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.