A quick one if I don’t get distracted. Ooops… there it goes. First I’ll admit that I’ve been frustrated by needing oxygen. It isn’t just the hoses, batteries, and loud machines… it is going upstairs to get from the tank to the bedroom concentrator and racing to turn it on, then feeling winded for 10 minutes and wondering what I did to myself. I misheard and thought I would need it for a few weeks. I did some research today and read ‘you will probably need oxygen for a few months, even if you didn’t before your surgery. I DID before mine, so I’m trying to change my expectations.
The pain keeps going down. No oxy for the past few days; just tylenol. I’m eating better than I have in months and instead of feeling full immediately, I eat and eat and I’m hungry an hour later.
The title…. today was my first day at the ‘coumadin clinic.’ What a party — latex-free baloons, saline squirt guns… I’m JOKING!! It is part, or at least adjacent to the cardiology clinic. This AM I got the nicest message from a nurse who was in my first stress test — the one where I learned I wasn’t just out of shape. She called me several times before surgery from home — I think she was home sick — to check on where things were and what I needed. I assumed local people could follow my care since they both use the ‘my chart’ app, she said they only got access recently, and her that day. She left a message to schedule with the cardiologist but also said many nice things… they have all been worried about me, praying for me…
When I was in UCSD I always knew who was ultimately in charge. My surgeon and pulmonologist made it clear… so much so that I could tell them that nobody had time to ‘walk me’ even though the docs insisted that I must. I worried that the surgeon would hear criticism but he said ‘thank you for telling me, and I will address this at our next meeting. We can’t be an excellent program unless everyone is doing excellence.’ Something like that. As the prosecutors say, if I wrote this before, trust the first version!!
Today as I checked in with a woman with glasses, maybe late 40’s (why would I add that??? the reason is because some people can avoid smiling and still appear nice, and some people can smile and smile and still not appear that nice. She was the second group). I asked her, if Becky is around, please tell her I’m up front here. She saved my life a few weeks ago and I would like to personally thank her. The woman didn’t acknowlege my comment and barely looked at me. Told me to take a seat. I watched from the corner of my eye, and for the next 20 minutes she sat there typing. Nothing else. Maybe she sent a message, I thought?
I met with the ‘coumadin nurses’ for a long time – maybe an hour? Learned more than I expected. My level is a bit high so I’m going back in a couple days. But after the visit, as I walked out, the nurse from the stress test was in the hall and noticed me. She looked truly happy for me, gave me a hug… She said ‘I didn’t know you were here, or that you were coming in today! As I walked past the receptionist I turned and said, loudly, ‘It was SO great to see you … I’m SO glad we ran into each other. This MADE MY DAY!!’ She said something nice back.
The reaction or lack of reaction by that receptionist was deflating. The type of thing that reminds you, ‘I am nothing special to these people. They do not care. I’ll be forgotten as soon as I’m gone.’
I didn’t feel that way out at UCSD. Yes, it was a hospital not a clinic, and admittedly I WAS psychotic for a day or two. But I think my perceptions are real. And even if they aren’t, how hard is it to relay a message?? Nobody was in line. I really wouldn’t care if I have to thank that nurse another time. But I’ll just say it…. those people RUIN healthcare. I’m glad I’ve had better. If y’all have a chance to fill out a survey someday, write what was missing. Don’t compare the healthcare to what you usually get; compare it to what you NEED, and what you wish you could get. We all deserve so much more,.