24hr heart & blood pressure tests

This post is going to take a while – you might need to come back with a cuppa and half hour to spare, don’t say I didn’t warn you 😉

When I saw Professor Newton back in June she requested a 24 hour heart and blood pressure test as I have chronically low BP and weird trippy skippy heartbeats.  It won’t show anything and to be honest I have no idea why I’m going along with it but it’s nice that, after 20 years of no-one giving a crap about my health, at least someone thinks my symptoms are worth investigation.  I’ve waited nearly 3 months but Tuesday was D-Day and thankfully I didn’t have to travel 90 miles back to Newcastle as the Prof had arranged for me to have the tests done locally, yayy!

So, Tuesday morning I took my little dog out at 8.30am despite the fact my hip and SI pain had kept me awake half the night (dog walker still on holiday and I’m sooooo ready for her break to be o-v-e-r!).

Came home and ordered a new thumb brace off Amazon – for some reason all my joints are really playing me up atm which is a post for another day.  I could get a free one on the NHS if I want to wait 2 months but funnily enough, I don’t.

Went into town early as I needed to drop Bertie off with the folks (far too hot a day to leave a dog in the car while I have the monitoring equipment fitted).  My opening line when I get to my parents house is always “everything alright?” to which the answer is usually “ticketyboo”.  Not today.  Today the answer was “nooooo!”

My Dad has a hernia and apparently he’d tried to get something out of a high kitchen cupboard ready to prepare dinner, had aggravated it and was in agony.  So my Mum had climbed onto a small step to do it instead, had fallen off, and was also in agony.  I was stunned.  As if having half a lung and heart failure wasn’t bad enough, she also has severe osteoporosis and has already smashed her wrist to smithereens in a fall before.  I tried not to shout “what the bloody hell were you thinking?!” but my face must have spoke volumes.  So I got the food out of the cupboard for them, made sure Mum hadn’t done any serious damage and dosed her up on painkillers before taking my Dad up to the health centre which is what we’d been told to do if his pain got worse.  We were asked to come back later that afternoon for an appt with the Duty Doctor.

I drop Dad off at home and go back up to the hospital to have my monitoring equipment fitted.  I was already knackered and it wasn’t even lunchtime.

The nurse who looked after me was as frazzled as it’s possible for a human to be.  She had no idea I was supposed to be having my BP monitored as well as my heart rate, so had to go and locate the right equipment and download the necessary software.  In the meantime a Consultant had put his head round the door asking if she’d go and take some blood for his patient.  As my appt was now going to take considerably longer than anticipated she asked me if it was OK for her to do that first.  Obviously I said “yes” – what else was I going to say?  During the next 30 minutes we were interrupted a further 8 times with people sticking their heads round the door, the nurse running around like a demented chicken and me sat there with my boobs on display.  She couldn’t concentrate on a thing to be fair and spent the entire time red faced and apologetic.

Eventually, monitoring equipment in place, she did a test blood pressure measurement which came out at 100/54.  “Gosh, that’s excellent!” she exclaimed.  I just looked at her dumfounded.  A normal BP is 120/80.  If my BP had been 140/106 would she have thought that was excellent too?  Of course not.  But no-cares about low blood pressure, even though it causes all sorts of disabling symptoms.

Back to my parents’ house where I wolfed my lunch down like I’d never seen food before in my life.  Going 5½ hours without eating isn’t my forte.

90 minutes later I was back up at the health centre with my Dad.  I always go in with him to see the Doctor, because my Dad’s deaf, can’t follow what’s being said, and plays the Big Man whose pain “is just a bit of a niggle”.  So I have to go along to explain that my Dad never admits to being in pain and “a little niggle” is his way of saying he’s in agony and can’t actually stand up straight.  The Doctor was from the Caribbean and even I struggled to understand him, so we spent the whole appt with my Dad looking at me with raised eyebrows and me repeating everything the Doctor said in a very loud Cumbrian accent.  My Dad’s now been placed on both codeine and the waiting list for Surgery.  In the meantime he can barely hobble and is struggling to look after himself, my Mum and my 100 year old Nan – and I’m struggling to look after all 3 of them, plus myself and the dog.

Back to the folks’ I go again to drop Dad off and collect Bertie, who had to be walked on the way home (to be fair I could have taken him on my scooter, but I want the equipment to monitor me when I’m active but exhausted and feeling rubbish as well as stationary).  Driving with the BP cuff going off every 20 mins was challenging.  You’re supposed to relax your arm and if you don’t the cuff just keeps blowing up until it gets a decent reading – after the 4th attempt your arm gets really quite sore, so in the end I had to steer with my left arm and just rest my right arm on my lap which got tricky when I had to turn corners 😉 .

Finally made it home at 5pm and collapsed into bed, only to have to get up again an hour later to make dinner, which I’d been told in no uncertain terms by the Nurse was not to involve the microwave.  Of course I promptly forgot that little nugget and nuked a cup of warm milk, then freaked out in case I became radioactive or something 😉 .

I snatched the odd ten minutes of sleep during the night.  I’m a useless sleeper at the best of times, and there’s no way I was going to snore my way through my arm being squeezed in a noisy vice every hour on the hour.

I could see my BP reading on the monitor and at 11pm, when I was lying down watching TV, it read 88/38 which is stupidly low.  Thankfully I had several skippy heartbeat sessions throughout the day which I hope to goodness show up on the readings.

Back up to the hospital on Wednesday to have the equipment removed.  Thank God, because the itching was driving me insane.  I tend to forget I have Dermographism and that anything which presses on my skin causes hives, so I ended up with white itchy welts around the top of my arm where the BP cuff had been and a painfully itchy imprint off the sticky heart pads.

The nurse wasn’t able to give me any of the heart results but she could tell me my BP had  averaged 111/54 during the 24 hours, which is about what I expected.  My systolic (the first reading) is considered within acceptable limits, but my diastolic (the second reading) is always way low – not that anybody cares.  If the diastolic pressure isn’t important I’m clueless as to why they measure it!  So now it’s just a waiting game for the results to get to the Prof at Newcastle and for her to contact me.

 

 

 

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11 thoughts on “24hr heart & blood pressure tests

  1. emmafarrellblog

    Wow you poor thing it sounds like such a hectic day, I hope things have calmed down and your parents are okay! Thank you for sharing about the 24 hour blood pressure and heart rate test! I’ve had the 24 hour HR one but not the BP, it sounds very interesting! Hope you’re feeling okay xx

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  2. Sherry denBoer

    Me again…can I just say that this post made me smile (not at you, WITH you) as I have soooooo been there feeling insane, helpless, flying away in the current of craziness, all the while sickly and weak…I truly feel for you and this day of yours (challenging to say the least). And I know what it is like to experience this sort of malarkey just to find, at the end of the day (so to speak) there is nothing much to be gained (but you had to do it). I so hope you get some rational and helpful info from this experience but, if you don’t, for what it is worth…I TOTALLY know how you might feel…well, I am not you, but I have so been there…and I wish you strength and want you to know that – although I can do nothing to make a real difference for you…I so care. Thinking of you. Sherry.

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    1. bertieandme Post author

      Thanks so much Sherry. My life is like some daily sketch show off the TV – it even makes me chuckle. I live in the middle of absolutely nowhere yet I seem to have a crazy life!! At least I’m never bored 😉 Hugs x

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  3. Marley

    Dear Jax and Bertie:

    Well it looks like from your picture with all the electrodes that they fashioned you up for Halloween a month early! Get a pot of tea going and calm your nerves.

    What a crazy day! You certainly had your hands full. I hope your Mum and Step Dad are doing better. You are a good one to pick up the pieces when you need someone to do it for you! God bless your spirit!

    I’ve had those days searching for answers. I like to leave no stone un-turned. My blood pressure has always been low. So has my Mother’s when she was with us; she passed at age 80 in 1998. Doctors and nurses would say my low BP was great! I thought it was too, but it was actually the sign of a rare as yet undiscovered problem with histamine release from mast cells. Histamine is a vasodilator-it relaxes the smooth muscle in blood vessels and opens up blood flow. That way, Nature intended the other cells in the immune system to reach the site of perceived bacterial, viral,etc. invasion as fast as possible.

    Sometimes a drug reaction(which anti-malarial drug(s) caused you harm?), a viral or bacterial infection(you wrote that you had meningitis from the meningococcal vaccine), emotional or physical stress, a death in the family, divorce,etc., causes a chronic illness. About 1998, during a stressed out time in my life (with my Mother gone and my brother with his prior rotten drainage of her funds for his use),I started up with GI pain and got my mis-diagnosis of Crohn’s disease until 2012 when it was mast cells all along.

    Have you ever been to a meeting of The Mastocytosis Society? I read that the 2 previous annual meetings were in Charleston, South Carolina where Dr. Lawrence Afrin worked, or in Boston, Massachusetts, where Dr. Castells and Dr. Akin work. Have you ever been a member? During Sept.17-20, 2014 there is the 20th annual meeting of The Mastocytosis Society at the Doubletree Hotel, near the Mayo Clinic, in Rochester, Minnesota. I believe the annual member cost is $35. The meeting is close to $300. The hotel is $135 per night. The meetings and meals are in the Hotel. My flight would be $500 direct from Atlanta, Georgia to Rochester, Minnesota International Airport. The airport is 3 miles south of the hotel with Shuttle bus.

    The Mayo Clinic is like the “Emerald City” in the old original movie “The Wizard of Oz”. Show up to the Mayo Clinic from anywhere in the world and they would grant your wish and try their hardest to solve your disease. They believed that the best way to solve a case, was to have Doctors from different specialties work on the case alone and then together. The Mayo Clinic would use a team of Doctors, or “Integrated Medicine”, without regard to financial barriers. Johns Hopkins Hospital in Baltimore, Maryland when formed, and to this day, is where one goes when no one can figure your disease out.

    One might think from the name “The Mastocytosis Society” that the only topic is Systemic Mastocytosis, but it is not. At this meeting, topics include mast cell activation disorders, biomarkers of mast cell disease, classification of mast cell disorders, pediatrics, pregnancy, teens, skin manifestations, gastrointestinal mast cell disease, neurologic and psychiatric issues from mast cells, caregivers, disability, advocacy and a charity run, walk or watch as the case may be.

    I wore my daughter out with my trip to Boston to see Dr. Castells(still no word yet from her on my stage of Systemic Mastocytosis or if mast cells can cause pachymal or dural meningeal enhancement upon brain MRI with contrast dye).

    When I was in Boston, Dr. Castells prescribed Gastrocrom(Cromolyn) to work up to 200 mg orally 4 times a day on an empty stomach over 8 weeks. She prescribed it for the “brain fog” or loss of short term memory, and loss of concentration. Cromolyn is a mast cell stabilizer. I found my cell phone in the dryer with a bedspread recently. Don’t know how it got in there but the phone still works. My husband can’t get off work to go to Minnesota and I am now having an “Aha!” moment were I am realizing I am disabled and can no longer travel far by myself.

    Speakers include Dr. Lawrence Afrin on Novel Markers in MCAS, Dr. Mariana Castells on mast cells and pregnancy, Dr. Theoharis Theoharides about the heart, a GI mast cell MD, Dr. Matthew J. Hamilton, and a NeuroPsych mast cell MD, Dr. Olivier Hermine. Dr. Catherine Weiler gives a mast cell disease overview. Dr. Joseph Butterfield talks about histamine intolerance. Dr. Tracy George talks about the bone marrow and tissue pathology. Dr. Dong Chen talks about Lab findings. Dr. Kristine Greer talks about the Emergency room and Dr. Patricia Beggiato talks about Insect Anaphylaxis.

    The website for the meeting is http://www.tmsforacure.org/conference.
    The contact person for the conference is Jim McKee.

    I hope that the meeting is taped and available for purchase/donation to The Mastocytosis Society, Inc.

    I also discovered that there is a recent $72 book out on Amazon by Dr. Akin on Mastocytosis . Marley

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    1. Marley

      Sorry, my brain fog got me on the above website. It goes to the 2013 meeting. I also wanted to mention the Mayo Clinic has a new clinic for disorders of the mast cell and the eosinophil. Marley

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      1. bertieandme Post author

        Thanks so much for all this info Marley. Sadly I’m in the UK and too unwell (and can’t afford) to get to the States. I did attend the UK Mastocytosis Society’s 2013 conference last year though, which sadly was very poor in terms of MCAD despite having international speakers (like Dr Afrin!) 😦

        Looking back I’ve had mast cell disease since childhood. I’m convinced it’s part of the Ehlers-Danlos as per Dr Maitland’s hypothesis. Getting the meningitis just caused it to beserk after lurking for several years – as you rightly say, infection is a huge mast cell degranulator. Jak x

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  4. Elizabeth Milo

    So, yesterday, my Mum texted me to say her dog had injured his leg running around in the park and I said, “I just read that my friend Jak’s dog was injured running as well.” Well today she texted that she had had a terrible fall (slipping in dog poop on the street!) and I couldn’t believe it, but had to tell her about your Mum, too. I hope both our Mum’s and both dogs recover quickly! XX

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    1. bertieandme Post author

      😮 Spooky!!! Just remember to tell us if your Mum wins the Lotto jackpot and I’ll make sure I’ve bought a ticket 😉

      Hope your Mum isn’t too badly hurt. We need to wrap them both up in bubble wrap. Oh, and the dogs too, although knowing Bert he’d probably eat it 😀 xx

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      1. Elizabeth Milo

        Haha! Yes, and she said they backed into a car on the way to the park, so, if bad luck comes in threes, they’re good for now.

        Now let’s hope for three pieces of good luck. Oh, the boys are eating the electric meter reader lady, gotta go. 🙂

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  5. kneillbc

    What a crazy day you had. I’m completely impressed that you didn’t end up a puddle of tears by the end if the day. I over did it at a block party the other afternoon and it did me in for days! I hope you were able to rest in the days that followed- and I hope your folks are doing ok too! It’s a lot for you to have to take care of them when you aren’t well yourself! I know what it’s like though- there just isn’t anyway you’d leave them in the lurch. I do hope the monitor explains exactly what is going on, and that it is something completely benign.

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    1. bertieandme Post author

      Thanks Karen 🙂 My Dad sees the surgeon on 1st Oct, so I hope he can get his hernia repaired in the next couple of months. He’s an avid walker, so to not be able to get about is doing his head in! x

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