My Pacemaker Journey – 2 Weeks On and Counting…

It’s been just over 2 weeks since I became a bionic woman. All I can say is Praise God for day 9! Finally a turning point, to feeling more like myself again. When you’ve had days of pain, not much sleep and spontaneous tears (kind of like after you’ve had a baby!), it’s a relief to suddenly feel like “you” again and coping.  My hubby and son headed off to Christchurch for two days, checking out some options for our eldest for next year. We’d had it on the calendar for months and I was so glad they could go. Over that time, my parents and kids were amazing helping out, not to mention two friends who came and watched movies with me on the second day (“I Can Only Imagine” is well worth a watch!).

By Sunday I so wanted to go to church. I’d only missed a week, but I knew it would do my soul good to be there. In hindsight I probably looked a shocker (all I knew was I looked a lot better than the week before!) but I just kept thinking if I can just go there and sit… I’ll feel refreshed and encouraged. So I did just that. I went. I sat. I worshiped (sitting without singing – that would make me breathless). I gently hugged my gorgeous church family whom I love so much and was so thankful in my heart that I was there. It struck me again how every person every week, is facing something different. Coming in from a different place of life, carrying different joys and struggles within their heart. For some, they can come and lift their hands and worship with a smile beaming from their face. For others though, it’s a case that they’ve just managed to drag themselves along, bruised, battered and weary from their week. We live with these tensions in life and I thought, may we always be a place and a church, where people can come as they are, knowing they are welcome, cared for and loved.

Connecting my Pacemaker to the Computer

The next day I was back to the hospital to have my leads checked. They place a wand over your chest which connects your pacemaker to the computer. From there they can programe it, trying out different configurations to see what works best. It was Petes first time seeing me jolt, as the lead pulsated my nerve – I told him he wasn’t allowed to laugh! After a while, they said the doctors had decided to leave it another two weeks before turning the pacemaker on, so I’m in for more waiting. One good thing that’s been happening though, is my pacemaker has been recording information while it’s in this stand by mode. So they could look back and see all the times my heart rate had gone over 100 bpm in the past couple of weeks.  At least they can see what is going on with my heart, day by day.

My Home Monitor

I also have a monitor set up by my bed now, which connects to my pacemaker each night and sends information to the hospital. It’s all done through the cellular network – what an incredible age we live in! I’m not sure what happens when we go camping each year (not much coverage there!)? Hmm… another odd question for me to ask next time I go!

I’ve been back at work this week – slowly easing myself back into things. There are small steps which I’m grateful for. Today I managed to wear a jumper instead of a button up shirt (no longer looking like I’m off McLeods Daughters!) and I can now sleep on my side without too much pain. I’m taking less panadol and I haven’t cried for days (my family will be grateful for that)! Sometimes we just have to ride out the tough moments, trusting that there are good ones coming. And they are! They always are! The sun will rise tomorrow and there is always hope for the future – because there is an incredible God who promises to hold us and be close… for that, I am grateful.

XXX

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My Pacemaker Journey – One Week old Today!

All ready and waiting!

This time a week ago, I was walking into surgery to have my Pacemaker put in. I was nervous (my report describes me as ‘teary’ – that’s a polite way of putting it!) and just wanted to get it over and done with! It’s been a long week, as I’m sure it is for anyone after surgery. You wake each day hoping it will be better than the day before – some days it is – other days not so much. I’ve been thinking about updating my blog on how things are going… but to be honest some days I’ve thought, wow – can’t write down today how I’m feeling!

So, an overview of the past week – the operation went well. I went in about 9.30am and came out about 12.30pm. The medical staff were amazing – friendly, caring and incredibly good at what they do! I woke up from the general anesthetic, feeling my body jolt in time to the sound of my heart beat on the monitor. That’s a strange sensation – not one I’d highly recommend! The third lead (the tricky one they can’t get into 5% of people) was hitting my phrenic nerve, so they had to turn the pacemaker off. I went back to the ward with a huge pressure bandage on, oxygen hooked up and connected to fluids. I counted down the 2 hours until my pressure bandage would come off and was thankful for good meds!

Finally allowed to eat! Ice cream was like heaven on my sore throat from the breathing tube!

The night was long. It always strikes me how odd it is to sleep in a room with strangers – while you’re all feeling at your worst. They were all lovely – but there is only so much snoring, vomiting and coughing you want to hear all night. I saw the Cardiologist the next morning. She was pleased with how it had gone and explained that the pacing was fine when they tested it in the operation, it was only afterwards when they sat me up that it starting pulsing on the nerve. She said they would leave it off for 4 weeks and try turning the pacemaker on again then. If it hadn’t settled down, they would need to look at other ways of getting the third lead into my heart. This wasn’t really the time I wanted to think about going through this all over again – or another procedure. Yes, I may have cried. Again.

They then came to check my leads were working and it was my first experience of being paced. It felt strange –  like a weight pushing down on your chest when you try to breathe. Amazingly she turned on the third lead and after changing some settings, it began to work without the twitch! I couldn’t believe it! Incredible! And I felt more normal! They left me for a few hours to move around a bit and see if it stayed stable. I sat. I stood. I moved. I walked. It was all good! Pete said how much better I was looking. I was being discharged, was sitting there dressed, ready and waiting to go home… when it twitched again! Gutting.

More medical people. More talking. More crying. It had to be turned off again.

The other problem I’d been having was my heart rate going crazy. During the op they had seen my heart rate high at times, then again while being monitored overnight, it was continuing to happen – sometimes while I was sitting doing nothing. The Cardiologist had explained it’s called Tachy-Bradycardia  and they would need to look into how to fix it. It’s probably what’s been making me feel so breathless lately and exhausted. It’s a separate problem to my LBBB and not something the pacemaker will help with. The night before it had reached 160 bpm – by me getting up to go to the bathroom. At the moment when I wanted to leave hospital it was sitting at just over 100 bpm.

Thankfully we got home that afternoon. I felt like I’d run a marathon – not that I’ve ever run one (or at this rate likely to do so)! My heart rate is still not behaving itself – every day it soars, making me breathless and feeling like rubbish. My shoulder still feels like someone has jumped on it and sleep is still challenging. But my scar looks really good and the swelling under my arm (jaw, neck…) and around the pacemaker is going down well. Being one week down the track means I’m allowed to shower finally (before this the water could upset the glue on my scar), that will surely help me feel more human!

So, I’m praying next Monday at my appointment they will be able to turn my pacemaker on with no twitching from the nerve.

I wanted to say a huge thank you to so many people. I know hundreds were praying (how amazing is that?!) and we’ve heard from so many friends and Pastor friends who had their churches praying. I’m humbled. Cause really, it’s just me and I’m very aware people are going through much greater things every day! We have so appreciated it though. Along with the messages, cards, flowers and meals! Every word touches me and means so much (and yes, often makes me cry).

Before going into this, I’d thought a lot about the physical side of things. Especially wondering how big this thing would be in my chest ! But the emotional and mental side is as much of a challenge. The nights can feel long and often your thoughts in the early hours of the morning are not your friend. I had expectations of how this would go – sometimes you have to let those go and just be thankful for where you’re at today. And that you’re alive and breathing.

Good to be home!

Thanks again friends and family. It’s been a journey for us as a family – for Pete and I too. I love each one of you and am looking forward to life returning to more of a normality. Much love…

xxx

Tears, Prayers and Pre-Op

My Pacemaker

It’s been a funny week, with highs and lows. We shared with church last Sunday about my Pacemaker op coming up. When I say “we” – I mean I began to share, then started crying… so my gorgeous hubby took over for me. Not one of my finest moments! I had been quite good about the whole op thing until then, but voicing something brings another whole level to it. We decided many years ago to treat our church as family, sharing the mountain top experiences together as well as the valleys. It’s nicer sharing the mountain top experiences though! But, I’ve learnt over the years that as we let down our walls, it encourages others to do the same. It helps us all know that when we struggle – we’re not alone, which brings great encouragement in the darker times of life. After “we” shared, our lovely church family gathered around me and prayed. It’s moments like those you treasure and are eternally grateful for.

Monday was Anaesthetist day. The best thing about this, was visiting the hospital where the operation will take place. It’s not the one we are zoned for, but it’s the one that does my particular type of Pacemaker operation. It struck me again how huge this hospital is and that I don’t have the best sense of direction! By the time we got there I was exhausted from walking. I told the Anaesthetist this and she asked how many flights I’d walked? None! We took the lifts! It’s just the state of where my heart is at, walking is tiring. Hopefully not for much longer.

My new Overnight Bag with goodies inside from Mums Time. So precious!

I was back into work for a few days, where I was blessed with a gorgeous pressie from the Mums group I lead. That was definitely a highlight of my week! I was blown away and yes… there may have been more tears. Inside the overnight bag, were all sorts of goodies – including a bell I can ring for a cup of tea! How awesome is that?!

Thursday was Pre-Op day back at the hospital. Pete was in Whanganui for the day, so my lovely parents came to keep me company. As I was there for hours I greatly appreciated it! After an ECG (I’m becoming an expert at those – “sure, go ahead and stick those leads everywhere!”) and chest xray, I was off to meet with a Cardiologist and then nurse. They were both lovely. I brought out my list of questions and they patiently answered them all and explained things in great detail to my parents. I was thankful for amazing and kind medical staff – it really does make a difference!

Some things I learnt:

  1. My pacemaker is bigger than I thought it would be!
  2. I’m thankful I don’t have a defibrillator in it – as those ones are even bigger!
  3. I’ll have to stay away from Induction Cooktops (sorry Mum, no cooking for me at your house!), Arc Welding (darn it!) and try to refrain from hugging my microwave!
  4. I’ll carry a medical card which explains I have a pacemaker, so people at airport security are kind to me.
  5. I’ll need a Medic-Alert bracelet saying I have a pacemaker (surely there are some half decent looking ones around?).
  6. As I won’t be able to lift my left arm for 1 month, the doctor suggested I sleep with my arm inside my PJ top, so I don’t lift it by accident in my sleep (prevents my leads from dislodging in my heart).
  7. Lots of other medical things, many of which you don’t really want to dwell on or think about!
Yeah… that’s not as small as I’d like it to be!

So, on Tuesday I will arrive at the hospital for 7am, put on my lovely gown and wait for my op! Fun times ahead! Watch this space…

XXX

Not Long Now…

I never thought I’d feel relieved to get a date for an operation! However, after waiting weeks for the new date for my CRT Pacemaker op, that’s the overriding feeling that struck me. Relief that the date is booked in. Relief that my days of feeling breathless might come to an end. Relief that I will soon get through eating my dinner without feeling exhausted and out of breath! Crazy how important it is to have our hearts functioning right!

So in less than two weeks, on June 5th, I’ll be heading into Hospital for this device to be fitted. Often it is done under a local anesthetic, but the thought of being awake for hours, lying completely still, as they prod and poke leads into my heart… that’s all a bit much for me! So it will be done under a general anesthetic, so I can disappear off into dream land, instead of me anxiously freaking out on the operating table! All going well I’ll be home the next day.

The last Doctor I saw who told me I’d be getting the Pacemaker, went on to say that there’s lots of information online I can read (after we asked him about recovery time etc). He’s right. There is a lot of information online. Sometimes however you wish you could unsee what you’ve seen! Let’s just say not everyone’s scars from a Pacemaker are pretty and sometimes the lump sitting out of their chests are huge!

But on the whole, I’m extremely grateful that I can learn a lot beforehand and also hear from other people about their experiences. I’m a person who likes to be prepared and know what I’m about to walk into – so hearing peoples tips and recommendations definitely help you feel a bit better about what lies ahead.

Now, I’m sure all my medical friends are thinking… this is JUST a pacemaker operation Annika! Yeah… I know. It’s not open heart surgery and I’ll be fine! I think though, as much as it getting your head around the physical side of things (seriously, could they not make those pacemakers smaller?!), it’s also about mentally and emotionally being prepared for having this device fitted to make your heart work properly. That every 8-12 years the battery will need replacing (maybe less in my case as it will be pacing my heart 100% of the time) and then every so many years, the leads will need to be replaced (that’s a bit more of a major). So once you’re on this journey, there’s no getting off it. But I’ve decided gratefulness must override any fears or anxiousness you feel about the whole thing.

So, I may blog throughout this journey. Obviously, you don’t have to tune in if you don’t want to! But I know that as I’ve read the odd blog post from others who have walked through this, I’ve SO appreciated their insights and what helped them along the way.

Perhaps this might help someone else in the future who finds themselves walking a similar journey.

Lastly, I want to say a huge thanks for your prayers! I so appreciate each and every one given on my behalf! I’ll finish with this verse which has been popping up in front of me through different avenues recently. I love it when that happens!

XXX

Pacemaker Time Soon…

Ever taken a trip somewhere, when you thought you knew where you were headed, only to end up somewhere else? You were focused, organised and had everything in order, but suddenly something else jumps up in front of you? Unexpected life events can be frustrating, unnerving and sometimes a bit scary – but one thing I’m learning is, even when it’s unexpected for us – it’s not for God.

I’d started my new job. With passion and excitement! But some weeks back, I got a call I wasn’t expecting. I guess in some ways I’d been waiting for months for it – but in many ways the call I got was a shock. It was someone from the hospital calling to book me in for a pacemaker operation. “We have an opening next Tuesday, would that suit?” “Ahh… umm… well… err…” I stumbled out some kind of shocked reply about how I didn’t even know this was happening and she said “Well it is!” I soon confirmed that no, next week wouldn’t work (I had birthday parties for my kids, a womens event to run, my sons school ball was happening, plus many more things in May!) and we worked out a date for the end of June.

The following week I had my Cardiology appointment, where they told me they’d decided to put a pacemaker in. “Ah, yeah… I know. I got a call… last week!” Slightly awkward. At least it made for a quick appointment!

It all felt a bit surreal. I know I’ve been walking this journey for about 18 months, but I’d managed to convince myself that I was fine and they’d keep putting this off longer. But no, the date is booked for my “cardiac resynchronization therapy” pacemaker to go in. Once in, it will send electrical impulses to the lower chambers of my heart to help them beat together (they’re out of sync at the moment), which will help the blood and oxygen pump better around my body. Fun times!

As I was trying to get my head around it all, a friend sent me a message and said “This isn’t a surprise to God.” Again last week, another friend messaged me the same words. There is great security, when you know that the One who looks after the days of your life, isn’t shocked that this happening. He’s not sitting on His throne thinking, “Wow, I didn’t see this one coming!” No, this isn’t a shock for Him at all.

He also wasn’t taken by surprise when just over two weeks ago, I had a rough moment. I’d begun noticing, that carrying washing up or down the stairs was leaving me breathless (along with vacuuming and other boring household chores). This day however, after a trip downstairs and back up, I was left struggling for breath for half an hour. Pain was ripping through my chest (as it does a bit these days) and it took a lot of begging on my behalf, to stop my hubby from rushing me to the doctors. I knew I was in a bad way. One glance in the mirror at my colour told me that. I also knew that I could end up in hospital. I kept saying to him “I’ve got an event to run on Sunday night! Don’t take me!” I think we both realised in that moment two things. That a) I’m quite stubborn (to be fair he already knew that…) and b) I’d rather collapse than let people down! Probably not a good combination when your heart isn’t working as it should!

After a lot of rest (suddenly walking was tiring me out) and somehow by the grace of God, we had a great Womens Meeting at church. The following morning I went to see my doctor. After an ECG and a call to my Cardiologist, they decided I now need the operation brought forward. For once, I agreed. The realisation that I can’t go on like this had hit.

So, I’m carrying on doing what I can, while waiting for a new date for the op. The upside to feeling like this, is I’ve realised I need this device! I’ve finally accepted that this low ejection fraction I have, meaning blood isn’t pumping around my body well, is effecting me in terrible ways.

I’m not meant to lift heavy things, have any stress in my life and avoid stairs as much as possible! Mentally I feel okay – I have ideas of what I want to do and I get up to do them. Then my body doesn’t cooperate and I’m reminded my heart isn’t doing so great right now. I’m realising some harsh realities about myself… like I have more pride than I’d care to admit. Telling people I’m not so good is horrible. Accepting help is humbling. Admitting I’m struggling is tough. But I know it’s only for a time and then I’ll be like the energizer bunny with my new battery powered device! Well, here’s hoping!

In the mean time… I wait. Again. Cause patience is still being etched into my character, hour by hour, day by day. Each morning I pray that I’ll get the call today, as the sooner I have the op, the sooner I can get back into things at full capacity again! But above it all there is peace. Because as my friends have reminded me, none of this is a surprise for God. He knows. He sees. And He’s in control.

A phone call soon would be nice though Lord. 😉

Beautiful Baby Blanket

After I finished my last blanket, I decided to crochet a blanket for one of my gorgeous friends! We’ve been friends for over 20 years and it’s been a blessing doing life together through many changing seasons. She has always held a special place in my heart and I wanted to make something special for her precious baby which was born late last year. I thought I had done well making my last blanket in 5 weeks, but this one only took a week (the fact that I wanted to give it to her asap after baby was born was a great motivation too)! I’m getting faster, although this was obviously a lot smaller than a single bed size!

My biggest achievement, was that I learnt to read a pattern! Yes, shock horror, I’d never read a crochet pattern before! Previously I just memorized what stitches I needed to do and how many of each and do it! I would look at patterns and wonder what on earth all the letters meant!

So, my Mum dug out some of her old baby blanket patterns and she patiently taught me how to understand this one – and I was away! The world is my oyster now that I finally understand how to read a pattern!

It was also my first time doing a border around the edge. I’d admired how lovely they looked – but also thought they looked hard! I was pleasantly surprised! It was very easy to do and was so satisfying creating this shell edging!

I enjoyed doing something other than a chevron pattern and also making something more delicate. It was also lovely to be able to give something to my precious friend, which I had lovingly and prayerfully made. XXX

Treadmills, Waiting Rooms and Patience for the Journey

I’ve been thinking lately, how it’s been over a year since I last updated my heart situation. Mainly because I kept thinking I’ll write once something happens, but I’ve realised that may take a while, so now seems like a good time to put fingers on keys!

When I wrote “Time to Take Heart” I’d been told I needed a pacemaker. I was living in a slight daze, trying to get my head around what that would mean and looking up pictures of Pacemaker scars (I’d recommend you don’t do that…). I’m always one for research and I wanted to know the ins and outs of what would happen and how it would all work. That was December 2016. In early 2017 I met a different Cardiologist, who felt it would be good if we waited 6 months, to see how my Ejection Fraction went (that’s the measurement of the percentage of blood leaving your heart each time it contracts). Mine was on the low side, so it meant my blood wasn’t pumping around my body as it should. If it went down to a particular percentage, then they would put the pacemaker in at that point. We chatted about what this meant and the pros and cons. The decision was made to wait.

Honestly, it felt like I was on a roller coaster ride – one minute I was told I would be getting a pacemaker, the next I was told we’d wait. As I’ve never really cared for roller coasters, it wasn’t my idea of fun! But when I walked out of his office that day, I truly felt like I’d been given my life back! I’m not sure why. Perhaps it was the feeling that with the op being put off, all my concerns could be shelved for a while. I knew that except for a miracle, my Ejection Fraction would decrease and I would need a pacemaker at some point. But waiting was giving me a reprieve (and time for lots of prayers to be prayed!). It was about August when I was called up for my next Echo. It seemed to go okay. There was only one unhelpful moment when I overheard the woman say “You don’t see that very often!” I tried to tell myself perhaps she was new…

A couple of months later, at the end of 2017, we had another meeting with my Cardiologist (the one who wanted to wait putting in the pacemaker earlier that year). The night before I dutifully read up on what was up with my heart again (I’m always concerned they will start talking in large technical words). To be honest, after reading up on things, I generally decide it’s nicer living in a world of naivety! Anyway, as my Cardiologist looked at my results and we talked about my symptoms, he felt that perhaps it was time to put the Pacemaker in. We were back to feeling stunned.

Waiting for my Treadmill Test (thankfully Pete wasn’t allowed in with the camera. So no pics of me looking gorgeous in my gown hooked up to machines…)

So I was back on the roller coaster again. Buckled up and ready to go! Then, after he’d talked to the team, they decided they wanted me to do a treadmill test first, to see how my heart responded to exercise. That would determine whether I get the pacemaker, or not. Now firstly, the words “Annika” and exercise don’t normally go together in the same sentence. Honestly, I think I was more concerned about this test, than the Echos, MRIs, CTs etc. Somehow, in a strange way, you feel judged. So, two weeks ago (Jan 2018) I had my treadmill test. Firstly, walking on a treadmill was a first for me. It is a strange experience having it go faster and faster every 3 minutes, while being hooked up to computers with wires stuck all over your chest and sides. I lasted 8 minutes – I feared if it kicked over to the next level at 9 minutes, my heart might fizzle or my legs might fly off! But at least I’d made it that long!

So now… I wait.

Which has really been a major part of this story which I can’t really put into words. But waiting is something you have to get used to when you have medical issues going on. Things don’t tend to happen fast (although I’m told if I pass out I’ll have pacemaker pretty pronto!). So you learn incredible patience. A year ago, I would be checking the letterbox a few times a day, waiting for a letter with my results. Now I know it’s most likely going to take weeks (sometimes months) to arrive, so you get good with carrying on with life.

This past year, I’ve learnt to not concentrate on the heart stuff. Which is why I think I neglected to update everyone on where things were at. I honestly switched out and decided to carry on going for it with life! This year I intend to do the same. It truly is onwards and upwards! I feel like I have more vision and plans for things to do this year than I’ve ever had in my life – so I figure God will work out the heart things in between. I would say though, that this time around being told I might have a pacemaker fitted, I’ve felt incredible peace. I know He is in all of this and I’m looking to put a tick in that box, so I can just carry on with what is before me.

So, I should know in the next few weeks what is happening. But who knows? Like I said, patience is this beautiful thing which gets built into your character during these times! So, I’ll keep walking forward, being grateful for every day!

I’ll let you know if and when something happens! Thanks for your many words of love, prayers and support friends. It truly means a lot.

XXX