Last Thursday, my Satellite Healthcare office held a "Lobby Day" for PD patients like me to speak to folks on in-center hemodialysis. Some hemo patients might benefit from switching to at-home peritoneal dialysis, but we weren't trying to make a hard sell for PD. The goal was to give people an opportunity to learn more about it from a variety of sources.
In the lobby for Lobby Day:
- PD Nurses and patients
- Social Workers
- Medical stand with a manual PD bag
- Dummy torso with a PD catheter
- A heart model with a hemodialysis catheter
- Home hemodialysis machine
- Peritoneal dialysis machine
- Floating mylar balloon that said "Welcome!"
I spent a few hours there, and it felt nice to be able to share some of my experiences on PD with the hemo patients. I was impressed to hear fluent Spanish from one of the social workers as she acted as a translator for one of the patients.
I was also glad to meet D., a patient who received a living donor kidney from a close friend of his. We had actually talked before, over the phone, when he'd been interested in knowing more about PD. He'd been on hemo and I'd given him hints on what to expect with PD. Now, it was me getting a first-hand account of his post-transplant experience.
Some interesting things about D.'s life after his transplant nine months ago:
- Right after the transplant, he was expected to drink 4L of water daily to keep the kidneys working. Now, it's down to 2L daily. He carries a big metal canteen everywhere. He feels bloated often and has to use the bathroom frequently, as you'd expect. Which is great, because that means his kidneys function!
- Full recovery for him and his donor took about two months.
- He feels like he has much more energy than before.
- For three months post-transplant, he was tasked with wearing a medical face mask as often as possible, so as to prevent catching anything that might hurt his already-weakened immune system. He had to stay away from pets, babies, and obviously, anyone that might be sick.
- Right after the transplant, he took 20 anti-rejection pills a day and 20 of them a night. Now it's down to 10 in the daytime, 10 at night.
- The meds caused him to feel a lot warmer and made him sweat profusely, even at night.
D. and I also talked about recent stories in the media about kidney disease, like the KQED Forum episode with nephrologist/kidney donor/writer Vanessa Grubbs and John Oliver's takedown of for-profit dialysis clinics like DaVita. We both expressed relief that Satellite was set up as a non-profit organization!
Since it was a slower day at the clinic, there weren't too many hemo patients to talk to. This worked out ok for me, as I got to ask for more insight into post-transplant living, courtesy of D. Thanks, D.! And thank you, Satellite Healthcare, for putting on Lobby Day and for all that you do for your patients.
Today I Learned:
Satellite's name comes from it originally being a satellite unit of Stanford Hospital's. Dr. Norm Coplon, a director of renal care at Stanford, founded Satellite Dialysis to be an outpatient renal care unit. The first center opened in San Jose in 1974, with the goal of creating as home-like an environment as possible, complete with LA-Z-Boy recliners and Sears TVs for patients to watch while they were treated. They concealed medical supplies in drawers and cabinets instead of metal shelves. And they even had a smoking area! What a weirdly unhealthy time it was. Did you know/do you remember how even airplanes used to have smoking sections?