Somewhere between terrified and furious

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Somewhere between terrified and furious

Postby Pat M Straughan » Fri Jan 06, 2012 5:06 pm

I guess the heading sums up a lot of us on this board. I'm 58, have congenital aortic stenosis and have not required any surgery.

Had a once yearly echo last week. The technician started off by saying that the results were the same as last year. Then she said that the results were all over the place and that she needed to work out an average. I have previously been placed in an "optional" category for surgery.

I have no symptoms - no pain, breathlessness or blackouts. I don't smoke though I may be slightly overweight. Who isn't after Christmas? I swim 500m 3 times a week and can walk 4-5 miles when I'm bird watching. I don't put my heart under stress - ever since an episode of arrhythmia 5 years ago (never repeated), I am terrified of doing anything to raise my heart rate.

I'm on Amiodarone, aspirin, co-Amilofruse and levothyroxin.

Total shock at out patients today. Registrar says that I now definitely need surgery and his boss agreed. The rest of my heart e.g. mitral valve shows no change since last year. Blood pressure was slightly raised at 150/80 (white coat syndrome) but the registrar said he would have expected it to be higher given the other results.

I have requested a repeat echo, which I'm having next week. They want to see me in the clinic in 2-3 months.

I'm probably in denial, as the Americans say. I have a brother, now 75, with the same condition who is 30 years post valve replacement. He was really ill beforehand - couldn't walk across the room, had blackouts.

I should probably wait for the result of the echo and the follow up appointment but the shock to someone who feels well and is as active as she wants to be has been immense.

I have had two previous angiograms 35 years apart, both were disasters and this consultant said that my veins on the right side are unsuitable for the procedure. I told the registrar that I wouldn't consent to another. Also unhappy with stress test which I tried before but became terrified when my heart rate began to rise. Are there alternatives, does anyone know?

I was so stressed and shocked that I didn't ask all the right questions but I will write them down for next time. The registrar probably thought that I was really Bolshie - I even told him that I wouldn't go to the first hospital that he named, which is an absolute pig of a journey from here.

Does anyone else have experience of feeling well but having poor echo readings.

Husband is being very supportive and sensible but I waver between tears and rage.

Thanks for any advice and for reading.

Pat
Pat M Straughan
 
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Postby skip » Fri Jan 06, 2012 9:39 pm

Pat,

Sorry you've found yourself here in a state of stress....and i'm not surprised! I can't help with all of it but there are loads of people who read and use these boards, and i'm sure that people will have experienced bits of what you are going through!

Personally i have had two valve replacments, first one in 07, i knew this was on the cards as my batteries just seem to draining quite frankly! I have always been quite active and you know yourself when things start to change. Once i knew it was going to be done i just wanted it over so i could move on with life and get on with things again! They also tried to mend another valve which i thought they had done.
long story short i started running, cycling etc after surgery and even did a 10 mile run (which i am still very proud of) about a year after surgery. I went back a few weeks after my run in rude health only to be told the valve they tried to mend hadn't gone as well as they hoped so it was another replacemnt! I eventually had this done in Dec 09, i found this harder to cope with than the first one as i felt really well and was getting back on track with things.
I have seen one or two other posts from you this evening, can't remember if you are seen at a specialist GUCH cr or not, if not then try and get a referral for one from your GP, it will really be worth it as they are the experts and will be able to properly explain things without scaring the life out of you and your nearest and dearest!

Sorry if not much help but others may have bits to add on to this thread which may lead you to the answers you need.

regards and take care
skip
 
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Postby Pat M Straughan » Sat Jan 07, 2012 9:54 am

Thanks Skip. One thing about being on this board is that you meet a lot of people worse off than yourself. I guess I should be grateful for being well so long. However, all the platitudes such as it being a really successful operation don't really help.

Am feeling a little more positive today but I don't know if it will last. This is the day I start getting better as I've just told my husband.

Am really confused about exercise. I've never enjoyed it for its own sake. I like swimming and walking, which I can still do. I have no plans to change, even after a possible operation. What I was trying to convey to the cardiologist was that if I've never put my heart under stress because I don't like it and have never done it,is a poor stress test result because of the condition or lack of practice? He seems to think that I'm in danger of having black outs if I don't have the op but apart from the last echo result everything else seems fine.
Pat M Straughan
 
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Joined: Fri Jan 06, 2012 4:32 pm

echo results

Postby LISAH » Sat Jan 07, 2012 6:58 pm

Hi I have aortic stenosis and had surgery at age 11 (aortic valvotomy). I now have severe re-stenosis, but also feel very well with virtualy no symptoms. My echo results seem to be different each time, 18 months ago valve area 0.6cm and gradient 74. 6 months ago valve area 0.8cm and gradient 62, then this week my echo results were valve area 0.5cm and gradient of 77. The doctor took one look at this and said he had to speak to someone senior, who said the valve had not changed, and that as long as I was feeling ok they could just continue to monitor me as before. I have been told in the past that echo's are not exact and that it depends on the technician who is carrying out the echo, so results can vary. I am not sure if this problem is a common one? Hope this helps put your mind at ease a little.
LISAH
 
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Location: Oxfordshire

Postby Pat M Straughan » Sun Jan 08, 2012 10:39 am

Thanks Lisa. I have also been told that technicians vary. She seemed very puzzled as the first lot of readings were the same as last year and the others were'nt. She the said this was only an average and would have to go away and work out the numbers. Nothing else stacked up. Registrar said that there's no change In other areas of the heart. Blood pressure was 148/80 but he was expecting higher. So I insisted on a second scan which I'm having next week. Another thing that makes me suspicious is that my old hospital has been closed down. Although the new one has much the same staff this was a different echo machine. My cardiologist has always been pro surgery and it feels like I've spent the last 5 years fighting him already.
Pat M Straughan
 
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Joined: Fri Jan 06, 2012 4:32 pm

Postby Pat M Straughan » Wed Jan 11, 2012 9:24 am

Just came back from a repeat echo and have a slightly different perspective. Not sure it is all good news though. Had 2 technicians this time. They believe that the readings they got the first time were from the aorta and not the valve, which is opening and closing quite well.

When I was diagnosed at 19 at Guys, I distinctly remember them saying that I had a narrow aorta as well as a stenosed value. Unfortunately I don't believe anyone has monitored this , current Consultant has never commented, so I don't know how much of the aorta narrowing is congenital and how much is deterioration. A different Consultant is reviewing the echo today to see if it's worth having an MRI scan or whether they have enough information to refer back to first Consultant.

The technicians said that my heart is difficult to scan. Unphotogenic was the word they used (a bit like the rest of me).

I feel vindicated at requesting a second echo. I can't second guess the Consultant and don't know whether he will recommend a stent, do nothing, or go ahead with surgery anyway.

Has anyone been in the same situation? I believe that the right course would be for the Consultant to request my notes from Guys, which he has never done. Partly my fault, as I went 20 years without going back to Guys until I went to the local hospital with AF. I think I should also request an appointment with a GUCH. Would need to do this through my GP I think. Local Consultant's people skills are not the best and would be easily offended.

Should hear from second Consultant later today. I remain asymptomatic.
Pat M Straughan
 
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Joined: Fri Jan 06, 2012 4:32 pm

Postby Pat M Straughan » Wed Jan 11, 2012 4:40 pm

Back to feeling terrified again. Hospital just rang to say that they have been arguing about the results of my echo all afternoon. They have decided to refer the scan to expert opinion at Kings. Feeling is that I might need a TOE or MRI scan. Can't stop shaking.

Pat
Pat M Straughan
 
Posts: 65
Joined: Fri Jan 06, 2012 4:32 pm

Postby gosnold » Wed Jan 11, 2012 7:17 pm

Hey Pat,
Try to look at it as at least by doing a TOE or MRI they can get the results they need and either way you will have a plan. Can't imagine how scary it must be but the main thing is your being referred to the people who hopefully get to the bottom of things.
Hope things work out
Xx
Co-archtation of the Aorta
Parachute Mitral Valve
Mitral Valve Regurgitation
Aortic Stenosis
Aortic Stent
gosnold
 
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Postby Ruth » Thu Jan 19, 2012 5:35 pm

Hi Pat, hope things are beginning to look clearer. I had my aortic valve replaced in 2002. I had been symptomatic for 24 years and knew another op would eventually be on the cards but hadn't actually been aware of any particular deterioration (possibly masked by bringing up two young children - don't all parents get tired?).

Following the initial questionable echo I had an angiogram which was inconclusive and so had an MRI which was extremely conclusive - surgery was needed. Hopefully an MRI will have the same results for you - conclusive one way or the other.

Although I wasn't under a GUCH consultant until after my valve replacement, I did move to one and really do think from what you've written it would be a good move for you. Don't worry about the feelings of your current consultant - it's your health that's important.

Best wishes,

Ruth :)
Born 1966
Aortic stenosis
Corrective Surgery 1974 & 1978
Two wonderful boys born 1995 & 1998
Aortic valve replaced 2002 - now have St Jude's mechanical valve
Ruth
 
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Postby Pat M Straughan » Mon Mar 12, 2012 3:29 pm

I had almost managed to put this to the back of mind as I had heard nothing more. However, a clinic appointment arrived in the post this morning.

I've decided on the following course of action: make an appointment to see my GP and ask for a referral to a GUCH specialist in London. Before I go to the GP, I'm going to write everything down, right back to my initial diagnosis when I was 19. I'm still feeling well and would like to know if I can be successfully managed without surgery.

I don't feel that I can really talk to the local consultant. Just the thought of seeing him brings on levels of stress that I don't need.
Pat M Straughan
 
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Joined: Fri Jan 06, 2012 4:32 pm

Postby Pat M Straughan » Mon Apr 02, 2012 11:52 am

I saw my GP this morning and she has agreed to referral to GUCH centre, subject to approval by the "tactics" team. I gather that this part of the new GP funding set up.

I decided to postpone my local clinic appointment and may not go at all, depending on referral process.

GP hadn't heard of special GUCH centres, so I left her with a copy of the print out from this website. Before I went in, I wrote some notes so that I wouldn't forget what to say. I was still trembling and we didn't have time to go through each item, but she was sympathetic and I left her with a copy of my notes. I'm also trying to get a copy of my old hospital notes from St Thomas's.

Two sayings spring to mind:

- be careful what you ask for
- shy bairns get nowt

Still feeling well, just want to know if things can be managed without surgery.
Pat M Straughan
 
Posts: 65
Joined: Fri Jan 06, 2012 4:32 pm

Postby Pat M Straughan » Sat Jun 02, 2012 3:11 pm

I have my GUCH appointment at St Thomas's in
about 10 days, having discontinued treatment at a local hospital. Has anyone recent experience of St Thomas's that they might like to share? Please PM me if you prefer.

Stil feeling well, only terrified that that they will find something and insist on treatment that I don't want.
Thanks

Pat
Pat M Straughan
 
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Joined: Fri Jan 06, 2012 4:32 pm

Postby Pat M Straughan » Sat Jul 07, 2012 5:15 pm

Sorry if this turning into a bit of a blog but it helps me to write things down. Had my MRI scan today and results will go back to GUCH centre cardiologist.

Consultant said that any problems with my aorta would be congenital or have developed in very early childhood. Confirms my suspicions that this was picked up when I was 19' nearly 40 years ago but they didn't have MRI scans then.

Why then didn't the local cardiologist notice/comment when he did an angiogram 6 years ago? Quality of diagnostic procedures are so much better at GUCH centre.

24 hour ECG test in a couple of weeks. Still scared of having an operation but pleased to be somewhere with higher level of expertise.
Pat M Straughan
 
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Joined: Fri Jan 06, 2012 4:32 pm


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