The Long Road to Diagnosis – Part 2
Tracking down the problem..
50 years of expectation – the failed and false diagnosis’ I feel that is a massive issue… I am not the only one, but I am the lucky one, however it shouldn’t be down to luck it should be down to instinct and if we insist on using statistics look at the anomalies too…women in particularly not being diagnosed as they are “not the profile” .
I have generally kept fit, never smoked, steady normal blood pressure, resting heart rate of 72 and whenever I have approached 10 stone (which can tip me over the ideal BMI) I have dieted and returned to my 9- 9 ½ stone recommended weight.
So me and my worries have presented a couple of times over the years with potential heart disease symptoms, but in January 2017 I had what I thought was the ”proper flu” I had had some tragic news on the Friday a close friends daughter had died suddenly ( she was just 40). I was very upset and received the news on my own on the way home from Wales where I had been working. I got home and took to the sofa as I had thought that morning I was coming down with something and the awful news had knocked me for six. I didn’t get off the sofa – literally – apart from trips to the downstairs loo, for 4 days. However, I didn’t have the usual cold symptoms hence my own diagnosis of the “proper flu”. I really struggled to find my mojo. 2 weeks later on 1st February I went to the doctors. He ran a “full bloods” to try and get to the bottom of my exhaustion. On Friday 10th February he called me, I had been diagnosed with Hyper parathyroidism (PTH). Hence the extreme tiredness and aching bones.
I went to see Dr Mukherjee (endocrinologist and turned out to be life saver!) quite soon after that (8 March) and she explained the condition and if my levels persisted removal of the Parathyroid glands was a simple op and would sort out the problem. On my return to her in April it was decided that an op was necessary although by now my Blood pressure was up…due to the PTH apparently.
I had the surgery on Saturday 13thMay- which was actually not very convenient as we had a dance lesson/weekend with Anton du Beck.. I am a massive Strictly fan and this had been a Christmas present from my husband. I was so excited, I had already had a dance lesson with James Jordan and loved every second…so a weekend with Anton…..when I contacted the company who organized it they just said basically it was tough and weren’t prepared to re schedule for me …another story which I’m still quiet bitter about….
The op wasn’t successful and instead of being in theatre for ½ hour, 2 hours later the surgeon gave up the search for my elusive Parathyroid glands L. I would need something called Jugular Venus Sampling which was very specialized and would need to be done at Salford Royal.
Over the summer the blood pressure went crazy, always attributed to the PTH. My heart rate was extremely erratic and I reported various incidents when I noticed (thanks to my Apple Watch) it was 130, 140 + and I was just standing by the kettle, or walking across a room. A particularly bad incident was playing golf ( well actually not playing golf cos I felt so ill) with my friend Fiona. Malcolm and her husband and another friend were playing behind us, but I had to keep stopping as my heart rate was over 120 and I felt really weird. I had no pain, no breathlessness, no palpations to speak of… and as I had been told by a cardiologist in July 2016 “there is nothing wrong with your heart, stop worrying and enjoy life” I didn’t panic, my friend Fiona ( a physiotherapist) however was not comfortable. We walked off and stopped playing after 6 holes. When we got home I slept for 2 hours.
I mentioned this to Dr Annice Mukherjee and she asked if there was any family history…. Her response quite calmly was, I want you to see a cardiologist asap. I explained I had seen one a number of times and been told there was nothing wrong.. at this point she insisted on a second opinion and referred me to Dr Neil Davidson. Both on the NHS and privately. She advised that if I hadn’t received and appointment on the NHS within 10 days to go privately.
The appointment didn’t arrive and so I made a private appointment and on 7thOctober 2017 I started my close and regular relationship with the Alexander hospital.
Dr Davidson was lovely (still is!)..he listened to my story and concerns…he looked at my Apple Watch app and suggested a CT Angiogram and some other tests…just to be sure, he said, as I “wasn’t the profile”…etc etc.. but my family history was catastrophic and needed to be considered a risk
So off we went again with the tests… 48 hour ECG… back to the Alexander hospital on 10 October and 2 days “wired up”.
In the middle of all this it was Malcolm’s 60th(17thOctober) the whole family were going to do the Crystal Maze, I found it really hard work and very frustrating…. I now know why! Malcolm and I had a divine lunch at Manchester House on his 60thbirthday I love Adrian Byrnes food he is so so talented.
I went to a dance workshop with the lovely, lovely Robin Windsor a long time inspirational dancer for me and following this and actually speaking to him a huge motivation in the last 12 months. …I was frustrated and puzzled that I couldn’t quite keep up and wondered why I had discomfort in my chest, Little did I know …
Then came D – Day …Friday 20thOctober I was booked in for a CT angiogram and my life was about to change forever …..to be continued….