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.

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That pesky Neuropathy!

So the up and down issues continue along with some additional issues that I could do without. The last couple of weeks have continued to offer their challenges with up and down muscle/tendon type pains and increased neuropathy issues. In particular the burning in my knees has flared multiple times and I’m getting the uncomfortable pin prick type sensations throughout every day at the moment. Both of these are a worsening of symptoms I could do without. I’m also finding that my right eye vision is frequently more blurry and is having a noticeable impact on my vision in general. I did get my eyes tested last week and although my prescription has changed quite a bit in a year he didn’t notice anything suspicious in the eye health or pressure test. I think I will mention it to my GP on my next visit┬ábecause something is going on there… yet another thing!

In addition to that the prostate concern continues with additional blood taken to day to test PSA levels, full count and a number of other markers. I am concerned about this and hope that it is a case of a benign prostate related issue. I also have an echocardiogram in a couple of weeks time to check out my heart, I don’t imagine they will find anything of concern but it’s good to be checked out anyway.

In my last post I mentioned I had a GP appointment booked and that went well. The GP who isn’t one I have seen very often was pretty interested in the Cipro reaction and asked quite a few questions. He also said he would arrange for some physio and gave me some details about getting help with general wellbeing and dealing with the stress of this whole situation. I wish there was some way to reduce or eradicate the neuropathy and allow the muscles to strengthen again. The pin pricking isn’t debilitating but it is pretty annoying, it’s the tendon twitches, muscle aches and joint pains that cause the most restriction and pain. I know that I’m suffering a bunch of symptoms of autoimmune disease and mitochondrial damage caused by the medicine but the uncertainty of recovery and timescales plays on my mind daily… there’s no doubt I’m somewhat consumed by the situation with my health above pretty much anything else which isn’t unexpected considering without my health my options in life are vastly reduced.

Stress levels have been much higher as well which I think is impacting my mood, my sleep and my physical floxing symptoms. Life is throwing everything including the kitchen sink in our general direction at the moment and it really is overwhelming at times. All I know is that life throws up many challenges and many surprises, some good and some bad, we just have to try and wade through and make the best of what we can.

Visit to Consultant

Blood test war wound!

Just an update on the results of my visit to the consultant last Wednesday. It was a pretty epic journey down from North Norfolk to Worthing! Parking at the hospital was a nightmare so if you ever have to go there look for alternative parking. In short she once again emphasised how important it is to not get stress or get depressed as those emotions act as an immunosuppressant. She then looked at my symptoms, went through them and suggested that some could easily be down to anxiety/stress which I did agree but I also made it clear that much of the anxiety and depression comes from worrying about the continued health issues in addition to any every day life stress.

She also went through how the Cipro is an important and useful drug in many difficult situations but like any drug it can react badly with certain people as in my case, which I understand. I do believe that in a life or death scenario where there’s no option then the choice is very difficult, for me at least I won’t take them again and she said to me to avoid them in future.

The first stage of her investigation is to rule out any mechanical issues which a little unfortunately focused on my recent hip/back issues rather than things as a whole. However if she’s wanting to check out things then I guess it’s no bad thing. If there is a degradation in my muscles or joints that is visible then hopefully it will provide some direction as to treatment options. So I had a bunch of blood tests again to test largely for immune issues and inflammatory issues. I also had a hip x-ray and I’m going to be sent an MRI appointment and also a nerve conduction testing appointment.

One thing she made clear was that any radical diets or naturalistic approaches would likely do little if anything and that there was little actual evidence that these things had much if any impact. She told me to eat healthy food, lots of antioxidant foods but that’s it. She advised me not to stop dairy and insisted that doing so could have more of a negative impact than positive. It turns out that she was involved in running an Olympic team had had spent 10 years researching diet impact on the body especially around rheumatoid arthritis and other muscle/joint issues etc…

She also said that she would not recommend a non active approach to recovery and that I should be as active as I can without going over the top of course. She actually said what I have always thought, you only get one life so you can sit and feel sorry for yourself whilst your life goes by or you can get on and do what you can. She wants me to undertake a light exercise programme that involves walking and swimming. Initially walking short distances and building up slowly but the key was it needs to be regular. Yes an element of rest for recovery is needed but as I thought, the muscles degrade rapidly when not in use and weaken adding even more issues. She told me about how she worked with Olympic Athletes who were recovering from injury and the approach is always slowly but surely rather than all out which would no doubt result in further injury

I didn’t get everything I wanted resolved and I need to contact her again to ask for my right foot to be examined as that has been a pretty constant issue. Once again she emphasised that from the cases she has dealt with everyone has made a gradual recovery but she could not predict the level of recovery or the timeframe. So I guess the investigation has begun and it may result in nothing being found which isn’t uncommon! But at least I would have been checked out

I’m still dealing with a bunch of symptoms still including what feels like increased weakness, some sleep issues again, burning muscles and joint pains. I just want my mobility and strength back, I can live with some of the other issues!