This is a link to an article I’ve just written for The Circulation Foundation. I hope you find it useful especially if you have just been diagnosed.
circulationfoundation.org.u...
There is all sorts of useful information on the website even if you have to dig around a bit!
A fine article. I salute your wisdom, your toughness, and your resilience.
It's inspiring to hear from someone who has recognised that they have a serious, life threatening disease, and instead of whingeing has resolved to do their bit to get on the road back to health.
In sounds like you're making great progress and I wish you every success in securing yourself a fit and active future!
You're doing great yourself!
What an interesting article. Thank you for sending it out.
I really like the way you went for it, not getting depressed that that weren’t going to operate etc,. You also found professionals who could help and advise in a way that really suited you. Clever dietitian, fitting her approach to your style!
You just got on with it and are making it work. Clever you!
Thanks very much Speakeazi. Like Chappychap and Kristin1812 I salute your positive attitude.
What's interesting to me as well is that there seems to be a bit of a lack of joinedupness (sorry can't think of the right word) between the world of cardiology and the general vascular people. I've got a feeling my condition (coronary microvascular angina) is not just a disease of the heart but also affects the blood vessels supplying other organs and parts of the body. But the worlds are a bit compartmentalised. I think I need to do a bit of digging into the circulation world. I'll send you a PM.
Hi Dunestar
Yes the specialists live in their own silos as a patient you have to coordinate their communication!
I also have neurological symptoms with my microvascular and vasospastic angina. I am also getting pain in my kidneys too.
Have you seen this research article about how we are living with a systemic disorder of all the blood vessels in our bodies?
academic.oup.com/eurheartj/...
Wow, thanks Milkfairy for the article which I haven't picked up on before. I should have excepted the BHF from my earlier comments - they are doing a grand job in trying to join up the dots.
An expert patient by experience has worked with the BHF and Prof Colin Berry on the Information on the website about Microvascular and vasospastic angina.
The BHF have over recent years has been much more responsive to us as a group of patients.
bhf.org.uk/informationsuppo...
Here's another recent article for you
heart.bmj.com/content/early...
Thanks very much Milkfairy. I had seen the bmj article. It would be great if the protocol they propose could be adopted as standard procedure for patients showing up for an angiogram with no obstructed coronary arteries. I would guess we are a long way off this at the moment. Maybe Maria Chris' conference next month will help to raise awareness?
Thank you for posting this. My wife had been backwards & forwards to GP, hospitals etc for the last 3-4 years because of pains in her leg(s). It got gradually worse and earlier this year they put her on morphine to try & control the pain - to no avail. In mid-May she said one morning was this normal as her leg & foot had turned a marvellous shade of purple.
Cutting the story short she underwent emergency surgery where she was not expected to survive the operation. The follow up in outpatients a month ago revealed her right leg was basically dead as it had had no blood flow for a considerable length of time, so they diverted blood from her left leg to compensate. Now she is still having dressings changed twice a week and is very slowly recovering.
Questions are now being asked about how all this was missed by so many different "experts" - will be interesting to see all the excuses.
Grrrrrrr
How awful for you both. So frustrating. There is no excuse.
What I didn’t write in the main article was that the cardiologist asked me if I had pain in my legs and ignore my answer. And when I asked him why he’d asked he said “ it’s just a question we ask”
It was only when I called my physio to ask where I could get orthotics for my shoes that she suggested a sports dr.
I hope your wife’s recovery continues, it’s never easy and sometimes the body takes as long as it’s going to!
Take care
One of the giveaways was that she had previously had stents fitted to her Iliac Artery back in 2006 - but that involves scrolling through several pages to find it. Obviously the patient mentioning it has nothing to do with anything.
NHS is not good at early interventions.
It's "waste of money".
Geographical lottery may also apply.
Some hospitals/consultants are better than others.
One hospital can get you diagnosed within a year.
Someone else may take 10-15 years and patients die early.
They/NHS tend to spend money on some people, who are dying regardless of geography.
(When they could have saved a fortune by doing bits of detailed early interventions in stages from years back for the sake of QUALITY OF LIFE.)
As someone else commented, "where is the common sense?"!
I have direct experiences, friends, family etc.
Yours sound just like one I get to hear, regularly.
It's good to have the forum to hear from others.
They got to change the call centre script approach on vascular patients!
Vascular disease kill people.
That's a truly shocking and scary story shopman! I do feel for you and your wife having to go through such an ordeal. It seems consultants are so specialised these days unless you happen to hit on the right one things can fall through the cracks. I guess as well that as everybody is so stressed nobody has the time to stand back, think and apply a bit of common sense.
Do you find it harder to cope in the cold season?
Yes.
But I really make an effort to keep warm. Uniqlo sell lots of different light weight padded jackets with hoods and heavier ones with hoods as well. They are not too expensive. I also wear a scarf outside wrapped round my mouth so that the air is warmed as I breathe. And gloves.
My husband is now “happy” for me to leave the heating on overnight if needed.
I do prefer it to the very hot weather as I can warm up rather than not being able to be cool enough.
It’s all a balancing act!
What about you? How do you manage?
There are quite a few people like us.
I have known a nurse, who has got a stove in every single room!
But her husband also got PVD (not diagnosed early) and lost his limb (and more). He needs to be kept warm, too.
I also wear gloves at home in summer.
Unlike others, my upper limbs are affected (amongst other organs).
I use the patch, too.
Hot water bottles.
I started wearing fleece. . . Autumn begins in August here. . .
I often wonder microvascular is worse than macrovascular in some ways.
I have seen one article that commented that it would start off from microvascular, but it could go both ways. . . ?
Oh, yes, you could say, no point of comparison between these two. . .
However. . . Microvascular seems to be kept on research levels and it's not practiced in frontline clinics, read "largely unrecognised". MVD is easy to find. In my case, it was found eventually. My GP always knew I had a circulatory disease.
Fast forward, after not getting much help, I recently landed on HF clinic. I had cardiac arrest as my ECG showed and strokes in atypical presentations exteriorly. That was many years ago, but I had all the risk factors.
I think it was a really bad area for this type of condition to be recognised. Sadly, I did not try to move.
Luckily, my family had a few medics that helped! (but they all had their own stories to tell . . . they all get ill. . .)
MF is right.
Things are changing and campaigning by patients would be the only way forward.
I would be visiting a big hospital in London soon (not RBH) that I have been visiting for years. I will speak to the consultant about this.
All the textbooks may need to be re-written. Some would live in denial and some are more open-minded.
One thing I could add is that hospital consultants (in mid-career with burnt out syndrome) could be so used to handling patients off the "script" like some "call centre staff". Speak out if necessary. Persist and try again (if necessary).
Don't give up! (To those who are still undiagnosed)
Thank you for sharing!
PAD or sciatica 
Tested for PAD
Feeling just so overwhelmed with anxiety and depression since my recent SVT diagnosis.
Is there any success stories for PAD ?
