When the doctor tells you there is nothing they can do!
We reached a stage earlier this year where my cardiologist sat me down and told me there is nothing that can be done about my heart condition. After 18 months of trialling all the different possible medications for Prinzmetal’s angina we had reached a point where it is medically untreatable.
The medication either made me very ill, reducing my heart rate in the 20s which resulted in a number of unscheduled and terrifying trips to hospital. When you are being loaded into the back of an ambulance no one wants to hear the paramedics ensuring they have spare de-fib batteries just in case! Or the medication had no effect on the angina.
We also looked at surgical options but a professor of cardiovascular surgery assured my husband and I and my cardiologist that there is no place for revascularisation, a heart bypass in my case. In a person without Ehlers Danlos a bypass would be highly unlikely to work to treat Prinzmetal’s as the blockages in my arteries are temporary therefore the blood flow would only take the bypass route when the artery was spasming and this is not enough to keep those routes open or alive. In someone with Ehlers Danlos there is a high possibility that the grafted blood vessels would also spasms therefore not resolving the issues at all.
There is also the fact that to do any kind of surgery I would have to have (and survive) a provocation angiogram. This would involve an angiogram where they would inject a drug directly in to my heart to induce a spasm. After the last angiogram where my radial artery spammed and would not let go of the catheter, neither myself or my cardiologist are keen to do this. Actually my cardiologist refuses, the hospital he works in refuses and I would have to go to London where they have facilities to perform open heart surgery in case of that sort of spasm again - that doesn't fill me with confidence about surviving. I under play the radial artery spasms, my cardiologist was injecting GTN through the catheter and trying everyone to get it out after what felt like forever but was probably only 15-20 minutes the blood supply to my hand had been cut off and he was moments away from rushing me to theatre. He said it's the worst spasm he has ever seen and my cardiologist is very experienced and has worked in some of the top cardiology hospitals around the world.
So we are left with the option of living with the condition. As you know I have around 15 - 25 angina attacks a day. These are the arteries in my heart going into spasm. These episodes of angina are always painful but the pain level is dependent on how occluded the artery becomes during the spasm. Sometimes it can be over very quickly and other times it can go on for longer and there is no telling when it will happen or when it does happen how long it will last for. Think about a cramp in your calf muscle, the pain is similar to that and sometimes it can come and go quite quickly other times it can take longer to wear off.
We are gradually cutting down my appointments, I used to see me cardiologist every 2 weeks we have now slowly extended that to 3 months. Over time we will hopefully get to annual check-ups and emergencies only. We need to keep an eye on the damage being done to my heart by the angina so I need regular ECGs and echocardiograms.
However, I am left with the prospect that the only thing between me and a heart attack is luck. That is a scary thought to live with, especially as someone who, for a career, evaluates and mitigates risk. Part of living with any chronic health condition is coming to terms with it. It's is recognising that your life has changed for good and within that recognition is almost a grieving process for the life that you had planned in your head. I know and am coming to terms with the fact there are some things I will never be able to do again. For example, I used to ride a motorbike, for those that know bikes - I had a lovely matt black Z750R. I won't ever ride again, it is too dangerous if I have an angina attack whilst riding it will cause an accident, I could hurt myself or worse someone else. Not to mention that the arthritis and dislocating joints also prevents me from riding. I also used to practice a martial art which I unfortunately will never return to, due to the angina and Ehlers Danlos.
The big change is that I may also have to retire from my current profession because it's a highly stressful job and we know that high stress levels and angina do not mix well. At the moment I don't have to cross that bridge but I am acutely aware that I will at some point. I haven't actually worked for 2 years now. Thankfully I am insured against these things otherwise I truly dread to think where we would be now.
I am not one to focus on the negatives so usually I focus on to things I can do. 3 years ago I started a PhD so I am working on that. I took up the violin, although my joints are preventing me from playing, I am having elbow surgery at the end of July and I hope after that I can get back to it. I have also taken up playing the piano.
It Is really difficult to be told by a doctor that there is nothing they can do to help you. After all you go to them expecting them to have answers and to fix you. I think it is equally difficult for the doctor as they are in that profession to help people. I also have a secret weapon on my side in case the worst should happen - I happen to be married to a paramedic, who has a great resuscitation record. We met long before I was ill through martial arts, I can't help but wonder if fate played its hand in that meeting.