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valwin2

Hi ,I am new to this so please forgive any mistakes,I have been on a waiting list for surgery for aortic/mitral valve replacement and possible tricuspid repair now for 13 months(a product of the UK. NHS system) I know in myself I am going down hill the longer it drags on and I worry about the effects that the wait is having on my heart and body,I have had all the tests ,TEE,etc and as far as I know my arteries are still clear,so I was told that I am in no danger of a heart attack.Any advice/help will be greatly recieved
thanks in advance
Val:confused:
 
hi val!
welcome to this site. it is a wonderfully supportive place and it has been my savior throughout my husband joey's surgery (pre and post). you've come to the right place; we will hold your hand through this whole thing if you need us to.
no question is too silly, so ask all you want. chances are, someone here will have had some experience in what you ask about.
what are your symptoms? how old are you?
good luck,be well and please keep us posted.
-sylvia
 
thanks a lot for your reply its nice to know that there are people out there who have been there,I am 56 years old and live in the UK,I always knew I had a mirmur but was told I would not ned surgery until well into my 60's,so it came as a surprise at my last 2yearly check-up in March2000 that I needed an op,we did all the tests and consulted the surgeon and was told I would have a wait of 3months ,but it keeps dragging on ,our health service is in something of a mess and waiting lists just seem to get longer,I was hoping that it would happen before the new year but this seems more and more unlikley ,I have a son in the US with a grandson I am still waiting to see and was told last weekend that another is on the way and due in July ,so I can't wait to get well and get to see them:)
I am so worried that the long wait will also be having some effect on my body,I have become more and more housebound and now have to go every where by car and as I do not drive it gets a bit boring waiting for my hubby to get home.
thanks for advice
valwin2
 
Hi Val,

I just wanted to say welcome to the site. There are many folks here that can help out with your questions. It is a holiday weekend here, so please be patient. I am sure that some folks that have had similar experiences will repsond soon. I had emergency surgery for an aortic dissection and now have a mechanical aortic valve.

It must be very frustrating to be on a wait list for surgery. I hope that you get to the top of the list soon!

Wishing you good health,

Rob
 
Hello Valwin2, Welcome

Hello Valwin2, Welcome

You've found the valve replacement secret clubhouse, LOL. Seriously, this is a wonderful site, filled with many warm friendly people who understand much of what you are going through.

It's a tough time, needing surgery and having to wait, but use this time to mentally prepare yourself with information garnered from all the informative posts here. There's all kinds of help from what to bring to the hospital to what to wear after surgery at home, discussions about different valves, surgical procedures, medications, you name it it's here.

Feel free to ask as many questions as you can think of, we'll all try to help. Most of all you have many new friends.

What has caused you to need valve replacement, and what symptoms do you have?
 
Hey Val,
Welcome to the family! I understand what you are going through... the waiting and the suspense... it is hard. My own mitral valve surgery was postponed five times because of a high white count. Dragging it out like that can be hard on you, but please try to keep your spirits up! A positive attitude will be very beneficial in your recovery process.

Again welcome and take care,
Zazzy
 
NHS waiting lists

NHS waiting lists

Hi Val

Welcome to the site. I also am on the NHS waiting list to have my aortic valve replaced. I live in Scotland. Where are you from? I saw the surgeon in September of this year and was told that I would get my surgery around Springtime. Not sure exactly what month he means. I was first told by the Cardiologist that the waiting list was around 2 to 3 months but it now seems more like 6. He did say however that I am to contact them if I get any worse and they will try and bring it forward. I'm coping ok at the moment. I'm still able to go to work but have had to cut out all my sports etc. Anyway I know how you feel as the waiting itself is very stressful. You just want to have the surgery and get back to normal a.s.a.p.

Peachy
 
Waiting

Waiting

Val - a friend of mine had his AVR in Brighton (60 miles away) as the waiting list was so much shorter there. This was on the NHS. I know we British are well known for not wanting to make a fuss - I just wonder if you think it might help to be a little more gently assertive in asking questions?

The "not knowing when" is a such a stressful situation to be in and must make you feel very helpless.

I do hope you get news soon so you can put it behind you and get on with your life and enjoy your new grandchild.
 
Val,

I agree with Gillian, I was very lucky to have my surgery privatley thriuhg a work scheme but at the time I remember speaking with the surgeon and he gets really frustrated with the NHS system and not being able to help those who need it. Waiting lists certainly difffer vastly around the country and again as Gillian says we british sit back too much sometimes and take what we are told by those we see as being in authority without making a fuss, demand to see the surgeon/doctor again and get them to give you a definite date, cant loose anyhting....

Good luck and I hope you get some positive news soon.
 
Hi to all who have posted replies,the response was quite overwhelming, so first I would like to say thanks it has made me realise I am not alone.We are in the middle of a campaign to try and sort out things not only for me but for all the others on the waiting list,we have been in touch with our local MP who in turn has been in contact with the hospital,my husband is at this time undergoing talks with the complaints person at our hospital and we have writen to our local paper who on turn wish to do a story,here in Leicester there is a lot of trouble with the services and the paper is keen to highlight the problems,I am not one to come out into the open and talk about these things but I have reached the point where enough is enough.
I am told my condition is due to rheumatic fever as a child but no one in my family can remember it occuring,at the moment I am more or less housebound ,swelling in my hands and feet,extreme breathlessness at any activity,going upstairs entails a 30 min sit down to recover, five pilows at night to sleep plus all the little aches and pains,sorry I don't mean to sound sorry for myself, I do try and keep a positive attitude.
I was told in early 2000 that an op was needed but before I could go on the list I had to undergo all the tests which took about 6/8 months and there were only 3 of them,inJan2001 I saw the surgeon who said yes this is an urgent!!case it should be done within 2/3 months, but here we are Nov and nothing ,we did find out however that my name had been on the waiting list since Oct 2000.crazy isnt it?
;) will keep you updated
thanks again
val
 
Hi Val

Hi Val

Hi Val ...I too have experience of the NHS and it's wonderful waiting lists .... I was born with Congential Heart problems and am now needing more surgery ... I made the stupid mistake of asking to see a Congential Heart Consultant for a second opinion ...silly silly me !.....it just meant I had to wait ages to see her only for her to confirm what the other Consultant had said ...I have been waiting since Oct 2000 and am still at the testing stage ...I go in next month for more tests . I have realised through this forum how little information I have been given about my condition by my consultant ..when I asked her to explain what the results of my echo meant ..she told me I didn't need to know ..the Americans here seem to know every little detail ...I'm amazed by the difference in our systems ....anyway good luck and try to enjoy the holiday season ..keep in touch
Scottie
 
hi to all ,had good news in the post today I have a date at lastI go in on the 20th Dec and have the op on the 21st ,I must admit to being in a state of shock,It seems our local health authority has paid for about 60 ops to be undertaken at one of our private hospitals in Leicester and I am to be one of them,so now I will be asking advice on the run-up and post op ,although it means I will be in over the Christmas period I think it will be worth it and my daughter is going to have a Christmas Day party with the grandkids when I get out and it does mean of cause I will get my visit ti the US next year
will keep youall updated when I calm down a little
val:D
 
hi val!
so glad to hear you finally have a date! we'll keep you company while you wait (i think the wait is worse than the actual event). you will feel so much better once this is done. please keep us posted.
have a good holiday and enjoy your family.
be well and God bless,
sylvia
 
Hi Val,
That is great news, you will get good advice from our friends here at VR.com so start and ask all your questions,

After waiting for so long you must be really pleased and relieved,
I will be thinking of you as you face your surgery,

Kind Thoughts
Jan
 
Hi Val,
Welcome to the site and I'm so glad to hear that you have an actual date. My surgery was 4/97 - aortic valve replacement. I too was told that I must have had rheumatic fever as a child, although no one in my family was aware that I ever had rheumatic fever. Like you I was diagnosed after the dr heard a murmur. Went to a cardiologist and after tests was told I probably wouldn't need surgery for 10 yrs - but it only took 3 yrs until my valve got really bad. My symptoms were just starting when I went in for surgery - I was still able to walk and do my everyday chores. It took about a week from the time my cardiologist told me to have surgery "at once" - until I actually had it. I'm sure the waiting is very frightening for you. I just had to wait a few days and was an absolute basket case. This site was not here yet and so I had to go it alone. Whatever questions you have - be sure and ask them. Where in the States is your family?
Sharon
 
Hi Sharon,yes I think the wait for a date was hard ,but now I have it,I am starting to feel a bit nervous and after so long it also does not seem real yet part of me still cannot believe it is going to happen:p
My son and his wife (who is an American ) live in North Carolina,and I can't wait to see them again and my new grandchildren,there is a lake nearby with a joggers track and my son and I have abet that him and I will run around it when I am well so I am aiming to visit late August 2002.
:D
Val
 
Hi Val,

Welcome to our VR.com family! Glad you'll be with us to go through this. I never found this forum until after surgery. I so happy for you that after all this time you have a date!
I too was told I must have had Rheumatic Fever as a child. I have 11 older brothers and sisters. None of them ever remember me having Rheumatic Fever. It's a mystery being as I always went for physicals and prior to about 1 year 1 month ago no doctor ever heard a murmur!
:confused:
Feel free to ask us any concerns you have, as there is always one of us that will have an answer or can share their experiences with you. Hang in there and before you know it all will be behind you. I will be thinking of you too, as you face your up-coming surgery!
 
To Val

To Val

Congrats on getting a surgery date. You won't regret the surgery. I just had mine in the USA 09-13-01, and do not regeret it for one moment. I just had my bad and more good days. It just takes time to heal, but yo go for it. Hang on to that date like a life preserver. You will do fine. I was born with a heart murmur myself. I had repair when I was eight, and was told then that one day, the aortic valve would have to be replace. I had only a fifteen year guarantee on the repair. It was almost 28 years later I had the valve replaced, and with a St. Judes' at that. I feel better now. I am 36 and before surgery felt older than you. I was not totally housbound, since I had to work, but was getting more tired and walking was becoming more dificult. Glad you are having the surgey done soon. You keep us posted on how you are doing. And keep your chin up and hang in there. It will be over soon and you will be feeling better in no time.


Caroline
09-13-01
Aortic valve replacement
St' Jude's valve
 
Val,

Great news you have your date for the surgery. It will be alot easier than you imagine and the improvement in quliaty of life will be considerable. As I mentioned I was lucky enought o have my surgery privatley through my employees insurance, I saw my surgeon on the Monday and was given thre choice of the following two Mondays, my symptoms were now where near as bad as yours either, I often feel quite guilty that I was able to have my OP so quickly when there people like you that have to go through what you do to get it done.

Best of luck and I hope to hear how it all goes
 
Hi Val, My name is Joy Paulson, and I too had Rhuematic Fever as a child. I was 5 months pregnant with my second child and I lapsed into a coma. I feel very lucky that I live here in the US, near a major medical facility, so I could have my valve replaced within the year. I have had a tough year,but I know it is tougher in other parts of the world. I was lucky to have my surgery, though. Mine was so urgent that I had a vlavuplasty so I could make it through the pregnancy, and then when I had the baby, my symptoms were worst, not better, and then I had my valve replacement surgery at the UW in Seattle, WA. I know if it weren't for the people on this website, I couldn't have gotten through my surgery and healing time. I am still healing, and I will be for a while. Good luck on your surgery, and I am glad you have a date. You will be ok, and we'll see you on the other side of the mountain. Take care, and God Bless.
 
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