Monday, 15 July 2013

autoimmunity - part 3

advanced thrombotic microangiopathy: for something that almost killed me its rather beautiful!
I never intended for this to be a blog about medical conditions and I'm sorry for all of you faithful readers who come to see my crafting posts who have to put up with an occasional downer as well.

I didn't even expect to have to write a post on autoimmunity again for a little while. I know you're all dying to hear more about homeopathy and gluten free from my last post of the series but something unexpected came up this Wednesday which I think can help teach a super important, and in my case, life saving lesson to even the healthiest of my readers.

Here's the story:  I have always suffered from PCOS (polycistic ovaries syndrome) and have managed my symptoms successfully with the regular old birth control pill. There's much discussion as to the cause of PCOS and whether or not it's related to autoimmunity, but no one knows for sure. Regardless, since I've been taking the pill for about 20 years now (with a few brakes including a large one to allow for my little princess) for me it seemed something so natural, essential (for the PCOS symptoms) and irrelevant almost to the point of not mentioning it to doctors when I give my medical history.

When I was pregnant, I had a few extra tests done because of my autoimmunity to make sure that the pregnancy wouldn't be at risk for some as-ofyet unknown factors. I had some specific tests done which my immunologist assured me 'In your case shouldn't come back positive', but a few did... specifically the anticardiolipid antibodies and the lupus anticoagulant, which put together,  in most cases mean Antiphospholipid Syndrome.  Enough large words and links to Wikipedia.... In normal lingo that means my blood is thick and sticky and is very dangerous in pregnancy for miscarriage, stillbirths or lots of other nasty things that you don't want to hear when you're pregnant. I ran straight back to the doc with the results and was put on baby aspirin for the rest of the pregnancy with my levels being monitored closely and regular ultrasounds to make sure the baby was ok.  4 weeks before my due date I had to stop taking the aspirin (which increases the risk of hemorrhage during delivery) and in fact, Sera was born almost 2 weeks early and quite underweight for her gestational age.

I took my new baby home and after 40 days of injecting blood thinners to make sure that I didn't have strange clotting in my uterus never thought about Antiphospholipid Syndrome, or APS, again.

Until Wednesday; when, by chance I mentioned to my immunologist that I had had a abdominal ultrasound (for more fun autoimmune problems) and that all the technician had found was my PCOS which 'I already knew I had anyways and am controlling with the birth control pill' - I said.

I have never seen a doctor turn white. Especially not my doc, who I've known for five years now and who I pass most appointments joking around with.  He started leafing through my entire folder and repeating 'but I didn't know you were taking the pill... did I know? No, I didn't know... did I?'

Well, no he didn't... at least he didn't know I had restarted taking the pill about 4 months after Sera was born when the PCOS started to creep up again.  My gynaecologist prescribed it and since I didn't know much about Antiphospholipid Syndrome (nor do most people or doctors) didn't mention that to the gyno either... I didn't think it was something I had to mention.  I had always taking the pill before with no problems.

But it turns out there is a problem, a very serious one actually.  APS and oral contraceptives don't play nice together at all apparently... they both thicken the blood and mixed can cause significant problems such as deep vein thrombosis, stroke, heart attack, and pumonary embolism (what fun to hear... imagine me now in the doc's office and the colour of my face!)  The immunologist ran upstairs to the Thrombosis clinique with my data and came back with a game-plan:  stop taking the pill immediately, get these and tese and these blood tests (13 samples!) and when you have the results we'll figure out what to do about the PCOS and if you need more treatment for the APS.

Dear readers,  I have always had APS (or at least as long as y other autoimmune problems) so we're talking about roughly 13-20 years of walking around with a super-high risk of the above-mentioned killers and not knowing about it.  I'm having a hard time getting my mind around it, but am grateful and thankful to now know. I had been considering postponing the appointment on Wednesday but am so happy I went. The simple conversation with my doc may have saved my life and I'm lucky to have had it.

Even after stopping the pill I will have to learn more about APS and how to scan myself for warning signs of the potential problems related to it.  I noticed a bruise on my leg this morning which I would have normally not thought twice about, but will be keeping a close eye on it (although I think that it would be too coincidentaly to have a DVT 2 days after learning that you have a syndrome that created DVTs... there would have to be some strange powers at work).

The biggest lesson I learnt from the experience is that you should tell your doctor EVERYTHING... even the things you think are not important, even the things that you think that you already told them. 

not me talking with not my doctor

Had I told my immunologist back in 2011 that I was thinking of taking the pill again or had started to take it then he would have told me not to and that I couldn't and had I told my gynaecologist that I had APS (having understood its' significance) there's no way he would have prescribed me the pill... we would have had to find a new way to control the PCOS.  For as much as I am an expert on my health and have learnt to be in these past 13 years, I'm not a full expert and will need to learn to collaborate more with my docs and to live with a new full-disclosure at the risk of being banal policy.  For in as many times as I've filled out a form and they've asked what medications I take and I've written 'the contraceptive pill' and they're told me it's irrelevant, in my case it was VERY relevant this info and I had erroneously let myself be convinced otherwise.

The second biggest lesson I learnt is that when you are diagnosed with something, or prescribed something you need to go and find out everything you can about that illness or medication, then you have to make sure you ask questions... over and over.  Sometimes doctors don't know what they're doing.

I'm going to have to find out if there are alternatives which don't cause thrombosis that can help with my PCOS.  I'm not looking forward to the symptoms coming back and the pain that goes with them.  The thrombosis clinic mentioned one drug that may work and has fewer risks but I haven't looked into it yet as I have to wait for my blood results on the 19th.  I'm a bit worried about what the future holds for me with regards to that but as I mentioned before there were other times I lived with the symptoms and I'm sure I can do it again.

As all of my medical posts, this was a long and heavy one, but I'm sure that you understand it's been a strange and heavy few days for me.  If anyone out there is going through something similar I'd love to exchange ideas or tell you a bit more about my experiences.

Thanks for reading!

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