Wednesday, November 23, 2011

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

Friday, September 02, 2011

Our daughter got good news yesterday - she is now on the US national organ transplant list. She got a kidney transplant nearly 5 years ago and after a rejection episode 20 months ago, she's been stable at about 18% function. Her Brave Little Kidney keeps on truckin! This last month her function was the best it's been - we just marvel at that tough little bean!
The wait time in Los Angeles is now 10 years for a deceased donor kidney, so she hopes a living donor will be a possibility for her. Getting listed is the first step! It means she can look forward to the future.

the list

Saturday, July 23, 2011

Jenna had an appointment the end of June and she told the neph she'd had pain in her transplanted kidney. The doc ordered an ultrasound to be sure there was no fluid accumulation, or blockage or other problem. All looked ok. Jenna was started on antibiotics and also had labs done to see what was up. The labs took a few days and by then she was feeling better. When we left that appt. I told the neph how long and dragged out the transplant process was at the hospital, and we were very unhappy. He said he would try to find out what the delay was.
So here we are - a month later, and Jenna's having more pain. (more here ) I pray this is not the death of her transplant. )-:
She has been seeing the psychiatrist as part of the transplant team. Yesterday her brother took her to the appt. and they checked in a few minutes early, hoping to be finished on time as her brother had something to do later. After 40 minutes he texted me and said she was still waiting, so I told him to have her check in again at the desk. There was no one in the waiting room the whole time. The person at the desk seemed surprised, then realized no one had told the psych she was there. So they took her in 15 minutes later, took her vitals, and had her wait 15 more mins. while the psych was on the phone. So by the time Jenna was in there, she was upset. She told her it wasn't the first time that she had been forgotten. And she said she didn't want to be difficult, but she had been waiting 9 months to get wait listed and there was no end in sight. The psych was sympathetic and offered to have the transplant coordinator come in right then to discuss it. That really upset Jenna as she was not prepared to go over what had or had not been done. She didn't feel comfortable and started to cry. They made an appt for Jenna and me to meet with the transplant coordinator and the psych on Aug. 3. Jenna told me she just wanted to get out of there, after 2 hours. She was a little ashamed that she didn't take the opportunity to speak with the coordinator, but I was proud of her for speaking her mind and being authentic about what she was comfortable with.
She's been hurting for days. Yesterday I spoke to her neph who just came back from Indonesia, discussed her pain and just before we hung up I told him, "Jenna's done with your hospital." I described the psych appt. and he was very angry and upset. I think he wants to find out what's going on, but I don't think even he realizes he has no power to fix up the pathetic transplant team.
Now today we get a form letter (dated 7/19 but postmarked yesterday) which says:
"The following tests need to be completed to proceed you on the UNOS Kidney Transplant List. Per our surgeon Dr. ________ recommended a VCUG and Pelvis Ultrasound for a repeat since the last one was done in 2007. We are also awaiting pap smear test results."
An appointment was listed on the following page for her to be at radiology at 8AM on July 29.
Fat chance.

Saturday, June 18, 2011

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.

Friday, May 27, 2011

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!

Sunday, April 17, 2011

Questions to ask when choosing an in-center dialysis provider

Not all dialysis centers are the same and their rules and procedures can vary. The willingness of the dialysis center staff to address these questions will give you a good idea of the level of customer service you can expect to get.

Can I visit the center before beginning dialysis?
What is the process for the first treatments?
How many stations (chairs) are there and how many shifts?
What shift can I expect to get? What if I have school or a job?
Can patients eat or drink while being treated?
Are TV's shared or individual?
Is there free wifi?
Are visitors allowed during treatment?
How do you handle holiday scheduling?
What if I need to modify my schedule? How do I arrange this and who do I contact?
Who is the operating manager? What is their backround? Are they a caregiver, RN, RD, MSW, etc. or a corporation?
What precautions are taken to make sure I don't get someone elses disease or an infection?
How many RN's are there per shift?
How many techs? What is their training/certification?
Who will be cannulating (nurse or techs?)
Do you have trainees cannulating patients? Are patients informed of this and given a choice?
Do you encourage and teach self-cannulation?
Are patients taught how the dialysis machines work?
Can I get a copy of my monthly lab slips?
How often can I expect to see the nephrologist?
Is there a support group? For patient and family?
Do you offer help with pain? Lidocaine injections? EMLA cream? Benadryl?
Do you offer home hemo training?
Is nocturnal dialysis available!? Can I come in to observe?
Is a social worker able to assist with Medicare and kidney transplant questions?
Is renal diet and nutrition counseling given?
What lab levels are used before giving epogen/iron?
Do you help arrange transportation to the dialysis center?
Can you assist me with scheduling if I want to travel while on dialysis?
What is the complaint or grievance procedure?

Sunday, February 27, 2011

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.