Living with an implantable cardioverter defibrillator (ICD) and an undiagnosed condition

This story comes from two people – me, Anna (aged 17), a.k.a. “the girlfriend” and Barry (aged 23), a.k.a. “the mystery.” Its a long story, but perhaps may give hope to those who are also undiagnosed just like Barry.

This story begins on June 1st, 2007 – it was a weird day. For some reason I (Anna) was staying home from College and my mum was staying home from work.

This didn’t stop my boyfriend Barry from going to work at Pizza Hut. At the time I was playing our new Playstation 3 – Need for Speed Carbon, a racing game – when he said at about 12pm that it was time for him to go to work. We exchanged our usual hug and kiss and told each other that we loved the other. He walked out of the room, I heard his car pull out and he went to work.

The Call
At about 5pm, I looked at my watch for no reason and thought to myself, “He’ll be home in about 3 hours!” (his shift was 12-8pm). This meant I could talk with him for a while and cuddle before it was 10 o’clock, which was usually lights out – but this was a Friday, so it didn’t really matter. About 5-10 minutes after looking at my watch, my mum is running up the stairs with the phone in her hand. She’s looking desperately at me and passes it over saying, “She’s right here.” I casually said, “Hello” thinking that it might be my College tutor calling me.

Instead I was greeted with, “Hello, this is so-and-so from Walsgrave Hospital. I’m calling you about Barry Hooton.” I didn’t know what to think, I thought it may just have been a burn or something – what could possibly go wrong at Pizza Hut, right? And it couldn’t have been a crash in his car because he’s been working there since 12. Then I began to become confused as the nurse said to me, “You see, he’s ‘very poorly’. Do you have his parents number?” I said yes, and I gave her their number as I was put as his next of kin. Then she began to say, “Yes, he’s in ‘critical condition’.” This was when I stopped her and said, “Okay, is he ‘very poorly’ or in ‘critical condition’.” To me, there was a massive gap. It was confirmed he was in ‘critical’. So then my mum was frantic, just knowing she had to get me and herself to the hospital – we jumped in the car and drove.

On the Way out the Door
The next mode of action was I called his brother Paul to let him know, because I didn’t know if he had been told yet. His parents were already being called so I knew I didn’t have to worry about that. Still, we had no idea what had happened yet – they can’t tell you anything over the phone. So, on our way to the hospital I call Pizza Hut to try and find out what had happened. To my surprise the ambulance crew told them not to call me. The Area Manager had ironically just popped in to see how things were doing and he picked up the phone. He walked in as all of this just happened with Barry, and I was told that Barry had collapsed in the kitchen for no reason, while cleaning pots for the night shift to help out.

However, he had stopped breathing and his heart had stopped, and Caroline – one of the Managers – had given him CPR before the ambulance took him away. Later, we found out that Caroline was giving him CPR for about 4-5 minutes before the Ambulance came, and after that, it was another 20 minutes before they resuscitated him. In all, he was technically dead for 24-25 minutes. He had to be shocked 6 times before he returned to a semi-stable state.

A&E
Finally, we arrived at the hospital. I went into A&E with my mum, and had to wait in one of those awful off-side cubicles where they put people who are crying so that they can control the atmosphere. It was the longest wait ever; “the doctors are still working on him” they told me. Eventually, they had finished and I was able to go see him. To this day I will never forget what he looked like. I wanted to burst into tears so many times but held it back. He was hooked up to the works – ventilator, all sorts of tubes of different vitamins and sedatives going into him.

He was basically put into a medical coma to stabilise his body. The worst thing was, his eyes weren’t entirely shut, so his eyes were just there with water coming out of them from the air of the hospital – it looked like he was crying. I saw a bit of blood on his arm from I don’t know what and just immediately felt ill. I tried to talk to him like normal, in case he could hear me, but when someone is in that state and can’t respond, you can’t help but talk about them in 3rd person. I still had to wait for his parents, who were going to arrive at about 9pm because they live near Skegness while we were in Coventry Hospital!

Critical Care
Soon he was moved to the much quieter critical care area of Walsgrave Hospital. By now, he was cleaned up and just looked like he was asleep. They kept his body temperature lower than normal because it was therapeutic to the body. However, this made it no easier for myself to touch him because, as most people know, a body goes cold when it dies so every time I felt him it felt like I was touching a corpse. The feeling was awful. I talked to him now, just like he was awake, but the hardest moment came when he began to lurch. If you’ve ever seen the movie ‘The Exorcist’ and have seen the bit where the girl springs to an upright position, this is what happened with him at first. It was terrifying, because you didn’t know if he was in pain or anything and you just hoped that everything inside of him was OK and mentally he was OK – if he was conscious at all. Every lurch I wanted to just burst into tears because it felt like you were getting a reaction from something that technically wasn’t supposed to be able to move at all on its own. Later that night they gave him a full muscle relaxant which stopped this, and although he was away in sleepy bliss, none of the rest of us were. While he was asleep like this, I found it so hard to have much contact with his body. It terrified me. I knew it was him, but it was terrifying. I couldn’t at this point even get the courage to kiss his forehead.

There were two nurses who really stick in my mind, because they were simply brilliant. Their names were Lisa, a brilliant Irish nurse, and Ray, who reminds me of our friend Nicky. They were so brilliant and happy. I remember the first thing that Lisa said to me, “Oh, you must be Anna. I’m Lisa – I’ll be looking after your man today.” Ray also took very good care of Barry, always giving him a thumbs-up and always talking, explaining, and generally looking after him. Barry doesn’t remember meeting Ray, to this day.

“Waking Up”
All of Saturday he was asleep and the doctors on Friday had told us that they would start to wake him up. When someone says “wake up” you imagine yourself in the morning just… waking up! However, with this, they had to first very slowly raise his temperature to normal, then very slowly take him off the sedatives. Also, when he was first waking up, things were very hard. He was looking around, but the doctors had said that he hadn’t talked yet. I went in to see him, he had no energy. He could barely turn his head. The bed wasn’t big enough for him – he’s 6’4″ – and so he was semi-curled up on the bed, looking like a child. His eyes showed that he was terrified.

I talked to him, he would slightly nod, or slightly smile, but his body was shivering and shaking all over. I assume this was just the shock that was postponed. It was the sort of shaking your body starts to get when you feel like you’re going to be sick and you can’t help but quiver with the nervousness of it. I told him I was going to get some lunch and that I loved him, leant down and gave him a kiss on the lips. His first words, ever, after this whole thing were, “I love you too.” This made me jump inside. I was so happy. Not only that he remembered me, but that he was showing instant signs of progress – he could talk. I immediately told the doctor.

The next thing that he proceeded to say to me was when he was looking at me weird and I said to him: “Do you remember who I am?” He then pulled me down to his lips and said quite simply, “How can I forget you? You’re Anna, the love of my life.” I could have broken down and cried a million tears at this point. It was like something from a romance movie or novel. There are fairy-tale moments in real life, and this was the proof. However, at this point, he could still barely talk. When he did, it took everything he had in him. He also still could barely move. He was quite “disabled.”

The next thing was the worry. Within the next few days (Monday to Wednesday), every day or even hour just got better and better – more movement, more talking, more awareness, and more insanity! He began to remember things, but was also starting to hallucinate about things as well – this was the effect of the “comedown” of the sedatives. He thought he was living with his parents, going to college, even doing work experience at the hospital! All of the facts were there, but they weren’t being pieced together properly. I think the best instance to explain how someone is coming out of sedatives is this: Barry said to me, “The nurses locked me in the toilet.” I couldn’t believe what I was hearing. However, it was almost true. The nurses had walked him to the toilet because he didn’t like the catheter, and tried to let him do things on his own. When they tried to open the door after he’d finished, the door handle had come off! So he was technically stuck in there but they soon got him out.

However, this was another great step – he hadn’t forgotten how to walk, either. Another thing he seemed to not forget was the ability to become sexually aroused. His father was sat in critical care with me one time and Barry just decided he was going to show me how passionately he cared for me! He suddenly lunged at me from the side of his bed and tried to snog me, right in front of his dad, and the nurses! No matter who was in there, my mum or dad, or his family, he didn’t care. Eventually, it got quite out of hand, and the nurse said to him; “Now, Barry, we think this whole thing might be a problem with your heart so you can’t get frisky!”

It’s Something to do with the Heart
By Thursday, he was moved to the cardiac ward. He was, again, the youngest person just like he was in Critical. It wasn’t long until the doctors moved him into a side room. He was much more like himself now, and starting to remember things even more. When he was in Critical he had the memory of a goldfish. Things were getting better. Soon, they were talking about moving him to Queen Elizabeth Hospital, Birmingham. They had never seen this sort of record recovery and still to this day he has no brain damage of any sort except for when he was in critical care he cannot remember being there, or perhaps the day he was working.

The Taxi Ride
Waiting for a bed in Birmingham took about a week or so, and then we suddenly were told to get packing because the ambulance was here to take us to Birmingham. I rode with Barry, naturally. The “ambulance” was actually a taxi.  However, the driver doubles as a fully qualified paramedic and has all of the tools and kits in the boot if anything went a bit crazy. There are only 15 of them who operate in the area and I say thanks to them because the one we had was brilliant – his name was Bill. We soon got Barry settled into the new ward at Birmingham. Funnily enough, the first nurse we met was called “Rommie” which was funny because ‘Andromeda’ is one of Barry’s favourite shows and the ship in its human form is called “Rommie” for short.

Birmingham
We arrived in Birmingham on Saturday the 16th of June. Birmingham was very different to Walsgrave Hospital. Walsgrave was pristine in condition because it had just been rebuilt and had all new equipment – Birmingham was waiting for this makeover. Things seemed older and less inviting, but the staff were brilliant, and the people on the ward as well. The men on the ward were so nice and just had a laugh as often as possible, with everyone. This was more when Barry remembers things. He doesn’t remember any of critical care and a little of the cardiac ward. Barry says the best thing about this ward was the older men were more than willing to help him through this tough time. Barry was going to have an implantable cardioverter defibrillator (ICD) implanted into his body, and one of the men, Ron, already had one of these, so Barry got to converse with him about what it was like.

Surgery
Soon, Barry was in surgery to have an ICD implanted. He was scared about the whole thing, as anyone would be, and so were we – but soon it was in and settled. The surgery had no problems and it was very funny because to this day, if you met Barry you would think that nothing like this had happened to him. He is exactly the same as he was before, with the addition of an ICD.

Laugh or Cry
One of the biggest things about dilemmas like this is whether you laugh or cry. At times, it was both. Here are some things that we look back on now, and can just smile about: we used to joke about Caroline giving Barry CPR – but now, we’re so thankful for it. We even would joke about Barry having a heart attack because of a tingling he gets in his hands sometimes. Now, we realize, its nothing to joke about.

Another thing that was a big laugh / worry was whether or not our love-life would be able to resume. The doctors said it could, and at first it was very very peculiar. At first, because Barry had had an angiogram, we had to put a pillow on his groin/leg area before we started anything. It was quite funny, and we just did it in increments. You can only go as fast as what you’re comfortable with. It was a funny experience, but very weird. We still both feel weird about it today. After not being around each other 24/7 like we normally were for about a month, and then suddenly going back to it, its very weird.

My best advice for people is give yourself time to adjust. A month is when all the heavy stuff comes out like the crying, the emotions, and everything else. After that, things slowly get better. Although you will always know that something is different, don’t let it rule your life. The worst thing for anyone who has had something like this, is not being able to drive. Barry can’t drive for 6 months, and if in that time he gets a shock from his ICD then that timer goes up and up. He hopes not to get a shock.

The Mystery – Still Unsolved
To this day, the doctors have no idea what happened or why Barry collapsed so suddenly. They’ve done an MRI scan, ECGs, an angiogram- everything, and cannot find a single cause or reason as to what happened, why, or what it was that actually happened. He still remains a mystery. The only thing that people can come to the conclusion of, seeing him from literally dead, and now where he’s exactly normal like he was before, is that he’s a walking miracle. I like to think that too.