Ambulance Trip, Sinus Bradycardia, Stage 3 Kidney Disease and Neutropenia (again)

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

Avoidant / Restrictive Food Intake Disorder (ARFID)

The report from my gastroenterologist came in, as you know, I get copies of all my reports so I am well informed before a follow-up or any additional conversations I have with my referrals as I've spent the better part of 10-12 years being referred from one specialist to the next.

There was one part that stuck out to me. After our conversation at the clinic about what I was and had eaten during the year, what my dietician and I came up with as a plan, he was shocked to hear I was on next to no solid food and relying heavily on the E028 nutrition. The conversation then turned to my restricting and any problems it is causing me and might cause in the future. "I feel better when I don't eat" was not something he was expecting. I have reduced pain, better sleep, more energy, less fatigue and reduced IMO/GERD symptoms. There it was written into the report, could it be ARFID? Wow, someone finally said it, could it be an eating disorder? I prefer the term disordered eating to be honest. It was time to start the discussion I suppose, but of course I was reluctant to admit that I might have a DSM-5 Mental Health condition that was causing my symptoms?? Something functional he called it. After much research he was possibly right? How could that be? 

This topic may feature quite heavily in the next few posts, so here is a quick rundown of what ARFID is and how its diagnosed.

Esophageal Dysmotility? Barium Swallow and EAST testing

My GP and I were slightly perplexed as to why eating is such an issue for me at present. It causes me a great deal of discomfort and fatigue, but we are running out of things to explore for answers. I was referred back to my Gastro for further investigations. Part of my EDS diagnosis was to both get an understanding how long term it would affect all of my connective tissues and stroma, so it was key to find out if swallowing had any muscular dysfunction attached. 

There were 3 options, barium swallow, manometry or Acid ph testing.

He said while the barium swallow may not give us much, it would give an indication if further tests were needed.

My gastro ran a basic allergy panel to check for sure if I was allergic to any of the classics like dairy, wheat, egg, fish, shellfish, nuts. All came back normal, so much for the wheat and dairy free testing back in 2006. That started a long journey of trial and error which ended up at FODMAPS, which is where the the restricting began. Go figure.

To be honest the barium swallow x-ray was probably my second worse test to date. The Barium is really thick and gritty and causes instant reflux. The whole test did not take long and I was able to get instant answers from the doctor who performed it. The clincher was whether or not I could swallow the marshmallow after only a few bites. Who knew my fate would come down to a marshmallow. Success! Was happy to hear it all went well and there are no issues with my oesophagus musculature or swallowing.

Results went back to my GP and Gastro. The wait for a reply began. 

Meanwhile I had decided to stick to my liquid diet and try to add a few more options to it, little did I know that would be my undoing.

GYN & Vascular re-visit

Meeting up with my GYN again after a year was interesting this time around as she wasn't expecting the news I had for her when I met with my vascular surgeon. Finally an answer for my pelvic congestion syndrome and more information for us to discuss. Soon we will need to make a decision re a hysterectomy, we both want my uterus out so we can finally confirm if I have Bicornuate Bicollis, but as my AMH is still way high, I'm still pretty far from being in the position to be able to do that without HRT which is scarce to find here in NZ at present.

I discussed with her the possibility and she is really reluctant to remove it I enter menopause properly, I'm in perimenopause due to my ovary removal. Also until we had a greater understanding of what my blood flow would be, so back to the vascular group for answers. It turns out that compensatory flow is a thing and it would find a way round, believe it or not the removal of my uterus would actually improve my pelvic congestion permanently but we won't know until we go there.

It's a tough decision as I obviously want to be rid of any of the problems it gives me, but I also will still have a 'cycle' and all the problems that go along with that, my Adenomyosis would have to get a lot worse to get to the stage of operating, so looks like checking yearly is my reality for now, just another surgeon in a holding pattern until things naturally decline.

As part of my long-term care plan, I want the decision to be based on best outcomes and willing to trust the experts and wait and see... I'm sure around July this year, I will have a re-visit and update on this.