My Heart Journey!
Starting this off questions whether this is a blog or a story but this is my first attempt so here goes!
The start of my journey goes back to the 13th February 2016 at Crawley Hospital Walk in Centre. I had a chest infection that wasn’t clearing and with the combination of the wife moaning at me as well I gave in! Did I forget to mention at this time I’m aged 55 and whilst I’m not a peak fitness machine I love running and only weeks before at the end of January I ran the Cancer Research London 10Km winter run in under an hour as well as doing my local parkrun every Saturday (5Km) as often as I could!
I was expecting a course of Antibiotics and to be sent packing at the Walk in Centre and fair enough I got the Antibiotics but the Doctor wasn’t happy with my heart rhythm and got an ECG carried out and then was wondering if he should send me to the trusts main Hospital (East Surrey) straight away! After several chats and phone calls he decided that I needed to get my GP to refer me for an Echocardiogram. There was a lot of medical jargon going on so at this time I really didn’t know what the drama was.
I duly visited my GP to get referred and started to get a small idea of a problem of the workings of my heart and so waited for the Echocardiogram appointment. 17th March 2016 was the day and knowing this was only the same type of thing as pregnant mums have there was no drama and job done. Now there was the wait for where we went next. Sure enough a follow up with Dr. Saha at East Surrey was arranged. This started off in a bizarre fashion as they asked me to tell them about my lifestyle and any issues of breathlessness or dizziness, I gave them a heads up on things and my running etc. and they were a little puzzled that I was what they called asymptomatic, in other words I still felt good!! Then came the start of the ‘shocker’ of information from the specialist, without too much medical jargon he said I had a profusely leaking Aortic Heart Valve which would cause me problems as the arterial output was leaking back into the heart causing it to enlarge and work harder, a recipe for future problems. Ok so what’s the fix then I asked, open heart surgery to replace it, gulp!! More tests were required for more detailed info and I would be also referred to Mr. Yapp at St. Bartholomew’s (known as Barts) Hospital in London where he said the surgery would take place. I was now somewhat concerned, worried, all over the place as I never envisaged this! I did ask if I could still run and Dr. Saha did pull a funny face, but condescended that I do no more than a 5km very gentle jog, so runs I had booked up this year were going to be blown away!!
The next stage was to have a TOE (Trans – Oesophageal Echo) which happened on the 19th April 2016 at East Surrey Hospital. Basically they stick a tube down your throat and the ‘camera’ is closer to your heart to convert them to images to get a better idea of what is going on. I also love the consent and risk form; we have one in a 2000 chance of bleeding or issues with your gullet! They anesthetise your throat and prefer you to ‘swallow’ the camera without a sedative! Two attempts, no chance so the cannula came into use with a sedative and third time lucky. The sedative was mild as I was coherent speaking to the specialist straight after he finished. After an hour you have a cuppa and a sandwich to make sure all is good and sent packing, well that’s what I thought! We paid the annoying car park charge and left the hospital for a bite and chilled afternoon except that within ten minutes the Hospital rung me and asked if we were still on site as they wanted to see me again, so the car was swung round and back we went. Dr. Saha was waiting for me and explained on looking at the results there was a shadow in my Aorta and was very concerned so arranged a CT scan that afternoon, no food then! I was put in a day ward whilst waiting and had the return of another cannula! My Wife, Anne did get a little upset at this time as we didn’t have a clue of where things were now going. The CT scan eventually happened with a few tweaks, at one stage they gave me a puff of GTN spray (Angina patients will know) and I know why people say about headaches with this, I had a very short but raging headache from this then part 2 was to inject die into my veins, but they did say when this happens your head will become totally flushed and hot as well as you having a toilet sensation!! They weren’t wrong, when the die was injected via the cannula I thought my head was going to explode and my bum cheeks were on fire!!! The other bit that may not seem funny but anybody who’s had a CT Scan or MRI is the breathing messages, it tells you breathe in and hold then after a while to breathe normally, it’s just sometimes the time seems to be cruel for how long you need to hold for! After all complete I had to wait for the preliminary results. Dr. Saha came and saw me and I believe they had around 9000 images of me but the shadow was not a problem and so back to the plan plus they now had more images to support their diagnosis.
After this there was letters flying around to me and my GP but they may as well been in Chinese for my understanding of them!
There was a bit of respite at the beginning of May as there were no problems with me flying and so a week in Tenerife was well deserved, just had to declare the heart issue with my Travel Insurance. Did I mention Cuba in July, there lies a problem and I was advised to cancel this much to our disgust. I thought this was because of the long haul flight etc. but I found out later they wanted to keep all appointments and potential surgery flowing with no interruptions.
As things were evolving I had now met Mr. Yapp (male surgeons are always Mr.) who would be involved with my surgery and things were now moving on to Barts rather than East Surrey and so on the 8th June 2016 I attended Barts for a MRI scan. It was a bit more straightforward than the CT scan but they do put some ‘body armour’ on you and the same old breathe messages.
It was just now more letters and appointments but more of crossing the T’s and dotting the I’s and waiting for the inevitable date.
The letter finally came and 24th October was my admission date, just over 8 months after my ‘chest infection’ and the day after I was supposed to do the great south run! A little nervous but it had to be.
One thing prior to this was the pre-assessment that came in at short notice for the 28th September 2016. I attended the Queen Elizabeth building at Barts which was certainly a state, I think it might even be demolished by now! I was seen by Cardiology Nurse Linda who was very good and helpful. Lots of questions and general discussion, even MRSA swabbed due to all the fears of infections. She asked if I wanted to know what they would do in the operation! I wasn’t ready for anything like that and so declined but in part of a conversation she did let it slip I would be on a bypass machine, too much information. It was now the month’s wait and hoping there would be no cancelling of the appointment.
A few days before the admission I received a call, originally I didn’t need to attend until 4pm but for a number of years I have had a raised Bilirubin level (Liver Bile) which has been kept in check and is not a problem, but they decided they wanted to do a Liver Scan on the morning of my admission, no chilled morning lay in for me!
The day before my admission was the Great South Run in Portsmouth which I was originally booked in to do but my Son, Sean, took my place. I went down with Anne and many members of my running club to give support and a celebration drink afterwards and help take my mind off the next day!
Admission day came (24th Oct, Day 0) and Anne came with me for the early start to Barts. The Liver Scan was done and was all ok and now we had to kill time till 4pm! At this time there were no restrictions on me so even a visit to the pub came into play. At the bewitching time I was formally admitted and the ball started rolling with visits from all manner of people about the process. One bonus was my Son works close to where we live but they also have offices near London Bridge and he was allowed to work there for my Hospital duration and so he popped in as well. Visiting finished and I was now on my own with my own room. A special shaver for my chest and groin (not a hairy person but they wanted every bit of hair shaved off!) and a special hygienic shower gel were part of the evening’s events and on went a hospital gown. I was also informed I was first on the agenda for the morning and only an emergency would defer it. Sleep that night, well I tried!
The morning came too soon and I had to have another shower and the Nurse wasn’t happy with my shaving skills so she used her skills to get a closer shave. Another clean gown and I think the Cannula went in around then, clearly I was still first on the list and it was all systems go. I had already signed all the paperwork and I was confirming who I was numerous times. I was transferred to the anaesthetist’s area and the initial ‘knock out’ administered in the cannula and I was gone, I was now in the hands of a massive surgical team!!
Obviously the next thing I remember is at some stage in the afternoon I came round in ITU (Intensive care). All said and done I guess I didn’t feel too bad, mind you I had a major Cannula in my neck with a load of connectors on it, a drain tube in my stomach, a Catheter, covered in monitor pads with wires and a nice medical dressing down my front! I was offered a cuppa which was music to my ears but I didn’t realise that the effects of the anaesthetic wouldn’t keep it down well, maybe that’s why I had the good old cardboard top hat supplied!! Another requisite was every hour I had to breathe in deeply and cough, which with in effect a bunch of broken ribs wasn’t kind, that’s why they also gave me a button to press for a shot of morphine! The nursing staff had said to Anne that it might not be worth visiting as I might not even remember, but I was quite compos mentis and Sean visited me and I believe we had meaningful conversations! Day 1 of a new era came to an end but sleep was a premium with blood pressure checks every 2 hours and monitor alarms etc.
Day 2 (26th Oct) came and a bed wash from a nurse was an experience, getting you sitting in a chair and trying to get you back to a normal life type regime was the order. Sorting out what was edible from the food menu was a challenge, I quickly found the mashed potato was grim and avoided it like the plague. The most major event of the day was they took my drains out (2 in my stomach) and that was bizarre. They give you a large syringe and you blow into the ‘needle end’ quite deeply for 3 times and it’s on that 3rd blow they pull out one of the drains, it wasn’t painful but a strange sensation and the length of the tube they remove, well I didn’t expect that!! They then just stitch up the hole and job done. My wife, her cousin and niece as well as Sean visited me and I think they were really happy with the way I was moving forward.
Day 3 (27th Oct) was now upon and there were moves to get me into the HDU (High Dependency Unit, 1 nurse for 2 patients whereas ITU was 1 to 1). My Catheter was removed, which I was dreading but was no major drama and then they gave me a water tablet, bad move for the order that happened; I had to have a bottle for the rest of that morning! Around lunchtime I was moved to the HDU and started off in an area on my own but no drama, I could even walk to the loo although I had to drag a ‘coat stand’ of monitoring equipment with me! Around the middle of the afternoon I received a text from my wife saying that she was at Blackfriars with my daughter Rebecca and would see me shortly and I remember my phone was low on battery and I plugged it in to charge up. THEN I don’t remember anything until Friday morning! Just at the point when my daughter and wife came into the ward I arrested (VT Fibrillation), no clutching pain, I had just gone out for the count, no longer in this world!! The crash team were activated and my family was ushered out and about 20 staff came from everywhere! I can’t confirm the accuracy of everything from this point; it is from questions I’ve asked various medical staff. I believe the CPR process was adopted with a defib, they did get me going but had rushed in a mobile theatre and because of the concerns of an internal bleed from the surgery I was opened up again (twice in 48 hours!) and I believe whilst my chest was still open they got me into a proper theatre to sort things properly.
My Wife must have been frantic and my daughter took control of the phone and contacted Sean who promptly shut down his computer and jumped into a cab at London Bridge and quickly realised it would have been quicker to walk. Throughout all this drama came a point when they took the family into a ‘quiet’ room and updated them, I was beating again but there were keeping me in a controlled ‘coma’ but there was a risk I may have had life changing issues, in a nutshell my brain could have been depleted of oxygen throughout this trauma, that must have been hell for them.
Day 4 or was it 1 again (28th Oct) It was morning and they brought me round and I vaguely remember seeing these faces peering over me, I sort of remember saying to myself what the hell has happened (was back in ITU!). Doctors always have their ‘medical’ speak but in more plain speaking the surgery can disturb the electrical signals in the heart and when my heart slowed down it became irregular (VT fibrillation) and thus caused an arrest. I then had an external pacing unit to maintain a regular heart pace and talk with the Doctors was going down the route of a pacemaker. The daily routine was for the Doctors to vary my pacing box and every time it went down to between 40 to 50 bpm my rhythm became irregular which reinforced the need for a pacemaker. My family visited me and were very relieved to see me bouncing back after such a traumatic previous day and no life changing effects they were warned about.
Day 5 (29th Oct) They were happy to put me back in HDU and removed my drain and catheter (although I did plead to leave the catheter for a while after giving me a water tablet lol!!!). This was the first formal mention that I am likely to need a pacemaker and whilst not part of the plan I guessed this was now an extended route for me. I had visits from family and friends and everything was starting to catch up on me and got very emotional, which is very unusual (ask my wife!).
Day 6 & 7 (30th & 31st Oct) These were fairly average days with all the regular checks, guess how much I weighed when the nurses were doing their checks lol! Marcia was the Sister in Charge of me on day 7 and was brilliant. She was Brazilian and slightly stern sounding but after she had done her morning ‘checks’ she had clearly seen my notes and came up to me and asked if I wanted to tell her my story, I got slightly emotional but told her and rapport with her was brilliant after that. The day 7 visit confirmed I was going to be fitted with a pacemaker on day 8 (1st Nov) and would be nil by mouth from midnight. Use of the bathroom facilities were different! I had to get the nurse team to connect a portable monitoring unit and then whilst in the bathroom the wires were long enough for them to prop the portable unit on a chair outside to still monitor me, I bet there was some interesting traces!! Family visits continued and help keep some sanity.
Day 8 (1st Nov) This was actually one of my most frustrating days! No cup of tea, not even water! The only moisture was some dampened foam swabs I could rub on my lips, not exactly satisfying to say the least! The day dragged and hoping there would be no delay’s in going to get my pacemaker fitted, how wrong could I be. Lunchtime came and went and even one of the head consultants popped in and although trying to be optimistic was a bit frustrated with the hold up. Around mid-afternoon things weren’t looking good and I was getting dehydrated and needed to know what was going on, one doctor tried to get some intravenous fluid in me but my veins had been affected by the dehydration and he missed it without realising, shortly after this my arm starting swelling and became painful and I had to call out for a nurse to switch off the drip. It was now confirmed that the pacemaker op was cancelled and I just couldn’t get to the water jug quick enough! In addition to this I was starving and missed all the food requests but fortunately my daughter, Rebecca, turned up and after confirming with the Nurses that she could bring in a pizza for me she shot off to a local Dominoes and a pizza has never tasted so good!! Rebecca and Sean did help finish it off but I was bloated now! The day was helped along with a visit from a long standing friend Alex, and I start to ‘chill’ after all the frustration. The only next challenge was it was nil by mouth again from midnight but there was a better twist to things. The Nurse looking after me that night was the same as the previous night and was furious that I had not had my pacemaker fitted and told me to create ‘merry hell’ if there were any more delays, she also arranged for the night Doctor to put a drip on me, oh wow I was now a bit concerned as my arm was severely bruised after the earlier attempt. When the Doctor came I expressed my concern but his confidence was astounding, I always get a vein he said, and as sure as eggs is eggs he was spot on and no issues this time.
Day 9 (2nd Nov) I was hoping that everything would go to plan this time as I couldn’t go through another frustrating day! Marcia was the Sister in charge of me today which was brilliant as she had seen what happened the previous day and was instrumental in making sure it happened today. Around midday it all kicked in and I was taken down to the Cath Lab (the special pacemaker theatre with X-Ray Cameras). The amount of times they confirmed my details was unreal but then a crunch point came, they were getting ready to wheel me in when they (the experts) questioned if it was the correct pacemaker to be fitted to me! Phone calls were now being made while they took me into the Cath Lab! One of the Surgeons came back and confirmed they would be putting a different pacemaker in (I believe instead of a 2 wire it would be a 3 wire!), so now I had to sign a new declaration form whilst being prepped for surgery and told of additional risks as well (one of the pacemaker wires would run through a vein close to my lung and could ultimately puncture it!!!). Part of my preparation was putting defib pads on me as a precaution, when you’ve done AED training you know exactly what that’s about, slightly concerning!! They only sedate you for this procedure and after what I’d been through I asked if they could give me the maximum dose! I was so tired anyway that I think I fell asleep anyway and only remember the last 10-15 minutes when I felt the stitches going in! They put a massive compression dressing on which needed to stay in place for 8 hours and wheeled me back to the ward (4B). In no time at all I was then moved to the normal lower dependency cardio ward (4A) and now only had a remote monitor, my remote pacer had been removed (although the wires were still hanging out of me!). Sean and Anne visited me and I now could even walk to the end of the ward to say goodbye as I was wire free!
Day 10 (3rd Nov) Well what a difference a pacemaker makes! One of the device (pacemaker) specialists came round and waved an antenna over my shoulder and was tapping away on a laptop and advised me I might feel different sensations as he was changing my pacing, all was good and off he went! Cannula’s removed, old remote pacing wires removed, the pharmacist was sorting out my ‘take away’ bag and everybody was talking about my discharge the following day! Everything was now going into overdrive! One thing that was difficult to do with all my goings on was to strike up much conversation with other patients to break up the monotony but these last few days I got chatting to ‘Bill’ from Essex way and he had a bypass op and was a retired London Underground Signaller, so with me being a bit of an anorak at times with trains we had some good chats in that short time lol! Can’t forget to mention this would probably be Sean’s last visit to see me that evening, and I think I even gave him some of my kit to take home!
Day 11 (4th Nov) Well it was now waiting for the Doctors rounds to confirm everything, and as sure as eggs is eggs it was confirmed that once all the formalities were done I would be leaving that afternoon, yippee! It was then a race, I wanted a shower and get ready to feel Human again and Barts wanted my bed!! I managed to sweet talk one of the Nurses and just got everything done and then in an instant they were turning my little bit of space round! To the day room it was with bags in tow waiting for the discharge paperwork and chat, then for Anne and Sean to turn up to get me home! I think around 4ish everything was done and dusted apart from the bombshell of can you come back on Monday to check your INR no. for your Warfarin dosage (I now had to take anti coagulants for life due to the mechanical heart valve and the risk of clotting), oh well a little trip back to Barts could be tolerated! We decided to risk the train back home so my first venture out into open air since I was admitted was in pouring rain walking to City Thameslink station. Nothing like a good plan, got to the platform and there was a train waiting and even got a seat at peak time! As I said I can be an anorak with trains and I love the new Thameslink/Siemens trains and even had been offered a job with them before Gatwick offered me a job after leaving Heathrow. My Father in Law picked us up at Three Bridges and finally back home. It was quite weird, the hospital wanted me to be ‘nursed’ for at least a week or two and I had a regime to follow, like I couldn’t lift anything, only one cupful of water in the kettle if I had to make tea myself etc. I was to sleep in the spare room as I could only initially sleep on my back because of the healing of my sternum so I was not allowed to sleep on my side. That first night was weird, no alarms or noises so getting back to a sleep pattern was going to be different. I very rarely have dreams or nightmares but that first night I had a dream thinking I was drowning, not good! Anne looked up some things about this and it could be related to all the trauma I had gone through, thankfully that was the only one.
Weekend 5th & 6th Nov – I was now having a few visitors but nothing too much on this weekend but it was good seeing my Grandson, Dylan who had been strongly briefed not to jump on Grandad and has time went on he said he couldn’t play with me because of my ‘Scratch’. I was being waited on hand and foot lol! I think Anne was on edge looking after me after all I’d been through.
Monday 7th Nov – As requested I returned to Barts with Anne, I was ok walking but just taking things easy. Had the blood test and they also checked my wound and did an additional white blood cell check. Back to Three Bridges it was as I couldn’t have a jolly in London at this early stage! That evening I got a call from Dr. Kirsty Bromage, who is a fantastic young lady and I hope she does well in her career, saying my INR was 1.6 and too low (should be between 2 – 3) could I come back tomorrow for a Clexane injection to balance things. I had relations coming to visit me on the Tuesday and so after several phone calls Kirsty had arranged with the Crawley Hospital Walk in centre for me to go there on the Tuesday for the injection and return to Barts on the Wednesday.
Tuesday 8th Nov – Rebecca took me to the walk in centre in the morning and am I not surprised the information from Barts had not hit the operational team so lucky I had taken my discharge notes and after a bit of explaining they gave me the injection (it’s the one they do in the stomach, lucky there’s a bit of excess there lol!). The afternoon was pleasant as my Aunt & Uncle came and saw me, the last few of my closest relatives. Just as they were leaving I got a phone call from Crawley Hospital and finally all the info had got through and they were supposed to give me a supply of self-administering clexane injections as well, didn’t fancy that much! So Rebecca took me back to Crawley Hospital and I was duly supplied with the syringes and shown how to administer them, nope still didn’t like that though!
Wednesday 9th Nov – Well it was back to Barts for another INR test this time with Rebecca.
No issues getting blood test done and didn’t hang around so headed back to City Thameslink station to return home, or so we thought! When you’re about to go down the escalators to the station and somebody comes up and say’s don’t bother there’s no trains running you think I don’t need this, I was still only five days out of Hospital. Rebecca made me wait at the top of the station and went down to find out, and sure enough City Thameslink station is the transition between overhead lines and 3rd rail and there had been an issue with the overhead lines and nothing was getting through, argh! Please not today. She was told there might be one shortly at Blackfriars that would turn round for Brighton or we would have to go to London Bridge. So no choice, a walk to Blackfriars station and hope we would get the relevant train, this was more walking than I should have been doing at this point in time. We got to Blackfriars and made enquiries and there was a real chance we would get a train then Rebecca couldn’t find her train ticket, she had lost it on the way to Blackfriars so we couldn’t mess around and quickly coughed up for another ticket, it was proving to be a challenging day! The good news was a train turned up from Brighton and was turned around to go back so we were in time and on board. Never felt so relieved to get back home. Better news came later when Kirsty phoned me up to say my INR was 2.8, and so told me what dose to take until regular tests were set up locally. The end to the day was chilled with Dylan coming round to see some fireworks!
10th – 13th Nov – Pretty uneventful days, just following the orders from the Hospital and chilling.
Monday 14th Nov – Was the start of my local blood tests that I will be having for the rest of my life.
Tuesday 15th Nov – Received a call from East Surrey Hospital stating my INR was too high (3.9) and had to arrange an swift prescription from my Doctor of lower dosage warfarin to get my level within limits.
Thursday 17th Nov – I had to go to my Doctor as one of my drain tube wounds had started to weep and was concerning me. A swab was taken for checks and prescribed antibiotics.
Friday 18th Nov – This was a pleasant afternoon as Anne had ‘won’ an afternoon tea for two at a new Tea Shop in the town, nice to get out with no medical reason at the heart of it!
Saturday 19th Nov – Anne went out to a local fund raising bash and I gave her some money for some raffle tickets and hey presto we won a Mercedes for a weekend; I have yet to take it up but must do something very soon!
Monday 21st Nov – Anne was now going back to full time work and I didn’t need ‘full time care’ but our good friends Lyn & Chris were coming round regularly to help out, along with Rebecca when she wasn’t working.
Friday 25th Nov – Saw a Nurse at the Doctors Surgery as I was still having wound problems and prescribed dressings to try and help. A long standing friend, Joe, popped round to see me, he has a pacemaker and now at the time of writing this (long overdue) he has some more heart issues and awaiting tests / pending surgery. We had a good chat about our current situation and the past!
Saturday 26th Nov – This was quite a poignant weekend as prior to me knowing my situation that would evolve I was going to Benidorm with Anne, Lyn and Chris to do a 10km run but alas I couldn’t even take the risk flying out there so I told Anne to still go there with Lyn and Chris for a break and Rebecca and Sean would keep an eye on me. To drown my sorrows that evening Rebecca, Sean and Lucie all joined in for a slap up Chinese takeaway!
Sunday 27th Nov – There was a Santa and Elves charity run at Tilgate Park for our local hospice, St. Catherines, and many of the running club members I’m part of (Worth Way Runners) were taking part. It was great meeting up with many faces I hadn’t seen for a long while and was a pleasant morning. Sean then went and bought me a MaccyD for lunch and we then went to a garden centre and bought a Christmas Tree. The afternoon was spent decorating it with support from Sean, Rebecca and Dylan! To top the day off Sean made some wraps which certainly were tasty.
Monday 28th Nov – Had another appointment with the Nurse at the Doctors Surgery about my wound, new dressings and another swab and was told to see the wound centre at Crawley Hospital as it was now beyond the remit of the nurse. Had lunch with Rebecca and Dylan and later that day an old work colleague, Mark, popped round for a meet up.
Tuesday 29th Nov – Not an outstanding day but in the evening the Worth Way Runners met in the local pub after training and I popped up there to say hello, and alas I had my first pint since surgery!
Thursday 1st Dec – Whilst some of my days now where uneventful my Running Club carried out little challenges to keep people motivated with their fitness & running and the December challenge was called the 12 miles of Christmas. Basically in a period of 12 days before Christmas you ran a mile in Christmas attire! Whilst my ability to run was not possible at this time, I walked a mile in suitable attire to help my rehabilitation and motivation.
Friday 2nd Dec – It was back to Barts today for primarily a pacemaker check. This was all ok but I was still having problems with my drain wound and there was an ‘open’ clinic at Barts and went to see them. They ended up quarterising the wound and gave me some advice on dressings. Whilst I was not on any cocktail of drugs they had prescribed Amiodarone Hydrochloride initially (along with Ramipril & Warfarin) which I believe is to help the stability of the heart but over a period of time can react with sunlight which I didn’t like the idea of! Conversations on this day reached agreement that there was no need to renew the prescription for this which was a relief. That evening was a great night as I went out for a meal with an array of old work colleagues and I was the topic of many conversations!
Weekend 3rd / 4th Dec – I ended going to a party on the Saturday and with all the news that had gone around about me I was the subject of a lot of conversations again, but I did get the chance to treat myself to a few pints! On the Sunday I was even able to look after my Grandson, Dylan, for a little while. I also took my problem wound dressing off and things were improving!
Week commencing Monday 5th Dec – I was now having to renew fit for work certificates and my occupational health dept. from work was now in contact to start looking at where my rehab was going. There was one downside of this week, I had caught a cold with a hacking cough and although a lot of things were healing it did put some stress back on my sternum which wasn’t pleasant.
From this point on I stopped strictly Diarising events but have still noted highlights, issues and milestones.
Middle of December I started the ball rolling to go to rehab events with my local hospital, this was approx. a 5/6 week course of talks and info about your heart and what’s happened on one of the days and a physical session on another day. These were very informative and helpful in understanding some of the trauma you’ve had.
On Saturday 17th Dec I returned to parkrun to marshal and was given a great reception and mentioned in dispatches on the morning race briefing, very humbling. Because of my willingness to be open on social media a lot of people even in this area knew about all that had gone on!
Also around this time we had our Worth Way Runners Christmas Bash and again another great get together to get me out and socialising ( and a couple of drinks)
Christmas was a nice family affair and my recovery had been going well and saw the New Year in as well in true party tradition at a local social club.
2017 – Turning the corner
I wanted to start having a bit more independence and had filled in a form informing the DVLA of my condition so I could look at driving again and received a letter dated 11th Jan stating there was no problem with me driving which was great news.
On the 28th Jan we had a family wedding in Leeds so my driving skills were put to the test but there was even more to my wife’s disgust on the morning of the wedding, there was a parkrun (Temple Newsham) only up the road and with Sean, Lucie and Rebecca happy to take part I was left with no choice, my first parkrun since surgery at a course I didn’t know and not knowing how I would feel afterwards!! The run was duly done and I did struggle and did feel a little uncomfortable but still achieved a time of 46:01, then it was back to the hotel for breakfast and get ready for the wedding!
One thing that was starting to take place now was dialogue with my employer about returning to work especially as I had only been with them for a year and my sick pay was going to stop soon, but there was a bigger bombshell, it’s called Electromagnetic Radiation. My job needed me to quite often work near motors or go into switchrooms which all have the ability to emit EMR. The HSE have guidelines on this but with a pacemaker there are risks unless surveys in all areas you work have been carried out. Surveys were carried out, the manufacturer of my pacemaker in the US was contacted and many meetings with my occupational health dept. It was not looking too optimistic to return to my original job!
On the 7th Feb I had been invited to a critical care follow up meeting at Barts of which I didn’t have a clue on what it entailed but it ended up being a very constructive meeting. Anne came with me and they allocated an hour for this and it covered just about everything and anything, what’s happened, the future, concerns etc. and we even ran over time! One item that was also discussed was I interested in attending a critical care day where I would meet other patients and talk through our experiences and also how Barts could improve the service they give. I confirmed my interest and they would contact me when this was set up.
Another milestone in February was on Saturday 11th I returned to my home parkrun at Tilgate to run! This was a great feeling and I managed to get a time of 45:10, I still didn’t feel great at the end of it but I guessed this was a building up exercise issue. This also prompted me to think about taking part in formally organised runs. The Cancer Research Winter run in 2016 was the last 10km I took part in before I was diagnosed with my condition and clearly I couldn’t take part in 2017 so the challenge of doing it in 2018 was without question and I duly applied!
It wasn’t long before March was upon us and I now had taken up a recommendation from my Hospital rehab program to do the 10 week program at my local leisure centre which was aimed at cardio but also building up strength. On the 10th March I had a meeting with one of the registrars from the Cardio dept. at Barts and I was formally discharged from their care and back to East Surrey Hospital, the only need to go to Barts was for pacemaker checks.
There had been lots of dialogue and meetings with my employers and it was looking like I would not be able to return to my job and other engineering roles would be difficult again because of the risks from EMR and I would be put on a redeployment program. Basically they would not ‘make’ a job for me and I would be given support for applying for other roles within the company but generally this is time bound and ultimately you could be ‘let go’ typically around the 3 month area! This was concerning as I still had bills to pay and although I accrued a reasonable pension I wanted to avoid taking it at this time.
April saw a few more visits to Barts, the 1st April was the day they set up the critical care day they had spoken to about and I took Sean as he had been to Barts everyday whilst I was there. It was very interesting and a range of experiences. One of the patient speakers had been in a coma for best part of a month due to heart issues and how he had to learn many things again and it made some of my experience feel very low key compared to that, it was a very worthwhile day. A few days later I was again back at Barts for a pacemaker check. They are quite bizarre as they just put the antenna over your shoulder and communicate with the pacemaker and seeing if there had been any issues. Evidently I had one minor alarm in February but it was so insignificant it was not anything to worry about. I had a discussion about running and does the pacemaker affect this. They gave me the impression my heart could still go above the pacemaker parameters and not affect my running however they moved my upper pacemaker setting to 130bpm.
I had still been trying move forward on the job front and applied for some roles and there was also a temporary role available that I expressed interest in so the ball was rolling.
May was soon upon us and we had a week in Tenerife with our friends Lyn & Chris booked which was a great break for me, and even with all my issues and concerns there were no changes to my travel insurance cost, result! When we were at the airport I had some gift vouchers and the price for a garmin watch with a heart rate monitor was very competitive and so I felt this was a good route for me with my running and seeing how my heart rate was dealing with this exercise. Chris and I even christened it in Tenerife by going out for a few runs! When I returned things were moving with the job front, I was going to assist in a temporary role and also applied for a job that ran alongside Engineering which was the closest I was going to get to my roots. I got an interview and then an offer of one of the two posts advertised but the rules changed on the job. Unbeknown to me at the time there were reviews going on about the section so they only offered me a 6 month fixed term contract which wasn’t ideal but it would keep a salary coming in for now. My official start date was 12th June although I still helped out with the temporary role as well as some of this tied in with the new job.
The next big thing on my agenda was the main holiday in Cuba that had been cancelled last year. We were going with Lyn & Chris in July and we had been there before and loved the place, and it didn’t disappoint again. I’m not a figure of great macho but being by the pool with my great scar on view didn’t worry me, it was more important keeping sun block on it as it wouldn’t take any punishment from the strength of the sun out there. Chris and I also got a few small runs done whilst we were there! As I’ve freshly written this latter half of my story the Hotel took a hit with the recent Hurricane but are bouncing back and can even see updates of how things have progressed on facebook!
When we got back from Cuba it was almost August and there was more on the agenda! There are a series of runs called the Rock ‘n’ Roll series and there was one in Dublin in August and quite a few of our running club were going, there was a 5Km run on the Saturday and a 10Km or half marathon on the Sunday. You could enter on both days if you wanted to. I had taken the plunge to do the 5Km as this was the same as a Parkrun distance and I wasn’t ready for any other distance. It was a great weekend and most of us managed to do the Waterstown Parkrun on the Saturday Morning and then jump into a Taxi to Pheonix park to then do the Rock’n’Roll 5Km, manic but fun!
September came and went without much to talk about, I was doing Tilgate parkruns but frustrated that I was unable to improve my times very much and even Sean who had done a degree in Sports Coaching & PE was looking at my heart rates on runs and curious that contrary to what I was told my heart rate very rarely went above 130 bpm and appeared to restrict my running times.
In October my next pacemaker check was due, so on the 4th I went back to Barts. This time I was armed with heart rate print outs from running as I was interested with their feedback especially with my inability to improve my times. It was once again a very constructive and there were no issues with my pacemaker, but we discussed the settings and they upped my top level to 150bpm!
What a difference 20bpm can make, the next night I went to my running club and noticed an improvement but then it was when I went to Parkrun on 14th Oct and achieved a time of 33:44, my best post-surgery time!! With this sudden improvement, there was a great number of our running club doing the great south run on 22nd Oct and I decided to enter at the eleventh hour! As I mentioned earlier I couldn’t run it in 2016 due to my restrictions imposed upon me and I was going into Barts the following day. I hadn’t done a great deal of training for this run but a time of 1:49:33 gave me great satisfaction. The next run I had booked was the Cancer Research Winter Run in Feb 2018, this had been the last formal run in 2016 I did before being diagnosed with my heart condition, so it was important to do this run and turn another corner.
So a year since surgery has passed, now aged 57 and I am up to real time with my blog / diary / story! There really isn’t much more I can add as life continues with challenges, some related to my post-surgery era and others to just normality! Nowadays a visit to the Dentist requires strong antibiotics an hour before due to the risk of heart infection, remembering my tablets every evening which can be a challenge if I’m going out for the night! I still don’t know if I will have a job after Christmas but I shall cross that bridge when I need to. Whilst I’ve been discharged by Barts, my local trust should be just seeing me now and again (possibly just once a year) but they have sent me so many appointments then cancelled them it’s over a year now to my next appointment in June 2018 so I won’t get too optimistic! Fortunately I don’t feel any urgency to see them.
So I shall sign off, for those who want to use extracts of this or inspiration for those who are going through similar ordeals please feel free to use this. I sometimes feel very humbled with life but also feel very normal. Many people say why do I still go to work, go out and enjoy life after what I’ve been through, maybe that will happen soon! Some of my ordeal is already fading a little in places so by writing this it is my own piece of history that I can look back on when I need a reality check or if I want to tell my story.
Roy Truett – My Snapshot of life February 2016 to November 2017
With special thanks to the following people:
Anne, my Wife for enduring everything
Sean, my Son for visiting everyday whilst in Hospital and support
Rebecca, my Daughter for support and running me around
Alex for a visit after finishing work
Chris & Lyn for support at home, watching videos and Costa visits!
The Essex relations for a visit
Worth Way Runners for kind words and support
The social media fraternity that I opened up to and their good wishes
The whole NHS team, Surgeons, Doctors, Nurses and the entire support network