Angiogram and AVR hospital appointment waiting times.........

[flat]

Hi there I'm very new to here and have been following you all for the last couple of weeks ..........finding it all very helpful...thank you...........

I am 65 and after being diagnosed with severe aortic stenosis in May I was 'urgently' referred to my local District General Hospital in Eastbourne, East Sussex. The appointment took 4 weeks to come through and I was seen at the beginning of June. The Consultant confirmed the diagnosis and agreed that I would have to have open heart surgery and my aortic valve replaced. Next step is to have an angiogram to see if any artery work might need doing whilst they are in there replacing the valve. The Consultant said he would write to my GP and that the appointment would take 1-2 months to come through for Eastbourne with the actual op itself being done in Brighton but that wouldn't be for months and months after the results of the angiogram as they are all very busy.

A member of my family has suggested that as we can't afford to go private I should try and see if I could get seen elsewhere any sooner?

Whilst I do appreciate that treatment can be a post code lottery and there are lots of people far worse off than me the actual waiting around for the appointments to come through seem to be causing me far more health issues with anxiety and worry than the actual condition its self.

Does anyone know please how I would find out if I could have the angiogram and possibly the op sooner else where locally?

Many thanks

[Nic25]

Can't really help with your specific question flat, apart from saying you can now choose your hospital/surgeon. But whether that speeds up the process I really couldn't say. My suspicion is it could even slow things down by complicating the system but that is just a guess. But maybe worth at least asking GP or hospital? But really just to wish you good luck with the AVR. In my experience the waiting and whole build-up really is almost the hardest bit so my sympathies for you. Hope everything sorts itself out for you. Nic x

[flat in reply to Nic25]

Many thanks Nic25. What you are saying makes complete sense. I think when you are just sitting around day after day just thinking about what the future may hold you are inclined to clutch at any straw or idea that anyone might put to you. I'll just have to play the waiting game along with everyone else and just hope that the day for the op will come sooner rather than later. Possible I might discuss my concerns the next time I see my Doctor. Thanks again x

[seasider18]

I'm Eastbourne as well and had 75% closed Aortic Valve replaced at Brighton in June 2012 after being referred to Eastbourne in March 2011. Five weeks for first appointment, 17 Weeks for stress echocardiogram and 10 weeks for angiogram. Then referral not sent on to Brighton until I chased it up a month later. Had private appointment with Brighton Surgeon in December 2012 and quoted £28K. Decided to wait for NHS as at that time about a five week difference between private and NHS. NHS spun out to about six months and eventually had replacement in early June 2012.

Any questions just PM me.

[flat in reply to seasider18]

Hi seasider18,

Thank you for your response. You had quite the wait then...... The size of my AV measures 0.4 and I was told that I was urgent as anything under 0.6 was deemed to be in the severe category but I suppose urgent to them is different to urgent to us. It's just the waiting game I suppose then? Hopefully my angiogram appointment won't be too long and then who knows when the actual op date will be? Will keep in touch.............

[seasider18 in reply to flat]

Even at 75% closed I was asymptomatic and it was only diagnosed when I applied to get on a trial for a new BP treatment at Imperial College in February 2011. They offered to do the surgery there but logistically it seemed better to have it done nearer home although it was not until after my angiogram that I was told that Brighton was where they were done. I did inquire at other hospitals for their prices for private patients. Southampton offered a good price but again the distance factor for follow ups.

It was November 2011 before I was aware of any actual symptoms. How was your one found ? I had two clear angiograms previously in 1993 and 2001 after having had chest pain but apart from a murmur from my mitral valve all was clear. The angiograms had been asked for after stress ECG’s that had produced false positives as did the 2011 stress echocardiogram.

[flat in reply to seasider18]

Hi seaside18..... I have been asthmatic since the age of 13. About 30 odd years ago when a Dr was listing to my chest at a general check up he asked how my heart murmur was to which I replied what heart murmur? He muttered something about a high percentage of the UK being born with some sort of heart defect, said not to worry and to take an aspirin a day and that was that.

About September of last year I felt that my Ventolin inhaler wasn't easing my tight chest and shortness of breath associated with my asthma which seemed to be happening more and more so I started to use it far more often.

Heart palpitations are a very common side effect when using Ventolin and although I'd had a minor heart flutter and missed beat on the very odd occasion previously I noticed that they were now becoming far more frequent and lasting much longer.

I though I would 'test' something out and stopped using my Ventolin completely for 3 months around Xmas time....the upshot was that all the symptoms stayed the same. Then in April when we were beyond extremely busy at work I had 2 episodes one day and one the next when I thought that my head was going to exploded and I had this really loud whooshing noise in my ears and felt really peculiar for a few seconds.

Although I very seldom go to the Dr these episodes really frightened me so I made an appointment and so my heart story begins..................ECG, positive protein blood test, echocardiogram, specialist GP in Cardo confirms symptomatic severe aortic stenosis as did the Consultant Cardiologist at the Eastbourne District General and now referred and waiting for an angiogram to see if anything else may need doing whilst I'm having my AVR

[seasider18 in reply to flat]

Quite a story and fortunate to be diagnosed so promptly. I always had a little puzzle in my memory from when I had my national service medical in 1951. Listening to my heart the doctor suddenly looked up surprised and asked if I'd had rheumatic fever as a chid. I said no and he muttered to himself, shook his head and seemed to listen more intently but said no more.

Stress ECG's in 1993, 2001and the stress echocardiogram in 2011 all led to false positive findings and clear angiograms. The assistant registrar in 2001 said I had to stay in for the angiogram. I asked if I could go home first to get my toothbrush and he replied No, you might fall down dead at the bus stop. I offered to bet him a months salary that it would be a false positive but he would not take it.

[flat in reply to seasider18]

Omg...it just goes to show.

All things considered I've been lucky then with a prompt diagnosis and now the wait begins.

[seasider18 in reply to flat]

Take heart from me the operation is no big thing and no pain after it. I was trying to refuse painkillers on day two. The porter taking me to the theatre said that I was the calmest patient he'd ever had.

Sleeping was a problem for me as I had to lay on my back. It is just getting over the first few weeks to build up your fitness again.

I had tendonitis caused by the Fluorioquinolone antibiotic they gave me for the prostate infection I went in with and needed physio for that so I delayed the rehab programme. By the time they persuaded me to go to it I didn't really need it. Nearly all the ones on it had never walked in their lives.

After ten weeks I felt pretty back to normal and was going to the races again which is quite a strenuous day with train and bus travel and dodging around the course for hours.

One problem is cancellations. Three of us were admitted and one was sent home the next day as they had an emergency. Another was on the trolley to go to the theatre and had it cancelled and sent home as they did not have a theatre sister and could no get an agency one.

[MKB38]

I had an AVR in November 2017. When you see the surgeon you can say that you are willing to take a cancellation, which might bring it forward slightly. I only had one days notice, which was great, no time to panic. Everything went smoothly. Get yourself as strong as you can before the op. For example being able to get up out of a chair without using your hands, or out of bed. Follow all the post op advise to the letter. Accept all medications to relieve pain, don't be a martyr. You'll be on the mend in no time. Good luck, and don't hesitate to ask my fellow hearties if you have any queries or concerns.

[flat in reply to MKB38]

All sounds like great advice MKB38 thank you, I'm so glad that all was ok for you.

I will certainly let them know that I am available for any cancellation and am taking on board from fellow hearties all tips on getting 'match fit'. I know the day will eventually come and I will be ready for it. When I have an update or any more questions I will be back..................

[MKB38 in reply to flat]

Feel free!

[flat]

Good news...…………update...………………..after seeing my cardio consultant on July 3rd and he then telling me that I would have to have an angiogram and that I should hear about my appointment in 4 to 8 weeks a letter arrived last week saying that it would be done on July 29th at 8.00am. To say I was surprised is an understatement when I have read on this forum how long some of you have had to wait.

Pre procedure I had to go in to have a MRSA swab and bloods taken and this was done on Friday. Went in yesterday and all went very smoothly. First one in and it took about 40mins. I have to say that although they were all very through with explanations of what was going to happen I can only describe the procedure as rather unpleasant but absolutely nothing to worry about.

Luckily they gave me the results there and then and thank goodness they were all normal which was a great relief to hear. Discharged by 2.30pm with instructions about what and what not to do over the next 48hrs.

He has put me on a diuretic for a month which I have never had before ( I don't suffer with water retention or puffiness in the limbs) as apparently he wasn't happy with some 'pressure shot readings within the heart' whatever they are and the nurse didn't really know why I was being given them either but if I have any issues in taking them I'm to go to my GP.

They now have a JCC (Joint Consultant Committee) meeting each Thursday where they go through all the awaiting ops and decide who, when, where etc, so here's to the next wait to hear the outcome. He didn't give me any idea of when I could expect to hear?

Had a good night and went for my usual walk this morning, everything ok so far it just feels like I have a very heavy arm and my wrist aches slightly from where it is bruised around the entry site from where the procedure was done.

All in all glad that, that part is over and now onto the next...…………………best wishes to all who are in a similar position to myself...I will post again when I have any more news

[flat]

Question for anyone please...……..forgot to say when I posted my latest update .....I was given when I left hospital after the angiogram a month's supply of a diuretic (furosemide) to take and it wasn't really explained to me exactly why I'd been given them even though I said to the nurse that I have never suffered with water retention or puffiness.

I have looked it up and it says that they are usually given for getting rid of excess water and salt which can ease swelling in the heart and congestion of the lungs. I'm asthmatic so I wondered if that is why I have been given them. Also I wasn't told if I've got to get more supplies when this month's worth has run out or if it's just a one off?...……....I suppose I will have to give the cardiology dept at the hospital a ring to double check.

[flat in reply to flat]

Hi All. ......Haven't posted for a while but on the whole things aren't too bad.

Had a successful AVR and root enlargement with a bovine valve on Jan 23rd. I worked very hard on my recovery and did everything by the book.

I did develop post op anaemia and my Doctor eventually gave me a 6 week course of iron tablets because I was so wiped out. He was very hesitant to begin with until I told him that I had now developed really bad joint pain all over.

The iron tablets did their job regarding my iron levels but the joint pain has continued to get worse so much so that I now have 'pain' in my muscles as well. Have spoken with the Doctor again and asked if i can stop my20mg Avorstatin for a couple of weeks to see if that helps.

He has agreed so I stopped them just over a week ago but the pain and issue is still the same.

I'm looking please for anyone else that has had this or very similar along with any hints and tips. Thank you and keep safe.