So it turned out to be quite the eventful month.
Since seeing my Gastroenterologist and weighing in at a measly 50.5kgs (which he was not happy about) things got busy, I got distracted and somehow my weight plummeted to a concerning 44.5kgs. I noticed myself getting weak and slow which was the first real physical symptoms I had that things had changed. Being underweight for so long I had got used to my stats being a little 'lower and slower' than everyone elses.
One night things really stood out though. As normal, it had been another busy evening and by the time I was ready to sit down for the night, it was time to take my nightly Amtriptyline as normal about 9-10pm. DH and I normally watch a show before I fall asleep/nod off but that evening I felt a bit peaky, which was weird as I had just had a Hydrolyte Iceblock (electrolytes help with my POTS symptoms). I looked at my fitbit, which I never use as a medical device, and my heart rate was 35 bpms. Shocked by that I got up and moved around, I was very light-headed and it might be my blood sugar? I grabbed a handful of blueberries and ate them to see if that made a difference. It would not go higher than the low 40s-late 40s. I sat down again and thought it must be a blip and tried to distract myself with the show but it was having trouble getting back up to 50s. DH was off to bed and I said to him I was concerned about sleep at this point as that is normally when it drops, so off he went and I got out my pulse-oximeter and tried getting a solid reading. It set off the alarms as could not get a proper reading. Normally with my poor circulation it struggles, but it said my blood-ox ought to be low given my pulse rate. I took my blood pressure and that seemed ok, so called Healthline for advice on how to get it back up. She assured me that the equipment should work fine and to put the pulse-ox back on. Alarms again and read out the details to her. She was concerned at how erratic it was so advised me to go to the ED. As I was not allowed to drive myself and DH had to stay with the kids, they called me a non-urgent ambulance who could at least check me out and see if I needed seeing to. I snuck in to tell DH not to fret but we would be getting a visit.
He heard the reversing up the drive in less than 10 mins, they had come on red lights! In a flurry they came straight in to where I was sitting and got out the trace machine and starting hooking me up. DH was approached to try and figure out my meds, I had my dispenser already packed with a go-bag. All of the things that I learnt from having a poorly dad was be prepared always.
Something wasn't right. My heart rate was considered irregular bouncing from the 30s to 70s, to 120, to 180 and back down. My blood pressure was systolic of 134 which is high for me, and DH looked panicked. He was seeing it bounce all over the place. They asked if it was normal for me? Ummm no. They decided to take me in as they were not allowed to leave me at home with that level of concern. Off we went. On reaching ED it had calmed somewhat on the journey and was just low. I was feeling fatigued.
There was a wait to be seen by a nurse of about an hour. They did a trace and it seemed to be fine, ie no irregular heartbeats. Bloods taken. I was then left in a cubicle for 6 hours and not seen to. No water, nothing. I couldn't sleep due to being right next to the nurses station. All I could hear was my Bradycardia setting off the monitor every time I got close to sleep.
Then came 6am staff handover and another set of obs. They would avoiding checking on me as they thought I was asleep. As if! I was sore from being on the gurney bed all night so sleep was impossible. They did another 12 lead EKG and again no irregular heart. It was a further wee wait for doctors rounds and they finally questioned me on what had happened and general health questions as my bloods had come back with Leukopenia (WBC of 3) and a low eGFR. When we determined there was no immediate danger or sign of infection I was discharged to see my GP for follow up bloods in a week. Diagnosis for admission was: Asymptomatic Sinus Bradycardia (Sinus meaning normal rhythm. That we already knew but good to have it documented. They suggested I was frail and malnutritioned and should be monitored.
Follow-up bloods scheduled for a week later, turns out my WBC didn't budge and my eGFR dropped even further and my Creatinine levels were high? Concerned my GP suggested it might be an extremely rare allergic reaction to my new GERD medication and to stop it immediately as she thinks it might of caused Interstitial Nephritis. On repeat bloods my levels went up only just slightly to Stage 4 CKD (where I sit normally with my renal agenesis). This is an ongoing saga however and we wont know for sure for another 5 weeks on my follow-up test.
With all of this going on, thought it was a good idea to visit the GP re the hospital visit. After a few ob checks and squat and stand BP reading on 90/60 a referral was made on my Gastros request to the Eating Disorder department of our local hospital. She referred me on a semi-urgent basis due to my symptoms, co-morbidities and declining weight possibly being linked.
Little does she know it's now sitting at 42.6 as of today. Thank god my referral was accepted onto the waiting list as 'Houston, I think we have a problem'.
My next post will be dietician follow-up. She is my saviour xx
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