The latest research has shown that many people with POTS have specific anti-bodies that most healthy people do not have. However there still needs to be larger studies done with a greater number of people to confirm this. And if it's true that there are "POTS antibodies", then they still have to figure out how to use this information to better treat POTS. Maybe in the future that could mean filtering the antibodies out of your blood stream? Or medication that specifically targets those antibodies?
Dr. Raj was awesome. He had no miracle cure of course, but he did have some suggestions of different medication combinations/dosages to try. He said that POTS is always the result of something else going on in your body, it doesn't just occur on its own. However most of the time we don't know what that something else is. The latest research has shown that many people with POTS have specific anti-bodies that most healthy people do not have. However there still needs to be larger studies done with a greater number of people to confirm this. And if it's true that there are "POTS antibodies", then they still have to figure out how to use this information to better treat POTS. Maybe in the future that could mean filtering the antibodies out of your blood stream? Or medication that specifically targets those antibodies? Dr. Raj is currently studying these POTS antibodies and he asked if I'd like to participate in his current study. It would involve going back to Calgary three more times, and I'd have to go off of one of my medications, so I haven't decided if it's something I want to do yet. And finally, here are me and Zivah (my friend's dog) doing what we do best. Zivah and I weren't always the most exciting passengers during the 11 hour drive to Calgary. I also have a really amazing friend who not only drove me but arranged for us to stay with her family in Calgary and came with me to both appointments.
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I've not been great with this blogging thing lately. But I figured I should probably write about my visit to Dr. Raj this week!
The first day in Calgary I had Autonomic Function Testing (AFT) done at the Cardiovascular Diagnostics of Calgary's South Health Campus. The AFTs involved six parts:
You have to fast 6 hours before the tests and stop medications before hand. After the 10 hour car ride the day before, plus fasting and being off medications, I was already feeling pretty bad before the tests started. I started passing out during the tests where you blow into a device and at the end of the Tilt Table Test. My blood pressure was around 60/40 at that point, which is a new record for me. The staff there are super nice though and they even gave me lunch once it was all over! Tomorrow I get to meet Dr Raj for the first time so I'm looking forward to hearing what he has to say.
CrochetI've been obsessed with crocheting lately! With Christmas coming up, I've been crocheting basically non-stop. Here are some of my favourite hats. AudiobooksAs I crochet, I listen to audiobooks from Audible and Youtube. I've always loved reading, but since getting sick I've found reading to be challenging. However audiobooks are a wonderful way for me to continue reading. Some of the recent books I've read include:
HealthI had an encouraging doctor's appointment the other day. I saw a neuro-opthomologist who seemed confident he can help with my dizziness problems. He thinks a virus may have gotten into my inner ear and temporarily messed things up, but that it can be reversed. He did lots of fun tests on me, including holding my head and shaking it, and putting me on a spinning stool and spinning me around while trying to get me to read an eye chart. I get to look forward to more fun tests in the next few months, including having warm and cold water poured in my ears to see how dizzy it makes me and an MRI. Furry FriendsDogs are so special. We've missed Archie so much, he was such a special guy. But we had a huge blessing of getting a new roommate, who owns a dog. Our new roommate is great, and so is his dog - Jessie. Jessie is a 7 year old border collie x dutch shepherd and has been wonderful at helping to distract me from missing Archie. While she can't replace him, she's very wonderful in her own special ways. Dogs have a miraculous gift of cheering people up and making you feel better. CrochetI've begun to sell some of my crochet hats and headbands! This weekend I participated in a 2 hour craft fair at my old church. I'm so exhausted still from it, but it was so much fun to see other people enjoying my hats. I'm still working on getting my crochet website up and running, but you can check out what I have so far at: sleepycatscrochet.weebly.com
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AuthorMy name is Lisa and this is my life with POTS (Postural Orthostatic Tachycardia Syndrome) Categories
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