The beginning – Part 2

Right, where were we, oh yes those lovely days when we had a diagnosis and drugs that should control it. It will come as no surprise that the calcium channel blockers didn’t work for me and so began a year of trialling different drug types, different brands, taking them at different times of day etc etc. The side effects of the various tablets ranged from nothing, to my hair falling out, my ankles swelling, feeling sick or having a constant headache, this on top of the fact I was already feeling very unwell.

During this time I was still seeing a number of different consultants about the auto immune problems, at one point I had a cardiologist, a professor of cardiovascular surgery, a professor of cardiovascular sciences, a neurologist, a rheumatologist, a gastroenterologist, an orthopaedic surgeon, a doctor of nuclear medicine, a pain management consultant and a partridge in a pear tree. I averaged about 3 hospital appointments a week, which is hard work when you are not feeling well. Now a days I have just a cardiologist, pain management specialist and an orthopaedic surgeon. Although the 2 professors and the neurologist do still consult on my treatment.

The orthopaedic surgeon might seem like a strange one, however part of the auto immune problem I have means that my joints are hyper mobile, for those in the know on the Beighton test I score a perfect 9/9 – though apparently top marks aren’t a good thing. What this also means is that my ligaments and cartilage around my joints are particularly weak, this year I had a hip arthroscopy to repair a labral tear that I have no idea how it happened, as I have spent the last 16 months resting. Next week I am seeing an orthopaedic surgeon who is a shoulder specialist as my shoulders continually slip out of the joint and separate (sublux) doing the most mundane of things like sleeping.

I still hate that there is not a name for the auto immune problem and I am still trying to find out what it is, although my wonderful pain management specialist is focused on treating the symptoms rather than putting a label on it. The great thing about doing a PhD is that you have access to the majority of the university libraries both nationally and internally and access to all published peer reviewed journals. My doctors may not think this is great as I repeatedly bring in articles to appointments asking their opinions etc and I frequently promise them that I will stop researching and trying to name this condition. Of course that is never going to happen until I have a name – I have some more papers to take to my next appointment as I yet again think I have found what it is.

The arterial spasms do not just happen in my heart they happen all over my body including in my brain, this can result in anything from a migraine to parkinsonism’s. I also get secondary Reynaud’s in my hands and feet, last year during winter I developed what resembled frost bite due to the vascular comprise in my feet. I also use the Reynaud’s as an excuse to have a heated steering wheel in my car – you always have to look on the bright side.

I have frequent visits to A&E often by ambulance which I really don’t like, but as mentioned hubby is a paramedic if he is calling an ambulance then things are bad. The first time I got taken in by ambulance, he followed in the car when I say followed I mean he stayed home to lock up and then proceeded to beat the ambulance to the hospital – anyone who has driven with him on blues will attest to his skills. A&E trips are frustrating, not only for me but also for the doctors as they want to relieve the pain but I don’t respond to anything, morphine just makes me sick – at the moment Entonox seems to be the best we can do. A&E visits can be frustrating from our point of view as many times doctors have not heard of this condition, so it is an education process. The reason for the A&E trip is that if a spasm goes on for a prolonged period of time it can cut off the blood supply to the heart which can result in a cardiac arrest & dangerous arrhythmias so sometimes I need a bit of extra monitoring and to have my Troponin levels taken. With a paramedic husband and a best friend who is an A&E nurse (Matron as I like to call her) I get very little choice about being taken off to hospital – they nag, A LOT!

At the moment I am on a concoction of tablets, 18 a day, so I rattle when I walk. The ironic thing is that none of these tablets are to treat the heart condition, they are all for the auto immune condition or because of previous surgeries.

The biggest concern is that to date we still don’t have a treatment plan for the heart condition, the pain management consultant tried a stellate ganglion block last week, which was a trial to see if I might be suitable for a spinal cord stimulator (SCS), but unfortunately this has had little effect. So I need to speak to the consultant to see if that now takes the SCS off the table completely. There are a couple of papers on the use of coronary artery bypass in medically resistant Prinzmetal’s cases but it is by no means a certainty that it would work and that is a massive and very risky operation for a slim possibility of it working. We are now well and truly into the left field options of treatment.

So where do we go from here? The angina attacks are getting worse and I suffer with shortness of breath at the simplest of tasks, and swollen hands and feet so the worry is the damage being done to my heart by these attacks is becoming permanent. The biggest concern of all is that a spasm can cause fatal arrhythmias / cardiac arrest / stroke and at the moment the only thing stopping that is us having our fingers crossed.

That rather sobering note brings us up to date, in the next few weeks I have clinic time with the cardiologist and pain management consultant so we will discuss next steps and if there are no more steps then we will discuss what we can do to mitigate the risks.

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