#ari update

she joined Matt on a ski trip to celebrate his birthday:

🔗

and hidden, the SW-run platform Ari works for, is hosting an awards show— she shared some of the categories (to the best of her ability)

It was a Sunday evening, and I was sitting at my laptop, and I suddenly noticed my heart thundering away in my chest. Hard enough I could feel it, and my first thought was huh, panic attack out of nowhere. That's unusual.

I do have anxiety, but it's usually triggered by crowds of people, or busy/loud places. Not when I'm sitting quietly on the sofa.

Now, back in 2018 I'd had an instance of blood clots on the lungs (Pulmonary Embolisms) so I bought myself a pulse oxometre that checks my pulse rate and oxygen levels. So I popped upstairs to check my pulse, worryingly high, so I took my anxiety meds and in about 30 minutes, my heartrate settles.

What was catching my attention though was my oxygen levels.

For context, most medical professionals will tell you that 95-100% oxygen saturation is normal. 90-94% is concerning, and you should see a doctor. Less than 90% is an emergency, and you should call an ambulance.

I was hovering at about 95%. I had the occasional dip to 94%, the occasional uptick to 96%, but slightly fluctations are also normal. Additionally I'd just had what, at the time, I thought was a panic attack. And panicked breathing reduces your oxgyen intake.

But I was also aware that my stats usually sat at around 98-99%. So this was... off. But still within normal range. And it was a Sunday night. I really didn't want to go to A&E on a Sunday night.

So I decided to wait until morning, see how things progressed.

By Monday morning, I had an ache in my upper leg. Which can be a sign of Deep Vein Thrombosis, which is another clot related condition.

Now, in my defence for putting off the trip to the hospital, I feel like I need to explain "unprovoked" in a medical sense. When I'd had unprovoked pulmonary embolisms in 2018, they'd scanned me, tested me, and determined that there was no apparent direct cause ie, unprovoked. Which means I had been discharged from the hospital with the instructions (and I quote) "Sometimes these things just happen. If you ever get similar symptoms of this, or a DVT, again, just come back to A&E".

Which wasn't much help, honestly.

But now I'd had a panic attack out of nowhere, my oxygen levels while in the normal range were lower than was normal for ME, and now I had a dull ache in my leg. So I'm beginning to get concerned. But I don't have any of the other symptoms I had in 2018 like the breathlessness, dizzyness, inability to catch my breath.

I decide that at 8am I'm going to call my doctor.

Except 8am rolls around and I can't. I have anxiety and depression. I'm holding the phone in my hand, the doctor's number punched in. Do you think I could make myself hit the call button? Like hell.

So now, I don't know what to do. Now it's half past 9 and I still haven't phoned the doctor and I'm still worried but not worried enough that it feels like it's worth an A&E trip.

So I decide to split the difference. We work with what we CAN do, am I right? So I submitted a form on my doctors website. You tell them what the problem is, and they can decide if the issue requires an appointment or a phone call consultation, the catch is it usually doesn't get seen for 48 hours.

But, as I said, we work around the mental health.

Tuesday, mid afternoon, I get a phone call from the doctor. She asks me a load of questions, and immediately refers me to the hospital. She tells me she's going to call the DVT (deep vein thrombosis) clinic and they'll call me with an appointment.

An hour later the hospital calls me. Can I get up there that night?

The answer to that is no. I don't drive, I don't know anyone that does, and it was too late for public transport, and not urgent enough to send an ambulence, so we agreed I'd go up first thing Wednesday morning.

Wednesday I'm at the SDEC clinic (Same Day Emergency Care Clinic) at the hospital, getting an ultrasound of my leg. Good news is that there's no clot! So it's not DVT, and I'm starting to relax. They'd still like a DVT nurse to speak to me so I hang around for a bit. And a bit more. It's the hospital, they're swamped.

Eventually, after I've been there about six hours, I manage to speak to the DVT nurse. This is the first person at the hospital to ask me what happened, start to finish. So I tell her, I explain my concerns and how the oxygen levels had me a bit - eh - since they were borderline. (At this point by the way, I'm 3 days on from the first heart-thundering incident, and my oxygen levels haven't gotten worse, but they also haven't gone back to my normal. I'm still hovering at 95%)

This nurse, bless her heart, immediately said that I shouldn't have been referred to the DVT clinic, since this was unlikely to be that, but she would pass me over to one of the doctors in the main SDEC department and they'd run the gamut of tests, just to be sure, since I'd previously had bilateral unprovoked pulmonary embolisms.

Over the course of the next thirty minutes I had bloods taken, I had a chest x-ray, I had an ECG of my heart, blood pressure, pulse, oxygen.

An hour after that, I spoke to a doctor. She said that my D-Dimer count (The protein in the blood that indicates clotting) was only slightly raised. A normal count is 500, and mine was something like 520. (I remember in 2018 it was over 600). But considering my history, my slightly raised D-dimer, and my oxygen levels being abnormal for me, even though they were just within normal range, she put me on a blood thinner overnight, and asked me to come back the following day so they could do a CT-Scan with contrast of my lungs.

This is to check the oxygen flow into and out of my lungs, and see if there's any blockages, aka clots.

So I go back Thursday, first thing. I have the CT scan. I'm nearly ill all over their floor in reaction to the dye. I survive. I go back down to the SDEC clinic to await the results.

And yes. I once again have bilateral unprovoked pulmonary embolisms. And since this is a second occurance, both unprovoked, I will now be placed on blood thinners permanently.

In hindsight, I believe the pain in my leg was sciatica, since that continued for a few days after all this wrapped up and then went away on it's own, and the scan showed no blockages in my leg. I don't know if the heart-thundering was an actual panic attack, a clot that passed through my heart and caused distress but no actual harm (lucky, if so) or if it was a symptom of the pulmonary embolisms. One of the symptoms of Pe's is actually anxiety and panic attacks sooo who knows.

All I do know is I think we caught this particular round very early in forming. My oxygen hadn't dipped below normal, I just knew from regular checking that it wasn't normal for me. Even my D-dimer count was only marginally raised.

So the Doctor at the SDEC clinic discharged me with some new blood thinners, and I'm being referred to Respiratory to check my heart and lungs, and then Hematology to monitor the progress of the clots clearing, and then adjust my medication long term for lifelong management.

But here comes the kicker, and why I've been AWOL since then. I have other health issues around bleeding. Specifically, menorrhagia that has previously had me hospitalised and needing blood transfusions.

And now I'm on blood thinners, that risk has gone up.

Within days of starting the blood thinners, I was noticing strong signs of anemia, so I've had to very carefully increase my iron intake, my vitamin C intake to help absorb all that iron, and keep an incredibly close eye on my energy levels and other signs like the colour of my nail beds or inside of my eyelids.

I THINK I have a handle on it all now, but it's definitely something I want to bring up with my hematology consultant when I see them. However, when that will be is anyone's guess since the wait lists at my local hospital are ridiculous.

Respiratory was supposed to see me within 4-6 weeks, and I've already had a letter from them saying it's going to be more like 13 weeks.

All that to say, I've been a bit busy? And while I'm okay, I'm also tired. Mentally, from the stress, but also physically from the anemia, so I'm just doing my best at the moment to stay above water.

As are many other people.

some highlights on tiktok from the rest of the week:

"We're gonna be practicing our rich people laughs" 🔗

"Reading my hate comments while I do my makeup" 🔗

instagram Q&A 🔗

she also posted some pictures on instagram that tumblr will probably get mad at me if i share too much of so here's a nice crop: