Slipped through the net? Concerned.

[Numberone1]

Not sure what anyone can tell me her but I’m a bit lost.

I was diagnosed with severe aortic stenosis - total shock - in November. I saw a cardiologist who referred me to a surgeon. I saw the surgeon on 2 January. Amidst all this I’m in shock and trying to keep my head straight going from thinking I’m going to drop dead any moment, to going to the US for a month trying to forget it.

In January the echo was done again as the surgeon said if the figures were as reported, he would have kept me in. Valve size was 0.58cm and 3.4 ms velocity.

The measurements were much better at 1.1cm and 3.2 ms. He also saw what he thinks is a bicuspid valve. For that reason he wanted to put my case to a MDT and then we would know if I’m to go on a waiting list.

I left it a while but at the end of Feb found out my case had still not been heard. It was a clerical error. My surgeon was told and he said my case needed to be heard the following week. That was 3 weeks ago.

I’m now home and called the secretary. Nobody knows if my case has been heard. There are no notes on my file. They will try and find out what’s happening.

This is scaring me now. I only have one heart. I want it looked after. Where do I go with this.

[Fredders]

Keep pestering them and perhaps your GP. Might also be worth contacting PALS and see if they can help.

Sometimes patient care seems to be distinctly lacking and they forget how frightening it can be as a patient to feel like you’ve been forgotten about.

Hope it gets sorted out soon.

Wendy

[MichaelJH Heart Star]

When I was referred for a bypass things seemed to go into a black hole. After about 6 weeks I did chase it up but got nowhere. When I should have chased again I had become rather unmotivated. In the end I had my first consultation in early January (after nearly five months). Things are moving forward now but slower than I thought they would. One thing you need to bear in mind is that you must have no outstanding dental treatment, gum infections, etc. This was rather sprung on me in January's appointment. With getting a cold/cough that really dragged on I have only just got the dental sign off (with provisos). So go to the dentist sooner rather than later to avoids a delay in surgery if it is required.

[stevejb1810]

Waiting is always hard. Waiting in a void is even worse. I’m with Fredders on this one, keep hassling them. If you do not have it already, get a direct number to your cardiologists secretary and keep pressing. Use your GP to support you if you do not get anywhere.

[Nanny72]

Mine too was missed. Apparently was mistakenly referred the Heart Failure clinic. Three month appointment. Got emergency admission after failing 111 with strange symptoms. Kept in for four days then replacement valve fitted. Told I would die if I went home without surgery. Total shock. Operated on 2nd January, my birthday. Now feel really well.

Ring 111 they are amazing. I just had heavy feeling in my chest.

Surgeon said should have been done a year ago when I had what my doctor said was a faint and cardiologist said was probably a minor heart attack which should have been followed up.

Keep chasing them, go to your GP and ask him to write.

Write to Cardiology and the Chief Exec. Telling them they are in breach of NICE Guidelines.

[Prada47]

Hello

I do believe at our Local Hospital MDT meetings are fortnightly with the results being what they are i.e. Do you need further tests, MRI, Echo, or Medication changes. I knew within 3 weeks of the MDT that I had be booked in for Stress MRI and then a decision would be made or the best course of action. which took another 2 weeks.

I think to speed things up I get letters now which say Dictated on 21/06/18 etc Sent Unsigned. So they aren't waiting for the Cardiologist to sign it before sending.

A tip from my GP try the Appointment Department the Cardiology Department may be waiting confirmation from them before they notify you !!!

NHS Treatment Brilliant, NHS Admin Needs Treatment to Help it Improve.

Regards

Frank W

[Kimstyles]

If you have any symptoms call 999 I had server aortic valve stetnosis , knew I was on waiting list to see cardiac surgeon , was told any angina not on any circumstance to use under tongue spray , or fainting to call 999 by my cardiologist

Well was watching rugby got in the way of tv during a try moved quickly hit the floor .blscked out ! Previously week before when standing up dizzy and my neck vein throbbing !!

But didn’t want to go to ED and call an ambulance as u didn’t want to be a pain in the backside , I was think what if it emotional causing these signs !’ Doh

So I phoned 111 saw Dr who referred me in hospital ambulatory ward . was wheel chair to cardiac intensive care got a nice telling off from my cardiologist who’s said that I. And you are the people who should phone 999 .!’nn

I was then blur light to cardiac hospital , moral of story if any concerns phone 999

[Prada47]

Agree 100% Kim if in doubt 999

regards

Frank W