Saw the cardiologist and found it was great to learn that she’s current with my history. As said before over and over the communication aspects of receiving medical care are essentially absent here. No one seems to know anything. There’s no sense of there actually being a person with my name or history on the books except for those brief moments when I’m actually face to face with a doctor. In the case of my cardiologist, that’s two ten minute meetings in about a year and a half.
Felt very strange to talk to someone who knows my medical challenges.It isn’t that there haven’t been problems with the department she works in but it’s amazing how someone “knowing” you matters. The cancer people have made it clear they aren’t interested in anything about me. I do two more blood tests for them and I’m gone.
Only glitch with the cardiology people is an appointment I was supposed to have right after chemo was done. I had been booked for heart surgery before chemo. Then it was decided to do it after I was done with chemo in the spring and apparently the surgeon, like everyone else, lost my file so I need to wait for more months until I find out about surgery. The deal is, if there is no word by April we call the cardiologist and she reminds the surgeon.
As for my family doctor. She’s still on holiday and I’ll run out of the medications she needs to prescribe in a week. Four days without meds and my heart goes erratic and I start passing out. So I arranged with the cardiologist to get refills and I can skip the family doctor for three months. Anyway, she’s already over-booked for whenever she does get back so I couldn’t see her until mid-February.
There are no priorities for patients with chronic illness at the local clinic. The patient is considered, at best, a source of billable hours and otherwise treated like a stranger.
In fact, the whole medical system for rural people is an uncoordinated mess. There is a group now collecting stories like mine to see what can be done. Have sent in some material to them.
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I am glad your appt. went better than you had expected — what a huge difference that was. I hope the improvement continues.
I actually experienced something similar to your situation last week when I saw an orthopedist for my hip. I’ve been experiencing some hip pain for two months now, and I’ve been paranoid, so I decided to see a specialist since my onco didn’t want to do tests (which is a good thing, in a way?). The orthopedist had me fill out tons of paperwork about my health history. When I saw him, he hadn’t read any of it. So I had to tell him my entire story all over again — about my bc diagnosis and the Tamoxifen drug I am taking which might be contributing to my pain. Instead, he put me on this drug for a month, which I am not taking and advised for some therapy, which I started doing already. Got some xrays done too. My cancer hospital is very good keeping track of me, no complaints there, really. But I do experience some annoyance with other doctors who view me as some kind of experiment, as if I am not already serving the lab community with my cancer diagnosis. Sorry to vent. I thought of you when I went though this experience. And you actually go through this a lot more often than me. Your frustrations are reasonable.
Just glad your appt. went well and you were able to get your refills with this doctor.
Sorry to hear about the experience you had with the orthopedist. Not reading the material you wrote down was disrespectful and I run into it with male specialists as we circle each other and play dominance games. Can’t say I’m innocent in this dynamic:-) Do you think it also might be gender thing added into this? My daughters are not deferential to male power but beyond all that you went for professional advice and some specialists don’t like their “expert” status questioned in any way. They LOVE being bossy. Plus for me the last “condition” on my file (if anyone reads it) is “Anxiety” and any whiff of mental illness triggers a response from the type A personalities that most specialists have. That was the source of my problems with the cancer people, I was judged “hysterical” and dismissed as a weak fool. Same with the local doctors and my heart.
There was a radio article about some parents of a child with complex care needs who wrote a fact-sheet on what he needed. Every crisis the boy had meant a trip to emergency which was almost always staffed by strangers. They would MAKE the staff read the sheet BEFORE anyone started treating the child. Will find the reference and send it to you.
My wife Leslie has bad knees from years working around swimming pools in flip flops and sees an orthopedist who works at a Birkinstock shoe store. He prefers the direct contact with people without having to be stuffy or call for exotic tests. I worked for years on steep roofs and like the story of cows who walk in one direction up and down a hill, my whole skeleton is unsymmetrical. Bad shoes make my ankles hurt.
Thanks for the reply and don’t worry about “venting”. There seems to be a whole science built around dismissing people’s personal concerns as if they came from inauthentic imaginations. That attitude, which is often shortened to “get over it!” cheats our emotional intelligence to feel things. Drives me crazy when I get the “complaints department” when I dialed “concerns”. Anyway, you are a whole person with very sharp observational skills and I steal ideas from you all the time:-)
Did you mention you are getting married?
Scott, that’s a good question. I am not too sure if it is a male thing, but perhaps a specialty thing? My PCP is a male and he is thorough, but he needs to be in order to know who to send me to for further testing, etc. Now the doctor I just saw for my hip was a surgeon. So I wonder if male specialists have a more difficult time reading through charts due to the fact that they only focus on one particular area. I am not too sure though. My Onco is a female and she reads. So does my radiation doctor who I continue seeing. But I go to a cancer research hospital.
Thank you for the kind words. I’ve learned a lot from you and always appreciate your support.
Yes, my guy and I are planning to get married but I want to go to the desert to do that (in California). We might end up just going to City Hall and signing the papers. We haven’t figure out when yet — he is leaving it up to me to set the date as I am the one with complications (a female thing?).
And please do send me that reference.
Scott, that’s a good question. I am not too sure if it is a male thing, but perhaps a specialty thing? My PCP is a male and he is thorough, but he needs to be in order to know who to send me to for further testing, etc. Now the doctor I just saw for my hip was a surgeon. So I wonder if male specialists have a more difficult time reading through charts due to the fact that they only focus on one particular area. I am not too sure though. My Onco is a female and she reads. So does my radiation doctor who I continue seeing. But I go to a cancer research hospital.
Thank you for the kind words. I’ve learned a lot from you and always appreciate your support.
Yes, my guy and I are planning to get married but I want to go to the desert to do that (in California). We might end up just going to City Hall and signing the papers. We haven’t figure out when yet — he is leaving it up to me to set the date as I am the one with complications (a female thing?).
And please do send me that reference.
The decision for Leslie and me to get married was helped along by our application to move to Canada. We both had good jobs and sponsors and getting married helped finalize our approval. Long time ago and a wise decision. Take your time and make it some sort of event if you can. We were married by the guy that married my parents in a park in the hills behind Oakland where it was actually illegal to have any kind of ceremony so we pretended it was a Unitarian picnic. Being outside for the ceremony was important for us but why the desert in California? Oh, and as for complications, your guy knows all interesting women come with complications:-)
Seeing a surgeon explains a lot. My first heart operation the surgeon sent his assistant over at 10 PM the night before my 5 AM surgery to remind me that “people in your condition usually don’t make it.” The nurse threw him off the ward but was too late–it was a long night. Then the surgeon called me in a while later for a “consultation” (three hour drive to the hospital each way for me). And then he was too busy so he sent in one of his pals who didn’t know anything about me but thought just being in the presence of his greatness as a surgeon would make me feel better. Now, even though he’s saved my life twice he can’t be bothered to talk to me about a third operation he thought I needed after chemo. The cardiologist asked him months ago to call me in and is really mad at him. The only problem I have with female surgeons and other specialists is the time they book off for family things can delay appointments.
Here’s the reference http://www.cbc.ca/radio/whitecoat/a-shot-at-normal-1.3296396 and another that describes we deal with in the Alberta health care system http://www.cbc.ca/radio/whitecoat/pastepisodes/falling-through-the-cracks-1.3328312
“…illegal to have any kind of ceremony” so I see you’ve always been a trouble maker, haha! Still, I am glad that you guys created a nice little memory for your wedding. Why the desert? I love the desert. I want Joshua Tree, specifically because it was our first trip together. Also, it is a good excuse to keep it intimate — most people don’t want desert. I also don’t want anything fancy. It is cholla cactus joshua tree — here’s a pic: https://c2.staticflickr.com/8/7283/8743665934_3753cfdd38_b.jpg.
I am so glad your cardiologist saved you.
Thank you for those references. I will take a look.
Think I’ll go looking for the wedding pictures. We did hire a photographer and a singer who were friends of Leslie’s from work. The singing in the background was very romantic and kept my rowdy friends mostly quiet. It being Oakland early 70’s the Hell’s Angles and the Black Panthers were also doing something not allowed by the park at on ether side of us so I bet half the people at our wedding were undercover “birdwatchers.”
Remember going to Death Valley with a friend and how beautiful the nights were with all the stars out. One thing about the desert is you likely won’t get rained out. Funny, lots of people don’t like the desert but it’s really a magical place. I worked a summer west of Bakersfield which is semi-desert and didn’t mind the dust and heat, was like being in a Western. You guys could ride off into the sunset–that would be romantic:-)