Death couldn’t separate us, neither will life

Guest post from Sacha Jenkyn, which was originally published on her blog in October 2015, just 2 months after her husbands SCA. Now republished on the 2nd anniversary of the event.

On the 23rd of August this year my husband went into cardiac arrest.  We had fallen asleep tired and content after a long day filled with activities, a Parkrun in the morning for my husband while I watched the kids and did the laundry, a nice meal in Colchester with my eldest son , some handiwork and repairs in his house, a weekly food shopping at the supermarket, some gardening for my husband and some ironing for me, and last but not least, the preparations for the next day Skyride, a family cycle event.

I was awoken around 2.30am by a rasp breathing which I first attributed to my spouse having a nightmare. I gently shook his arm with some comforting words , but this time it didn’t do the trick. I realised that the breathing was louder than usual – and my instinct took over. I turned on the light. My spouse had his eyes open and was laying on his side, motionless. It was clear that he was not seeing me. I didn’t know if he was having a stroke or a heart attack, but I just knew that something was very very wrong.

I asked him if he could see me, no answer. I asked him if he could hear me, he groaned. I don’t remember the next questions I asked while I was jumping out of bed and reaching for the phone, dialling 999 with shaking hands, but I remember the last one, “Do you want me to call an ambulance?”. He groaned. That would be the last time he would signal he was with me.

The operator on the phone was seemingly painfully slow. She was asking all the standard questions, name, address, age, what seemed to be the problem. I was delivering the information quickly, as calmly as I could, knowing that each second was counting, noticing that each of my husband’s breath was getting scarcer. I told her that and I was requested to say “Now!” each time he would inhale. I did as I was told. The frustrated operator, thinking that I had misunderstood her instructions, shouted at me for not doing it. I replied sharply that I had warned her- my husband was not breathing. By the way, now. “Again!”, she exhorted me. But he was not breathing anymore. Just like that. Silence.

And me. Fear. Blind, sheer panic. Thoughts that I couldn’t control, don’t leave me, tell me I am having a nightmare, I will wake up in a minute, this can’t be real. Then it struck me, I couldn’t let him go. I had to get a hold on myself, so I asked: “What should I do?”. “You will have to do CPR”, replied the operator.

I had to run and wake up my third son.  My spouse is 6’4″ (196cm) and weighted almost a hundred kilos. I won’t tell you how much I weigh, but it is close to half that and I measure 5’4. I needed help. So I opened my son’s bedroom door, shouted something like “I need your help, now!” and we proceeded to put my man on the floor. Then I started to open the curtains. “Couldn’t you do that in the morning?” wondered my son matter-of-factly. “Do it yourself then, and look out for the ambulance” I ordered while I dropped on my knees, searching with the palm of my hand the little depression on the thorax where I had to apply pressure. And I started pumping.

One of the questions I heard the most since then is:”How did you know what to do?” (or it’s corollary, “I would never been able to do that in a million year”). Like you, I saw it in the movies. Maybe unlike you, I had seen the British Heart Foundation with Vinnie Jones, showing what to do. I also had done years ago a course which in Switzerland is compulsory when you want to pass your driving license, called the Good Samaritan course, which teaches you how to save a life. I started singing ‘Staying alive, staying alive, oh oh oh oh, staying alive…’ while the operator, now on loudspeaker, was trying to give me the rhythm with ‘1,2,3,4…’.

All the while I kept thinking. I was two people, maybe three, maybe four, all throughout. I was the person pumping this unresponsive heart, praying she was doing the right thing. I was the instructor telling my son to open the door to the paramedics he saw coming through the window. I was the wife begging her husband not to do this, not to give up, demanding he’d stay with her, that he’d wake up. I stopped to take his pulse, on his wrist, on his neck, on his groin. Nothing. I started pumping again.

What if he had been without oxygen and I’d ‘wake ‘ him up, and he’d be alive, but brain-damaged? What if I’d stopped pumping, but somehow he’d breathe again, but would remain brain damaged because I hadn’t fought hard enough? What if it was all for nothing? I never stopped pumping.

My husband took a deep breath, opened his eyes. His whole body raised while he was inhaling, as if he had been drowning and was now back to the surface. Then his eyes closed again and he went back into this deep sleep, this strange absence from consciousness. I kept pumping. “I know you can hear me, don’t let me down, wake up for me, wake up for the children, wake up for your girls”.

A paramedic entered the room, followed by my son. My eldest daughter had just barged in, sobbing. “Am I doing this right?” I asked. “You’re doing this better than I would” said the paramedic. But after a few minutes, I was faltering. He had already open the defibrillator so he dropped next to me and started measuring vital signs. I was asked to open his bag, extract and unpack the ventilator. I had my back turned when the defibrillator was used. The noise was like in the movies, but the furniture on the floor seemed to jump in the air. By then my daughter was screaming. I told my son to take her in another room and stay with her. And suddenly the bedroom filled up with paramedics, men, women, and I got out of the way, answering questions while getting dressed, fetching medications my spouse had been taking, trying to help, feeling helpless, useless, abjectly redundant.

I don’t remember if the ventilator was making any noise, but it was working. The stretcher was built, the furniture was pushed, material was gathered. I was asked if I were able to come to the hospital. Would I be driving? Should I call someone? I was answering calmly, I was looking in control, I was melting inside, falling into pieces. My head was completely divorced from my heart, one formulating answers, planning ahead, getting my handbag, putting the sheets in the washing machine, checking on my youngest daughter still blissfully asleep and unaware that her world had changed forever, handing instructions for the next hours to my son, even finally getting change for the hospital parking before getting behind the wheel and driving away.

It was by then almost 4am I think. The night was dark, the temperature warm, the streets looked like decors on a stage. Could I drive? I forced myself to stay within the speed limit. My thoughts were erratic. What would I find at the hospital? Where would he be? Still among the livings or would he have crossed to the land of our unbelievable sorrow? If he had gone, what would I tell the kids? What would I do without him? What sense did all this have? I was trying to breathe, I was trying not to cry. One step at a time, you don’t know anything yet, keep your head, you’ll fall into pieces later, he needs you.

I will spare you the next hours and the next days of a very long parenthesis in our life.  My husband was sedated and placed in the critical care unit of our local hospital. The team was sympathetic and I spent many many hours crying and trying to persuade them that this man was worth saving. Romeo and Juliet had nothing on us, I assured them, we were soulmates. This man was the kindest, cleverest, most worthy human being on earth. He was the most helpful, intelligent, useful, charming soul one would ever encounter. I wanted all of them to love him as much as I did. I was warned multiple times that his chances of survival were less than slim, even non-existent. They would try to stabilise him but they didn’t know how long he had remained without oxygen, and they didn’t know what had had caused his cardiac arrest.  Everybody was friendly, comforting but not reassuring. Every words spoken was wrapped in caution, almost ambiguity, slowly and carefully delivered.

I had to call and contact family and friends.  Deliver the meagre news I had. How do you announce to a father and a mother that their son has died in the night, and has been brought back from the dead but you don’t know if he will stay put? How do you tell your kids that their father is in no man’s land? What do you do with yourself, with your thoughts, with your emotions when they are too scary to consider, too big for your courage, too painful to keep breathing?

It took me a few hours before I came to realise that my husband seemed to be reacting to my voice. I would order him to breathe before the ventilator would kick in and when his heart rate was too low. I would beg him to keep his arms down in order not to break the needles when he would start moving. I would hold his hands when he was shivering under his ice vest. I would kiss his face and his hands when I had no more words to speak.

Then it took me a few more hours to convince the nurses and the doctors that somehow my voice was making it to my husband’s mind. But he suddenly woke up, looking straight at me. I asked him: “Do you see me?” and he nodded once. I said: “Do you know who I am?” and he tapped his chest, giving me our signal for ‘I love you’. The nurse grabbed a torch and shoved it in his eyes as he was already laying back. He started calling him by name, lifting his eyelid, and my husband’s pupil started fighting the light.

Half a day later he was awake and smiling. Like a child he was repeating over and over the same questions: Where was he? What had happened? Was is a dream, it looked like a dream…Keeping him down, trying to stop him ripping his tubes out (he had oh so many), talking him out of running away was a hard job. But I was so happy, so happy despite the disquietude of the never ending repetitive questions, despite the disconcerting reactions( “What happened?” -“You had a cardiac arrest” -“Cooool…”).

Then came the hard part. Because if you think that the worst was behind us, you can think again.

The diagnostic was simple. There was none. My husband, who was very fit and healthy, had had a cardiac arrest for no apparent reason, at the tender age of 38. As we didn’t have a cause, this meant that it could happen again anytime. So a defibrillator had to be installed in his chest. The wait lasted only a bit more than a week, but the back-and-forth visits to the ward seemed to last months. The staff on the new ward was less friendly, schedules were more strict. Our kids were reacting in different manners, some pretending to be fine, some telling me they were not, some being downright aggressive and traumatised. We were trying to talk it over and I was doing my best to keep a semblance of family life and routine. Then the operation took place; an ICD (Implantable cardioverter defibrillator) was fitted in another hospital (Papworth, 70 miles away). And finally, after two weeks of travelling, hospital visits, errands (my spouse hated hospital food) and diverse occupations generated by housework, everyday life took over.
Except that it didn’t.

We had had many friends, family and acquaintances helping and visiting at first. I kept our time private as long as my husband was in hospital, diverting helpers and visitors to him while I was doing my best to reorganize my home and get the kids ready for the school new term start – one of my sons was actually moving out and had very poor organisational skills- while juggling with the most unpredictable discussions about life, health issues and whatever it was we were going through. We had tears, mood swings, but also laughs. We watched a lot of movies (hospital visits ended at 7pm) and I knitted a lot of socks. Cuddles at bedtime became a long ritual for the youngest.

As long as my husband had been in hospital nurses and doctors spoke to me and involved me in processes and discussions. I was very happy with that until I came to understand that I was supposed to become my husband’s carer. I was expected to stay with him non-stop until his life would resume to a semblance of normality, but also I was now responsible for his wellbeing, for the strict following of doctors orders, and also in charge for the rest of our household as it was becoming more and more obvious that he couldn’t be expected to participate in any household chores or driving in the near future. I didn’t know what to think about this, but it didn’t take me long to figure out that from now on, I would feel inadequate.

My husband’s needs and demands were of course a priority. Helping him to wash, get dressed, were little things meant to pass quickly. I did those tasks with almost pleasure because it was so good to feel his skin under my fingers, to breathe his smell every morning.  He was back- that was all that mattered. However my life became  sketchy and erratic. His short-term memory was still unreliable. We would end up with guests I didn’t know were coming, events taking place without forewarning. He would forget what doctors and nurses had said and would become upset at the idea of his own limitations. He was angry and frustrated that he was not allowed to go running (while he could barely stand up and walk a mile without going to sleep for the rest of the afternoon). I had to plan every event, weekly shopping, school runs, making sure someone could come and stay with him while I’d be out. I became annoyed with the stewardship and had to ask him to manage his own activities and visitors as I was already overwhelmed with the maintenance of the house and the organisation of my son’s move out , the packing of boxes, and the trips to Ikea to refurbish his new place. I stubbornly refused to postpone some of the plans we had had before his cardiac arrest. I repainted the guests room with the help of friends and family, then redecorated entirely the new vacant room in the house. I was advised to postpone all that and wait for calmer times. But I knew better, there wouldn’t be calmer times anytime soon.

My husband’s first alert was a blood clot in his arm. He complained about it for a while, not listening to my recommendation to call a doctor. We ended up with an ambulance at the door and new paramedics to meet. When they took him away, I cried uncontrollably for an hour. I was so scared that things would kick in, so frightened by the way it happens so quickly, without much, or any, warning. My spouse kept joking all throughout, and it slowly downed on me that something unexpected was occurring.

So far my husband has been, since I met him 14 years ago, my everything. We have shared our lives with as little absences as we could, and we talk about our inner thoughts, from the innocuous and banal to the crazy, funny and ugly, without hesitation. The word ‘soulmate’ seemed insufficient to describe our relationship: we were one. Most of the time I knew what he thought, and more often than not he could have said the same about me. We shared most of our values, and despite very different tastes in music, films and hobbies, our desire to involve the other into our personal world never faded.

But now came the irony. I felt cheated. My husband’s cardiac arrest involved both of us, but it actually divided us. One of us had remained sitting on the fence, and we were not sure who it was. He had no recollection of what had happened. For all it was worth, he had gone to bed one night and woken up three days later. He was feeling punished for something he felt had happened to someone else. And he was growing more and more frustrated and angry to suffer the consequences, feeling weak, exhausted, vulnerable. To be honest, he had always been active, curious, energetic and enthusiastic. Now he spent most of his time sleeping, and when he was awake, tired. Patience is not his primary virtue. As for me, and my children, the story was different. We had seen him, to put it bluntly like his GP did, dead in front of us. The violence and the suddenness of the event, the roller coaster of our emotions the following days, the soldiering on and the incertitude that had led our lives since then was just a huge trauma that none of us had yet overcome. Seeing my husband complain about his physical inability to run for the moment looked to me like a very cheap price to pay . His progress in a month had been nothing short of miraculous. Doctors and statistics had been clear: his chances of survival had been less than 1%. Better still, he had regained all his faculties, or not far from it. I felt cheated. We were still reeling from the shock, and he was complaining he couldn’t run. It felt like we were in two parallel universes. It was still me, it was still him and the love was still there. But somehow we didn’t understood each other. We had been in the same place, at the same time. But how we had lived this had been on the most opposite scale of different.

It is very difficult to see a loved one struggle, and not to be able to help him, not because you don’t understand, but because your perspective is very dissimilar. Truth is, I died before, a long time ago, on an operating table. I woke up with a broken rib cage, a doctor who was insulting me because I had died on him (his words) and anomic aphasia (for which I had to do years of speech therapy). But I clearly remember the bemused and puzzled feelings I had confronted to the reaction of people around me. I had no clue about their sentiments, no grasp of the potential hell I had put them in. It all sounded like a dream, a joke or a fantasy. But it took years before I could live normally, and curiously I felt down and sorry for myself for several months afterwards as if I had lost some sense of purpose. Death can happen to you, just like that, without you even realising that it is mowing you down. What is it all about then?

Luckily my husband is a positive man. He not only went back to work within two weeks of having his ICD fitted, but he started helping to organise a charity run for the British Heart Foundation. He began to cook from time to time and is now able to walk up to 4 miles a day. His tests have shown so far that his fitness levels are above what is expected of him, and it is probable he will run again soon, although maybe not to his previous extent.

I live every day one by one. I am not sure I am ready for all the surprises that will come my way, but I intend to go forward. I still don’t sleep much at nights, and I don’t expect that I will in the near future. All I hope is that either things will improve or that I will get used to it. Being suspended in time is a strange feeling because it seems to take all control out of your life. But time, as they say, is of the essence, because you never know how much of it you have.

Bus Pass

Guest post by Fiona

I subscribe to BHF Heartmatters magazine and there are some really encouraging and helpful articles this month.  There is an article about preparing for a holiday and two life stories of people who had overcome their fears and lack of confidence after their heart illness, it’s certainly something I can relate to.

I have an ICD and it has had to shock me a number of times.  Each time I just “hit the deck” so unfortunately, I get a two-year loss of licence.  I applied for an English National Concessionary Bus Pass and it has been a real confidence booster.

I was using the bus and paying and I found it very stressful if I was not sure where I needed to get off.  With my pass, I don’t have to say anything and I don’t get stressed because no one knows if I miss my stop.  It sounds crazy I know, but my confidence has grown because I feel like I look like I know what I’m doing, even when I don’t. I get around everywhere now using my pass and a bus timetable app. It’s all free and I am in control.

There are plenty of bus app’s to help you plan your journey

The application is very straightforward. I applied under section G.  Persons who if they applied, would have their application for a driving licence refused on the grounds of medical fitness.  My GP had to complete a section and you need a passport style photo. You can even ask for a companion pass if you need someone to travel with you.

Going on holiday

Guest post by Imogen, SCA survivor and travel industry professional

I’ve always been someone who loves travelling and going on holiday so after my sudden cardiac arrest I was so worried that I wouldn’t be able to do these things again.

Luckily it hasn’t actually affected any holidays that I have taken since/plan on taking.  However, I haven’t been diagnosed with a heart condition since my SCA and my ICD causes me no trouble so I’ve never had to take anything major into consideration.

If you do have a heart condition you can still go on holiday, but there are certain things to be cautious of.

  • Looking at staying in accommodation that is easy to get to and close to all amenities
  • If you are still recovering take it easy with a relaxing break and as you get fitter and more confident you can go on more active holidays
  • Always ensure when you go away you take enough medication for the WHOLE trip and potentially more. Write down what you take and how much of it in case you need to get more.
  • Make sure that when you are flying you keep as much medication in your hand luggage because if your case goes missing (which if it does – you might be without it for a couple of days) you will have enough on you.
  • Because your medication will be in your hand luggage, you should always take your GP prescription and a doctor’s note.
  • Also make sure to take your ICD identification card as they will need to search you if they only have the old body scanners. I forgot mine once and they let me go through because they could quite clearly see I have a scar and a raised lump where my ICD is. However, I make a conscious effort to take it each time now as I can’t even think about being turned away and missing my holiday!

Flying

  • If it’s your first holiday after your SCA I would always double check with your GP or Cardiologist to see if it is ok for you to travel.
  • If you get the go ahead, I would also ring the airline you are flying with and speak with their special assistance team to see if you can get any help at the airport with any bags or wheelchair assistance if you struggle walking long distance. You can also see if you’re able to get oxygen onboard if needed.
  • If you’re ever nervous about flying, just remember that the cabin crew’s main purpose onboard is passenger safety so they will all be specially trained to deal with all situations such as administering CPR, using a defibrillator, delivering a baby and much more.
  • If you need to take medications that are liquids, creams or gels over 100ml in your hand luggage, then you’ll need a letter from your doctor and approval from the airline before you travel.
  • If you are flying through times zones, it may be difficult to keep to your pattern of taking your medications. Your GP or Practice Nurse will be able to advise you on how best to deal with this.

Airport Security

If you have an ICD  or pacemaker you should take your device identification/card with you and inform the airport staff that you have a device inserted. If you are asked to pass through the security system, walk through at a normal pace and don’t linger.

Most modern implanted devices are well shielded against outside interference and so any problems are very unlikely, although the metal casing may trigger the security alarm.  If a hand-held metal detector is used, it should not be placed directly over your device.

Potential destination climates

If you do have a heart condition, it is advised to avoid going to countries where there are extreme temperatures, whether it’s very hot or very cold, as this can put an added strain on your heart. Angina is made worse by cold weather, but it can also be exacerbated in very hot weather.

If you do go to a hot destination, keep hydrated throughout the day and try to sit in the shade between 11am and 3pm, when the sun’s rays are at their most powerful.

Holiday Activities

After your SCA all you want to do is try and get back to normal especially if you have a passion for sports. While many patients go back to their favourite activities after a full recovery, of course; there are activities that cause concern.

Most holiday activities will be fine to take part in and will not interfere with your ICD device if you have one, but do speak with your doctor beforehand if you plan on doing something extreme. This can be anything from skiing, water sports or intense exercise/hiking. You always need to be careful with any contact sports as you don’t want to knock your ICD.

Also remember that if you do want to do any of these extreme activities to ensure it’s noted down on your travel insurance.