Help - a meltdown

[Numberone1]

I found out last week I have moderate/severe aortic stenosis. I was told 3 years ago that I had mild and that I didn't have to worry about it for 20 years, so I didn't.

I haven't slept for three days, I've lost half a stone, I have no support other than the BHF. I can't stop crying. I have three daughters and they are all settled now, one being pregnant and due in December. My husband and I have got to the stage where life is settled and easier. Financially all is good. We travel alot too.

Of course, life isn't meant to be easy for me is it. I feel desperate. I need some help and I don't know where from.

Im so angry. My parents are 87, my Father in Law 92, my Grandparents lived until they were 97 and Im 59 with death looming in my face. I haven't got an appointment with the cardiologist yet its not likely until after xmas even though Im severe. My only luck chance is I don't seem to have any symptoms. However, apparently thats worst aswell because they don't know when to do the surgery.

Can anyone help me.

S

[skid112 Heart Star]

hello there, its easy to panic and worry about things, but from your previous posts you don't seem to be suffering any new symptoms. You also say you were seeing your GP on Monday, what happened there? Did you ask for a referral?

It is good news you have been diagnosed, though you may not see it currently, you will be treated and the treatment is in a huge percentage of cases, successful.

hopefully this may ease your worries, try also calling the BHF helpline, the number the number is 0300-330-3311 there is someone here from 9-5 Monday- Friday.

[Numberone1 in reply to skid112]

Thankyou. My Monday appt was moved to tomorrow. Still no cardiology appt. definitely no new symptoms. If anything feel more well than ever.? Not even swollen ankles which I've had intermittently over 20 years. No chest pain, no shortness of breath. I think that's what makes it worst.

[skid112 Heart Star in reply to Numberone1]

then prepare some questions for your GP, push them for a referral to your local cardiac centre

[Dazzler142]

Hello numberone,

Please do not try to worry too much.

The thought of the word severe is very scary..i understand this as i was told this also and basically got on with my life until feb/march of this year..i too heard that dreaded word severe..i also thought this was it..i was doomed, found no support but bhf and here are amazing..honestly very reassuring.

I am assuming you have a cardiologist/surgeon? If so they have a team,you can also get involved with the nurses at rehab before any surgery and talk and let them support you

Believe me,i have been you..i am 45 with a 15yr old and was told i needed a mitral valve replacement.my world fell apart.

I am 8 weeks post op and i have not looked back.

Our surgeons are genuises.

If you need support please message me.

Take care

Jenny x

[Numberone1 in reply to Dazzler142]

thank you so much. I don't have time to be ill. I look at my girls and think Idon't want to leave them. One is pregnant and this is now spoiling it all. Ive woken up today feeling a bit breathless and Im over reacting I know. thank you again.

[Dazzler142 in reply to Numberone1]

No your not at all.

I totally get what you are saying and feeling..its awful going through this..

You need to get some news from a cardiologist and then the understanding of your illness but more importingly the getting you well again which is the BEST bit..honestly it is.

I too was breathless for many years,but was undiagnosed with bronchiectasis and mitral stenosis.the guilt i live with having such a young daughter when this all started is awful at times but at age 12 i had to tell her my heart was poorly.

My daughter has been my diamond and she went into meltdown this year when they said SEVERE to me..but with talking to surgeons,nurses and cardiologists she was reassured.

I have found talking to my family has also helped us all.

I hope you have that too.

Hope you are seen and reassured very quickly

You are in my thoughts

Jenny x

[Sonnysmummy2016]

Hi there,

My son who is 10 months has pulmonary stenosis, pulmonary atresia, Anyrusmal septum and Hypoplast right heart.

You will be angry upset and everything else inbetween.

Hospital wise... Get on to them and ask for when you roughly will see a cardiologist. Don't panic or worry you will be fine. The thought of operations are daunting. My son has had 4. Keep your chin up... And just stay as strong don't over do yourself either. To settle your own mind you can purchase a small oximeter. And check you blood oxygen level for your own peace of mind.

Much love and please keep updated

If you need any other help let me know.

Nell x

[Numberone1 in reply to Sonnysmummy2016]

I have that on my phone. Didn't think of it. Thank you.

[Sonnysmummy2016 in reply to Numberone1]

Np x

[MKB38]

Morning S. I had to re-read your post twice to check that I hadn't written it!!! It is exactly how I felt in June/July having been given the same diagnosis (aged 66). Like you, I don't have many symptoms, mainly fatigue, but my whole life was put on hold. We had to cancel two holidays, I am no longer able to look after my darling grandchildren, and the timescale to receive an operation is quite long. I also lost half a stone. This was mainly due to anxiety, and when you come to terms with the prospect of the operation, and realise there is no choice, I hope you, like me, will try to stop worrying and carry on with life as best you can within your limitations.

Fast forward to now. I still haven't got a date for my op, but I'm doing as much as I reasonably can to look after myself. Getting lots of rest and sleep between jobs etc. I've begun to regain my weight and people tell me I'm looking much better. I've no doubt I'll become a nervous wreck when my date comes through, but the wonderful people on this blog have helped me to prepare myself.

I console myself with the knowledge that there are many people who are much worse than me. I'm glad it has been diagnosed early and will be treated whilst I am still relatively fit. The best medicine is positivity; you can't change things so keep your chin up and take care.

Keep us posted.

Margaret

x

[Numberone1 in reply to MKB38]

Did you find out that you had an odd valve to start with because Im 59, you're 66 and thats relatively young to get this without there having been a problem in the first place. Why did you cancel your holidays? Unless you just didn't feel safe, Ive already found an annual policy that would cover medical costs if something went wrong. I have a second home in Vermont, US and the thought of not being able to go there is crippling.

S

[MKB38 in reply to Numberone1]

Hi S, it's difficult to say. I was fit and well until March and went to my GP with disorientation, which was originally thought to be vertigo, and I was told it should 'fizzle out'. This was probably the start of the weight loss. I persisted at the Drs and she listened to my heart with a stethoscope and said I had a murmur which needed to be investigated. I had the usual tests ecg etc. and in May she advised that I had AS. It could be that I'd had a damaged valve since birth, but with age the walls had hardened and this was why I was now getting symptoms or I'd had Rheumatoid Fever as a child which caused the damage.

The first holiday to Moscow was scheduled just a week or so after the diagnosis. In my current state of anxiety, lack of sleep, not eating, plus the disorientation we felt I would not be able to enjoy the holiday, so my Dr advised me not to fly.

My first appointment with the cardiologist was at the end of June and she referred me for an angiogram. This confirmed that I needed a AVR. She thought I'd be 'done and dusted' (her words) by the end of the summer holidays, so this put a question mark over our second holiday which was the end of September. I met the surgeon in August and I'm still waiting for a date for the operation. No-one has ever said whether my AS is severe or not. I don't take any medication whatsoever and as I said before, the fact that I have now accepted the inevitable op, I am much more my usual self. I'm doing as much as I can normally, within my limitations. I still get very tired and do feel unwell if I overdo it. I'm eating normally again and have started to creep back to my normal weight, which makes me feel stronger ahead of the operation.

With regards to the disorientation, which took me to the GP in the first place. I now think it was nothing to do with the heart problem. I've been visiting a chiropractor who has been treating my neck and it has improved considerably.

I am grateful the diseased valve has been discovered whilst I'm relatively fit and hopefully when replaced I'll have a new lease of life and get back to doing all the things I enjoy. Walking, singing, travelling, looking after grandchildren.

The success rate of this operation is extremely high and I am confident in the NHS professionals I am under.

Sorry this post is so long. If I can help in any way just get in touch again. Let me know how you got on at the Drs.

Margaret

x

[Numberone1 in reply to MKB38]

Out of interest, which part of the country are you? Is your cardiologist good? Re the disorientation I have had that a couple of times and assumed it was vertigo. Once at the beginning of this year and then not again until 2 weeks ago. I kind of felt weird and staggered a bit. I also had it last year during the middle of the year. So didn't take any notice because they were so spaced apart. On the other hand what if it was related? How long have I been like this?

Susan

[MKB38 in reply to Numberone1]

Hi Susan, why don't you drop me an email at home and I'll reply to your queries, rather than all the forum getting bored with our problems. My home email is [Edit: removed].

Margaret

[Numberone1 in reply to MKB38]

They deleted the email address by the way.

[MKB38 in reply to Numberone1]

Hi Susan, yes I realised I shouldn't put private info on the public forum and asked for it to be removed. Nor should you mention individual doctors or hospitals. However, there is a way to message privately and I did message you on that. I'll try it again and hope you get it this time. M