Rebecca

My SCAD story begins before I actually had my SCAD I believe, although of course this can never be proven, because there are likely to be many factors leading an otherwise healthy person to experience such a life changing health event.

In August 2017 I started to get back pain in my lower back. I began taking mild pain medication and didn’t think much more about it. In September I went on a trip to South Africa. It was whilst travelling on a road trip in the western cape with my boyfriend and his parents that I suddenly experienced very sharp pain in my lower back. It was so excruciating that I said we should stop to get bags of ice and to go to the toilet. Fortunately, the station (which was in the middle of nowhere) had a huge bag of ice cubes. So we continued the journey with me lying down in the back of the 4×4 with the ice pack pressed firmly on my back, which although very cold was a huge relief!

Fast forward to the next opportunity to get to a hospital and I had a private scan. Turns out that I had a kidney stone near the top of my right kidney causing an obstruction and a build up of fluid. A doctor advised I needed to get urgent medical attention on my return to the UK.

On our return home I went to the doctors and gave them a letter from the SA doctor and they simply put me on a waiting list until the end of November… a two month wait for an ‘urgent’ condition!

Before that date I was rushed to A&E in extreme pain and had to have an emergency operation to remove the stone and fit a stent between my bladder and kidney. I thought the stone had been removed but unfortunately I still had pain in the weeks that followed, so to cut a long story shorter I ended up back in hospital on a few occasions, sometimes with the operation cancelled due to urine tract infections or due to other emergencies. At the start of 2018, I found myself on a waiting list for another procedure in May.

Everything started spinning

Approximately one month prior to the operation, one evening I went to bed at around 8pm as I didn’t feel too well. All of a sudden I got a dizziness in my head and everything started to spin. I crawled into my partner’s bedroom on my hands and knees and said I felt very ill. I was bright red and hot on my face and chest. I crawled to the top of the landing and then began being violently sick.

My partner called 111 and they said they’d send out a doctor. We waited what seemed like many hours and an on-call lady doctor arrived. I was checked over and given a special tablet to stop the nausea and told to rest. In hindsight I believe that was the start of my SCAD, because after that day until my operation I didn’t feel too well. I even said in my preoperative interview that I didn’t feel ‘right’ however nothing was picked up, other than my iron levels were very low, to the point that I was given iron transfusions in the week prior to my op. (I had been experiencing very heavy menstrual periods for some time).

After many months of pain and procedures I went into hospital on 24th May to have another routine operation to remove the kidney stone that was embedded in the wall of my urethra.

The day started in a straightforward way. My partner took me to hospital and we said our goodbyes. The only thing that wasn’t so normal was that I felt very hot on the day. I remember going to the bathroom where there was an open window and trying to cool down. The nurses checked my BP which was on the high side but not extremely high and put down to pre-op nerves.

When the time came I was wheeled to the operating theatre. There was a small team of doctors and nurses in the pre-op room ready to administer the anaesthetic. The room was nice and cool and I didn’t feel any more apprehensive than for previous operations. The anaesthetist was a lady and she said they were going to put some meds into the tube in the back of my hand and count down slowly from ten and I’d be asleep. And so I lay there and the injections were given and quickly I drifted off to sleep, thinking, praying and hoping that this operation would finally remove this stone and free me of the pain.

What followed on from there you wouldn’t have thought in your wildest nightmare dreams. Thankfully I was unaware of the events that ensued over the next 48 hours or so.

I opened my eyes and quickly realised that I was in a hospital bed but that there were tubes coming out of my neck and my arms. My lovely eldest daughter, Holly, was by my side and Doug, my loyal partner, was there too. They looked so overwhelmed with relief that I was awake. Holly was holding my hand and I asked them what had happened.

I felt very uncomfortable as I had oxygen tubes in my nose and a tube in my throat and neck. Holly and Doug told me that I had been put into an induced coma for the last two days as I had gone into cardiac arrest shortly after having the anaesthetic. I couldn’t quite believe my ears. I was in so much shock and the tears ran down my face. I was no longer in the smaller hospital as I had been transferred to a larger hospital under blue light ambulance after suffering a cardiac arrest. I was now in the intensive care unit surrounded by tubes and hooked up to a monitor flashing my stats 24/7.

The shock of what was happening was difficult to comprehend. I remember being very emotional and laughing and crying when talking to my daughter. I remember being very scared when I was left alone in the ICU ward.  All I could hear was the bleeping of other patients’ monitoring equipment. The nursing staff were amazing. They cleaned me and turned me and kept a close eye on me. I was in intensive care for a few days.

I was given strange liquids to drink to help my heart recover. I had a lot of fluid on my lungs so I was put on a nebuliser machine to help lift the fluid. This was a strange thing. I remember not wanting to laugh or cough as it was too painful on my ribs. After a couple of days I tried sitting up in bed and moving to a chair. Such a simple thing was so difficult to do. I felt weak and dizzy. It really made me realise just how fragile life is.

After a few days in the ICU I was moved to the cardiac unit. Whilst there the anaesthetist came to visit me from the smaller hospital. The doctor explained how shocked she was when my heart stopped during the operation and how during 15 years in the job nothing like that had happened before and that I seemed so young for this to happen. I was very touched that she showed such concern. The anaesthetist had already been to see me once when I was in a coma.

I also got seen by a Chinese male doctor who explained that I’d had a SCAD event and that on admission to hospital I had been given an angiogram however they found it difficult to see what had caused the cardiac arrest. After much investigating they noticed a tear in one of my main coronary arteries. During the anaesthetic the tear had happened and my valve had filled with blood which prevented it from pumping and my heart had stopped. It was only after six minutes of CPR that the doctors managed to get my heart to start again.

Before I was allowed home I had to have another angiogram. That was probably the scariest thing I’ve ever done! I remember it was a hot day (end of May) and I’d been off food and drink all day. I was gasping for a drink! I was in the end called down to the theatre around 5:30pm as the last patient of the day. The lady in the bed next to me was going crazy because she had also been waiting, so it was a tense situation.

I managed to keep surprisingly calm as I had the angiogram although at one point it did feel like the wire had hit a nerve so I requested urgent pain relief. I was given something by injection that almost put me to sleep. At this point the doctors were taking photographs of my heart. I was extremely relieved once the wire/camera had been removed from my arm and I could go back to the ward. The best news was that after one week since the SCAD event the artery was already healing nicely and I would be allowed to go home.

Physical and mental recovery

What ensued from then on was many months of recovery both physically and mentally. I received a lot of love and care from close friends and family. The SCAD group on Facebook provided encouragement and advice and helped a lot, especially in those early days.

My personal experience is that the emotional and mental scars take longer to heal than the physical. I felt like such a weak person and had so many mixed emotions. I was relieved that I had survived but also thought ‘why has this happened to me?’

It turns out that this type of event can happen to someone who has an otherwise healthy body. Since I turned around 40 years of age I found that my menstrual cycle was not regular and I had extremely heavy bleeding. I believe a combination of anaemia, high blood pressure, being run down due to months of kidney pain and pre-menstrual hormones contributed to a ‘perfect storm’ situation that led to my SCAD.

The event did make me look at my life, assess what’s important in life. It also made me more anxious and lacking in self-confidence than before. I felt like I had been tarnished and was no longer the same person. I found myself feeling anxious that I could get ill again.

I also continued to form stones and was admitted to hospital a few times. The pressure of trying to continue with life, working and trying to stay healthy was very difficult.

It was in January 2020 that I had an appointment with an endocrinologist who suggested that I may have a growth on my parathyroid gland in my neck that was causing high calcium levels in my blood which in turn was causing me to continually form kidney stones. It was only then that we had a breakthrough. I had a scan on my neck which confirmed that this indeed was the case. A benign tumour 3cm x 5cm was leaching calcium into my blood. What a relief again to finally know the cause of these stones.

Finally in June 2020 I was given an operation to remove the gland from my neck. The anxiety was immense leading up to the operation due to previous events, as you can well imagine! I still have some stones believe it or not after all of this! I think, hope and pray that these are just left over from pre-June op. I’m receiving lithotripsy to blast these stones away.

Don’t be too harsh on yourself

As for my heart, time is certainly a healer and I try my best to listen to my body but also not to get anxious. The best medicine I have found is to rest. I also try to go with the flow. It’s good to feel in control of life, however sometimes life throws a curve ball and you have to go with it and overcome it the best you can.

Most of all don’t be too harsh on yourself. People who don’t understand or sympathise are not worth bothering about. Sadly there are people who don’t support you so I’ve found you have to grow a thick skin. After all, you only get one life so you have to do what’s right for you.  The people that support and stick by you are the ones you should appreciate and thankfully there are plenty of caring people out there.