So there it is in all its glory, the lump that is now my pacemaker. It’s healing well, and into the itching stage five days after the procedure.
I took cinnarizine beforehand to offset any possibility of dizziness and Mike drove me to Telford. It’s weird, I’m often more worried about having vertigo than what I’m going in for.
I don’t know what I’d do without Mike. He’s been personal chauffeur and companion throughout all of this since January, and I know I’m biased because he’s my son, but nobody could ask for a better son than him. He had to take time off work to take me to the Telford hospital, pick me up afterwards and take me home again and stay overnight, except we never reached the overnight part.
We were met by the heart team nurses – friendly and cheerful people, I liked them a lot. They were so helpful both before and after the op. The surgeon came down to discuss drugs and the procedure, and he was a lovely, courteous professional. I’d met him before and was impressed by his calmness and patience. He never rushed anything and was willing to discuss everything that needed to be discussed.
Before going in for the op I was given six drugs through a cannula: a steroid and Piriton antihistamine (both to counteract the effects of the contrast medium which is iodine-based and my body doesn’t react well to iodine), an antibiotic and a painkiller. Then as I was taken in I was given a sedative, which I welcomed because of feeling nervous. Everyone who is going to have a CRT-D is given sedatives. The next injection was the dye, the contrast medium, essential to show the surgeon where the device leads would be positioned in the heart.
I was sleepy but not out of it. I felt the needles giving me local anaesthetic and that hurt although I didn’t react. The nurse covered me in a drape with my head turned slightly to the right and that was great because I didn’t want to see what was going on. I felt everything, from the pushing and pulling to stitching, but not as pain. There were odd metallic noises like wires against metal, things being clipped off, the snick of scissors or another metallic implement cutting things other than tissue and then screwing things in place.
The surgeon got the first couple of leads in. He had trouble positioning the third lead into the left ventricle, saying it was because my heart anatomy was ‘rather different.’ It would be; it’s enlarged. The stitching seemed to take ages. I’m not sure how the device is stitched in place but my guess is there are internal ones as well as skin stitches. I haven’t checked on that. Dressing applied, I was taken to the recovery room and the same lovely nurses.
Two hours later I felt a bit woozy. I’d been advised to take my regular drugs as normal, and this might be relevant later, which is why I’m detailing the drugs taken within the space of half a day. Besides the drugs through the cannula I took furosemide (diuretic), metoprolol (beta-blocker), paracetamol, spironolactone (diuretic), ranitidine and some more cinnarizine. I was also give some flucoxacillin antibiotic and told to start that at home, which I did. A grand total of 14 drugs in twelve hours.
Mike picked me up around 6pm to take me back home. What happened next has been the subject of debate, because within ten minutes of arriving back I felt faint. I was sitting at the table reading a letter, and then flat out on a chair recovering from faintness and feeling dizzy and sick. That passed and we watched a film. It got about two-thirds through and I was reclining on the sofa when the faintness occurred again, and this time it didn’t go away. It began with feeling hot. As well as feeling faint I was then sweaty, cold and clammy, couldn’t focus my eyes and couldn’t hold the phone when the ambulance people wanted to speak to me, so they took me back to Telford to find out if it was anything to do with the pacemaker.
Monday evening, 19th June, and I was back in hospital, into a very different ward and atmosphere. The two ambulance guys were fantastic on the way there and for most of the trip, and on arrival, I could hear the banter going on between them and Mike, though I couldn’t make out a lot of it.
The A&E unit at Telford is much bigger than the one at Shrewsbury. It was crowded as expected and we waited in a corridor as I’d done at Shrewsbury, but a cubicle was soon free. I was sent for an X-ray to see if the leads from the device had pulled out into the wrong position. It was all fine. Mike stayed with me until the early hours and it was after he left that things took a downward turn.
I don’t know if I’m one of just a few to experience this, but it seems to me that women patients are treated differently to men. Over the decades my experience has been that many medical professionals and workers are more willing to dismiss a woman than a man, and concerns and diagnoses are frequently pushed into the anxiety-depression-tension range if they are dealing with a woman. I suspect they don’t do that so much with a man and that many women are labelled as neurotic or suffering from a mental problem rather than a physical one, even when the presentation is that of a physical problem.
The most common diagnosis given is anxiety. I was given that diagnosis over periods of time when I had symptoms of an inner ear disorder, norovirus in its early stages, ME and early symptoms of heart failure. It’s a stigmatising label on medical records that follows you around, year after year, despite physical problems being identified later as the cause. All too often, we are not taken seriously. My mother’s early symptoms of polymyalgia were dismissed as depression because her ESR blood test results were false negatives, ie showed normal results. Despite clear symptoms of polymyalgia it was not treated until it became life-threatening and she developed temporal arteritis, inflammation of the arteries, which can cause a stroke. Yet when my father exhibited the same symptoms, before the blood test confirmed it, he was given immediate treatment.
The reason I’m saying this is because I had tests on the pacemaker, on the heart and multiple blood tests over three days all very thorough, but when the tests ended and nobody was any the wiser, guess what the conclusion was? A ‘vaso-vagal response’, which is the same thing people get when fainting at the sight of blood. It means over-excitation of the vagus nerve, the longest nerve in the body that feeds into several organs. There are multiple causes of a vaso-vagal response, including a reaction to contrast medium, though I suspect that would happen immediately after injection.
I said that I thought my near-faints might have something to do with an intake of 14 drugs in 12 hours as well as an operative procedure that took 1.5-2 hours, but that was dismissed. I still believe it had a part to play, plus the fact that during the near-faints my heart rate went up from a normal rate of 75-85 to 140 or higher. The pacemaker doesn’t control the rate going up, only down, and as far I know only beta-blockers control a fast heart rate. I was taking just half a tablet of beta-blocker per day and I’m pretty sure it wasn’t enough to cope with symptoms. If you put everything together – travel, operation, intake of 14 drugs, not enough beta-blocker, travel back home when still feeling lousy – I believe you have a perfect storm of physical overload. I think that before people say it’s okay to take your daily drugs they should look at what is being taken in a short time period. The operation drugs were essential, but in hindsight it might have been better to delay the daily ones.
Before I went to Telford I had heard rumours comparing it unfavourably to Shrewsbury, but I wanted to keep an open mind. I found the same kindness and care among most staff at Telford as I have experienced from most staff at Shrewsbury. There are also the tiny minority at both who don’t have a good attitude towards patient care, and unfortunately they tarnish the reputation of the rest. Most of the nursing staff work long hours in demanding circumstances, and I can only admire their ability to cope.
I saw a night shift dealing with two patients who were delirious due to urinary infections, who presented exhausting and difficult situations. One patient was constantly getting out of bed to look for her husband in a non-existent downstairs, her questions and objections repeated over and over. Another one became abusive and violent at being asked if the nurse could check her blood pressure, hitting the young nurse in the face. This is the other side of care that people rarely see, what the staff have to put up with, because although these patients are elderly they can still hurt someone when angry and hostile. During the entire ten hours that this went on, not once did a member of staff raise their voice or manhandle the patients.
At the other end of the scale there are a very few staff who seem to regard patients as an unwelcome interruption to time spent in the nurses’ station when they are on duty, not on breaks. On A&E there was one person who handled patients as though they were lumps of meat and on three occasions he arrived by my trolley and without much more than a grunted warning started pulling me about, even by the arm that I’m not supposed to raise above shoulder height for three weeks. The only time he was courteous was when Mike was standing right next to me.
There is an insane plan to close Telford A&E and rely solely on Shrewsbury. Shrewsbury couldn’t cope with any more influx into their overcrowded A&E department. It’s utter madness and something the government should be deeply ashamed of. The caring staff earn every penny they get and more besides, and if the staff were not expected to slog through twelve-hour shifts there might not be any with uncaring attitudes. I stress again, they are a tiny minority, thankfully. The government should be giving Telford more help, not closing it or departments within it.
Finally I just want to say how grateful I am for this implant. It’s a wonderful gift and I feel it’s already making a difference in this first week. When I get out of bed in the morning I no longer feel as though my legs are so weak they won’t support me, and despite the effects of the operation and the drugs I have more stamina. The NHS has given me the best gift anyone could wish for, that of life. I know my condition will continue to deteriorate long term, but perhaps it won’t be so fast and I may have extra time yet. I thank all those consultants, doctors, nurses and auxiliary staff at both hospitals, from the bottom of my improved heart.
I’ll continue with this blog in due course.