I have just been diagnosed whilst on holiday in turkey which was scary enough š¤¦āāļø I now am waiting for surgery , to be honest the waiting is killing me , itās all I think about .
Can I ask how long were you all waiting for surgery?
I live alone so am concerned about recovery, what do I need to consider once discharged ?
Iāve seen talk of smaller scars , what is the deciding factor regarding the type of surgery offered ?
have been advised by my cardiologist that a tissue valve would be more suited to my lifestyle due to risk of bleeding on warfarin, and advise on this would be welcome . Itās all feeling like a minefield and very scary , I know I shouldnāt be concerned about a scar , but itās playing on my mind .
Many thanks guys .
Am in the northwest so will be having surgery at Blackpool
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lancashire38
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Ah hi that's alot to take in while on holiday!I was born with congenital heart disease bicuspid aortic valve and aortic regurgitation and moderate stenosis so I will eventually need valve replacement surgery. I am monitored very closely I have a yearly check up and an echo just incase anything changes but at the moment it will be another 15 to 20 years before I need surgery. I hope your not waiting too long for your surgery x
HelloIf you look back at my posts you will see that I felt exactly the same.
I was diagnosed in Oct 21 and Had surgery April 22. It will all depend on the waiting lists on your hospital though I suppose.
I had to have lots more detailed scans for my surgeon to decide on the best way forward, and for me that was a mechanical valve with OHS.
I thought that I would feel really self conscious about the scar, but with zero lotions and potions it's barely visible. I wear what I want and it's my battle scar to show that I'm a Heart Warrior.
I can't tell you not to worry, I was a wreck, but please think about joining UK Aortic and Heart Defects Pre and Post surgery Facebook group. Everyone in the group knows what you are going through.
Totally understandable. I went to my GP for help with anxiety. She referred me to a Clinical Psychologist at the hospital and I was initially nonplussed by this. I wanted something to calm my nerves or hypnotherapy or something. Turns out she was right though. My CP was amazing and as much a part of my medical team as my surgeon.š
I forgot to say that I also live alone and was worried that they wouldn't let me go home.My sister came to stay for a few days, but I was in hospital for 3 weeks.
You are pretty helpless for a while so will definitely need help. I put out a plea on Facebook for local friends willing to join a WhatsApp list, then I sent a message out the day before I needed anything. Everyone in the group could see if anyone had replied and knew that I wasn't left struggling. Asking for help is difficult, but it has to be done.
Doesnāt matter if you are bicuspid. Your new valve will replace your failing valve.
By far the worst bit is the waiting, so look forward to your treatment.
You will have your op as soon as essential but not before. Once you are in danger, they will have you in.
You will have a number of tests which are routine and no big deal. These will be before your admission and possibly at different hospitals. Ideally they will do these tests as an inpatient, but apart from lucky me, I donāt know of anyone getting the tests as an in patient.
I was mild stenosis for about three years, then moderate for one year, then severe. Sometimes you might be ācriticalā but I didnāt have that. Once I passed severe, boy the medics shifted themselves. The consultant rang me at home on a Sunday to tell me it was all systems go. So donāt panic if it seems delay delay delay, when itās important itās go,go,go.
After the op you typically will be in hospital for a week. You then need care for several weeks, you canāt go home and be alone. You might want to stay with a friend or family. Or go to a care home.
There are three options.
Less invasive
TAVi
OHS
Less invasive is not common. TAVi is a realistic option, but it doesnāt always work in which case they will send you for OHS.
Now the better newsā¦ā¦..as soon as you get to hospital your fears will melt away. The cardiac nurses and all the other staff are fabulous. Assuming you have OHS you will go to the operating theatre and wake up perhaps two days later, all done.
The success of this big operation is high. My surgeon had better than 99.5% success rate.
The choice of valve depends on your age etc. I had the animal rather than metal valve. Three years on and I donāt know itās there. Fabulous. Nowadays these valves have an option for a later TAVi that wasnāt available to me. Medical science rushes forwards relentlessly.
By very wary of reading sites other than NHS or BHF. I would avoid them like the plague. There is always the odd person who wants to scare you, if anyone does that in this site their post will be removed.
I like to recall mid summer 2021 when I got my life back. I now need a searchlight to see my scar.
Hi, I was born with congenital heart disease bicuspid aortic valve and severe stenosis. I probably had one of the longest waits for surgery of 60 years! When I was a child open heart surgery hadnāt even been invented. As a child I was treated like cotton wool - no sport, no swimming, no nothing. I rebelled as a teenager and then lived a normal life. I eventually got my open heart surgery, aged 60.
Good morning....sorry to hear about your diagnosis but you are joining a group who will completely understand your worries. Telling you not to worry is easy now for those of us who have had our operations but once you are in hospital the fear will be taken away by the specialist team who will be looking after you. This is a common operation and has a high success rate. I had OH surgery on my valves and the type of surgery they think is best for you will be discussed before you are admitted I would think. I was up and walked quite a few steps the day after my op and the physios are very keen every day after to get you mobile. If you are on your own at home I would suggest discussing this before your discharge but I think they go into all of that anyway if my memory serves me correct. You will definitely benefit from some help so if you have anyone that can come to stay or that you can go to stay with for a while it will stop you from over doing things which is a must. With regard to the scar, I think this will become the least of your concerns as you will be concentrating on getting better. I believe now it is more common for the wound to be glued rather than sutured so it does fade to just a silvery line after a while in most cases. I don't even think about my scar....I just see it as my war wound and a mark that was a life saver but after a year mine is barely noticeable anyway. If you want to PM me please feel free to do so and I hope you don't have to wait too long for your op. Xx
I was diagnosed late Feb , I think. Operation was early August 2022. So about five months wait for me. I was told I was an "urgent" case but not "emergency". They had hoped to do me a month earlier but were inundated with emergency cases. In the main they have two variety of slots for the operations - the main waiting list (within which they juggle the 'urgent' and 'longterm waiting' people) but they also need to keep some slots available for emergency admittances. I suspect some slots are also kept for private patients but the staff deliberately left this bit of info out.
Blackpool is great, by the way. Amazing staff, great food, superb care.
Haha, honestly the food really is great. Particularly in ICU but also down on the ward. Both visitor cafes (main hospital and cardiac centre) serve HUGE cream cakes which I always find weird (but highly recommend!! lol)
Bizarrely I really enjoyed my time in hospital, especially ICU, and in recovery afterwards but I appreciate I'm very lucky in that everything went perfectly.
I also went with the tissue valve because I do running & the gym (but also because I'm a bit clumsy) so was worried about warfarin and bruising (or more worried about internally bleeding to death to be exact!). 50 at the op, open heart, tissue valve. But two half marathons within 14 months of the op - life can be normal again.
Great to know re the cakes , will bear it in mind š
Iāve also decided to go for tissue valve for exactly the same reason .. I ride horses so a fall could be a bit dangerous , but the real reason is I am super clumsy and covered in bruises without warfarin to worry about , my cardiologist knows me too well š
Canāt wait to take control of my life again and get on a plane somewhere warm , also I owe my brother and sister a stress free holiday as I messed up the last one with my drama
Thanks for the reply , it helps to know someone has come through this and is back to normal ā¦ although am not sure Iāve ever been normal
Hi I had a mechanical valve fitted in 2005 at age 48 on the recommendation of my cardiologist and surgeon, they said it would last a lifetime,where as a tissue valve would last approximately 10 years. Yes I take warfarin it is absolutely no problem whatsoever and I by now I would be approaching my third opp if I had gone with tissue. There seems to be a lot of unnecessary worry about taking warfarin. Oh and about bruising I ski and mountain bike again I havenāt had any problems.
You are right! The myths surrounding warfarin are legion. Get the dosage right and take control by buying your own monitor. CoaguChek costs around Ā£300.00 and immediately removes the need for a surgery visit every month or so. The stories about alcohol, vitamin K, sport, exercise etc. never end. My advice to anyone who needs to take warfarin is firstly to research EVERY available article they can find. One thing I would say is; Don't allow it to run/ruin your life. It's keeping you alive and should be embraced! I could write hundreds of words of advice but you need to live!
Hi, Interesting that you've decided to go for a Tissue valve, given the tendency for the medical fraternity to push for 50 somethings to go Mechanical.
I've had three surgeries, first time up I opted for a Tissue AV at 33years old, absolutely the right decision for me. That valve lasted for nigh on 19years before it was replaced, a few years longer than the lifetime often bandied about. Second time I changed to Mechanical very late, as I simply felt I was being selfish expecting my family to go through it for a third time when I would be in my mid-late 60s. In the event circumstances were such that I had a third op in any case 4months later at 53, so I now have mech Aortic and Mitral valves.
I'm well past the stage of worrying about surgery, but, that's easy for me to say with my history. The best thing I can suggest is to just go with the flow and when the time comes just try and take in what your told. As for scarring, my Mk.3 is almost 10years old now and as good as it's ever been.
Hello, To some extent it depends on why a valve needs replaced, some people don't have symptoms as such or recognise them for what they are.
Twenty-nine years ago I was about to go in for my first valve replacement, symptoms had been gradually worsening over the preceding years, I was underweight, fatigued, breathlessness, lack of stamina, the noise of the valve opening and closing due to calcification and the constant migraines.
My second and third surgeries symptoms were a bit different as they were replacement of replacement surgeries or redo's as they tend to call them. Although migraines were again an issue prior to No.2.
Many of the symptoms can be attributed to other heart issues, I have similar with heart failure but, it doesn't mean my valves need replacing again.
My cardiologist has recommended the tissues valve due to my lifestyle. I have horses and ride every day so I guess the risk of bleeding is increased as Iām always getting knocks and injuries.
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