The tale of my broken heart – Part 1

This is a story, not of a love that was won then lost, but of an unexpected and life changing series of events that literally broke my heart.

I'm 47 years old and have lived a pretty clean life of which I had always been fairly proud of. I've never smoked, never taken drugs, consume a couple of alcoholic drinks a year at most, eat a healthy diet and have been generally pretty active. There have been periods where I have been pretty darn fit going the gym 5 times a week, cycling and even did a bit of Kung Fu and Tai chi. I've been a keen motorcyclist for decades and even enjoyed a bit of adventure bike riding and travel which is in itself requires a reasonable level of fitness. I've enjoyed sailing, kayaking, swimming and even a bit of scuba, all things I want to do more of. So what I'm trying to paint is a picture of a relatively healthy guy who has lived clean and tried to be fairly active.

My reaction to Cipro 2 years ago kind of blew that out of the water unfortunately and the damage done to my muscles, connective tissues, joints etc… left me with really rather limited mobility for quite some time. It was only really in the early part of 2017 that I had increased my walking distances to be several kilometres although still at a rather slow pace. The kick in effect if all that was my fitness has plummeted and it really showed. The Cipro aged me, visually it can be seen in the rapid changes to my skin, the increased moles, age spots and wrinkles that literally appeared in weeks post Cipro. But also my muscles have shrunk drastically and I've lost considerable weight recently that may be both a good and bad thing I guess.

So to the point if this post, I had already been struggling through life somewhat since Cipro. I had a much more limited social life and had been unable to do a majority of the activities I enjoyed. But I could still drive for short trips and I could get out and do most day to day things that I needed to. In mid 2016 whilst the Cipro rollercoaster was in full effect I went through a continual cycle of weird health issues which seemed to have no rhyme nor reason. I was already under the care of a consultant rheumatologist for the musculoskeletal issues but I also noticed increased palpitations which I wasn't hugely concerned about because I've experience them for the last 15 years, the only difference was the increased frequency of them. So in September I visited my GP and raised my concerns and as expected he wasn't too worried. He had already been somewhat reluctant to believe the whole Cipro reaction scenario until he found the FDA reports and spoke to his colleagues from Germany, then he finally accepted it.

I was referred to Peterborough hospital for a cardiology appointment, something you would expect would come pretty quickly but no, 3 months later in December 2016 I get to see a Registrar (trainee consultant) who tbh wasn't particularly interested. Again the feeling I got was he suspected anxiety or stress as the culprit. Now by this point I already had a number of ECG done by the GP and they were all OK, so I do understand their lack of concern, plus I'm low risk, lifestyle wise at least. On the NHS heart disease calculator used by the doctors to calculate risk I am 3.1% risk of developing any heart related issues in the next 10 years, as my GP put it, my risk is minuscule. Anyway I told the registrar my story and he agreed to order an echocardiogram to be in the safe side.

Again there was a 3 month wait and I finally went to have the echocardiogram done in Peterborough on 25th March 2017. The test went smoothly and the chap doing the test was a researcher and very thorough. The end result of that was that my heart was in good shape and no obvious areas for concern at all. I left feeling some relief and confidence that anything I had been feeling was likely stress and of no concern as it would pass.

After this my partners mother booked a holiday for us all, sadly having lost her mother in January she wanted to do something nice to cheer everyone up after what had been a tough couple of years. So suddenly we are booked on a surprise holiday to Florida leaving on the 11th July! Obviously that was a fantastic surprise but I had concerns over my general fitness post Cipro, I knew I would struggle to walk around theme parks all day. I decided to try and increase my walking and at least get enough strength and stamina back to be able to slowly wander around and attempt some of the slower rides. We started planning the holiday, setting up all the Disney web accounts, booking fast Passes, booking meals etc… everything looked great.

Then 2 weeks later whilst driving home from Norwich I had a car drive almost on my bumper in the dark with their lights blinding me. For no reason it just sat there and didn't over take even when I slowed down. I gradually felt my adrenaline increase and heart rate start to shoot up and suddenly I had a tight clamping pain across my chest and I had to pull over. For a good 10 minutes I experienced a lot of discomfort, sweaty hands, lightheadedness. Again I didn't know what it was but it didn't feel like anxiety to me. Caroline took over the driving and got us home and I staggered off to a bed feeling quite unwell.

The next day I went to my GP and explained what had happened and once again an ECG was done that was completely normal. I was told to go home and try to relax and that nothing was physically wrong. So I left and based on that advice I continued with my goal of improving my fitness by doing longer walks and increasing the pace a little. The problem is I started to get some chest discomfort once I walked just a little bit faster. However my ECG was fine right? My blood tests were always fine, so it must just be lack of fitness or maybe the Cipro effects?

I started some light swimming but again developed some chest discomfort on exertion. I kept track of all these events in a diary and started to monitor my heart rate and blood pressure. As the next couple of weeks passed I ended up with multiple visits to my GP and the tests returned normal each time. Then I had another bad episode triggered by emotional stress after a minor incident with some kids and a football! This time I ended up very unwell, my blood pressure went up to over 150/100, my heart rate sitting was over 120 and I felt very sick. An ambulance was called and I was taken to the A&E department of the local hospital. So began what ended up being 8 nights in Hospital over a number of weeks, each time the ECG and blood results were completely normal.

During this time I had requested that my GP contact the cardiologist again and get me an urgent appointment. Urgent ended up being almost a month away and I had to push the hospital to see me 2 weeks later. They decided to order a CT Coronary Angiogram to rule out any underlying issue since it was looking very much like I had Angina. The problem was that it was still felt that nothing was wrong and the CT scan wouldn't be completed until after we were due to go to Florida. Of course I was now in a situation where I couldn't risk flying even though it was suspected nothing sinister was going on. So I decided to investigate private hospitals that could do the CT scan more quickly and found one, St Josephs hospital in Newport, Wales. They could do the scan in 2 days and get the ball rolling.

So I started on beta blockers, Bisolporol, which didn't totally agree with my Asthma unfortunately. Monday 12 June came around and Caroline drove us all the way to Wales so I could have the CT Angiogram done. I wasn't feeling on top form by any means, I had shortness of breath and a weird head. On arrival we went in and the hospital itself was quite nice as most private hospitals tend to be. I signed in and waited… About 15 minutes later I was called in to get changed into a gown ready for the scan. Then I waited again… Another 10 minutes or so passed I was called into the scanner room where a group of people were stood around, nurses, a doctor, the scanner operator and director of scanning. I was told to climb onto the scanner bed and lay down whilst they inserted a canular in my arm. That would be used for two reasons, firstly to inject additional beta blockers into the body to slow the heart rate, then a pump would be connected that would pump in a contrast dye just before the CT scan so that all the blood vessels would be highlighted and clearly visible.

The doctor injected me with one vile of beta blocker but the effect was negligible. Ideally your heart rate needs to be around 70 bpm or lower for a really clear scan and mine was still around 80. So he injected a second, then a third. They paused a while, it was now beating between about 73 and 77. So he injected a forth and then a fifth. By this time I wasn't feeling great but the show had to go on. So they decided to proceed. The first scan was to obtain the calcium scoring, used to identify the amount of calcium in the arteries, the second scan would produce the 3D image of my heart. As they prepared the second scan an automated voice told me to take a deep breath and hold, this was followed by the whir of the pump and gurgling of the dye as it entered the canular. A sudden flush of heat all over my body and a feeling like I'd wet myself followed! Then the CT scanner spun into action and it was over. We drove home, stopping briefly to grab a sandwich but I felt pretty awful. The beta blockers having taken their toll on my breathing.

The next day I contacted the cardiologist secretary as I didn't want to take the beta blocker anymore and needed an alternative. I couldn't get to talk to anyone and the following few days were spent chasing anyone who could prescribe me some medication. Although the report was sent to Peterborough by the private hospital after 2 days it took 4 days before I heard anything from the cardiologist at which point things changed quite dramatically.

The phone rang and I answered, the registrar was on the other end. Firstly he apologised for not answering or replying to any of my calls/messages I'd left for the previous 2 days, he'd apparently been quite busy. However he'd finally looked at the report and unfortunately it showed some quite worrying narrowings in the left major artery, so much so that they wanted to book me in for an Invasive Coronary Angiogram, the traditional way to get a highly detailed image of the heart and arteries. This is actually a medical procedure where a small tube is inserted into an artery on the wrist or groin and fed along until it reaches the heart. Once there a dye is injected and a series of x-rays are taken at all angles to get a detailed image. This again was urgent, but in NHS terms that's weeks away. Again, not until after the holiday we had planned! The problem was my Angina pains were becoming more frequent and less predictable. I had as mentioned multiple trips to hospital in the back of an Ambulance, hours and hours laying in beds in corridors, dozens of blood tests etc… I chased the appointment for the angiogram and stressed how my situation was becoming worse daily. It took a few words from Caroline to get them to jump into action when she asked them if they would take responsibility if I had a heart attack. Suddenly I was offered an appointment on the Friday, 4 days later. Half an hour later I get a call saying can you come Wednesday instead please, 2 days sooner.

So on the 21st June Caroline drove me to Peterborough for the Angiogram appointment. I was nervous but feeling so unwell I just wanted to know what was going on. After a short wait I was lead into the treatment area and prepared for the procedure. The cardiologist arrived and had a brief chat before I was taken into the theatre and final preparations were done. I climbed on to a bed, a bp cuff was placed on my left arm and a SpO2 sensor, my left arm was held out and the wrist shaved ready to have the canular inserted for the tube. Two large screens were positioned to the left which were hooked up to a mobile x-ray device which was attached to the ceiling on some sort of motorised crane like contraption. The cardiologist injected local anaesthetic into the wrist and after a short wait inserted the canular. She then started to push the tube into the artery quite quickly and forcefully. It wasn't a pleasant sensation and after a short period the x-ray machine started bobbing and moving taking various images. Then there was pain, and I suddenly felt incredibly nauseous, my head started to hurt, I felt dizzy. The cardiologist stopped and they checked my blood pressure which had suddenly dropped. They hurriedly put another canular in my left arm and a saline drip trying to boost the blood pressure which gradually increased. By this time the artery in my right arm had constricted and the cardiologist couldn't move the tube any further, the only options was to complete the angiogram by making another attempt via the groin. So they pulled out the tube from my arm, which hurt! Then proceeded to insert a canular in the groin and fed a new tube in all the way to my heart. The required images were taken and I was wheeled out, tired and in some pain. I had to lay down for an hour to give the groin artery (femoral) time to stop bleeding. This was followed by a nurse having to press down for 10 minutes hard on the incision. After a couple of hours the cardiologist appeared with results, looking rather down and a little upset. She pulled out a diagram of my heart and began to explain that the angiogram unfortunately confirmed the findings of the CT angiogram and there were 3 very serious narrowings in the left major artery, the main artery that delivers 2/3 of the blood to the heart. To make matters worse, the narrowings were positioned in really bad places, right were arteries divided and as such they could not be fixed with stents, I would need what was suspected to a triple heart bypass.

The doctor called Caroline in and explained the situation, a shock for her as well. I looked at Caroline and the emotions took over and we both got a bit watery eyed. I looked at my girl and all I could think of was our future, the things we had planned, the places we wanted to visit. I felt sad that she was going to have to deal with all of this alongside me which I knew was going to be tough and potentially a long road ahead even to get my health back. This on top of the fact I was already trying to recover from Cipro damage which had left me very unfit and weak.

The cardiologist explained that I would be referred to Papworth Hospital as an urgent request where I would be operated on and fixed. She hoped they would arrange an appointment pretty quickly due to the severity of the narrowings they had found. She then left and I lay on the bed contemplating what had just happened holding my girls hand never wanting to let it go. A short time passed and I was allowed to get up and get dressed. Additional medication was prescribed and I was allowed to leave and go home. It was a surreal experience, my mind was number oddly after the initial shock I felt calm and very matter of fact. Sure I had some anxiety about what this meant, I knew as much as these operations are fairly routine now, things can go wrong and I'd still have to wait for the appointment anyway.

The week after was slow and difficult, my angina pains continued to become more frequent and more sporadic catching me at all times and under all activities. As soon as I knew the name of my consultant at Papworth I contacted his secretary with a summary of what had been going on and how I was feeling. She replied back and later called me offering a private appointment. I explained again my situation and she suddenly told me to wait whilst she checked the booking systems. A few moments later she had tagged me on to the end of Mr Large's patient list for the following Monday. Unfortunately a day later I'm rushed into hospital again after a bad Angina episode and I'm kept in hospital for 2 days, however the hospital doctor was willing to let me out the next day as he didn't want me to miss my Papworth appointment with Mr Large.

Monday July 3rd 2017 arrives and I'm discharged from the Queen Elizabeth hospital, tired, feeling unwell but hopeful that I might get some direction regarding the operation, in particular timescales. Caroline picked me up and drove me to Papworth Hospital for the 3.20pm appointment. I didn't feel great all the way there, my chest was uncomfortable and my head wasn't in great place. We went in to the clinic and waited to be called in, however before that could happen I had to have a number of blood tests and a meeting with a cardiac nurse to go through my history. Linda, the nurse, took my details down covering existing and historic medical procedures and illnesses. She then explained the next steps and once we had finished took us back to wait to see Mr Large.

About 15 minutes passed and Mr Large popped out of his consulting room and called me in. He seemed a very nice man and I felt at ease, clearly years of experience and dealing with patients were a huge factor. We sat down and he proceeded to pull up the angiogram movies of my heart. This was the first time I'd seen them and again it was a pretty weird feeling knowing that was the muscle keeping me alive. He started to examine the video and point out the issues to me and it was clear from his expression and tone of voice that things were urgent. He looked at me and said, I think I need to make some calls immediately. Caroline was already feeling a bit off colour having listened to his explanation of my issues but we held hands and waited. Mr Large called his secretary and another person and between them they cancelled another operation and booked me in for a week later, the quickest he could manage. He told me the situation was pretty serious and needed fixing asap, without it I would die. I was told to go home and do nothing for a week! We left, again feeling numb and in my case still feeling unwell.

Caroline was amazing, she ran around after me and did everything she could to keep me comfortable and happy. But 2 days later I had another sporadic Angina attack and ended up in the back of an Ambulance on my way to the Queen Elizabeth once again. This time however things were different, my Angina was constant, the hospital now knew I actually had a heart condition and they were more cautious. The decision was made to keep me in hospital until the operation to make sure I made it! I was put in to a GTN infusion that drip fed me a constant supply of GTN which held of the majority of the angina pain.

GTN being pumped in through canular

I spent the next 2 days on the Medical Assessment Unit, followed by another 2 days in the Cardiac Care Unit (specialist cardiac ward)

My home in the Coronary Care Unit

I was transferred on the Sunday 9th July by ambulance to Papworth.

In the back of an ambulance trying to look happy but feeling pretty dire.

I felt some relief at reaching Papworth, I had finally reached the place my heart would be operated on, no more waiting, no more ambulance trips. The trip there hadn't been hugely comfortable in the back of a private ambulance for an hour or but it could have been worse. At least I was there and now just 2 days away from operation day.

Perspective 

When I had my adverse reaction to Ciprofloxacin just over 2 years ago it felt like my world had turned upside down. The onslaught of physical symptoms each day followed by the mental torture, anxiety and depression was without doubt life changing. I’ve fought slowly to get over the remaining symptoms but they persist and only time will tell if I ever fully recover from those 8 days of medication.

But the recent diagnosis of my unexpected heart condition really puts a fresh perspective on life and what we deal with. I had my initial consultation with the surgeon yesterday where my situation was explained plain and simple. My left major artery has severe narrowing and is 95% blocked. Being male the left major artery is hugely important as it feeds the majority of the heart. At the moment I have a tiny artery feeding the heart and as such I am walking a tightrope with my life. I was told that without a doubt I will die without having this operation. So he has fast tracked me as quickly as he can and I will be going in next Monday it seems for an operation on Tuesday and a resulting triple bypass operation that I hope will give me my life back and a future for many more years. 

Why have I got this? He doesn’t know but it’s possibly genetic and inherited and he will be testing samples to look for possible causes. Maybe I’m just unlucky or maybe even Ciprofloxacin has played a part in this but I can’t say for sure.

What I will say is that my perspective has changed significantly since this has happened. The reality of a life threatening condition versus an long term condition can not be compared. I’d rather be dealing with my floxing symptoms than this any day. So when your feeling down and like your floxing damage has robbed you of life, remember you’re still alive, you still have a chance to recover and whatever happens never take for granted the life you have no matter how bad it seems. I’ve lost parents and grandparents to illness and I’d do anything to have them back.

How a moment can change your life

I’ve seen a lot of ill health over the years, friends, family and my own, too much. The last 4 years have been particularly bad for my own health with around 2 years of reoccurring UTI later suspected to be a prostate issue. The following 2 years have been dealing with the aftermath of the adverse reaction caused by the Ciprofloxacin I was given to cure the prostate issue! It’s been a long, tiring and stressful period of life and one I had hoped would eventually pass leaving me with relatively decent health to live the rest of my days.

Yesterday things changed somewhat and once again I’m facing an uncertain future and life. I have for many years dealt with having a slightly fast pulse and slightly raised blood pressure. However it was always assumed that the cause was simply anxiety, the go to diagnosis when doctors don’t really know what’s causing a problem. Last year I started to develop slightly longer episodes of palpitations than I was used to and I was referred to a cardiologist. It took over 3 months to see the doctor and after an initial appointment I was referred to have an echocardiogram. I could see that the doctor wasn’t convinced anything was actually wrong but to appease me and my concerns he booked it. Another 3 months passed and the echocardiogram was done and showed no obvious issues.. hurray!

However I had some additional symptoms that started to develop in particular some discomfort on the left side under my ribs. I assumed this was digestive in origin and once again figured anxiety was the culprit. Then I had an episode of quite acute chest pain during a stressful encounter with a car driver who was driving right up my rear end. This was followed by a number of chest pain episodes caused by exertion and again stress. I notified the cardiologist and provided a detailed report of what had been going on and they decided to refer me to have a CT coronary angiogram but again it would take weeks or longer. The problem was that I am supposed to be flying to Florida from the UK in July and I wasn’t sure if I could fly.

So I ended up spending a lot of money to get the scan performed privately in order to speed things up. That was done on Monday in Wales, a very professional and nice hospital which has once of the most advanced scanners in the UK. It didn’t go exactly to plan as they struggled to get my heart rate down to the magic 60bpm event with heaps of beta blocker. I ended up having a longer scan than I had hoped and therefore more radiation but it was necessary. I got home Monday feeling pretty unwell and with a much increased shortness of breath. I stopped the beta blockers I had been taking in the hope those symptoms would reduce which then did, but the adrenaline type sensations have returned since. I’m currently waiting to get some alternative drugs to decrease the work the heart is doing.

So the results were sent to NHS cardiologist on Wednesday morning and I chased for an update. Although I was told the report had been passed on and I would get a response I heard nothing all day even after I chased multiple times. Then again yesterday I chased multiple times and had pretty much given up when I finally had a call at around 6.30pm.

It was one of those moments when reality seems to fade away for a moment and the voice in your ear becomes noise and meaningless. Expecting that he was going to tell me it was normal and again likely stress I was totally unprepared for the “we’ve found a narrowing in the left major artery that feeds your heart” that entered my ear. It took a moment for my mind to make sense of the words and then the realisation hit, I’ve got a problem with my heart, it’s not anxiety. He explained that he couldnt be certain of the extent of the narrowing without doing a full angiogram so he was going to book an emergency appointment (still 1 to 2 weeks on the NHS) and once that was done they would decide how to treat the condition. Basically the scale of narrowing will dictate whether I’m put on medication, have a stent or worse case need a bypass.

Now part of the reason this is all so unexpected is that I’m not high risk for heart disease. I have never smoked, I might have 1 or 2 beers a year! I have. Pretty healthy diet, my cholesterol is normal and my weight is only slightly higher than it should be. Yet somehow I have developed heart disease… as if the floxing wasn’t bad enough.

So now I have an unknown again whilst I wait and I know it’s highly unlikely I will be able to make the holiday to Florida in a few weeks time. The best I can hope for is relatively early stage build up and a successful stent placement which should in theory give me some years of better health. At 47 I have rather a lot to do in life yet, there’s too much that has been put on hold the last few years with my partner Caroline and my family and I need to amend that, get life on track, fix the broken things and make the most of the life ahead. When these things happen in life you realise that stress, jobs, things out of your control in the world, possessions, big salaries etc… all mean nothing in the end. Without your health you have nothing and all the material things and the stupid worries simply cause you anxiety and lost time you can’t ever get back.

Hoping for a better few weeks!