Aortic Valve & Aortic Root replacement

[EnigmaSD]

I’ve been diagnosed with a Bicuspid Aortic Valve with Valve regurgitation and a Dilated Aortic Root. I’m 26 and this has all been picked up on since a medical at work in December, The type of surgery is open heart and I’m on a 6 month waiting list.

I’m struggling a bit mentally with the news and I currently have a 2 week old daughter which has made it more difficult to process as I worry about the recovery process and helping my wife with our daughter and being off work. Is there any support out there that I can reach out to as doctors at hospital recommend my GP and my GP doesn’t respond to the online process I have to follow.

[Daffodilia]

Good Luck with your op - my husband had replacement aortic valve last August and is now much better than for a few years before op - younger patients recover quicker I think but you will need help from your wife - you can still talk to and cuddle (eventually) your baby

[EnigmaSD in reply to Daffodilia]

Thank you, I’m hoping it will be a fast recovery for me so I can go back to normal.

[Gladiator1951]

You may find this site helpful: valvereplacement.org/forums...

You will become a member of a special club that crosses all the borders. Many are willing to share their stories and help you.

May you live long and watch your new child grow and that you become a grandfather.

[EnigmaSD in reply to Gladiator1951]

Thank you, I will check that out.

[BowlerA1]

Hi I thought I would let you know about my recent open heart surgery in which I had a previous aorta animal valve replaced with a mechanical one. This was a very difficult surgery which was performed at Oxford. My operation was on the Monday morning and I left hospital on the following Saturday. Unfortunately I was quite weak before my surgery so my recovery is a little slow. I have now gone seven weeks and I am slowly getting my life back to normal. My advice to you is to keep yourself as fit as possible so that recovery is quicker. Unfortunately until the operation is complete you will not know how much help you will need. Find out who supplies mobile aids such as raised toilet seats, seats to place in front of the sink and definitely a pee bottle just in case you can’t make to the bathroom. I am sorry you are having trouble making contact with your doctor. I suggest you go to the surgery personally and ask for a consultation. Always mention that you are due open heart surgery. You will be surprised how quickly they respond to that. My doctors have been great and I have been see within half an hour when I have had problems. Also look up The British Heart Foundation website which is invaluable. You are going to need childcare for a good few weeks so that is something else to put into place. Ask about your social group it won’t take you long to find friends who relatives have gone through this and that can be vert reassuring. Hope this helps and I wish you luck. You will get through this difficult time and you will have many many years to enjoy your family.

[EnigmaSD in reply to BowlerA1]

Thank you, the advice will help a lot as I never thought about some mobile aides. The bottle trick will be an advantage too.

[Soundofman20]

Hi I was diagnosed in jan 2022 that i had AF /aortic stenosis iam now 63 yrs old had a healthy childhood no health issues until my late 20's was told had irregular heart rhythm nothing was done until i was 60, i had animal aortic valve replacement by open heart on 6th feb this year and a pacemaker a week later due to total heart block 2 days after main op iam still recovering at home i had to spend 22 nights in LHAC hospital .You will need help from your wife and others you will not be able to lift a full kettle or carry washing basket etc etc for atleast 4/6 months sleep will be difficult once your home im still waking at silly o'clock 2/3 times anight but its improving , walking you may feel light headed for atleast 4wks , physio in hosptal will have u up day after , your eyes maybe out of focus for few wks . You are given so many meds that can make u feel sick affect ur mind as in hallucinating and your appetite will not be very good but dont worry it will come bk try to eat little and as often as u can to keep strength up . Drink plenty fluid keep up ur physio as its very important to keep moving and rest as much as can too , you maybe able to hold baby but not lift or bend /stretch for quite awhile your chest/ribs needs to heal , your emotions will be all over the place stressed at times maybe abit weepy for no reason ,tired but youl get there just take it slowly ur wife will need support also as i know my hubby has aged 5yrs in the last 2 months but we will get there ,take up any offers of help from family and friends , get a cleaner in to help your wife . Im now 7wks in and so much better than even 2wks ago my hubby sees daily improvements stairs not an issue as only use at night time to go bed as we have loo downstairs , so if u have down stairs loo that will be a god send to u the first 6wks but try go to bed at night and not sleep on sofa . Good luck with your op ul be fine just do as surgeons and physios tell u ,age is on ur side to get fit and recover far quicker.

[EnigmaSD in reply to Soundofman20]

Thank you, I’m hoping I can get back to work and that my recovery is fast, the waiting game at the moment is not easy.

[NotanAstronaut]

heartvalvevoice.com/

A mechanical valve will , I believe, out last you even at your tender age. I had one 18mths ago for bicuspid with stenosis. I don’t think you will be offered a bio prosthetic valve as they don’t last long enough. They thought they might need to replace some dilated aorta but decided not to and it’s been stable since as checked with 2 echocardiograms and a CT since.

I’m 57 now, on warfarin and doing fine. I bought a Roche device for checking my warfarin levels so I do it at home and email the results into the local hospital pharmacist who advise on dosing. I can ski, swim, run, cycle, cut trees down and so on.

I wrote a blog on my diagnosis which is here. Have yet to finalise the one on the op and recovery. It’s a bit sore for a few weeks after the op but painkillers at night and a recliner chair during the day help a lot I bought a second hand one before the op and sold if after about 3 months. If you can take three months off work to fully recover and do very little in the first month. Just let the sternum heal. I can still feel some discomfort if I do a load of physical activity but it’s trivial now.

Be glad it’s been picked up It’s very routine surgery nowadays.

Best wishes

shaunoconnell.com/2023/08/1...

[EnigmaSD in reply to NotanAstronaut]

Hi thank you for your reply, they have given me the choice of the 2 valves but strongly advise the metal one due to having to have surgery when I’m 40 with the animal valve but I will be opting for the metal valve.

I’m hoping I can get a Roche device to send in results otherwise I’d have to have blood tests every month.

I will look into a recliner as that would be handy too I believe.

Thank you for the links, I will check them out and read your blog too.

[Pefki]

I was 26 when I had the same surgery in April '23. I was single and my parents came to stay, initially moving in for the first 2 weeks after discharge and then renting nearby for about a month more. The first 3 weeks after surgery were just a blur of pain, sleep, trips to hospital for INR checks and lots of help. I was doing a master's and working full time and determined to be able to finish projects and study for exams in those first few weeks, alot of time falling asleep at my desk- working from home ofcourse. The motivation helped me through. I didn't want to repeat the year when I had worked so hard. I did catch pneumonia in hospital which required me to stay an extra couple of days and I came home with antibiotics for that aswell. There is alot of pain in the beginning, exhaustion obviously and some tears and frustration. Also the constipation from the pain meds added to frustration. After about 2 weeks at home, I could slowly start to see the light at the end of the tunnel. After about 6-8 weeks, I started to feel stronger than pre surgery. I always knew I had a bicuspid valve, I had two surgeries as a new born to open my closed valve, one by balloon dilation, the other open heart. Once the cardio team saw me at the hospital, after having paid for a private MRI, my surgery was urgent and scheduled within 3 weeks so I hadn't really realised how sick I was, it sort of crept up on me. I had felt palpitations and struggled up the stairs at the station or going for a walk but I put it down to tiredness. Now, 2 years post op, no issues except remembering to take my Warfarin every night and the INR testing at the hospital which is currently every 6 weeks. I'm one of the rare few who can't do the strip tests as they are never accurate (I've tried several times at the clinic) so it must be a blood test. I hope you have a great recovery and I hope they schedule your surgery soon so you are at the other side of it.