It’s Never Good When You Cry at the Pharmacy

Our medical system and its people are overworked, underpaid, and not user-friendly.* Remember that whole “Heroes work here” anthem from COVID days. I bet they aren’t feeling that love lately. Everything seems to be a struggle…for them and for the system users.

If you know us, you know that we are big fans of the UCSF system. The facilities may be old, but the people are amazing – patient care is their thing. Last week we saw “the goddess” (per my most recent post) so you already know her.

On Saturday morning, two of Glen’s friends stopped by to make their final preparations for their trip for “footie” in England. These two true and loyal friends took one look at him and drove him with Blair straight to UCSF. I was in Chico when I got the call that they were taking him, so my 2 1/4 hour drive home turned into a 4 hour drive to Parnassus. I knew that he was going because of the swelling in his extremities and that it was not life-threatening (Dr. Yom had said likely rheumatological issue) so it was not an emergency…but it was urgent.

The four of them arrived at UCSF ER and after getting Glen checked in and settled in the waiting room with Blair – the two friends took off (one for Dublin, Ireland) and Blair and Glen started the ER dance…By the time I arrived, they’d been there for 3 plus hours without much hope for moving through the system quickly. (The waiting room was packed.) The hospital is in the mess of remodeling so when I got there, I had to wait in an outer area to be escorted to the waiting room where we were told that three doctors had “called out” for the day. In the circumstance of being extremely short-handed, the doctors were also the nurses and the custodians. I literally watched the doctor empty a trash can from the tiny exam room as he prepared for his next patient. At one point, the staff came in and because the waiting room was over-crowded, they asked all non-patients to leave the room and wait in the hallway. There were no chairs in the hall so you constantly had to dance around the guerneys and wheelchairs, etc. as they careened down the corridor.

Eventually (after hours of waiting), Glen saw the ER doctor in a VERY small exam room. He asked some questions and made a quick assessment. He suggested that Glen might be best sent to the “clinical observation” unit where he’d get more tests and a rheumatologist would be called. He told us he might have to stay over night because there wouldn’t be a rheumatologist available until the next day.

Well…surprise, surprise, surprise!!! Before Glen was sent upstairs, he was called back to the VERY small room because there was not one, but two rheumatologists there to see him. As they were asking both of us questions, it became clear that Glen was the highlight of their day…week…month…career?! They said that they think he has a rare (treatable) condition and he was a textbook case. One doctor was googling it on his phone while the other was asking questions. They were practically giddy with glee as they were discussing the symptoms with each other. As I say this, I don’t want it interpreted as bad or disrespectful care. They were an awesome pair and very forthcoming with information. The “googling doctor” had me take a photo of the google page he found with photos and information about the condition. We think that they had received the ER doctor’s report of Glen’s symptoms and they zipped down very quickly at the prospect of having a “remarkable” patient. (We learned when Glen was being treated for cancer that there was no better news than that you were “unremarkable”. It always gave us a chuckle of relief when he got that news.) After an inspection of his hands and feet, they agreed upon a course of action, including the prescription that if it worked quickly, as they expected it would, would confirm their diagnosis.

So after they left, Glen was released and the three of us were escorted upstairs to the “observation” unit. As we were heading up the elevator, the transport team said that this unit had been moved six+ times as the remodel was happening and it was hard to keep track of where it was in the maze of buildings, floors, and elevators. My sense is that those people have to keep a sense of humor to get through the day! Upon arrival to the unit with no walls, but with a gorgeous view of the ocean – too bad it was foggy – the staff in the observation unit was very quick to get Glen a bed and start the process of checking him in.

At this point, it was after 7:00 pm and Blair and I hadn’t eaten since 8:00 am. We were starting to get cranky – never a good thing. We talked to the charge nurse about finding food. She said everything would be closed down (lord knows everyone in a hospital eats meals at the “regular” hours – not), but she gave us directions to a place that would be open a few blocks away. Helpful, but…at that hour when we didn’t know what the next steps were…did we really want to leave and come back? We asked her the odds of him staying overnight and she basically said…”up to you”! Not exactly that, but the end result was she called someone and that person gave permission to keep him overnight. In the end, it made sense since he didn’t get to x-ray until after midnight and I’m not sure when the ct-scan occurred.

Long story long…on Sunday Glen went home feeling much better. The rheumatologist’s diagnosis appeared to be spot on! We had a plan!!!! Two new medications were prescribed that would take care of the most urgent issues. So the prescriptions were called in…all was well until as we were literally pulling away from the hospital, Glen got a call. One of the prescriptions would not be covered by insurance and it was going to be expensive. And, neither of them were in stock so they’d have to be ordered. Ugh. Oh well. We can deal with it.

And here I finally get to the point of the title of the post…so I went to the pharmacy today to let them know I could make multiple trips to pick up the meds – we wanted him to get started asap on whatever was available so they did not need to wait until they were both in. They told me that the delivery truck was going to be three hours late, so pick up would be at the end of their office hours today. Okay. Not great, but okay. Then I asked if both meds would be on the truck and the tech couldn’t answer my question. The pharmacist overheard the conversation and nonchalantly said that one of the prescriptions was on back order. I asked what that meant and she said…she didn’t know when it would get here…if ever. I asked when we were going to be told that information…no answer.

So I went to another pharmacy (our usual location) where I asked if they carry the prescription. They don’t. She told me she couldn’t even look it up to see if it was in stock for delivery to them or if it is on back order. That’s when I cried. Right there at the counter. I’m a regular at this pharmacy (#gettingold) so she knows me. I think I just about made her cry as she wanted to help, but had no recourse.

So here I am. At home. Waiting for the rheumatologist to call us back. I told Glen that I will drive back to UCSF to get the prescription if I have to…I just want him to have this “miracle” medication so it can continue to do its magic for him. He’s had enough pain and when we can see a solution, but can’t get our hands on it…so frustrating.

And just when I thought I was finishing this dissertation, Glen came out to tell me that he called his primary care doctor because he has to see her this week (per the rheumatologist). He laughed because it’s just another Monday in California – except apparently it’s Cesar Chávez Day so the medical offices are closed. Of course, they are!

And another addition to the story…as we were about to give up for the day, a nurse from UCSF ER called to check in on Glen. We told her the difficulty we were having with the prescription and she said she’d call us within a half hour. Long story longer…she called around and found the prescription at a pharmacy in Oakland…could I pick it up?! You betcha!!! After being disconnected two times, I finally confirmed that the Oakland pharmacy had the meds and would fill the order…TODAY!!!

I practically cried again at the Oakland pharmacy when she handed me the prescription. (It’s only a couple days worth, but it’s a start!)

“Heroes work here” and I cried at the pharmacy!

What a day!

*I just read an article…all of the UCs are going on strike tomorrow. Thank goodness we got this at least partially resolved today!