Have a heart! Yes, I do!

Well, I definitely DO have a heart. It's official!

Had my echocardiogram this morning at hospital, followed by being fitted with electrodes and the 48 hour ambulatory heart monitor (Holter tape).

With M.E., just making the bus journey at a fairly crowded, early time of day was more stressful than the whole hour long visit to the quiet, restful Cardiology suite! I was shivering cold on the journey in, sickened as usual by the motion, noise and light, my body struggling to regulate its temperature. But the journey is only ten minutes, so I'm very thankful for that! As usual, my mum stayed over to make the trip with me, helping by carrying bag, stick, coat and cardigan when needed! She really is such an angel in every awkward health situation. (Not to mention saving the taxpayer endless money in Carer's Allowance/DLA as she appears when most needed and asks nothing but love!)

On arrival at Cardio reception we were shown into the waiting area. Only two male patients waiting to be seen before me, so managed to spend the time resting and recovering with my eyes closed mostly.

Only about ten minutes after my appointment time, I was called in for the Echo. The lass operating the equipment got me to strip off above the waist while she got ready with another young woman at a computer screen outside the curtained-off couch and echo machine. Sporting my fetching hospital gown, (soon unlaced again to allow access to all areas!), I was to lie on my left side on the couch, right hand resting on my legs, left supporting my head.

By now, to be honest, my head was spinning a bit. The most difficult thing was probably maintaining that slightly uncomfortable positon without giving the impression my unsteady discomfort was in any way attributable to the very capable and efficient echocardiographer! I managed a few jokey comments along the way, but spent most of the time with my eyes half closed trying to put all my energy into maintaining my position and keeping still and quiet for the scan (i.e. without twitching or keeling over!)

This was the standard Transthoracic echocardiogram. It was a cold autumn day for icy gel to be applied, so a good connection would be made between the hand-held transducer and my hot little chest!  My muscles are so sore with the M.E. that the first contact with the business end of the transducer was rather painful. I was honest about it when the operator asked, but assured her it was me being tender, not her being heavy handed! The high frequency ultrasound waves pinged through my upper chest before the transducer was moved to underneath my left breast in several positions to view the heart from different angles. These sound waves bounced off the hidden corners of my heart. The glugs and roars audible from time to time convinced me it was still beating!

Then I hauled myself back over onto my back and the transducer moved to the top of my stomach/between my breasts and finally onto my neck with raised chin. These last few places are the ones where my current palpitations are most often felt. I must have had 3-4 heart "skips" during the whole process. No idea if these showed up or not till I see the consultant again.

Then this part was over and I cleaned up the copious amounts of jelly from my torso. Only need some custard to go with it, I joked feebly. I found the bit I'd missed near my throat when I put my jumper back on. I could see the missed gel seeping through then, as if I'd dropped my breakfast down me!

Back into the waiting area where my mum was sitting like a pack horse under a mound of my cast off belongings and outer clothes necessary for a cold draughty bus ride. She was talking to the wife of another patient, similarly burdened by her husband's outer garments while awaiting his return from the land of mysterious beeps.

 A few minutes and I was called into another side room for the fitting of the 48-hour heart monitor. You can see the equipment used, if you haven't had the joy of this procedure before, in the accompanying photos in this blogpost.

The lovely nurse who called me through fitted the electrodes while another younger nurse helped to explain and do the paperwork. They were very helpful indeed. Although the department normally asks for the monitor to be disconnected and returned to Cardio Reception between 8.30am-9.30am on the third day, because I have a diabetic ophthalmology appointment on Wednesday afternoon, they were more than happy to let me drop the monitor off later when I'm in the hospital for that. This was such a blessing and relief, as it means two sickening, exhausting bus journeys saved in the same day which would have probably knocked me out for the rest of the week.

I've got a spare set of electrodes in case the originals get wet or detached. I've an A4 sheet ruled as a diary to record date/time/activity/symptoms. Whenever I feel the palpitations, or any breathlessness, dizziness/faintness or chest discomfort, I simply record the time and symptom in the diary, also pressing either the yellow or green buttons on the monitor to make it easier for those analysing the tape to spot the relevant moments recorded. All simple. Even the electrodes are colour coded in order of placement on the body - like traffic lights. Red on the left lower chest side, yellow on the upper right chest and green on the right side of lower chest. Even having trouble with telling your right from your left, the diagrams should keep you ticking over!

The actual monitor itself is as light and small as a mobile phone and clips easily onto the waistband of trousers, skirt etc. The wires tuck away discreetly and the electrodes itch from time to time but are hardly noticeable.

I'm completely frazzled now. Hardly surprising! All this and a phone call on my return, from a good friend not seen since I was working full time as a minister on the South Coast has left me struggling to put one finger and thought in front of the other. There'll not be many "activities" on my diary page for the rest of the day, I reckon!

I'll keep you posted! They'll book me a follow-up session with the cardiologist after the monitor's returned on Wednesday. Hope this'll help reassure anybody going through similar.

Clockwork no batteries

Got my Cardiology appointments through the post this morning:

Echocardiogram (Cardiac Ultrasound) at 9.20am Monday 14th November. Poss 30 minutes @ Cardiology Suite, Level A.


48-Hour Monitor (Holter tape) 10.00am Monday 14th November. Poss 30 minutes - technician to apply electrodes/wires.


Requested to return so recorder can be removed 48 hours later. 


That should be the morning of Wednesday 16th November. Which just happens to be the same day as a longer standing appointment for my yearly diabetic eye screening. That's scheduled for 2.30pm (eye tests) for 3pm (appointment with ophthalmologist).


Looks like a daunting amount of exhausting stuff in a two day period, with little chance for pacing along the way. At the same time, I'm looking at it as a saving of spoons on the Wednesday. It means only one bus journey there and back to hospital, if I can co-ordinate the third floor cardio visit to be just before the ground floor opthalmology. It also means my poor long-suffering mum will only have to be shuttling back and forth on various unreliable buses to support and accompany me on the two days instead of three or four that week! 

Maybe I can find somewhere to rest in between? Maybe not - it IS a hospital after all! Lights are sickeningly bright and recent "improvements" have reduced comfy seating in some waiting areas and presented us with "convenient" touch screens to book yourself in etc that mean even more stress, co-ordination and balancing than before. 

Not sure any of the specialists I'll be seeing that week understand M.E. really; they count me as a diabetic on these occasions, and you're only allowed to be looked at as one illness at a time, in my long experience! They do their best. So shall I!


Last few weeks have hardly slept until after 5am. Alternately shivery and soaked in perspiration. Chest and arms, neck and legs hurting so much and hands all pins and needles in mornings. When I do walk, its noticeably slower that ever, like when I was first up from completely bedbound.

 
 Blood sugar in double figures much of time this last week, as if fighting virus. Some sneezing, but not much. Neck glands sore, voice very weak and tiring/painful in chest muscles to speak. Making so many mistakes when writing longhand, forgetting things, words especially when speaking.

Last weekend saw second massive unannounced hypo of the month that took me completely out. Something is changing in my hypo patterns and awareness during the hypo itself, like being awake in a nightmare, losing whole segments of consciousness while not appearing comatose to others. Possibly now I've turned 50 the oestrogen isn't oiling the wheels any more. Or more likely my liver just has no more glucagon to "dump" when my BG plummets without as much as a "here we go!"

Updates to follow, but right now, please excuse me as I get properly horizontal again in a darkened room!

There is a light and it never goes out!

Back from Cardiology this afternoon.


Good news - I have a heart!
Better news - it's still beating!
Best news - first ECG came up normal, as did my BP, (so it should, controlled by ACE inhibitors).


Consultant wouldn't leave it there, though. My heart's hammering above 100bpm on a regular basis and the frequent palpitations this past month are cause for further investigation.  Taking into account my 27 years on insulin with frequent sudden warning-free hypos, my family history of dad's stroke at 45, maternal Gran's death at 52 from atherosclerosis and heart failure plus plenty of valvular heart disease, angina etc thrown in for good measure, I suppose it's best checked out.


So now I'm waiting for appointments for


(a) Echocardiogram


(b) 24-hour Holter monitoring tape


and 

(c) another session with the cardio consultant before Christmas. 

In other news, we have this exciting development in M.E. research.
Time to put all the disappointment of XMRV behind us and learn to spell "rituximab". (Why does it look like something spelled backwards to my random thought processes?)

BREAKING NEWS: ‘Chronic fatigue syndrome eased by cancer drug’, New Scientist, 19 October 2011 

67% of patients in the trial saw symptoms improve.
Some later relapsed, but researchers are addressing this to see whether 'periodic doses of rituximab could permanently keep the symptoms of CFS at bay'. With an illness characterised by a relapsing-remitting pattern there's obviously going to be much more serious research needed, but it's an encouraging start. Hopefully this will open up yet more discoveries and eventually some reliable answers to free M.E. and/or CFS patients from so much suffering.


Bit brainfoggled and bamboozled now after tiring day under hospital lights and on impossibly bumpy buses, so will get head round this properly another day. Thanks to all you lovely people who were thinking of me today. As Morrissey sang, in one of his more positive moments, "There is a light and it never goes out." XXX

My heart starts missing a beat...every time

In case you think the title sounds like a spot of hypochondria, it's OK, it's just a line from "Heart" by the Pet Shop Boys!


But it does. Start missing a beat, that is.


Tonight it keeps skipping, dropping, squelching, thumping, fluttering more than ever. Not more than a couple of beats at a time, but more often than normal. My heart's been doing this through the day but this evening it's doing overtime. It happens through the night and I keep waking up, when I get to sleep for half an hour, in a sweat.

My guess, for what very little it's worth, is this may just be one of those "ectopic" heartbeat thingummies that turns out to be benign. Hoping so. 

Maybe it's debility from the M.E.? I'm certainly at a low ebb there. Diabetically my blood sugar is in the normal range while this is happening. Not having any extra caffeine in any form (reducing it in fact, to make sure it isn't that) and keeping water intake up to try and make sure I'm not just dehydrated.


Still waiting for the referral appointment at Cardiology on Thursday. All will become clear there, I reckon. My swinging brick will be put through its paces and I can stop giving concerned friends a heart attack worrying about me!

Don't need the cardiology to have a change of heart

Got to believe the doctor girl
He told me yesterday (yes he did)
Said you don't need the pharmacology
Cos I want you baby - I do want you baby
Don't need the cardiology

                                To have a change of heart.  - Scritti Politti 'Philosophy Now' from the album 'Provision'.   Quote from one of my favourite musicians, Mr Green 'Scritti Politti' Gartside, which sprang into my head as a slightly skewed summary of what just happened this morning. 

Well, for a start, my doctor isn't a 'he', she's a she, and she saw me today as arranged about a fortnight ago, not yesterday. But the rest is appropriate!
I'd reluctantly gone to see my GP to put friends and relatives minds at rest over the palpitations and tachycardia I've been having since my massive 'lost two hours of my life' hypo late last month. The one where my Mum found me slumped on the edge of the bed wielding one of my contact lenses and a nail file grunting "Grrrr - I DUNNO!!!!!" and smashing the proffered jelly babies out of her hands to fly across the room. Yes, that one.  My doc listened to my heart through the stethoscope and found it was pounding over 100bpm (white coat syndrome, though with her I feel quite relaxed?) though apparently regular. I had one palpitation late into 20 minute appointment. Flutter - swing. In the middle of my chest very slightly to the right.  She immediately made an appointment with the cardiology department of the local hospital in town, for a week today in the afternoon. Quicker than I managed to get an appointment with her, anyway!  I have been off Amitriptylene (NOT for depression, rather to help pain killers to work more effectively and to aid sleep with M.E.) for three years, and we were considering giving this another try to help the debilitating pains in chest, neck, arms, wrists etc. However, as  Amitriptylene can cause the heart to speed up, we decided it wasn't the right time to prescribe it until the heart problems are sorted one way or the other. She also advised me to run my blood sugars on the high side of normal till then so as not to put any more strain on my heart through hypo-induced heart-racing.   So I "don't need the pharmacology", well, no more than all the stuff I'm taking already and hopefully next week's trip to "cardiology" will also show I won't need "to have a change of heart" either! Long family history of valvular heart disease, strokes, atherosclerosis, cardiovascular early deaths notwithstanding! Is this maybe P.O.T.S. (Postural Orthostatic Tachycardia Syndrome) as part of the M.E.? Not always when I stand up, but also when I'm sitting? Will know soon enough.  Completely bushed now. No change there then! I'll keep you posted.