New UK member, seeking info

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Chris Green

Hello All,

Am I glad I've found you. I've felt lonely trying to make others understand my feelings towards my condition. I have a bicuspid aortic valve that is currently stable, but will probably require intervention in the next 10 years.

I am interested in any info with regards to this op in Britain. What choice we 'poor' Britons have on the good old NHS. How our standards in this area compare with the US (are we getting second best?). Do we take our lives in our hands trusting our lives to such a chronically underfunded enterprise.

Any info greatly received.
 
Hey there Chris - you have truly come to the right place. We have Scottie from Scotland, Gillian from UK and Jonathan, too; Billy from Ireland. I know they will be along, as well as the rest of us to give you a very nice welcome to our home and advice/information on all your questions. I can't address valves because I had bypass and not a new valve, the site is solely for valve replacement recipients and soon to be recipients like you. They let me hang in here, tho.

It is midday here and most of the members are at work and will check in when they get time in the evening, I guess. So look for some info in a few hrs. God bless
 
Hello Chis,

Just wanted to welcome you to the group.. I live in North Carolina, had my aortic valve replaced 12-15-00. Can't answer your questions regarding differences. However, there are those that can. Again glad that you found us. You are not alone!!
 
HI Chris in the UK

HI Chris in the UK

Hi Chris!
Welcome. Where are you in the UK?
Scotte and Gillian and Billy will be better able to answer you NHS specfic questions. but, I have some experience with NHS headaches. mY Husband is from Glasgow and his aunt suffers from a heart problem that she can't get resolved. The NHS is great at times and others, it stinks.
FYI- I had a bicuspid aortic valve replace using the Ross Procedure on July 12.

Good luck
-Mara
 
New uk member seeking info

New uk member seeking info

Hi chris
Welcome to this wonderful site my name is Jan and I have only been a member of this group for three weeks but the support and advice I have received is unbelievable, I was told I had aortic stenosis a few years ago I had very few symptoms and used to go for a yearly check up,Last oct I was told I would need valve replacement within five years But that seemed far away I went for a check up on June 22 and was told the surgery would need to be done sooner The Cardiologist said I will probably have it done within six months I was shocked to say the least, Well I have an appointment to see the Surgeon tomorrow (tuesday)And I have taken all the advice I,ve been given by the wonderful members I have made a list of questions to ask and I AM going to expect answers to them all
As you say in your post we in the UK are at the mercy of an underfunded NHS and it can be a worry I have been having Orthopedic Treatment And waited !8 months for one operation. I just hope I don.t have to wait long for the valve replacement, I will let you know how it goes, I am afraid but the sooner the better then I can get on with my life, you have come to the right place It is a wealth of information so ask away i am sure you will get the answers your seeking I did, and the support you get from people who have had the same treatment is fantastic
keep smiling
jan
 
Hi Chris

Hi Chris

Hii Chris ..I can't speak for the NHS as a whole ...as I live in the Scottish Highlands and have to deal with Edinburgh which is some 5 hr drive away ...I'm in almost the same position as you ...on a waiting list here ...I've been told if I'm not an urgent case for a valve replacement I could wait up to two yrs for the op ....I asked for a second opinion ...I wanted a Congential Heart Disease Consultant's opinion and am now waiting for it ...I reckon I'll wait 3-4 months for this ..sorry can't be more help ....
Good luck and keep in touch ..it will be interesting to compare notes on the NHS
Scottie
 
Hi Chris - Welcome aboard

Hi Chris - Welcome aboard

Hi Chris

I must admit that like Hensylee, I have not had valve surgery. I'm the 'odd-man-out' Irishman who appears to have been adopted by this forum when I arrived here last September. I was investigating my late wife's death following valve replacement and I only wish that this site had been around in 1998 when Myrtle had her surgery.

You can read Myrtle's story if you go to the personal stories section in the 'old' forum - It's under Myrtle McCombe.

As I haven't had surgery myself, I am not in a position to advise on the technical issues, I can however comment on the NHS and I will endeavour not to say anything libelous.

My advice to you is to stick around the good folks on this site and they will give you good advice on what questions you need to ask the Guys in the white coats. You will learn enough on this site to leave your medical advisors in no doubt that you know what you are talking about and hopefully that will make them sit up and pay attention to your problems.

If I had the last three years to live over I would make a lot more noise in that Hospital and I would get attention from those Guys who give us all the impression that they are on a level with God. In the UK, we are patients, while in USA folks are Customers. They pay for their health care and they have the option to go to whoever and wherever they decide for their surgery. The attitude in USA is also so different in that Doctors appear to listen as well as talk. As you know we are dictated to and if we question anything we just get pushed further down the waiting list.

If you are not receiving the necessary attention at any time, do whatever you feel necessary to redress the situation. Go sit on Tony Blair's doorstep in Downing Street if necessary. If you're lonely there, call me and I'll join you.

Even when your surgery is done, don't relax the pressure. Myrtle was ten weeks down the road and they postponed her first check-up on 1st July. She told them she was having problems and they gave her a date for 24th August. She died two days later on 3rd July aged 44 years.

I think you get my drift - Good luck, God Bless and do keep in touch. You are on the best site in the Universe for valve information.
 
Hello Chris - so glad you found this site. I had my aortic valve replaced in March this year and have had so much help and support from these people.

I have been intrigued all along by the difference between healthcare in the US as opposed to here in England. Over there it seems like its very much a buyer's market with people shopping around looking for the best quality. Here its much more "like it or lump it". But maybe we have more choices than we think. I believe its very much a question of asking a lot of questions. For instance, if waiting lists are high in someone's area I've heard of them having their operations elsewhere - even in Germany perhaps.

I have health insurance so didn't have any waiting problems. I chose my own cardiologist as my husband has been seeing him for years - Dr Stephen Jenkins at St Thomas' Hospital in London. And I took his recommendation of surgeon - Dr Tik Shabbo - as they work closely together.

I get the impression over the years that our standard of high dependency heart care very good. Its down the line that we run into real problems.

I recommend you look at the excellent website of Jonathan Upton (http://www.braveheart.eurobell.co.uk) which I think you will find has much interesting information. He goes to the Brompton Hospital in London. He has been a great support to me and even phoned me in hospital the night before my op.

If you look up Caroline under the Members list you will see her mother Bridie has had surgery in Bristol.

It sounds as if you need to know just where you stand at this stage to try and set your mind at rest a bit. I do hope you will share any interesting information you glean with us here.

Best of luck.
 
Last edited:
Thankyou

Thankyou

Thankyou all so very much for your replies.

At last I feel I have an outlet for my concerns and a central point of information.

To Jan. Please keep me informed of your experiences. I would love to hear them.

To Scottie. Sounds like we're in a similar place (physically that is, not geographically! I'm in Somerset). Is there such a thing as a CHD specialist, or is this just a cardiologist?

To Billy. Thankyou for your wife's story, I can only offer my condolences. It is an example of precisely what I fear. We hear all the time of people dying waiting for bypass ops.

I think the problem we have in this country is the culture of our medical care, with the doctor as god (as you point out Billy), and the patient as unquestioning underling. OK, progress has been made, but I feel guilty even writing my cardiologist letters, because I know he is overworked, due to the massive shortfall in his speciality. It took him 6 months to answer my last one anyway. Medicine is shrouded in secrecy, because knowledge is power. The fact that we have to ask each other for guidance suggests there is a major shortfall in our access to the information we want.

I want to know EXACTLY what options I have as an NHS patient, but the words 'blood' and 'stone' come to mind. I am not confident I am receiving adequate attention, it appears the Americans can give you all the technical detail regarding their current state, all I actually know is that it's 'probably' a bicuspid aortic valve, "ring up the British Heart Foundation and they'll send you a booklet".

Does anyone know if there is anywhere we could get some honest answers, 'straight from the horse's mouth' as it were. A practising cardiologist, or surgeon, who could truly enlighten us?

We could really do with a 'Rough Guide' to valve replacement within the NHS, outlining the options.

Thanks for reading my bluster, and thank you all again for replying, it's made my day, and it's only just gone 9 am!

Chris Green
 
bicuspid valve

bicuspid valve

Hi Chris. I live in the Isle of Man and had my aortic valve replaced in August'98. I was told that it would need doing when i got to about 50 or 60 but it seems when these valves deteriorate they go fairly quickly. I had my surgery in Blackpool and found the surgeon to be very upfront and offered to send me to Manchester for the Ross prcedure if i wanted it. I did not know until after the surgery that it was bicuspid as they thought i might have had rheumatic fever as a child. I do find that i have to put suggestions to the consultants such as may i have Marfans especially as my aorta is dilating and they don't seem to take offence but do get as much info yourself so that you get the answers you want. Keep in touch and good luck
 
Chris, there is one other site besides this one that I recommend to folks who have questions about heart. It is about.com - go there and look for heart disease/cardiology (Dr Richard N Fogoros) Dr Rich is an electrophysiologist cardiologist, prof, author, etc. He can answer questions, tho not diagnose on the internet. When you ask a question, he is back to you soon. We have others from UK on there, too. God bless
 
Hi Chris

I also need my aortic valve replaced. I live in central Scotland and attend the Glasgow Royal Infirmary. I have been attending there since I was a child once a year for a checkup. I have now been told at the age of 40 that I need my valve replaced. The Cardiologist told me that the waiting time would be around 2 to 3 months which rather surprised me as I expected it to be longer being the NHS. However I am at present waiting to see the Surgeon first. I did not think to ask how long it would take before I get an appointment to see the Surgeon. This could take months and I will not go on the waiting list for my replacement valve until I have seen him to discuss the procedure. I know however that when I mentioned to the Cardiologist that I did not want a mechanical valve he was very insistent that this was the best for me and he certainly was not for even considering a biological valve. However he would not go into much more discussion and said this was a matter for the Surgeon but he would also advise me to go for a mechanical valve. Unfortunately unlike our friends from USA etc who can pick and choose their Surgeon, Hospital and get many choices as to procedure we have to make do with what we are given. However I will be asking the Surgeon lots of questions and no doubt it will be like trying to get blood from a stone.
 
Hi again Chris

Hi again Chris

After asking for a second opinion (as having been okay since my last surgery nearly 30yrs ago I was shocked to be told I needed a valve replaced ) I was referred to a Consultant Cardiologist who works out of the Sick Childrens Hospital in Edinburgh but has a particular interest in the lifelong care of individuals who have been born with CH abnormalities including those who are now adults (quoting her letter).
Athough this has meant I have to wait another 3 -4 months (I reckon) and the whole process has taken since last Oct when I had my annual checkup I feel much happier that the right person for the job will be giving her opinion ..even if she says the same thing .
Good luck and stay in touch and let us know how you get on ..I hope the wheels of the NHS travel faster for you
Scottie
 
I,m on the waiting List

I,m on the waiting List

Hi Chris
I saw the surgeon Yesterday,and am disappointed I did not get answers just shrugs of shoulders and maybe,s
He has decided he wants me to have an angiogram test so he now has too write to the cardiologist who refered me to him (who is at another hospital) to get me on the waiting list for the angiogram, At my last appointment the cardiologist did not think it was needed But I suppose it is for the best at least they will have a clear picture of my heart I wonder why this was not done before is it cost or just lack of communication,
The good news is the waiting list is six months and he does not think it will be dangerous for me to until then, I have had more positve information and support from VR .com am I glad found It
regards
Jan
 
Hi Jan

Hi Jan

Sorry to hear that you didn't get more definate news yesterday ...this seems typical of the way the consultants and surgeons work here ...with me anyway ..I find the waiting really frustrating ...somedays worse than others ..and today is a bad day ...I just would like to know one way or the other ...and I would like to be an American and be done with these horrible waiting queues ....I have also found it difficult to get straight answers to questions and if I push all I get is so much medical jargon I wish I hadn't asked ....
Thankgoodness I found this site ...keep in touch
Scottie
 
Jan

Jan

Jan - I had my angiogram before I saw the surgeon. I understand the main reason for it was to see the state of the coronary arteries and to ascertain if I would need a bypass as well as valve replacement (I didn't). As far as I can see from this forum, the Americans seem to have their cardiac catheters days or hours before surgery.

As most people here would say, you are going through the worst now - the waiting, the uncertainty, the anxiety.

Thinking of you and wishing you all the best.
 
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