The day the Earth stood still

When I was a kid I used to watch the old science fiction movies that were repeated on the television. Some were classic B movies with huge rubber monsters and spaceships dangling from string and others became classics in their own right. The day the Earth  Stood Still was one of those classics… but it isn’t the subject of this post, that was another day the Earth stood still, the 21st June 2017.

In recent months I have dealt with a range of physical symptoms along with the anxiety that follows them. The one particular concern was episodes of palpitations and rapid heart rate. Between December 2016 and March 2017 I had a whole bunch of testing completed to look for a potential heart issue. Multiple ECG, 24 hour ECG, blood test after blood test and an echocardiogram. The conclusion was that all my tests were normal, my heart was fine, the palpitations were stress which they may well have been.

A couple of months ago I experienced a new symptom, chest pain and discomfort. Starting with an episodes of stress enduced pain due to an idiot car driver, followed by some minor chest pain caused by exertion walking and swimming to another exertion triggered episode walking up a couple of long flights of stairs. I kept track of these, started monitoring my heart rate and blood pressure and produced a report to give to the cardiologist which detailed the episodes and my observations. Based on those observations cardiologist decided to book in a CT Coronary Angiogram to rule out a heart conditions from the picture. I ended up paying for the scan to get it more quickly but the result wasn’t what anyone expected as it showed a potential narrowing in my left major artery. The cardiologist then decided a full Invasive Coronary Angiogram would be required to look in fine detail at the heart arteries.

On the 21st June 2017 I arrived at Peterborough City Hospital with my partner Caroline for that Angiogram procedure. Somewhat nervous the hope was that the result would allow us to still take our planned holiday a few weeks later to Florida. We arrived at the Angiogram Suite early and I left Caroline behind as they whisked me off to the preparation room. My obs were taken (heart rate, blood pressure, SpO2 and temperature) then I waited. After a while a smiling happy looking guy came through some double doors and walked over. He checked my name and date of birth then led me back through the same doors he’d arrived through and on into an operating theatre. The anxiety I felt was pretty intense, a lot was riding on this going smoothly and the result being what we hoped.

In the middle of the room there was a bed or more appropriately named, an operating table. Above it hung an X-ray camera and to the left 3 large computer screens hung from the ceiling. To the righ of the bed was a metal table and a chair. I was led to the operating table where I climbed up and lay on my back. Almost instantly the room filled with 4 people, 3 nurses and the radiologist. They swung into preparation mode, placing a blood pressure cuff on my left arm and an SpO2 monitor on the index finger. The nurse on the right proceeded to prep my right arm which was to be where the catheter would inserted. She shaved under my wrist and wiped it clean ready for the cardiologist to arrive which she instantly did. 

She asked me to explain my recent experiences and then went on to explain what she was going to do. Simply put, she would insert a small catheter into an artery in my wrist and guide it to my heart where some contrast dye would be injected into the arteries of the heart directly and a bunch of X-rays would be taken from various angles. Of course I was thinking I’d rather be anywhere but on that table but I also knew I needed to know if my heart was healthy. She proceeded to inject some local anaesthetic into my wrist and swiftly inserted some sort of canular through which she would be able to insert the catheter. It wasn’t too unpleasant but it certainly gave a nasty sting as it went in. However the pain started as she pushed the catheter into the artery. After a few moments I had a terrible feeling of nausea and my head suddenly felt heavy and like it wanted to explode. The nurse called across that my blood pressure had dropped and the cardiologist stopped and ordered a canular to be inserted into the left arm and a fluid drip to increase the pressure again. A few minutes passed as they flew into action and once again my obs returned to a low but stable level. 

The cardiologist returned to the right arm and tried to push the catheter further but it had become constricted by the artery which appeared to have tightened after the previous incident. She had only managed about half the required images and decided swiftly that the remaining half would need to be completed by inserting another catheter through my groin instead. This would go up the femoral artery, one of the large main arteries and should be much easier to do. So she removed the catheter from the arm which by now was in quite some pain. A swarm of people hovered over my groin with shavers, wipes and needles, not the sight you want to see at any point in time! They shaved an area ready for the canular to be inserted, injected a local anaesthetic once again started over. Although there was some initial pain getting the canular inserted I didn’t really feel the catheter at all and in a few minutest X-ray machine had spun around and finished taking its images. Once again the nurses began the reverese of the preparation and bit by bit the devices were removed from my body and I was wheeled out to the recovery room, it was done.

Now my recovery time would usually be pretty quick if only my wrist had been used but since the femoral artery is bigger, it also bleeds more. One of the nurses had to press down on the entry point hard for ten minutes to try to stop the blood flow. After which I had to lay flat for an hour fore attempting to sit. The hour slowly ticked by and in that time my Partner Caroline was allowed to pop in briefly to say hi. Clearly I looked a bit worse for wear as she was rather emotional for a moment but I was glad to see her smile once again. She left to sit in the waiting area and I stared at the ceiling for the next hour before being sat up. I was then allowed the magic cup of tea and a sandwich which oddly was amazing, I enjoyed every sip and every bite almost like it was the first time I’d ever had them. Moving my arms was still difficult, the canular was still in the crease of the left arm and there was an inflatable wrist band over the entry point of the catheter on the right wrist. 

The nurse looking after me, Gemma, then proceeded to deflate the wrist band a small amount every 15 minutes. Each time my hand felt more blood flow and there was increased pain. I even felt a bit dizzy and had to lay back down for a while. The clock ticked and after a couple of hours the wrist band was off and I was feeling some relief although the pain in the groin and arm was worsening as the anaesthesia had worn off.

Across the room the double doors swung open and the cardiologist walked in and headed over to my bed. She pulled the curtains around the bed and asked how I was before checking the groin would for any swelling. She proceeded to push down another 5 minutes on the entry point which was once again a little painful. She then pulled out a diagram of my heart and started to summarise her findings. “So Mr Harris, the angiogram does unfortunately validate the CT Coronary Angiogram report and you do have a serious issue with the left artery of your heart”. By the time she had said the last word I already felt numb as I lay looking up at the ceiling, my mind racing and emotions overflowing. She continued to show me the diagram, a tree of arteries branching out, a large artery going down the middle with two branches, one to the right and one to the left that also divided into additional branches. She pointed out three areas the clearly showed narrowing and then proceeded to explain. “This is the right artery, its smaller and as you can see looks perflectly normal. This is the left artery which you can see divides at these locations. These highlighted locations are where there is significant narrowing, here by this split and here and here”. By now I’m thinking this isn’t good but at least you can use stents these days to fix these things. I already knew the Florida holiday was a definite no now. She then continued to explain, “The problem is that the location of these narrowings is adjacent to these dividing branches and that means we can’t use stents, I’m sorry to say you are going to need a heart bypass operation, and it will be a triple bypass”.

That was the moment the Earth stood still…

I felt the emotions kick in as the realisation of what was just said hit me. I looked at her and she was upset herself, clearly not a nice experience having to break that news. I felt my mouth open and out of it came one word rather loudly… “SHIT!” To which she replied.. “Yes indeed…” It was at this point that she asked if I had a partner with me and I said yes she’s just outside. So they called in Caroline who had no idea what had just taken place. I saw her face as she walked around the corner, that smile I love, that voice I miss when I can’t hear it and those gorgeous eyes but I felt incredibly sad because I knew she would be facing this as much as me. The cardiologist again went through the explanation and Caroline gripped my hand, visibly upset as was I. The next steps were made clear, I would be referred to Papworth Hospital, one of the leading U.K. Cardiac hospitals and in few months I would be having the operation. I’d be in hospital a week followed by three months of rehabilitation and physio to get me back to health. In the mean time I’d be starting various medications and need to take it slow and steady.

Everyone left and I lay looking at Caroline, both of us feeling like the world had just been turned on its head. We had to try to take any positives we could from this and that included the fact that at least I had a diagnosis now and it had been found before it found me. Also Papworth is a really good cardiac hospital with a great reputation, if I had to go anywhere then that’s the place to go. We tried to put a brave face on things and the nurse finished taking out the final canular before preparing the discharge letter. We then left and started on this new journey into the unknown that I am now following.

A couple of days have passed and yes it’s a bit of a rollercoaster of emotions for all of us. I’m not relishing the idea of being operated on but I know have no choice. There has been an outpouring of support from friends and family including some who have had a bypass or know people who have and have since had a very happy and active life. That at least gives some feeling of comfort and hope.

One thing is for sure, facing moments like these makes you take stock of life. You realise what’s important in, not the possessions you have or the house you live in, none of those material things. It’s the people you love, the friends you’ve made, the memories you share together that really stick with you when all else is gone.

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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 because 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.

Another little update

Seems that after a period where I neglected to update this blog I’ve suddenly much to write about!

I know only few days have passed since my last update but I wanted to keep documenting things as they change or progress. This week has been progressively difficult unfortunately and as a result I’m not doing too great today. I’ve had a whole bunch of weird and wonderful symptoms, some old and some new. I decided to list them here so if you’ve had any of these then feel free to comment!

  • Knees have been weak, bending them sometimes leads to them giving away. Any kind of twisting of the knee results in a lot of pain. If I bend them whilst sitting it sounds like there’s 2 pieces of sandpaper rubbing against each other. Walking down stairs has been difficult after the left knee gave on me and resulted in pain ever since.
  • Hives and itchy feelings are now happening multiple times a day. I end up with groups of bumps and redness when I scratch.
  • Eyes have had various symptoms including pressure feeling behind them, hot feeling, sharp pains, blurry vision.
  • The muscles in my legs, shoulders, arms, chest and back keep getting sharp tearing or pin prick sensations when they are being used.
  • Sleep pattern is messed up and I’m not sleeping well.
  • Right hand was very cold earlier whilst left was perfectly warm. This lasted for quite a while and you could feel the coldness kick in from the wrist onwards.
  • Had some digestive issues with episodes of nausea and pain.
  • Frequent urination.
  • Difficulty in focusing on tasks.
  • Pain in both ankles and feet, especially the bottom of the feet.
  • Increased PN issues, I.e. burning feelings in legs and skin.
  • Increased fatigue.
  • Muscle twitching in arms, face and legs.
  • Increased anxiety and depressed feelings.

It’s a long list and probably to a healthy person would look like I must be exaggerating but I’m not. I have experienced all of the above in the last few days and many today alone which of course makes life a challenge. I’m trying to focus on each day at the moment and not think too far ahead but even getting through 24 hours is sometimes hard going.

A new year, new hope?

OK, so I managed to document my 2016 summary and now I can get to this year so far. I was sat thinking this morning how it’s now exactly 4 years since I started having health problems and since I had the first UTI that led to 18 months of being sent from pillar to post with no direction. 14 courses of various penicillin based antibiotics clearly destroyed the good bacteria in my body and weakened my immune system so that when that final sledge hammer called Ciprofloxacin was unleashed there was nothing to counter the cell damage it would inflict. 4 long years of re-occurring problems with the last 21 months or so being a nightmare post Ciprofloxacin.

When I found Floxiehope early last year it at least gave me some hope that I could hopefully in time recover but it’s proving to be a struggle far greater than I imagined. By now, on my way to 2 years out from taking Cipro, I had hoped to be largely better, had expected that my mobility would be a long way back to normal, that my eyesight might be improving, that my mood might be improved and the memory of this would be just that, a memory. But that’s not the case, the progress is slow with a recovery seeming no nearer in many ways. I’ve had some stressful things to deal with already this year with the loss of our cat, job stresses, world stresses, life stresses and sadly the loss of my partners grandmother the week before last. I know that stress is a major factor in the speed at which your body heals so I understand I’m not dealing with the optimal recovery situation but who is?

Me and Luna, taken just before Christmas, weeks before we said goodbye.

I’ve had a few flare ups of floxing symptoms since January and they’ve been pretty bad with some of the most painful and worrying knee and muscle issues I’ve had. It concerns me greatly that no one seems to be able to tell me what is going on, lots of ideas but no evidence. Yes some of my tests have ruled out certain conditions, some haven’t leaving certain conditions a possibility and some have shown some damage or issues but in all those cases there’s still no treatment or way forward other than being told that in time hopefully things will improve. Having pulled my back 3 times since August, twice in the last 3 months I at least now know that I have 3 bulging discs but no idea why. Of course being that I’m a motorcyclist, like kayaking, want to sail and scuba more and have a bunch of things that all required an undamaged back the uncertainty about how my back will heal or not just adds yet more worry.

So does 2017 offer hope? Well hope is all I do have since there’s no guarantee of significant improvement. I try to hold on to the thought that I’ll be able to do the things I once did, that keeps me going. I hold on to the fact I have a lifetime of memories to make with my partner Caroline which so far has been restricted by my health and life in general. I’m 47, not young anymore but not old either and I should in this day and age be thinking that there’s possible 30 or 40 years ahead of me to live life, explore, enjoy and do those things I never did when I was younger. But instead I find myself struggling through each day, dealing with the plethora of pains, twinges and weakness that seem to randomly take hold. Mentally I’m struggling… I have found myself thinking more about the end of my life, feeling anxious that the medicine I’ve taken may have reduced the time I have left. I’m feeling a mixture of anger and sadness about where I find myself now, how my health has been ripped from me ruining the life that was planned and it need not have happened if I’d made different decisions. 

Today I’ve not felt myself at all with reoccurring tightness across my chest, pain in my elbow, weakness and shaking in my right leg, burning and aching in my back, tight and sore shoulders and shoulder blades… the list goes on. I’ve felt my anxiety increase as thoughts about what might be going on with my major organs have popped into my head, thoughts about why my muscles and joints are still becoming weaker even after all this time. I try to stay as active as I can but it’s a fine balance between doing stuff and over doing stuff and suffering the consequences. Fatigue seems to grab me often at the moment with a sudden feeling that I need sleep or have no energy. A fog descends over my thoughts making it hard to concentrate on tasks and my memory sometimes seems to suffer as well now causing me to panic a bit when I can’t remember things I’ve known for years. I know anxiety plays a part in this but it’s not the whole story and the Ciprofloxacin has taken its toll in making this worse as well.

There’s no doubt my mind is too preoccupied with worry and stress to simply relax and enjoy anything most of the time. I rarely laugh anymore and I struggle to feel upbeat and positive about anything, I hate feeling this way. I hope this year turns some this around and in the coming months I start to feel better not worse, leading to a more positive outlook and the happiness that I desperately need.
 

 

Anxiety

Anxiety, stress, tension, worry… Whatever you call it the effects on a person are substantial. The physical symptoms which manifest themselves as a result psychological issues that you have little control over can be debilitating and upsetting, leading to further anxiety and depression.

I first encountered the monster that is anxiety some 14 years ago when dealing with a whole bunch of life stresses, long working hours and the sudden death of a friend due to suicide. I suffered a massive panic attack one morning on my way to work with such extreme symptoms I couldn’t believe there wasn’t some physical illness or condition causing them. That morning I ended up in the Emergency department of a hospital in London after I was carted off in an ambulance as a suspected heart attack case. Some 4 hours later I was discharged after a plethora of tests all of which indicated no problem except for rapid heart rate.

So began over 18 months of learning to deal with anxiety and stress during which I was hospitalised 2 more times, 1 of which was incredibly distressing as they struggled to slow my heart rate below 140 resting and they resorted to using some pretty hard core drugs requiring me to be taken to the crash room in case my heart stopped. Thankfully it didn’t but they still couldn’t slow the heart rate so I remained in hospital for a further 4 days. When I eventually made it home I struggled with weird symptom after weird symptom. Dizzyness 24/7, muscle spasms, headaches and weird pains in my head, palpitations, insomnia, fatigue, twitching, odd burning sensations, adrenalin rushes, digestive issues and many more. I did CBT, read a lot of books, saw a therapist and learnt how to deal with it all for the next 8 years, mostly.

However the last 6 years have thrown a whole raft of stressful situations at me. First was losing my mother to cancer just 4 weeks after being diagnosed. Then my marriage broke down and a difficult divorce followed. My father was then diagnosed with cancer and died a year later during which time I developed some issues with my prostate which lasted around 1.5 years. The end result of that was the prescription of Ciprofloxacin that has left me physically and mentally tortured since May 2015. On top of this are job worries, day to day stresses and the world we live in which is stressful in itself just to be a part of.

This last year I’ve had good days and bad, some of the bad days have been really very low indeed. Depression has been a problem with periods where I couldn’t see point in the future, I struggled to enjoy anything, I would choke up or start to cry out of the blue. Recently I’ve been dealing with increased palpitations, arm pains, sleep issues, digestive issues, fatigue, tight chest and the usual anxiety symptoms. The knock on effect is feeling fed up and depressed about this constant battle of trying to beat the floxing, which in turn leads to more anxiety. So I’m going to try to address that, meditation, more sleep, swimming, peace and quiet to start with. I’d like to do Tai Chi again which I did years ago but physically I can’t right now. I think I’ll remove stimulants from my diet such as coffee and reduce sugar and salt to see if that helps. I’m sure in time this will pass as I hope the floxing will also, I just wish it would hurry up!

Muscles, Tendons, Ligaments

A few more weeks pass by and my body continues to struggle dealing with this illness or condition, whatever we label it. I’ve had a steady decline over the last couple of months with increasing amounts of leg pain and mobility issues. Some of this I believe is down to Peripheral Neuropathy, in particular the burning which is fairly constant, twitches and weakness. I’m more aware of the muscle loss now than I was, I can see it, my shape has changed!

The biggest issue I’ve had is with mobility due to the problems with the muscles and connective tissues. I’ve had ups and downs this year, varying from hardly being able to walk to being able to wander around town even if there was pain doing so. I’ve not been in a situation where I could consider hiking anywhere and anything more than a slow walk has always been out of the question. Putting any stress or strain on any of my limbs or muscles causes immediate pains, pin prick sensations, feelings of tearing or burning.

What has been more of a concern is the decline with little improvement and no real “up” moment now for quite a while. I’m currently able to limp around the house, I can get out and wander short distances as long as I take breaks and I can drive. I even managed to fly this last weekend, it was only a 50 minute flight, but I had to deal with plenty of stairs and walking and I made it through with absolute grit and determination because it hurt, a lot.

My hip on the left, my back on the right side and my thighs have all been problematic, weak, suddenly giving away if I turn a weird angle or twist a certain way. It gets me down, of course it does, you’d have to be made of stone to not feel depressed when someone 20 years older goes flying up stairs that you can only manage 1 step at a time. I know rest is important but I also know too much can be detrimental so it’s trying to understand that balance. Last thing I want is to end up pulling or tearing a major tendon and having to deal with the recovery from that but the truth is I simply don’t know what damage has been done and is continuing to be done.

The best way I can describe this is that it feels like I’ve gone to sleep and drifted into a nightmare. A nightmare where my life has been taken away and I’m trapped inside a broken body that looks like mine but isn’t! I’m living groundhog day, the same routines, the same pains, the same future and it’s over and over except the symptoms change, in an every spiralling fashion, unpredictable, debilitating, ruining plans, making life a misery.

I guess I’m doing what so many have already have done, looking for answers, looking for hope, dealing with the anger, the pain and the sadness. Why did I take the damn pills? Why didn’t I research before I took them? Why did I blindly believe the consultant who gave them to me? I still relatively young, possibly only half way through my life yet it many ways right now it feels like I’ve had my life and this is it now. I “hope” that my body still has the ability to recover, that not too much damage is done. I mean I’ve not abused it, I rarely drink, I don’t smoke nor ever have. Yes I’ve maybe had a sweet tooth and probably could have been a bit more active at times but I’ve been healthy, gone through periods of visiting the gym regularly, did Kung-Fu  for a while, did Tai Chi for a while, cycled, did a bit of running many years ago etc..

The Ciprofloxacin just seems to have aged me from the inside, damaged anything that needs collagen and stopped my body repairing itself properly. My muscles, skin, teeth, eyesight and so much more has been impacted, quite unbelievable. Yet NO pharmaceutical company offers a solution, a majority of doctors won’t accept the drug caused the condition and those who do accept it have no treatment they can offer. I’ve read horror stories of people being treated like idiots by medical professionals (I use that term loosely) who have financial interests in prescribing various drugs. The USA seems much more aware of risks and the FDA recommendations compared to the UK agencies such as NICE and MHRA but the doctors still offer no solutions over there either.

I’m seeing the consultant Thursday 6th October, the 7th year anniversary of my mothers funeral as it happens. I hope she can advise and help in some way, she does at least accept that Ciprofloxacin caused all my issues but has stated that time is the only real healer.