Husband's concerns and observations about his wife's symptoms and delay in treatment
A lady who had her parathyroidectomy five weeks ago, shared an update about her busy weekend, and also a post which came up on her newsfeed from a year earlier which had been written by her husband Dave Joyce. Its not often we hear from husbands' telling us what their wives endure. More typically we have wives join us to support their husbands. So this blog is dedicated to Gerri and Dave Joyce. Thanks for sharing with us. Gerri: 'This just came up in my memories from last year. My husband posted it on his Instagram and Facebook so I’ll copy it below. I'm delighted to be 5 weeks post op. We went to a wedding on Friday. We went to bed at 01.30. We then went to a rugby match in Dublin yesterday and I’m relatively ok. A bit tired, but so is my husband. So different from a year ago.'
Dave: 'This is a long rant about the ridiculousness of what is classed as 'health' services in this country.
My wife has had parathyroid issues; kidney stones, big stone on the submandibular, osteopenia, high blood pressure, gastric issues, severe joint pain, adenoma; benign tumour, to the best of her knowledge for the last 10 years, and has researched the subject thoroughly. This has resulted quite obviously in severe day to day pain that does not subside.
Thanks to a support page Hyperparathyroid UK Action4Change, she has actually been able to advocate for herself. Those that know Gerri, unlike me, know that she's not one to complain and bears all of this pain and discomfort with great dignity. To look at her, you wouldn't think there is any issue at all.
However, after all this time and continually asking for what is a relatively minor procedure, yesterday was the first they actually agreed that Gerri needs surgery. This is where things took a surreal turn as there is a three year waiting list, although Gerri's case is extremely critical as she is already experiencing end organ damage. What's even more ridiculous, is due to the seriousness of her condition, the recommendation yesterday was to double the high tech medicine (Cinacalcet) she is already on, which costs a fortune (for 3 years it will cost over €13,464) on top of a course of injections of Denosumab, which costs God only knows how much, on top.
This does not take into account the very many dangers of long term usage of Cinacalcet or the terrible side effects of Denosumab. Of course, if you can afford to go private the procedure costs £6,000 in Britain, so the logic (don't mind all the health concerns) of putting her on extremely expensive medication is mind boggling.
When we left that hospital yesterday, my heart went out to her. She was so defeated, and this happens to SO many people, EVERY day in this country!!!' This was Gerri's surgery update on 16th October 2023: 'I went for my 4 week post op appointment with my surgeon Orla Young today in Galway.
Histology showed what was removed, to be an adenoma lower right weighing 350mg and measuring 15mmx8mmx8mm. She checked all 4 glands so is confident I’m cured! Levels are all in range.
I’ve had high calcium for a decade. I was on Cinacalcet for 18 months and it was debilitating at times. Nothing showed on any scans. It was only when a multidisciplinary team met to review them that they decided to operate.
The non specific hypoechoic nodule seen on an ultrasound, was in fact my adenoma.
Orla Young is an amazing surgeon. and only one of a handful, in Ireland able to do the bilateral four gland exploration with intraoperative PTH testing. I am so grateful she was my surgeon. The whole team are knowledgeable which is brilliant.
My scar is very neat and gave no trouble at all.
Aches and pains are lingering and I’m still up once night for the bathroom (was more) but having had this at least a decade it’ll probably take time to improve so I’m not panicking .
The brain fog is definitely improving though so I’m very happy.
Thanks to everyone who has offered advice on here.
Means more than you know