Back in July 2012 I suddenly developed vision problems in my left eye. As my eyesight is very important to both my job and my personal life I decided to go to A&E at Basingstoke hospital. During their various tests they discovered that I had high blood pressure (which turned out to be the reason for my vision problems which were resolved when the high blood pressure was addressed) and that there was something not quite right with my heart. This post is about how the vision problems ultimately led me to major heart surgery and my experiences with the procedure.
Through an echocardiogram it was established that I had what is called a mitral valve prolapse, at the time with mild to moderate mitral regurgitation (or in layman’s terms, one of my heart valves wasn’t closing properly and blood was flowing back into the chamber). As there were no significant symptoms and impact at the time the cardiologist decided to annually monitor developments. During 2015 it was noticed that I was possibly also developing an irregular heartbeat. Following my annual echocardiogram in March 2016 things started to get more serious:
The mitral regurgitation had worsened and there were a few other signs my cardiologist, Dr Golledge, was concerned about. Both a coronary angiography and trans-oesophogal echocardiogram were arranged for June 2016 to take a closer look at the condition of my heart. During those tests it was established that the mitral valve prolapse had worsened to severe mitral regurgitation and that I had developed atrial fibrillation. I was referred to the Royal Brompton Hospital in London with a recommendation to repair the mitral valve prolapse with an operation (this procedure isn’t carried out in Basingstoke, hence the referral).
Throughout the first half of 2016 I also noticed more and more symptoms typically related to mitral valve prolapse (the very first signs were probably visible in 2015, but I didn’t really notice them at the time): My energy levels were reduced. I noticed increased swelling in my ankles, in particular towards the evening (it usually resolved over night, only to return the next day). When lying down for longer periods (in particular over night towards the morning) I developed a cough and breathing difficulties. When exercising I got out of breath increasingly easy, towards the end I even had to stop my daily morning run and resort to walking only (I had been running for 30-40 minutes every morning for over 30 years, it was quite a blow when I couldn’t do it any more).
In early August I had an appointment with Mr Anthony De Souza, the surgeon who would perform my heart repair surgery. He explained the procedure and outlined the risks and benefits of undergoing the operation. We agreed that proceeding with the operation was the best option and the wheels were set in motion…
As I had private health insurance with CIGNA through my employer Verizon I decided to pursue this route. After a few phone calls CIGNA confirmed that they would cover this treatment and in early September the date for the operation was agreed, Thursday, the 6th of October 2016 would be the big day.
With just over a month to go until the operation I had a lot to think about and to prepare. To start with I knew I was going to be off work for several weeks for the operation and subsequent recovery. I had already regularly updated my manager about what was happening, so I could now give him confirmed dates and we discussed coverage and other areas. I also read up on the procedure as well as recovery as much as I could from some excellent online sources as well as brochures by the NHS and the British Heart Foundation. Then there were a few practical things to consider: I learned that I wouldn’t be allowed to drive for at least six weeks and would be limited in how much I would be able to lift (the guidance is not to lift anything heavier than 10lbs/4.5kg for at least the first six weeks). For food shopping I decided to use the online/delivery route (several of my neighbours were using Sainsbury’s delivery, so I knew my area was covered). I also arranged for a domestic help to come in to help with cleaning, laundry, changing my bed and a few other things (more about that in a later entry). In addition I started to rearrange some of my furniture and set up at home to make it easier to reach things and avoid having to twist my upper body too much (again something outlined in the guidance about the post-operative care). I also bought a folding camping chair (rescued by the local Scouts from the things people had left at the Reading Festival) to leave on the first floor landing if I was struggling to climb the stairs (I live on the second floor).
Through all this I also had some brilliant moral and practical support from my sister Imke through email and long Skype conversations. Quite early on she also told me that she would take a week off work and come over to support me after I was discharged from the hospital. We agreed that she would come over the day before I was going to be discharged and we would travel back to my home together, where she would support me for a few days before returning to Germany.
Mid September brought the cardiac surgery preadmission clinic at the Royal Brompton Hospital. I travelled to London on what turned out to be the hottest September day for decades for an assessment of my health status to ensure I was ready for the operation. This included a detailed consultation with a nurse, a blood test, an echocardiogram and a chest x-ray. Everything turned out to be fine so nothing stood in the way of the operation going ahead.
Soon Wednesday the 5th of October arrived, the day of my admission to the Royal Brompton Hospital in London. I arrived just before lunch, the rest of the day was taken up by a few last tests and preparations for the surgery first thing the next morning. As my operation was scheduled for 8 o’clock in the morning I wasn’t going to have any breakfast, in fact it was no food after 9 PM and no water after midnight (if memory serves me right). After a shower with antibacterial soap it was time for bed although I didn’t sleep as well as I had hoped for, my nerves finally catching up with me.
Finally the big day had arrived, the day of my surgery on Thursday, the 6th of October. I had another shower with antibacterial soap and removed the hair from my chest and groin with a clipper I was given. After a short wait my bed was wheeled to the wing with the operation theatre, where I was transferred onto an operation table. Considering the rather nervous night I was very calm and just thought let’s do this (reminding me of a parachute jump I did once, where I was extremely nervous while boarding the plane and during the takeoff, but couldn’t wait to jump once the door was open at jump height). The anaesthetist gave me a first injection and within a few minutes I was gone.
I obviously don’t remember anything of the operation, which to my knowledge took about 4 to 5 hours. Mr De Souza and his team successfully completed the mitral valve repair, AF ablation and exclusion of left atrial appendage (for those interested in the exact treatment). My post discharge letter contains much more detail, some of which sounded quite scary to me as a non-expert, although to a highly experienced cardiac surgeon they are probably routine. After the operation Mr De Souza was so kind to call my sister to inform her of the successful operation, she then informed my manager to update my colleagues and also posted a note on my Facebook account for my friends.
Almost exactly 24 hours after the anaesthetist had sent me to sleep the recovery team started to wake me up again on Friday morning (this was slightly different than I had been told originally, the original plan had been to wake me up in the evening after the operation). I was back in a hospital bed with tubes, drains and cables connected to me seemingly everywhere. While I had known this before the pure number of them still freaked me out a little bit. I think I was given a cocktail of pills and injections by the nurse who was looking after me. I was also given a breakfast menu and soon it was time for breakfast in bed (I think I had scrambled eggs, toast, tea and porridge). It tasted very nice, which was a relief as in the information material I had read that some people temporarily lose their sense of taste. At least something that hadn’t happened to me.
Late in the morning the recovery team decided that they were happy and I was moved to the high dependency unit (HDU) to continue with the postoperative recovery. The time I spent in the HDU is a bit of a blur now, as I was still tired from the operation and you don’t get much sleep because of the nature of the environment (there is always some lights, various noises and other things disturbing you. This is not a criticism, it’s simply the way it is in such a station). Pills and injections continued throughout the day and night (some of the syringes are scarily huge!) while my chest drains and catheter were regularly checked. At times I was encouraged to get out of bed and sit in a chair to help with the recovery. For a while I was wearing some kind of breathing mask to help my lungs to get back to normal after the operation. During mealtimes I was pleased to find that I hadn’t lost my appetite and as already mentioned my sense of taste. Throughout the whole time the nurses were extremely helpful, for me in particular it was great that they explained as much as they possibly could about what was happening and why.
If memory serves me right it was late Saturday morning or sometime during Saturday afternoon that two of the nurses took me on my first short walk after the operation. It was only a short walk down the corridor and back, but to me it felt like learning to walk again and immediately completing a marathon. While you read and hear before about how tired and exhausted you will be it only really hits home when you actually experience it.
During Saturday afternoon I also heard the news I had been waiting for, my recovery had progressed enough for me to be released from the HDU and transferred to the normal ward. This included removal of the two large chest drains (a smaller one remains until the temporary pacemaker is removed) and the catheter. In particular the removal of the chest drains isn’t a pleasant experience, but the nurse did an excellent job to make it as painless as possible.
Mid Saturday afternoon I was transferred to the Sir Reginald Wilson Ward to continue my recovery. I was tired, battered and bruised (in particular my left arm was very colourful, I think it took three weeks to fully disappear), but another step in my recovery was complete. Having access to my smartphone and tablet again I sent a short email to my sister (I was too tired to call her) and posted a short update to Facebook to let my friends know about my progress. The responses almost overwhelmed me, there was so much support and kind words. A huge morale booster when I was feeling low at times.
The next few days a kind of hospital routine developed, driven by meals, medication, tests, blood pressure measurements, ECGs and progressively longer walks around the ward. The walks were interesting in a way as I was still hooked up to the temporary pacemaker and a smaller chest drain. This made walking and a few other activities a bit cumbersome as I had to carry both around with me. This in combination with the various tubes still coming out of my neck and arms sleeping also proved to be a challenge (not to mention the various bleeps and other noises you almost constantly hear from somewhere in a hospital. Again this isn’t a criticism, simply stating a fact). Washing/showering also proved to be quite a challenge: to start with I couldn’t get my chest wet because of the temporary pacemaker and the chest drain. Standing in the shower (I tried to use the chair in the shower but that didn’t really work for me), keeping my balance while lifting a leg to wash a foot and at the same time keeping the pacemaker dry was very tiring. Luckily a nurse was to hand to help me, something I would have never thought of needing for something as mundane as taking a shower a few months ago.
As my recovery looked to be going to plan and it seemed I was going to be discharged on the Wednesday or latest Thursday my sister booked her flight to London for Tuesday. Unfortunately my heart then decided I needed a prolonged stay in the hospital by taking a bit longer to fall into the correct heart rhythm. Until that happened I couldn’t be disconnected from the temporary pacemaker. This meant a few unexpected days in London for my sister, while she spent the late afternoons and evenings with me she used the days to among other things visit the Natural History Museum, the Horse Guards and the Royal Mews. While it wasn’t what we had originally planned it was great to have her around and I’m sure it helped with the recovery.
Throughout my time on the ward the nurses, doctors and various other support staff were exemplary. Everyone was extremely helpful, courteous and supportive. The doctors and nurses patiently explained why certain things were happening (or not happening for that matter), which I found very helpful to calm my nerves and get through the days.
I think it was the Wednesday when my heart finally fell into the correct rhythm, by Thursday my heart rate had picked up to a rate they were happy with, so on Thursday evening Mr De Souza decided that the temporary pacemaker and the remaining chest drain could be removed on Friday and I could be discharged on Saturday. At lunchtime on Friday the temporary pacemaker was removed, followed by the chest drain later in the afternoon. The relief and the feeling of freedom was immense. In the evening I took my first proper shower for over a week and also shaved off the ‘eight-day beard’ I had grown since last shaving just before the operation. Another huge step towards normality had been completed.
Various admin was completed during Saturday morning and after a last review with Mr De Souza at lunchtime I was ready to leave early in the afternoon. We used a private hire car for the journey home as travelling by train wasn’t really an option considering how exhausted I was and that I wasn’t able to carry any luggage.
More about the first few weeks of my recovery at home in another entry. To finish this entry I would like to again thank all the staff at both Basingstoke hospital and the Royal Brompton Hospital in London who helped me through this journey so far. Also thanks again for all the support from my friends, colleagues, family and in particular my sister Imke.