Good morning all,
New to the forum so wanted to introduce myself.
Waiting to have a new aortic valve which was a bit of a shock.
55 years old and up until I got diagnosed I went to the gym approx 4 times a week and hardly ever drop below 20 thousand steps per day.
I am finding the whole process very stressful, not the need for surgery but the waiting and constant phone calls that I have to make to chase results.
Wanted to speak with others going through the same thing.
Welcome on board Mitchpoppy.I had a new aortic valve fitted two years ago.
By far the worst part is the waiting. By far.
If you can’t accept the waiting then go private.
This is a major op. Those that do the op and those who deal with the various in house aspects are simply brilliant. Nothing like most hospital procedures, you will get the ultimate care from the ultimate professionals.
Good luck
BlackcatSooty. The bill
Would love to go private but simply can't afford to. I did pay for my CT scan due to the huge wait in York and that alone was £850 .
Private health care is mega bucks. And you dont know the end costs.I was in the situation of needing a new valve immediately if not sooner, And as soon as I got on the books of one hospital. it closed. Several times. I was somewhat "out of it" so I just thought its pay or die. With hindsight I had a couple of weeks to live. So it was go ahead private. Well over £40,000. But as I have survived two years my pensions foregone have broken even. Unique circumstances. It was a super posh hospital, deserted because the foreign patients would not travel here. The staff were lovely and they worked as a team.
But private or NHS it is an amazing operation. Best bit is that recovery was happening every couple of days.
Best wishes
Hello Mitchpoppy . I had an aortic valve replacement a year ago. Yes the waiting is the worst paart, and the constant chivvying of different departments to find out what's happening. If you're on facebook, I strongly recommend this group. It's brilliant & everyone is so supportive & friendly facebook.com/groups/1864350...
Hi Mitchpoppy,
For me three years ago nearly. I was 49 then, nearly 53 now, so very similar in age.
My self and at least one other contributor, Robinangel , did a diary of our events for people to read. If you have time it is certainly worthwhile. You can access them via our profiles.
The wait is a pain, I do agree.
Regards
Peter
Hi Mitchpoppy ! I had aortic valve replacement in December . Exactly 5 months ago - and I feel fantastic !!
The waiting is tough thankfully mine wasn’t too long and interspersed with tests and proceedures leading up to the the main event .
Like you I’d never been sick never been inactive and prided myself on the fact I hadn’t seen a Dr in 20 years !!
It was all a big shock !
However this forum helped hugely the first thing I read was that this op is more common than dentists extracting teeth !! And the people who do it are simply brilliant ; trust them listen to their advice they know what their talking about .
The op itself is a bit of a car crash but within days you are up and about making big improvements everyday .
Do what the staff tell you too !! If they say get up get up !! go to the bathroom - then go !!! walk walk and walk !! Even if it’s just up and down the corridors !! It aids recovery .
Within 6 weeks I was feeling really strong and walking 3-5 miles by 3 months I was back at work . The recovery is the journey to focus on ! Getting strong again ! And you will !
I am amazed everyday at how great I feel I really am !! I have so much energy and pep !!! Look to after the op … your new found energy and vitality and your great health !
I wish you good health ❤️❤️- the beat goes on !!!
Am 72 had my aerotic valve replaced and partial myectomy December at barts, feeling fine now
Hi Mitchpoppy as ever ‘here’ a posting has delivered on sound advice and moral support. I am similar age and fitness and currently on a watch list as have aortic calcification but not in need of intervention, my second bi year echo reported ‘no significant change’ some metric would have been helpful such as a % or degree. Did you get any ‘numbers’ I hoping that you might be able to share if you had a short progression from fit to to current situation. Any other contributions appreciated as to if it’s a matter of reaching a ‘number’ or a degree of illness before an intervention.
I had aortic valve replacement in November. It’s wonderful not being out of breath when I walk…I am full of praise for the whole process. I was seen speedily and didn’t have to wait long for the operation, which in the end was brought forwards as I was admitted with angina. The surgical teams are expert at knowing your risk, and how quickly you need to be seen. The care in hospital was exemplary, with 1 to 1 nursing in the days immediately post op. The NHS at its very best. Recovery took a long time though, and I was exhausted for a couple of months - but that is now in the past. Good luck.
Like you I was reasonably healthy, gym 1-2 a week, walking 5-10 miles most days with work. I noticed my capacity for exercise dwindle significantly late 2020. Severe aortic stenosis was diagnosed.
Long story short I ended up needing an AVR but at least the bypass I had 10 years earlier was still good. 😂
I understand what you are saying about constant phone calls trying to find out what is going on.
For the bypass I had two hospitals blaming each other for the appropriate paperwork not being received etc.
Eventually I saw the consultant who said to me 'how come you are still alive?' He admitted me right away and I had the bypass.
For the AVR 10 years later on, the two hospitals communication was still pretty bad even though I was an inpatient at the time. Luckily for me my wife kept them on their toes and if it wasn't for her and obviously.... the surgeons I wouldn't be here.
Keep chasing them or you could get lost in the system. They might think you're being a pain but its your life not theirs.
I was 59 when I had my AVR and the surgeon and I agreed on the mechanical valve. It was best option for for me.
Good luck with your surgery.
Hello, I think the waiting is definitely the worst part of any medical journey! My suggestion would be to keep notes of everything and follow everything up. Hard work as times, but so worth it.
I say that having had experience of my husband being diagnosed with one heart condition and promised an MRI that never happened. I chased it up, he had the MRI and then had to have his Aortic valve replaced. Somehow it hasn’t been picked up from the Echo, CT etc that he’d had. If I hadn’t chased and he hadn’t had the surgery he wouldn’t be here now, 4 years later.
Best wishes to you and your loved ones.
Hi there
I had a toe in May and have only just received my results. I was getting anxious so had to phone and chase up and only then the consultant rang me to tell me that i had a bicupsid aortic valve that is severly narrowed and needs to be replaced and mitral valve that needs to be repaired....wow that shocked me and my BP shot through the roof. I also found out that my doctor was sent a letter back in may for me to be prescribed with BP meds of which was missed. I had to tell my dr of this and now last week have been given Ramipril and furosemide which is making me very dizzy so going to try taking ramipril at night as the research i have done seems to say that side effects will be decreased. Anyway yes it seems that one has to chase up everything. Good luck
Had aerotic valve surgery at st barts December 2021, you will have many tests before your surgery, you will also meet with a surgeon to explain things to you
Unsuitable for Aortic valve replacement
Aortic valve replacement
Aortic valve replacement 
Aortic valve replacement
Aortic valve replacement 
