-
Bits and pieces
As is obvious from my last post, I’ve finally made some progress on writing about our holiday. I wrote most of that a few weeks ago but it was only tonight that I finally edited it in preparation for posting. I fear I will forget much of what I wanted to write as time goes on but there is nothing to be done about it.Â
********
I’ve been in a much better state of both physical and mental health over the past couple of weeks. While I don’t exactly feel energetic, I don’t feel like I need to sleep all the time. It seems the thyroxine must have been doing something after all. My tonsillitis episode did mostly resolve after about a week and a half.
This week I had my annual appointment at the immunology clinic in our local teaching hospital. Last year I had a disastrously incompetent doctor, and despite the other doctors being good to great, I was worried about a repeat. Fortunately, it was all fine, although it took longer than I expected. She was rather abrupt and gruff when we first got started but improved as we talked further. She later mentioned that she’d only been in immunology for a week so I assume she’s still settling in and that might have been the reason for the less than friendly start to our discussion. We covered my low thyroid issues caused by being off my medication and also discussed some abdominal pain episodes which had occurred while I was away and for a while after I returned. She examined my hands and found them quite cold, then asked if my feet were the same (which they were). Later she checked my blood pressure and found it was quite low (95/55) and was worried that I might be light-headed (which I wasn’t). She checked my abdomen thoroughly for anything unusual and presumably found nothing amiss. She asked about a couple of spots/rashes on my stomach but I wasn’t able to provide any useful information except that one has been there for a couple of years and the second, smaller one appeared recently. I’ve presumed they were due to some sort of skin condition but the only notable thing about them is the larger one sometimes seems to change color slightly. She had a thorough look at my mouth and throat and noted my tonsils are swollen.  After we covered pretty much everything, she went off in search of the consultant (head doctor) for the department to confer before we finished.
 The doctor was on a phone call for quite some time before she was able to reach him. Eventually he came to the consulting room and they discussed my case right there, which was kind of unusual. I’d seen this doctor at two previous appointments and he’d concluded that my autoimmune condition is Sjögren’s syndrome based on my symptoms and my ANA. I have antinuclear antibodies of at least two types. One type is called anti-coilin and seems to be fairly unusual but mostly is seen in people with primary biliary cirrhosis and Sjögren’s syndrome. The other type is common and also non-specific but also seen in Sjögren’s. This doctor had previously given me lectures on careful attention to dental care and keeping extremities warm (as I have early symptoms of Raynaud’s syndrome). He repeated the dental lecture again even though I’d confirmed I’d had it before. It may have been as much for the registrar’s benefit as mine. Discussion was had over which blood tests I needed to have done and it was decided I’d be reviewed again in a year. Appointment concluded.
In addition to the usual auto antibody tests, I also had tests specific for autoimmune liver disorders along with immunoglobins added in. I found the pathology department at the hosptital was too busy for me to wait so had them done today at a local pathology center. I think I’ve reached a record with seven tubes of blood this time. Apparently I will be contacted by the clinic if any results need any follow up.
********
The semester started last week at my university so I’ve started my last class for my degree. It’s an external unit and it seems to be a small class as there has been almost no discussion online so far. Also, the unit outline hasn’t been updated for this semester. I pointed this out to the teacher but have had no response after several days. It would be good to have some interaction with others in this class. It’s already isolating to study by distance education but it’s worse when you feel like you’re the only one out there.
********
My favorite band, Crowded House, are coming to Perth in Novemeber and I have purchased tickets for the event. We are fortunate to have them playing at a nearby winery so it will just be a fifteen minute drive instead of 30-60 minutes to reach Perth or Fremantle. The Scientist and I will, however, be trekking down to Freo for a concert with Megan Washington and support act Dan Kelly at the end of the month. Tickets were quite inexpensive as these are up and coming artists…so it should be good value for money. We’ve seen both as support acts for other performers and both were excellent.
-
What a doctor shouldn't do during an appointment
Last week I attended the immunology clinic at a teaching hospital in Perth. I’ve had mixed experiences there but was fortunate enough to see the consultant the last two times and was quite pleased. This time I had a registrar (student doctor) and things were quite different. Below is a list of things a doctor shouldn’t do during my specialist appointment.
- Don’t ask the patient why you’ve been coming to the clinic for the last two years when you start the appointment. It’s always useful to read the notes and find out at least a little of the patient’s history before starting any line of enquiry. This should be obvious for appointments marked as follow ups.
- Don’t ask the patient questions that have no relevance to the clinic. This includes questions about menstrual periods and the reasons why the patient takes thyroxine. Also, it should be quite obvious to even the most basic doctor why a patient is taking thyroxine.
- When the doctor finally gets around to a line of questioning more appropriate in the clinic, don’t just sit there without taking notes of what is being said. This could account for why certain details might have been missed.
- When issues are raised about cold hands and feet, swelling and discoloration, don’t neglect to do a decent examination of the hands and feet.
- If a registrar is waiting to discuss the case with the consultant doctor, please don’t sit in front of the patient and read case notes for other patients, especially for an extended period of time. This is especially true if the doctor has failed to take any notes of what is being said because it would be an ideal time to continue the conversation begun earlier and possibly to get around to taking notes.
- After conferring with consultant doctor, don’t neglect to respond to the issues raised by the patient in some way.
I realise the student doctors are learning but most of this was pretty basic and I honestly don’t think this doctor was ready to be handling appointments on his own. I get one appointment yearly and it was extremely unproductive. I don’t really think there would have been much difference in the outcome but at least it would have been good if I felt like the information I provided was actually recorded for future use. I didn’t bother mentioning some other issues related to the hands and feet because I lost any confidence that any appropriate response or notes would be made. The doctor did order some blood tests, which I had done in the pathology department before leaving. There’s a bit more on the blood tests later.
Today I went to see my gp to discuss a variety of issues. We ended up having a pretty decent discussion where the situation with the boys was covered and a referral to the psychologist I see for the boys was extended. Then we discussed my recent appointment. Some of my blood tests had come back and a few hadn’t. There weren’t too many surprises there. Almost all were normal aside from my always high ANA. I spent a long time recounting my experience and explaining about the issues that I had wanted to discuss with the specialist doctor. We also discussed the pelvic pain I have been getting around the time of ovulation before renewing prescriptions for thyroxine and the Nexium. It was a good appointment.
My gp almost always prints out my test results so I can keep a copy for my records. The printouts include reasonably detailed information. My gp was curious as to whether the doctor had ordered an ENA test, which is an extension of the ANA. I didn’t recall it being listed on my form. Considering I have some sort of autoimmune thing going on, this should be automatic as it will be more likely to reveal something new than just the ANA. I noticed the gp spent a bit of time reading the notes listed for the ANA. I assumed they were the same as the past two tests at the time. But tonight I read it more carefully and it noted there was reason to order further tests. Considering the level of competence I had with this registrar, I feel it’s extremely unlikely he will order the additional tests. The antibodies suggested almost all are indicators of potentially significant disorders. Two of these are autoimmune liver disorders and my very uncommon ANA pattern is often seen in one of them. I’m going to have a pelvic ultrasound shortly so I’ll discuss this with my gp further when I see her again.
-
Protected: Appointments
-
Recovering
The past couple of weeks have been really exhausting, both mentally and emotionally. We started our official homeschooling year and that’s going pretty well so far and keeping me quite busy. But it has been the appointments taking up most of my time. Last week I had two and by the end of the second one I was feeling drained. I will update on some of the goings on very shortly but have only just reached the point of unwinding enough to collect my thoughts. Fortunately we only have one other appointment this month and that one is just a follow up to a previous one and shouldn’t take nearly as long as the first.
Added to the appointments has been the anguish over the Victorian bushfires. It is hard not to watch much of the media coverage but I’ve had to for my own mental well-being. I probably will have more to write about this at some point but I think I am still processing what has happened.
Daily life continues.
-
Another appointment
Seems we’ve been on the run most of the week and possibly will be out on another long journey tomorrow. Part of me hopes we can stay home until Saturday since we’re leaving on our short holiday early Monday morning.
Today’s outing involved Lego Lover’s latest appointment with his pediatrician to review medication issues. The previous medication didn’t have any visible effect so we stopped that one and started on the one he is currently taking. At the time, we had to stop another medication that he takes to help him sleep because the current one is supposed to make him very sleepy. That hasn’t been the case at all and he is often awake well into the morning hours. The good news is that he hasn’t had the typical appetite increase and weight gain that is common with this medication.