program available at a few transplant centers. In the past patients with high levels of "anti-donor" antibodies have had little chance of receiving a donated organ as they would reject most donors' tissue. Now they can go through treatments to change that antibody status. At the Cedars-Sinai Transplant Center, this innovative procedure -- intravenous immunoglobin (IVIG) therapy with Rituxan added -- is being used to give new hope to kidney failure patients.

Something that may reduce wait time for a patient who is waiting for a deceased donor organ is multiple listing. Multiple listing involves registering at two or more transplant centers (at different procurement areas.) Since patients at centers local to the donor hospital are usually considered ahead of those who are more distant, multiple listing may increase the chances of receiving a local organ offer.

The steps along the way can be a challenge. We've learned so much over the years, but it's constantly changing. The kidney disease world is evolving, and the improvements leave us feeling hopeful about the future.