Feel Like I am going around in circles....

[Safeangel]

I was diagnosed with Bicuspid Valve in 2019 and then in March this year found out I also had an ascending aortic aneurysm of 4.8cm.

Trying to get an appointment to see a vascular is turning into a nightmare.

Firstly the hospital that found my aneurysm don't undertake this type of operation (they also failed to inform me they knew about the aneurysm last year where it measured 4.4cm)

I have now been referred to Liverpool Heart and Chest Hospital.

I have been chasing these for weeks now and finally informed my paperwork went to the wrong consultant and the consultant I need to see hasn't even looked at it yet.

The receptionist informed me he has a long waiting list and I'm looking at next year just for a consultation. date.

What do I do in the meantime, what if it gets bigger by then? It has grown 0.4cm in a year.

The receptionist said if I feel unwell to go to my GP and what can he do?

Sorry for the rant but with it running in families and told to keep blood pressure down I seem to be the one having to constantly chase and find out what is going on.....

[10gingercats]

Its a long shot but in the meantime put yourself on the cancellation list...held by all depts.Someone drops out and then they ring you .We have hit lucky a few times with this .You can also try looking around for another hospital that will do the surgery you need. People on here may be able to help advise on this. Ring the dept. every month or so and check where you are in the queue. If you feel significantly unwell let them know about it. It is very much the case now of helping yourself.

[Yumz199725]

Aw hun totally understand why you feel upset about this that's alot to have to deal with and a long time to wait for an appointment with consultant. I have bicuspid aortic valve severe aortic regurgitation and moderate stenosis I was born with congenital heart disease so been seen regularly since birth but I really feel for you with how long you have to wait. Do you have any symptoms??

[Safeangel in reply to Yumz199725]

Hi thank you for replying. I seem to get out of breath more than usual and have the most awful backache but unsure if that is connected.

I have gone from being very active, to just feeling so tired and only fitness is walking .

It is so frustrating to constantly having to chase hospitals and I'm worn down by it all.

[Yumz199725 in reply to Safeangel]

Aww hun that sounds alot like how I feel all the time so that can't be a coincidence! I have backache when I try and lie flat at night so have to sleep propped up and I do alot walking as like you seems to be all I can do. I do go to the gym when I can though and breathless more then I used to be especially when walking up stairs luckily I don't have any stairs in my place just leading up to it which seems to be enough to wear me out and walking up hills arghh that is a night mare! I feel for you having to go through this aswell but not even have a specialist hospital yet! Is there a way of chasing it up so you can be seen quicker sorry if you have already tried this x

[Safeangel in reply to Yumz199725]

I have tried everything possible. I have been constantly on the phone to Liverpool and they tell me to call back in a couple of days and when I do they just tell me to call back again the following week. I totally understand the NHS is on its knees and I'm positive there are people worse off than me, if I could afford it I would go private but I haven't got that type of money.

I wish now in hindsight I should of got private health care many years ago.

The fact you have the same symptoms as me makes me feel like I'm not going slightly mad !!

At a time when you are supposed to not get stressed I'm doing a really bad job of it lol!

[Yumz199725 in reply to Safeangel]

Aw so easy to get stressed when you have what we have I have bad anxiety and that really dosent help. Hope I haven't made you feel worse! 🙈. Do you get the back pain and find it hard to breathe for bout 20 seconds before trying to sleep just wondering what that means. What surgery are you waiting for i am told I will eventually need valve replacement surgery. My leak is now classed as severe but not sure any of my symptoms are even related to this 😐

[Safeangel in reply to Yumz199725]

I usually get the backache while asleep and wake up with the pain. I do get quite often a pain from my right arm across my shoulder blade which takes my breath away (again unsure if it's related to condition)

I will at some point have to have a replacement valve but I'm having 6 monthly scans. It's the ascending aneurysm that is most worrying for me.

Can I ask how old you are? I'm 54 .

[Yumz199725 in reply to Safeangel]

Aw that would worry me so much. I am 25 x

[Safeangel in reply to Yumz199725]

Wow you are half my age . It must be very hard for you being so young. I always knew I had a heart murmur or that's what they thought from birth , but they didn't do heart scans at that point.

I suppose I was lucky they decided to scan my heart before I went for a minor operation and that's when I was informed.

I sometimes think it's easier if I didn't know but then I wouldn't be as careful as I am being since finding out.

I hope all goes well for you and keep me informed of your progress. Xx

[Yumz199725 in reply to Safeangel]

Yeah I know sometimes I can't believe I have all of that. I had OHS when I was a day old to fix the coarctation of the aorta so hopefully that dosent need fixing any time soon. Yeah the heart murmur can be so innocent but can mean so much more in our case so wasn't nothing! Wow what operation did you in for hope you don't mind me asking? Glad they found it when they did. Thanks so much I definitely will you too hope your able to get your surgery xx

[Safeangel in reply to Yumz199725]

I had breast disease in 2019 not cancer. I had blocked milk ducts which antibiotics couldn't get rid of it, so ended up losing a nipple and a quarter of my breast tissue just before the COVID lockdown so was very lucky to have had the surgery.

[Yumz199725 in reply to Safeangel]

I have congenital heart disease which caused coarctation of the aorta and bicuspid aortic valve, small restrictive perimembranous ventricular septal defect, with regards the bicuspid aortic valve it's severly leaky and moderately narrow so yeah fun to be me x 😅😜🙃

[Cat04]

If your symptoms are becoming worse you can tell your GP and they can expedite your appointment with the consultant at the hosp.

It's important to keep letting your gp know of any deterioration. I had BAV and only a borderline dilitation of the ascending aorta and rapidly deteriorated last summer and became quite poorly resulting in AVR in Jan this year.

Best wishes x

[Safeangel in reply to Cat04]

Thank you Cat04 I may have to do that. x

[Hidden]

Hi Safeangel,

I also have an aneurysm of the ascending aorta, mine was picked up whilst I was in hospital for another condition which required a CT scan, this was 3 years ago. This is how they are normally picked up - by chance.

I was referred to a cardio thoracic consultant then had a CT scan, mine was 42mm and was booked for another CT scan in a years time.

The next time it had grown to 43mm and was put on blood pressure tablets, I’ve had 2 yearly scans and as it hasn’t grown any further my next scan is in 2 years time.

They normally want your blood pressure to be below 110 systolic, to stop the aneurysm growing, if you are not on blood pressure medication then best to speak to your GP ASAP.

In Essex where I live they do not normally consider any surgery until the aneurysm is 55 to 56mm in size, I imagine that parameter is the same wherever you live.

Their main concern is the speed of growth as opposed to its size therefore I am amazed you have not been seen any sooner, just keep pushing and making a nuisance of yourself until you are seen.

Interesting I now suffer from backache which wakes me up every morning. I go to bed without backache and in the morning it is always there.

I wish you all the best and if you have any questions then please do not hesitate to ask.

[Cat04 in reply to Hidden]

I believe the parameter with a bicuspid aortic valve is lower at 5cm hence Safeangel should indeed be making a nuisance of herself and getting heard/noticed.

[Hidden in reply to Cat04]

Hi Cat04

I don’t have a bicuspid aortic valve so know little about them, the figures I was referring to is what the consultant told me in response to an AAA only.

Whichever figure is correct an AAA needs attention and she must keep on at the doctors until seen.

[Cat04 in reply to Hidden]

I think she has a BAV with stenosis and an ascending aortic aneurysm/ dilitation not an Abdominal Aortic Aneurysm (AAA) but there does appear to be a bit of confusion even between the professionals. Either way she must persevere to get her appointment and appropriate treatment.

You've got to be tough and determined to get through the system now a days.

[Safeangel in reply to Hidden]

Thank you for your reply DenBoy70 . There seems to be a pattern with backache and TAAA from others I have spoken with.

I am on blood pressure tablets but my average is around 136/93 and the GP seems to think that is fine.

When I said I wanted to get it to at least 120/90 he said that figure is for young people only (I am only 54!!)

They usually look at operating at around 5cm if you have a BAV as well which I do.

As my dad had a brain aneurysm at 54 (survived after emergency surgery) and my Grandfather (54, didn't survive) I would of though t they would take that in to consideration, but when I haven't even been seen yet and not likely to until next year it is slightly worrying.

I am so tired of pushing and calling the hospital, from the day I was told it was 4.8cm and my local hospital couldn't deal with it I haven't been seen at all.

I understand the NHS is on its knees and I do feel very sorry for the medical staff but I am starting to think I will never be seen.

I have had to go on leave of absence from my front line policing job and to go from being very active to basically desk work is just making it even harder to deal with.

[Hidden in reply to Safeangel]

Hi Safeangel,

It was the doctor at the hospital that said he wanted my GP to try and keep my blood pressure below 110/80 if possible and would write to him.

I have to say my GP has not been in contact with me about my blood pressure as I suppose they are all so busy since the pandemic.

Currently I take 10mm Amlodipine daily and if my blood pressure is below 120/85 then I accept that as being near enough.

Can you not get a second opinion from another GP at your surgery, I’m 72 so whilst 120/90 is for young people, if you have a condition that needs a lower blood pressure they should be trying to achieve that and not fobbing you off with silly statements.

You can only do what you have been doing and keep chasing people and at sometime you will be seen. I do hope that day comes soon.

[Safeangel in reply to Hidden]

Thank you I have just changed GPs so hoping I can get this issue sorted.

[Cat04]

Do you also have aortic valve stenosis? Both the dilatation of the ascending aorta & valve would probably operated on at the same time by open heart surgery.

[Safeangel in reply to Cat04]

Unfortunatly yes I do.

[Cat04 in reply to Safeangel]

You sound as though you are about where I was in my journey a year ago. Very best wishes to you xx

[Safeangel in reply to Cat04]

Thank you and I hope I get some news eventually

[Cliff_G]

Safeangel,

Sorry to hear this. It's hard knowing what you know about your aorta but not getting the attention. I have a few suggestions.

1. You should be seeking the help of the Cardiothoracic team, not the Vascular. Vascular deal with the descending aorta but not the ascending. A silly division when there should simply be an "Aortic" specialisation, but there we are.

2. Talk to your GP and get onto a beta blocker, ACE inhibitor or ARB. These will both help reduce your blood pressure and there is evidence that they slow the rate of growth of aneurysms. You want to aim for 110/75 and you need to do that as soon as possible, not wait for the usual try-this-try-that and only above 140/90. There is useful information on the latest BP info for those with aortic disease at aorticdissectionawareness.o... to show your GP, and the medications info is in the international guidelines for management of aortic disease. Keep up gentle exercise such as your walking.

3. I have often found that writing to doctors works better than phoning etc. Write to the "Cardiothoracic Department - Aortic Surgery" at Liverpool (incidentally one of the top tier of aortic centres in the UK, so a good place to be referred) and give them the key information that (a) you are bicuspid, (b) that you are now 4.8 cm and (c) you have grown from 4.4 cm in 1 year. Ask for an urgent consultation. Send it registered or at least tracked post. This info should get their attention, where when you phone you're not usually speaking to someone able to make clinical decisions. A letter has to be reviewed by a Consultant. Whilst they have a long waiting list, the above indicators should lend your case some priority. Send a copy to your GP.

4. Additionally, consider trying other hospitals. I don't know where you are but QE Birmingham is another top aortic centre. There are others, and if you're in England you are able to use the choose-and-book system.

5. I'm not sure if we've discussed this before, but I wish I had worn a MedAlert bracelet. This will help paramedics and A&E know immediately that you have an aortic condition.

Very best wishes.

[Safeangel in reply to Cliff_G]

Thank you Cliff I will have to visit my GP again and discuss my medication and I will look at the guidance you have attached.

I have sent the consultant an email last week (although no reply as yet) and I do keep ringing them and asking them to put it on my notes that I am calling.

I think the next will be a recorded letter, but we all shouldn't have to fight to get treatment.

I want to go back to my day job, I want to go back to being as active as I was and I just feel my life is now on hold.

I will look at QE Birmingham as well, thank you very much for taking the time to reply.

[Cliff_G in reply to Safeangel]

Great. We are our own best advocates! At least you're aware, I just dissected out of the blue in spite of 20 years of monitoring!

[Safeangel in reply to Cliff_G]

That is scary... what measurement did you dissect at?

I just think being told I have this and then you are left with no information and then most of the information is based on men over 65 is quite concerning.

[Cliff_G in reply to Safeangel]

My case was unusual. I have an extremely high level of a rare cholesterol species, plus an aortic ulcer plus high BP.

[Safeangel in reply to Cliff_G]

I am very sorry to hear that and I hope you are on the road to recovery Cliff

[Cliff_G in reply to Safeangel]

Thanks. Getting there slowly! Doing what I can to help others avoid my situation.

[Cliff_G]

I just checked back on some previous posts. When you discuss with doctors don't use the term AAA. This means Abdominal Aortic Aneurysm and is dealt with by Vascular consultants. The correct term is probably TAA, Thoracic Aortic Aneurysm, but best avoid acronyms completely, they can lead to misunderstanding. It is likely your BAV is accelerating the growth of your ascending aorta, so a vwry important distinction

[Safeangel in reply to Cliff_G]

Hi Cliff it was the GP who told me I had AAA and it was abdominal, only to be told by my BAV consultant he told me wrong and it was TAA.... So as you can imagine it has been a nightmare for me with even the GP telling me the wrong information back in March.

[Cliff_G in reply to Safeangel]

What!?? Have a look at [edit] thinkaorta.net/ and download the Patient leaflet (the earlier link was more to do with after dissection) [end edit]. Perhaps point the GP at it gently. Ignore the 5.5 cm figure, that's in the process of being reduced and BAV puts you at higher risk too.

[Cliff_G in reply to Cliff_G]

Have edited the above post with the correct link.

[Hidden in reply to Cliff_G]

Hi Cliff-G,

That’s a very valid point as AAA is always taken as an abdominal aneurysm, even the paramedics get it mixed up.

I always refer to mine as an ascending aneurysm of the aorta to ensure people understand.

[Cliff_G in reply to Hidden]

I ran the Think Aorta poster into our local ambulance station. Till then they equated aorta with AAA.

[ClairePap]

I feel for you. You mention looking at the QE in Birmingham you could also consider Wolverhampton as it has a Regional Heart and Lung Centre. The care I have had has been amazing. I had a bicuspid value with an aneurysm and stenosis. They put me on beta blockers to take the pressure off my heart prior to surgery.

[Safeangel in reply to ClairePap]

Thankyou I will look into it x

[Flossrudy]

I am so fed up with lack of monitoring by GP and hospital that I have bitten the bullet and being seen privately. I was diagnosed with hypertrophic cardiomyopathy in 2018. I take bisoprolol. Having had an episode in April which left me feeling really poorly I visited my GP to be told that it would be at least 3 months before I could see a cardiologist. So I am travelling across South Wales to Newport . Had an ECG from which cardiologist has picked up a wide QRS and left bundle blockage. Travelling to Newport again today to have echocardiogram and 7 day monitor fitted. I feel let down by GP and local hospital but understand that the NHS is struggling. I am 74 and have always been fit and healthy .

[Safeangel]

Hi Flossrudy it is awful that we have to resort to going private and I feel I might have to see a private cardiovascular consultant just for peace of mind of what is going on with me.

I wish you all the best and keep us all informed of your progress x