Need some positive vibes :(

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*Jo

Member
Joined
Apr 11, 2012
Messages
13
Location
UK
Hi, I could really do with some support from people who know what I'm going through :( I had keyhole surgery aged 5 and open heart surgery to widen my AV when I was 7. That was 26 years ago, and whilst I remember being in hospital, I don't think I quite understood what was happening.

Yesterday I was told I had to have my AV replaced; and it would be this year - probably in the next 6 months.

Added complications - my valve measures 14mm with 105mmHg. It will be a childrens surgeon as the procedure will require them to cut away a bit of the wall to fit a slightly wider valve in, and apparently childrens surgeons are more experienced in doing this.

I'm petrified. My mum had an AV replacement 2 years ago and felt the same beforehand, but I have always felt like the unluckiest person in the world, and really scared my negative approach will hamper my recovery. I just can't help worrying that something will happen :(
 
*Jo,
I had surgery when I was 11 years old and it was probably good that I really didn't know what was happening. But after that I felt sort of special. Anyway I had my second surgery to replace my aortic valve 42 years later and it was a lot more scary but now that it's done I feel great. The thing is, they do this type of surgery a lot, in fact it is pretty common. So in some ways you and I are some of the luckiest people around. We survived our childhood even with defective parts whereas maybe 10-20 years earlier that type of surgery was not available. Now as we face our adult lives we are lucky yet again with the modern advances in heart surgery, with this surgery we both have the opportunity to have long, healthy, and high quality lives.
All my Best
John
 
Jo, WELCOME to our family ......you are not alone and are in really good company..........many of our members have been where you are and as a matter of fact I am sure Sarah , also from the UK , who just turned .............not polite to tell a ladies age even if it is 18 DOH!!!!!!



.
 
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Your being petrified just means that you are perfectly normal. I think most of us here were when we were told that we were facing an operation. But while this is a stressful situation for the patients, open heart surgery is an everyday task for the surgeons and their team in the hospital. Everyone pretty much agrees that the waiting is the hardest part of their surgery, and it's common for people to post afterwards a statement like "why did I worry myself silly for X months." We are here to provide whatever sort of support you need, whether that's by answering questions (none of which can be considered stupid) or simply providing you with sympathetic ears (maybe that should be eyes) if you need to vent.
 
The chances of something along the line of bad happens is actually quite low. I think most undergoing AVR suffer a little, but it's not that bad considering its a life saving procedure.

Other than a handful of days I'd rather never experience again, the adventure of AVR is something I actually found interesting. It makes for a good lazy man's adventure as you don't actually need to do too much.

Did your mother's AVR go OK? What were her thoughts of undergoing the process?
 
Thank you all :) I really am terrified, but knowing I have somewhere I can come and talk is a great relief. I read another post on here and kept seeing the words 'sudden death' and went to bed in a panic. Have tried not to think about it today, but once a phrase gets stuck it's hard to remove it :( I just wish it was all over and done with and I was sat here typing whilst recovering.
 
Thank you all :) I really am terrified, but knowing I have somewhere I can come and talk is a great relief. I read another post on here and kept seeing the words 'sudden death' and went to bed in a panic. Have tried not to think about it today, but once a phrase gets stuck it's hard to remove it :( I just wish it was all over and done with and I was sat here typing whilst recovering.

Sudden unexpected death syndrome (SUDS or in infants SIDS) While much of this can be disputed as I am aware of it from an ICD ( Implantable cardioverter-defibrillator) support site the part I highlighted in red is very valid and once a condition (eg BAV) is determined then we are treated for that SUDS appears to have a cause that is still unknown


From Wikipedia, the free encyclopedia



Sudden unexpected death syndrome, or Sudden unexpected nocturnal death syndrome (SUNDS), or Sudden Unknown Death Syndrome is sudden unexpected death of adolescents and adults, often during sleep. Sudden unexplained death syndrome was first noted in 1977 among Hmong refugees in the US.[2][3] The disease was again noted in Singapore, when a retrospective survey of records showed that 230 otherwise healthy Thai men died suddenly of unexplained causes between 1982 and 1990:[4] In the Philippines, where it is referred to in the vernacular as bangungot, SUNDS affects 43 per 100,000 per year among young Filipinos. Most of the victims are young males.


Contents


Causes

SUDS has been cloaked in superstition. In Thailand, it is particularly believed to be linked to eating rice cakes.[citation needed] Filipinos believe ingesting high levels of carbohydrates just before sleeping causes bangungot.

It has only been recently that the scientific world has begun to understand this syndrome. Victims of bangungot have not been found to have any organic heart diseases or structural heart problems.[citation needed]

However, cardiac activity during SUNDS episodes indicates irregular heart rhythms and ventricular fibrillation. The victim survives this episode if the heart's rhythm goes back to normal
. Older Filipinos recommend wiggling the big toe of people experiencing this to encourage their heart to snap back to normal.

In the Philippines, most cases of bangungot have been linked with acute hemorrhagic pancreatitis by Filipino medical personnel although the effect might have been due to changes in the pancreas during post-mortem autolysis. In Thailand and Laos, bangungot (or in their term, sudden adult death syndrome) is caused by the Brugada syndrome

Features

The condition appears to affect primarily young Hmong men from Laos (median age 33)[9] and northeastern Thailand (where the population are mainly of Laotian descent).[10][11] There is a strong hereditary component and the victims tend to die in their sleep. From experience, bangungot is the sensation of the victim being fully aware of their surroundings however being unable to move. The victim tries to scream but cannot, and there seems to be a strain on their chest.[citation needed]

[edit] Treatment

The only proven way to prevent death is by implantation of a cardiovertor defibrillator. Oral antiarrhythmics such as propranolol are ineffective.[12]

[edit] Folk beliefs

This phenomenon is well known among the Hmong people of Laos,[13] who ascribe these deaths to a malign spirit, dab tsuam (pronounced "da cho"), said to take the form of a jealous woman. Hmong men may even go to sleep dressed as women so as to avoid the attentions of this spirit.[citation needed]

Bangungot is depicted in the Philippines as a mythological creature called batibat. This hag-like creature sits on the victim's face or chest so as to immobilize and suffocate him.

[edit] Names in different languages
Bangungot (Philippines):[14] The term originated from the Tagalog word meaning "to rise and moan in sleep".[7] It is also the Tagalog word for nightmares.
Dab tsog (Laos)[13]
Lai Tai (Thailand) (Thai: ใหลตาย; meaning "sleep and die")[10][15]
Pokkuri disease (Japan),[16] hukuri
 
Jo,

The likelihood of sudden death for you is quite low if not zero. Think about it...if your cardiologist thought you were at risk for sudden death do you think he/she would tell you that you need surgery in 6-12 months and not say ASAP? Most people who die suddenly (I know the thread you are talking about because I posted on it) either don't know they have a critically diseased valve/aorta or know but have refused to get it fixed. It sounds like you have been followed regularly so please put the sudden death thing out of your mind.
 
Thanks Bryan. I haven't been regularly checked, my last Cardiologist sent me away a year ago with the impression that everything was fine. It was only when I miscarried and they did tests that they realised it needed doing. The 100mmHg worries me a bit as it seems quite high compared to most people. I did tell my Cardiologist I was worried about something happening between now and the surgery, and she said she wouldn't let me home if there was a risk; but I still doubt everything I'm told :( Not helped when reading the NHS website that says 1 in 50 die of having the valve replaced - really not impressed with their published information. I'm going to take tips from the sticky notes on here and wait until I see the Cardiologist to get it from the horses mouth so to speak. Being on here is helping so much, you guys are really supportive and this has been my first thread. I hope I can be as much help to others as I go through my journey. Thanks again x
 
Ooo....I see you had the Ross done. They spoke about that but didn't think it would be relevant for me?
 
I don't understand that? And has made me panic :(

This is what helped me when I read that sudden death was a possibility....maybe it will help you keep thiings in perspective, too. Hope so! :)
Take a look at the back of a Tylenol (acetaminophen) bottle or any OTC (Over The Counter) medicine you have. You will likely see a list of possible side effects as long as your arm. Does that mean you are going to get them, especially the really rare ones? Absolutely not. Would you agree with that? Same with the sudden death thing.....on rare, rare, really rare occasions, it might happen. But for someone who has been evaluated from a competent physician who thinks you are OK to wait awhile for surgery, the chances of sudden death have to be extremely remote. Chin up!!
 
Hi Jo,

First of all when you say you are not impressed with the 1 in 50 statistic that comes out to 2% chance of not surviving. I have heard that 50 out of 50 people die if they don't get their diseased valve fixed (that comes out to 100%). See where I am going with this? Also remember that the 2% is for all valve surgeries including much older people and much sicker people. I have had very simple procedures done and the odds were 1% so in the big picture valve surgery is very safe.

Yes I chose to have a Ross Procedure in 2004 but then my aortic root and ascending aorta became dilated so they repaired that and also put in a tissue valve. I wouldn't know the reasons for why they said that but the Ross Procedure is not for everyone. I'm sure they have their reasons but you could ask them for more details why they don't think it's relevant for you. My hope was that I might get 20 or more years without another surgery but it didn't turn out that way, but I have no regrets.

I know getting news that you need OHS is scary. I cried like a baby driving home after they told me I needed my first one. But whether you realize it or not those surgeries you had 26 years ago carried a much higher mortality rate then your upcoming surgery will have. When I found this place in 2004 before my first surgery I was a basket case. But the people here really helped me a lot and understood the emotions I was going through. We will do the same for you. :smile2:
 
Hi Karla - hmm, I know what you're saying, and I have never had any side effects - until this week when I had an allergic reaction to some face cream and then suffered drowsiness and discoloured tongue from medication to help it :) I really do feel like a very unlucky person at the minute. But I really do understand what you mean, so thank you xx

Hi Bryan - I understand what you're saying too - when I had surgery at age 7 it was a 50/50 chance I'd survive it, so the odds are much better this time round. I suffer really bad anxiety that I've been treated for before. My Cardiologist has suggested going and getting the medicine that helped me before to see if it can relieve some of my anxieties now - and also recommended I see the councillors too.

Thank you so much, I've ordered leaflets from the BHF and made a donation - hopefully they will be a bit more positive than the NHS website :) xx
 
Hi Jo, sorry to hear you need another sugery but glad you found us. hopefully it will help calm your nerves. As other said the chances of having a sudden death are probably very very low with your valve issues and the fact you werent rushed to surgery I would take as a good sign.. I'm pretty sure you were reading about the rare chances of dieing sudddenly related to your BAV, and not like sids or other sudden death syndromes.
I'm glad you are going to a pediatric surgery not only do they have more experience with wt your valve and the area around it needs done, but for the most part CHD surgeons have the most experience in operating on people who've had multiple surgeries and the things that can go along with that. I'm surprised your odds were 50/50 when you were 7, but hopefully it should make you feel better knowing how much better things have improved since then as far as the surgery and the post op time. They really do know not only what can cause a bump here and there but know the best way to prevent or even treat most of the common post op issues.
You might also check out the forums at the adults with CHD org's site http://www.achaheart.org/ there also is a great adults wth CHD site for Uk patients called GUCH but I dont have the link right now
 
Hi Jo and welcome to the boards :)
I'm the 18year old Gregs talking about lol ;)
I'm waiting for my 6th lot of heart surgery, a pulmonary valve replacement,
I've already had 2 aortic valve replacements, a conduit & pulmonary valve replacement, a truncus repair & aortic repair,
Where abouts are you having your op done?
If i can help in anyway at all just shout :)
Love Sarah xxx
 
Jo,

As stated already it's OK to be scared. I know I was. But your young and that will work in your favor. The odds are very good for a successfull outcome.

Stick with us. You now have friends all over the world.

Gary
 
Hey there Jo,
Yeah the scared to death is a common syndrome in what I call the human condition. It just shows that you are human.
I go in tomorrow for a total root replacement to fix an aneurysm and replace my aortic valve again which I had done 7 years ago.

Logically I know that the procedure is very safe and mortality odds are at 0 to 1 percent since this is elective (not waiting until it blows lol)
but my human side says oh crap am I going to make it. Right now my logical side is winning that battle but tonight it will be my human side because our coping skills decline as the more tired we become through the day.
Tomorrow at this time I will be on the table getting this damn thing fixed for the last time.
You are young and strong and that is a huge thing in your favor. And now you have huge network of friends that know how you feel. You are not alone in this. Just remember to let yourself be human and accept it for what it is. That does not make you any weaker or vulnerable.

God bless and good luck,
Keith
 
Hi Lyn - I'm kinda glad they are at least recommending I have it done by those best placed and experienced :) Thanks for the link, I'll check it out :D xx

Hi Sarah - I can't believe you have had to undergo so much surgery! I wish I had your strength :( I was given the option of considering a cow/pig valve, but warned it would need replacing again in 10-15 years. I opted for the metal as I couldn't imagine "choosing" to have the surgery twice. I'm in Yorkshire so will be having it done at LGI (same place as my mum had hers, but different surgeon).

Hi Gary - thanks, I don't feel that young though :) Although compared to those who were in when my mum had hers done I'm a mere child at 33!

Hi Keith - My thoughts are with you for today, and hope all has gone well. It's strange how I'm thinking positive vibes for others yet can't seem to think them for myself. Maybe I need a good kick!

Thanks to you all, you are giving me the support and encouragement that despite their best efforts, those close to you can't always make you understand x
 
Ahhh right, I’ve heard lots of good things about the LGI so I’m sure you’ll be in good hands :) I’m treated at the freeman in Newcastle have been all my life so got the uppermost respect for the team there,
Have you been on the GUCH (Grown Up Congenital Heart) boards?
http://www.guch.org.uk/forum/index.php
There are more people on there from the UK and a lot of people who are treated at the LGI that might be able to help you too :) and there all lovely,
If I can help at all with anything feel free to PM me,
Love Sarah xxxx
 
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