Pacemaker Update: 9 Months. The whole not dying part is pretty fabulous.

Nine months. Nine Months! That's how long I've had my pacemaker, Jeri. I get regular emails about pacemakers so thought I should do an update on how things are going. More doctors are looking at them as an adjunct to other treatments, or to allow patients to take certain medications. But in the world of Dysautonomia there is no single reason for having one implanted. And for most, they are a scary and last choice option.

(Jeri is a sexy piece of tech.)

I had my pacemaker implanted after a cold Tuesday in May last year where my body threw me a curveball. One minute I was walking to my kitchen feeling not great, but not unusually unwell. Next I was on the floor unable to get up and calling out for help. My eldest son had to pick me up and help me to the couch where I stayed for hours, grey and starting to panic that I may actually die. A 24hr halter-monitor and ECG later and I was booked in for a pacemaker. Bradycardia had hit. Some switch went off in my body and that was it. My cardio and neuro concluded that the autonomic fibres in my heart had finally keeled over. Although this had happened in other parts of my body I really hadn't considered it happening to my heart. The party line is that Dysautonomia affects the nerves but the organs themselves are generally sound. Crazy thing is that my heart is still structurally sound, but those pesky nerves are rather important to making it work properly.

I had never felt so sick in all my life. My family were worried during the waiting period. Time and again my heart dipped, and stayed, down into the 30s and 40s. My limbs were grey and ice cold. My lips blue. Basically I looked, and felt, like death warmed up on a daily basis. It was a tad scary. But here I am sitting and typing and very happy I made the decision.

How did you know you really needed one? 

This is one of the most common questions I am asked. Apart from the objective data of the ECGs and Halter-monitor, I knew something was really wrong. A lot of patients worry that they might miss a heart attack. That they might miss that crucial moment when they really need to go to the ER. When you live with crushing chest pain on a daily basis it can be hard to know. But the pain I felt when my heart started its slow decline is like nothing I had ever felt. The pain in my chest, neck and arm were far more intense than anything I had ever experienced before and were not relieved by any regular methods. It was scary intense. I could hardly walk. Stairs were out of the question. Everything was exhausting, far more exhausting that anything I had ever experienced before. When your heart is hardly pumping, your body isn't happy. Our normal is abnormal. But there are times when that changes and that is when you have to listen and act.

Was it painful?

Short answer is yes. Though nothing you can't deal with. My one tip? Make sure you get adequate pain meds organised before your surgeon goes home or you are discharged. Ice and a panadol will not cut it. There will be a period where you aren't allowed to move your arm as the pacemaker and wires settle. Once over you have to start moving. You will not want to move your arm. It hurts like hell, but no movement equals frozen shoulder and you don't want that. I did find I had a lot of inflammation from the surgery so a few Nurofen were very helpful. I still have pain as my dodgy collagen mean that the pocket that holds the pacemaker in place regularly has little tears and it does rub across my rib which hurts. But it is still outweighed by the benefits.

Can you feel it?

I can feel the pacemaker and part of the wires that thread down to my heart. Mine was placed under the muscle in my chest as I have little to no fat. Still it sticks out and I can easily trace its shape with my fingers. Most of the time I don't notice that it is working, it becomes white noise, but there are times where I feel a jolt as it kicks in. Which is both reassuring and disconcerting at once.

Was it worth it?

Absolutely. Yes you have to commit to surgery every 10 years for the rest of your life to replace the pacemaker (not your wires, they stay in situ except for exceptional circumstances). But the fear that I could suddenly die is gone. Not only for me, but for my family. My blood pressure is not over-reacting to constant drops in my heart rate like it was. Now I sit at a fun 70bpm. It even bumps my heart rate up to 100 so I can get around thanks to an inbuilt actimeter. My most recent check showed that I am relying on it the majority of the time. It also showed that overall I can do a little more compare to what I was doing beforehand. And did I mention the not dying part? That's pretty important.

(My lovely cardio going through my latest readings. As you can see it is simple to check. Just whip a computer mouse on your chest and watch the monitor.)

A pacemaker will not be a solution for every patient. They tend to be a last resort for patients who have run out of options. And they will not fix any other dysautonomia symptoms. If you have atrial fibrillation, permanent bradycardia, or pauses, they can be a godsend. Their use for tachycardia is less well established, though if you have a reactive bradycardia to tachycardia meds they can be implanted so that a patient can have the meds that act on their tachycardia. There are also a new generation of pacemakers that work on blood pressure which I must say interest me greatly. They are also getting smaller every year.

I wouldn't go back and I have no regrets. It was scary at the time but it is also the best thing I have had done since I first fell ill.

(I am grateful that my cardio read my email, took me seriously, ordered the tests, and got me in quickly. Not even 2mths from go to whoa.)

Next month I have my first post-pacemaker, brain and spine MRI. Now that freaks me out. Not so much about the possibility of it all going horribly wrong and my pacemaker exploding out of my chest, or one of the many other disaster scenarios created in my mind. But being stuck in the Thumping Tube of Death yet again. Now that gives me pee-my-pants level of fear.

Michelle :)

Related posts:
Bradycardia: when your heart goes, meh.
So there's this thing called a pacemaker, and apparently I need one.
Pacemakers, capes and becoming the bionic woman, or Seven of Nine, if you talk to Mr Grumpy.

Don't forget to head on over here and donate to Dysautonomia Research here in Australia, at The Baker IDI. Lots of exciting research occurring currently and more projects on the way.

Scars.

Today was another day of joy changing my dressings. Dodgy collagen means that two weeks post-surgery my wound still isn't fully sealed. There's one pesky patch that teases me. One day I look at it and think, "Finally. Finally, it is starting to come together." The next day I have a line of open, pink wound. Sitting there. Laughing at me. I'm pretty sure I heard it whisper "sucker", complete with maniacal laugh. Ugh. I know I shouldn't get my hopes up. That I should just be patient. But patience and I aren't good friends. Never have been, and likely never will be. Add in that day-after-day that the adhesives needed to keep my dressings on, and the wound protected, are eating away at my skin and I know that scarring is once again in my future.

Many have asked if I am worried about scarring. 

Am I worried about people being able to see the lump on my chest where Jeri sits? 

The answer is simple. No. 

I have a number of scars on my body. I don't try and hide them. It never occurred to me that I should. I don't see them as a cause for concern. I don't see them as something that I should think of with shame or embarrassment. 

They tell me tales of my life. And speak of gifts big and small. 

The stretch marks on my stomach told me of the gift of two beautiful boys. 

The scar on my right breast told me I would be given the gift of attending way too many school concerts.

The scar on my left breast told me I would have the gift of spending many late nights making birthday cakes.

The scar on my stomach told me that I would be given the gift of seeing my kids grow up.

The scar on my thigh told me that I would have the gift of more years with my husband.

The scar on my ankle told me that I would have the gift of spending more Sunday's having family roasts.

The scar under my left breast told me of the gift that my intuition was right.

This new scar tells me of the gift that I will wake up tomorrow, and the next day, and the next. 

It tells me of the gift that I will be able to sit on my couch and argue about what we'll watch on TV tonight. That I will be able to yell at my kids for not cleaning their rooms. That I will do a bazillion loads of laundry. That the cleaning of many toilet bowls are in my future. That I will be able to argue with my husband over stupid little things. That I will be able to both snuggle with my dogs and yell at them for chewing up yet another remote. That I will be able to embarrass my kids with hugs in public and stories from their childhood. That I will be able to hug them and spend time with them. That I can hold my husbands hand this night and the next and the next.  

This new scar gives me time.

Time that suddenly became more pressing.

It gives me hope. 

Hope I'd lost.

It gives me possibilities. 

Possibilities I'd started to forget.

It is a gift.

A gift I never imagined.

There is no shame or embarrassment associated with with this scar. Or any of the others I wear.

I will celebrate it and yell my joy from the rooftops. This scar is a gift, not a burden. It is beautiful. And I will wear it with my head held high and a smile on my face.  

Michelle :)

Pacemakers, capes and becoming the bionic woman, or Seven of Nine, if you talk to Mr Grumpy.

This time one week ago I was in the midst of teeth clenching and swear-mumbling. I begged for icepacks and looked aghast at the fact my cardiac surgeon left for the day thinking that a couple of panadol would do the trick for post-op pain. Ah, good times. But that was a week ago. And today it seems a lifetime ago.

(Jeri Ryan as Seven of Nine, source)

I am now the proud owner of a pacemaker, or Jeri as I like to call her. You see, Mr Grumpy has always had a thing for Star Trek Voyager's Seven of Nine, played by gorgeous Jeri Ryan.

And because I love him and really this is as close to his dream as he is ever going to get, my pacemaker will forever be known as Jeri. I do refuse to wear the skin tight body suit though. Unlike Jeri Ryan, I am less hot hourglass and more icypole stick/stick insect. No one needs to see that. But I do have my first Borg implant, it's apparently of the cutting-edge medical type, so lets just go with it.

To say I was a little nervous pre-implant is a bit of an understatement. No matter what you read or hear (and a huge thank you to everyone who were kind enough to share their experience, it's so good to hear from other Dysautonomia patients who have been there and done that) the idea of someone cutting into your chest and screwing wires in your heart is a little concerning.

I cleaned and crafted. At odd hours and in my pjs. I even tried to be as fit as possible pre-surgery. Though needing Mr Grumpy to carry me up the stairs at home after a 5 minute walk sort of put paid to that. I had a couple of okay days and started to doubt my need for surgery. Of course that was followed by a few days feeling like I was going to die, so you know I kinda thought maybe, just maybe, my cardio was right after all.

Why yes I did have to finally start that craft project that's been sitting around for months, 

9pm, in my pjs, two nights before my surgery. 

(Always pack things that make you happy. 

Like Dorothy slippers, a cape, a spoon dress and nice pjs etc)

Thankfully Mr Grumpy held my hand and managed my anxiety as he always does. We stayed in the city the night before, about 5 minutes from the hospital to avoid the shamozzle that is peak hour traffic. Not that either of us slept, but we went through the motions, tossed and turned all night and were woken up by the tradie truck beeping it's way back into the small driveway next to where we stayed.

I don't often name the hospitals I go to, but this time I have to give a shout out to The Epworth here in Melbourne. Great staff from the admissions lady to the porters and the medical staff. Nothing was too much trouble. Everyone was friendly. They even made me delicious meals from scratch to account for my food intolerances and allergies. I can't stress enough how much of a difference it makes to the whole experience. Last year's admission to another hospital in the city was a disaster from go to woe. Surgery stress aside this was the best hospital experience I have had by far.

(Waiting sucks)

The pre-op nurses were amazing. Even scored me a private room! Mind you once more I was odd woman out. There were a bunch of 50+ year-old men, a 94-year-old woman, and me. I don't think I am their normal pacemaker demographic. For once the staff had read, and more importantly believed, that I had medical adhesive allergies, so they tried their best to avoid the worst of them such as the tegaderm and steristrips. In the photo below you can see they even used a sock over my cannula rather than tape which was a godsend. What I particularly loved was that the staff and the surgeon were happy for me to keep on my red Juzo Soft's for the surgery rather than the hideous white TED stockings you are usually forced to wear. I believe I may be the first patient they'd had with bright red legs on their operating table!

(Go red compression stockings)

The surgeon came in pre-op and went through the surgery, what to expect, what not to expect, all the risks etc. He even openly gave his infection and complication stats, all super low thankfully. Now that's a first. I had some IV antibiotics pre-op which I will say was a relief after the nightmare of last year's post-op infections. So far so good, my GP checked the wound on Monday and no signs of infection.

In the OR things did go a bit pear-shaped as my body's reluctance to process either sedation or local anaesthetic has become worse (wish I knew that beforehand). Whilst the procedure itself went well, I have way too many memories of pain and hearing the surgeon say "give her 5 more". I may have dropped a number of F-bombs in that OR. He did come in the next day and apologise. Apparently I was given a ridiculous amount of anaesthetic and sedation, but it just didn't work. At least now I have an official letter stating that I am only ever to have general anaesthetics from now on. After battling to get other doctors to believe me, it is a relief to have it finally acknowledged and documented. Now if only I didn't have to feel the pain during the surgery that would have been nice.

Now, because many have asked, down to the nitty-gritty.

I ended up with the latest Medtronic Advisa MRI SureScan Pacemaker, which is MRI compatible (not for the first 6 weeks post-surg, though). Helps to have a surgeon who is researching their efficacy. Given the high likelihood that I will need further MRIs that is a bit of a relief. It's set to kick in when I drop under 60bpm at the moment, though my regular cardio did say it'll likely go up to 70 long-term. Thanks to the weight I've lost he had to cut a pocket in my chest under the muscle for the device, whereas most go under the skin. So the pacemaker sits in that pocket, which I can see and feel, and then two wires were threaded through a vein and into my heart where they were screwed into the internal heart muscle wall. Just a heads up for anyone who has this done: Under muscle is more painful and takes longer to heal and settle. The scar is pretty small compared to what I was first told. About 2 inches long and about two inches below my left collar bone.

It's strange how many people who think I would be worried about the scar or that the pacemaker will be visible. That is the least of my concerns. In fact, I couldn't give a crap about scars or visibility. Now, my heart stopping? That I was concerned about. Aesthetics doesn't even rate in that context.

I was unable to move for the next 4 hours and had continual heart and bp monitoring during that period. The nurse wrote 6:45pm up on my board and said I could get up to pee at that point. That may have been the longest 4hrs of my life. Urinary frequency and a bag of fluids during the procedure meant that I was using every Kegal exercise and prayer I had ever heard of to hold on. Their was the bed pan option but having had that indignity before I was determined to hold out. Amazingly I made it, and even more surprisingly I managed to walk from the bed to the loo without help. Go pacemaker. Go!

Pain was not my friend that first night. Not just my chest but, left shoulder and arm, as well. All that was on offer was a couple of Panadol and an icepack. Not sufficient by any measure. About 4am it was tears in the eyes level of pain, and it takes a lot to get there these days. The nurse did take pity on me and get me a couple of Panadine, but really I might as well had a sugar tablet it was that useless.

I had a holter-monitor on till the next morning to monitor how it was working. And the pacemaker was checked the next morning to make sure it was working. This consisted of simply placing, what looked like a large computer mouse over the area for about 5 minutes. A chest x-ray to ensure all was in place and a visit from the surgeon and I was finally allowed to leave.

And now Jeri and I are home and getting used to each other.

Many macarons have been eaten (thanks Julia) and many movies have been watched. Prometheus, disappointing. The Hobbit, much better than I expected. Zombieland, still cracks me up. My bestie came by with CDs and meals (thanks Kerri) and made me laugh.

Pain is still an issue but somewhat reduced. I can feel Jeri kicking in all the time, it's weird and kind of hard to explain. A weird fluttering/hiccup is the best I can do. All I know is that I am now even more aware of the drops, so I realise how much I do need her.

Do I feel better? That's a hard one. I think I will know more when the pain subsides. But I will say that I feel clearer mentally than I have in months. Funny how adequate blood flow can help like that.

I managed a slow 5 minutes on my mini-cycle tonight. My heart rate dropped repeatedly but Jeri kicked in and I didn't have that horrible crash I am so used to. My legs hurt but I'm calling it a win at this stage. I did manage to do some crafting today, though I am paying for that now painwise. But still it felt good to do something.

(Woo hoo crafting denial for the win, even with the post craft pain hike.)

Not being able to use my left arm sucks. Showering in particular is not fun. Mr Grumpy washed my hair for me the other day. Lets just say it involved more shampoo in my eyes and me spluttering than the romance I remembered from Out of Africa. Not being able to do washing or vacuming whilst good, is frustrating as I have to keep asking for things to be done. I need pjs people, and underwear. Maybe if I streak through the house they'll get the message.

Oh and for all those on FB who wan't me to wear my cape in hospital (thanks Kate), I did. Just for you. I may have been in pain and little over it all, but I made it through. And that my friends, is cape worthy.

Cheers
Michelle and Jeri :)

PS don't forget to enter the Lazybones pj giveaway for my 4th Blog birthday. It closes tomorrow.

So there's this thing called a Pacemaker, and apparently I need one.

(Gotta love the 70's source)

When I was a little kid I used to love watching The Bionic Woman. Jaime Sommers was beautiful, kickarse, and had a great wardrobe. Plus, she got to hang out with The Six Million Dollar Man. What more could you want? Plus, headlines like the ones above, "an army of "Fembots!" ", who wouldn't want to watch a show with such a catchy tag line?

Well it seems I am going to become The Bionic Woman myself, well apart from the whole tennis pro, school teacher, skydiving, secret agent thing. But that's just details. I do hope I get theme music, though.

My dicky ticker is indeed very dicky, or just a dick. I mean, I knew to certain extent. My bradycardia has been getting steadily worse. This past year it has become more frequent and my health has been in a nice neat downward spiral for some time. Equally, my coping skills have been slowly slipping as my body decided to up the ante and become a complete arsehole. And not surprisingly, maintaining a Stepford persona is hard when you are clutching your chest on the floor wondering for the first time if you're actually going to die. 

A strange thing occurs when you are chronically ill with a weird unpredictable illness. You start to hope for positive findings. Not positive as in sunshine, lollipops and rainbow farting unicorns, but positive as in, please find something concrete wrong with me. So often with this disorder you go in for testing and it's a "good" day so the tests come back clear. Symptoms fluctuate day-to-day so trying to catch them in a one off, short test can be difficult. So part of me wondered if the tests my doctor ordered would show anything. Even my cardio said, Murphy's Law says that it will a good day and come up clear. 

But this time I had the clear results I hoped for, and I'm equal parts glad and terrified. My 24hr holter monitor showed clear bradycardia. Not an hour went past without my heart rate dropping to dangerous levels. 80+ times over the 24 hr period. No wonder I've been feeling like death. 

It's also the first time in the 7 years I've seen my cardio, that she was 100% sure about my options. Pacemaker, pacemaker or pacemaker. I do have high risk factors for the procedure due to other issues (because I'm lucky like that), but it's either have the procedure or risk my heart stopping. So really it's a Clayton's choice, the choice you have when you don't have a choice.

In reality I know that getting it done is the right choice. Avoiding things like a hypoxic stroke, or heart attack, and getting blood to my starved organs is all good. Getting rid of this permanent chest and neck pain and feeling my body randomly shutting down are also a positive. But, ARGHHHHHHHHHHHHHHHHHH.....

At this point it's looks like by early July I will be, The Bionic Woman. Mr Grumpy is already calling me Jaime, because sarcasm and humour with a good dose of denial is the only way to go with these things. 

To say I'm a little freaked right now, may be an understatement. I decided last night that I would meditate the crap out of my stress, only to find that my fantastic meditation skills lower my damn heart rate even further. Well played, Universe. Well played.

So make me laugh Internet. Distract me with bright shiny objects and inappropriate humour. Because right now I'm feeling a little vulnerable and scared.

Michelle

Bradycardia: When your heart goes, meh.

(source)

Bradycardia is a fancy word for a slow heart rate. Kind of rolls of the tongue, doesn't it. Sounds like a cool novelist name, The Heart of Meh, written by Brad Y. Cardia. Fantasy is my bet. There'd be swords and dragons, the main anti-hero would be kickarse but constantly foiled by her need to lie down every 5 minutes. Kinda hard to fight a dragon when you're comatosed on the ground. Though maybe she'd use it to play possum and come out fighting after the dragon had discounted the threat. Or maybe the novel would be 3 lines long as the hero suddenly keels over and becomes a dragon chew toy. That sounds more realistic. (I may be watching way too much Game of Thrones.)

Bradycardia is generally defined as a heart rate under 60. For me 50s aren't unusual, and I'm not usually all that symptomatic. A bit tired maybe but not worryingly so. But when I hit the 40s things start to become unpleasant. When those 40s persist or hit the 41-42 mark it becomes really unpleasant. Now I know that for some elite athletes 40s may be their natural resting heart rate. But lets face it I'm hardly an elite athlete. I'm pretty sure an elite athlete's eyelashs could beat me up and leave me whimpering on the ground, freely offering them my lunch money. Low 40s are simply not a fun place to be. I'm pretty sure I've hit less than 40 but I have learnt that my bp cuff wont register a heart under 40, which is kind of a bummer. I would like to know just how low it is dropping.

Bradycardia is getting the best of me at the moment. I've had it off and on over the years (my max hr of 88 bpm after 10mins on the reclining bike used to bemuse the staff, it also made exercising hard) but of late it has taken up residence in my chest and seems intent on staying. Even when getting IV fluids the last few weeks I was having drops into the 40's and 50s much to the consternation of the staff. Increased fluids in my veins should technically help my heart rate, but no. It's a fickle little turd that doesn't like to be told what to do and decided that it wouldn't play the game.

Last week those who follow on FB will know bradycardia hit hard. As in, collapse in the kitchen, scare the bejebus out of both me and my son, hard. I have to be honest and say I haven't felt that bad before. I could feel my body shutting down. I was ice cold and starting to feel confused. That is not a nice place to be and one to which I don't ever wish to return. The level of pain in my heart alone, is something I could do without. It's been a long time since my family has been worried about leaving me home alone. And even longer since I've been worried about being left home alone. That I haven't really picked up since that event is clear to everyone, including me, and that alone is a tad concerning.

The only precursor I can identify for last week's hijinx, 20 minutes of low level physio. And when I say low level I mean a couple of toe points and legs lifts. I did my final assessment which pretty much just confirmed my permanent status of completely knackered. But that's it.  But exertion, in any form, seems to be a trigger for my bradycardia. Every time within 30-40 minutes. Garden for 10 mins, bradycardia. Vacuum the house, bradycardia. A couple of pathetic toe points and leg lifts, bradycardia. I'm sure someone told me exercising was supposed to increase your heart rate. Even going out for coffee with Mr Grumpy and walking around for 10 minutes left me with a weak and thready pulse that went blah........blah........blahhhh. Usually it'll pass within an hour or so, but last week it was a few hours. And since then shorter periods, but more frequently. Fun times.

(source)

A quick look at the research and the treatment options for bradycardia are pretty limited. The top three choices are: 1) Treat the underlying cause. Bwahahaha. After years of extensive testing they still can't pinpoint the cause of my symptoms. 2) Stop all medications that can cause bradycardia. Done. No more metoprolol for me. Which of course means rebound migraines and shakes. But still the bradycardia persists. 3) A pacemaker. This option has come up in past discussions with my cardiologist but it is more of a last resort solution as it can't be undone. Do I want to go down that route? I'm still unsure. Although if what happened last week were to happen again I think I would do it. Plus, peace of mind for both me and the family would be good. Yet more fun discussions to have with my cardio.

So on that note and because I am absolutely knackered again.

Cheers
The elite athlete Michelle :)

The View From my Couch: Winter Sun.

So tired at the moment. Fatigue has come to bite me big time. Thinking, standing, breathing is all so effortful. The idea of washing my hair or even simply holding a conversation is overwhelming. I guess that's what happens when you heart decides to slow down to the 40s. It seems that puts a bit of a cramp in my style. A heart that goes blah......blah......blah is not all that useful on the energy front.

But today was a lovely Winter's day here in Melbourne. Little spots of sunlight falling through the thick tree canopy in our yard. When it's been so dark and dreary those little spots of light are truly beautiful. The season is changing and slowly the plants are awakening. Little blooms sprinkled all around the yard. I don't even know what these are called, but the little bonnets glow when the small shafts of sunlight fall on them. The smell of the Daphne is everywhere on the breeze at the moment making everything just a little easier.

I've always been drawn to forests and the earth. Maybe it's a Taurean thing, but they have always been my place of peace. Even when I meditate I visualise being in a forest. Lying on the ground looking up at the dappled sunlight trickling through the trees above. The smell of the earth and growing things filling my lungs. And so it is with where I live. On the edge of a temperate rainforest, complete with loamy earth and a multitude of ferns and mountain ash. An explosion of vibrant green and birdsong. Life and peace all rolled into one.

Tired or not, sitting in my backyard listening to the magpies warble and seeing those little spots of light and colour revives the spirit. I need to make an effort to sit outside more often. Just to sit in silence and soak in the life force that is beginning to hum in our garden once more. It may not soothe my body but it certainly soothes my soul.

Simple pleasures are desperately needed when life is so complex and overwhelming.

Michelle :)