Encourage to those contemplating valve replacement

[Classof1988]

I just want to encourage anyone worried about life after aortic valve replacement. I know that each case is different and when I had my valve replaced I was young and in good health apart from the leaking valve but I just want to share a photo I took on a walk this week to demonstrate what can be possible. At 35, my valve is now older than some of the members on this site! My pacemaker is a mere baby at 4, but again, I found having a pacemaker fitted more relaxing than having a filling (and I have an excellent dentist btw). Enjoy the photo, and feel free to contact me via this site if you have any questions or concerns.

[Blackcatsooty]

I agree with what you say. I am three years post op and have very happy memories about my stay in hospital. I am in my 70s and rehab was steady but took about three months. I have no problems. I was at deaths door, and the fabulous cardiac team gave me my life back.

Sooty

[Classof1988 in reply to Blackcatsooty]

On my cardiac rehab course the oldest member was 76. All the others had undergone bypass surgery, I was the lone valve replacement person. While the 76 year old didn't do the full 4 miles around Victoria Park (Hackney, East London) he managed a very credible mile walk every day.

[Yumz199725]

This is lovely encouragement for people still waiting, I'm still waiting for AVR surgery just been told it will be eventually x that's amazing how far you can walk 👏👏👏🤩😊

[Classof1988 in reply to Yumz199725]

Average 3 miles a day. My record, out on a walk with retired colleagues aged between 60 and 73, was 15 miles. The walk was 10, but with walking to my local station and changing trains In London I clocked up another 5! I didn't walk that far in the photo as I only had around an hour to spare.

[Blackcatsooty]

I was walking one or two miles around two months post op. Had to do my own rehab as covid had closed many such facilities. I think us AVRs get a totally new spare part fitted whereas bypass etc patches up the problem. Being my age I could happily opt for a non metallic valve. Nowadays there are valves that have the option for a TAVi later, not an option when I had mine. Health care is progressing in leaps and bounds.

Sooty

[Rosie1066]

Couldn’t agree more! I had an aortic valve replacement in 2008 and it gave me a life that I had never had before as I was born with congenital heart disease and was unable to do sports of any kind. Now, I can do an eight mile walk and still have energy left. In June this year I also had to have a Pacemaker fitted due to AF, something I had suffered from since the AVR. There’s certainly life after an aortic valve replacement.

[Truthseaker]

I've been waiting for an aortic valve replacement since 2019.

Can I ask how long did you have to wait for your surgery?

I'm 54 years old now, but was just 50 years old when they told me I needed surgery. Do you think the delay is discrimination due to my age?

My quality of life has deteriorated throughout 2023, I'm struggling to walk up a few steps, and I can't walk very far now. Just last yearI could easily walk a few miles, but now I can't even walk 1/4 of a mile without significant breathlessness and exhaustion.

I contacted my cardiac nurse specialist a couple of weeks ago to let me know that I am continuing to deteriorate further, but still they continue to delay my surgery.

I am so distressed at this point that I fear I will become another news headline, and another NHS patient let down and left to die on the waiting list!

I cry daily, I've tried to get help, but no one listens, the surgeons secretary is rude and constantly talks over me.

Why is their so little respect for patients and so many people are suffering today, it breaks my heart.

Its nice to know that you are doing well after your operation, it gives people on the waiting list like me hope, but research shows that aortic valve replacement should be done earlier than they are now, the longer the wait the poorer the outcomes are. 28% of patients with severe aortic regurgitation die within 3 years without surgery, I've been waiting over 3 years for surgery. In November 2023 I'll have been waiting 4 years for surgery!

I no longer trust the NHS or feel they have patients best interest at heart.

[Classof1988]

I can't really understand why you are still waiting. I walked around with a leaking valve for 19 years but I had annual check ups with ECG and later on Echocardiograms. I was told initially that a valve replacement might be needed when I was older then was told it was when not if it should be done. I was fortunate that my Cardiologist chose to intervene before I started developing any symptoms or deterioration. However I have seen at least one post where the patient was struggling pre-op but started to recover well once the heart no longer had to compensate for the regurgitation. I can only suggest you try to get an explanation for the delay or go for a second opinion if your cardiologist is still delaying. I am sorry I cannot offer more help but I pray that you will get this resolved very soon and that the surgery will give you your active life back

[Truthseaker in reply to Classof1988]

I put the delay down to the pandemic, but that was so long ago. I've had regurgitation for 31 years. I was born with heart problems, had heart surgery at 23 years old, but they damaged the aortic valve during the operation. I've had moderate regurgitation for most of that time.

I didn't mind waiting when I was well, but this is no longer fun anymore and I'm very worried.

I'm in the process of getting an NHS advocate and I've contacted a Law firm, I'm considering taking legal action against the Trust. Delays in treatment aren't negligence, but they are neglect, its only when patients are harmed that it's described as negligence. My health has massively deteriorated this year, and still nothing has been done. I'm going to see my GP to share my concerns with them, I may ask for a second opinion too.

I don't want to take legal action, but I won't let them continue to let me deteriorate and stay silent. Doctors need to take full responsibility for their actions.

My husband and I are both victims of medical negligence, my husband lost his entire bowel following surgery for a cancer he didn't have. They performed the wrong operation and cut off the bowel and sealed it at both ends, the gas had no wear to escape, the bowel decayed inside his body and he nearly died so many times I've lost count. We did take legal action, and got a small amount of compensation, not enough to even cover my husbands ongoing medical costs, he has an infection and needs full adult incontinence pads to catch the blood and puss that pours out of his 5 cm of rectal stump remaining.

I had cancer, but the doctor made a mistake and left me waiting for 8 months for surgery. I tried to get in touch with the surgeon on a number of occasions, but his secretary kept telling me it was normal to wait six months for surgery for cancer. I made a complaint and was threatened by the consultant who refused to offer me any survalliance for cancer. I started legal action against the trust, but the consultant sent me a threatening letter, I was so intimidated by him that I dropped the case.

I now actually have PTSD, and struggle to hold back the tears every time I have to contact the NHS or have to attend an appointment, I rarely attend alone, although I did see my oncologist on my own for the last time earlier this year. He looked after me because I didn't have anyone else, he was a tough but kind man, although his staff hated him.

That's why this situation is so difficult for me, I've cried every day this week, it feels like history is repeating itself. The cardiac team have committed negligence, they now know I know and now they are on the defensive. Its likely that they will cause me some serious harm if they do the surgery anyway, the NHS is completely corrupt according to a friend of mine who sat on the board of directors of a Trust in Cumbria. She resigned because of the corruption.

There is a huge amount of abuse for staff who whistleblow too, the NHS go to destroy people. Patients who are victims of negligence are treated the same way as whistleblowers, its disgusting what they do.

[Truthseaker]

Can I ask were you ventilated and sedated for 3 days after surgery. My surgeon wants to ventilate me and keep me sedated for 3 days after surgery.

My consultant cardiologist said that, ventilation is not normally done during aortic valve replacements.

Ventilation also damages the lungs, but having aortic regurgitation also causes damage to the lungs. Ventilating someone with already damaged lungs doesn't sound right to me.

When I had heart surgery the first time I wasn't ventilated and it was a more serious operation than a valve replacement.

The drugs used to sedate patients are dangerous too, some can lead to kidney failure, and cause respiratory suppression and arrest.

I was an RGN before I had heart surgery at 23!

[Classof1988 in reply to Truthseaker]

I have read your post, words cannot adequately explain how upsetting it is to see how badly you and your husband have been treated. I think I can answer some of your questions though.

Firstly, ventilation is NOT normal for valve replacement surgery. The only reason I had a tracheostomy was because it was an emergency procedure undertaken because the breathing tubes couldn't be inserted. I have since discovered that I have an unusually small trachea but this was not known or discovered until I was already on the operating table. My three hour op turned into six and my surgeon told me afterwards quite frankly that if I had been at any other hospital other than the London Chest (now sadly closed) the operating team may not have had the specialised knowledge and experience to cope and I probably wouldn't have come out of theatre alive. Once I woke up in ICU all I was given in terms of medication was CoProxamol, which was very effective as a painkiller. I was back on a ward by day three I actually was very alert and had so much energy I was making other people feel tired!😂

Second, I can add a little to recovery testimony from a place of weakness as some thirty years after my valve replacement I somehow developed total heart block and while not as bad as you are now I did find walking at my normal fast pace difficult occasionally. Around three weeks after my pacemaker was fitted I walked up a very steep hill with no ill effects other that what you would expect after stretching your mlleg muscles.

Thirdly, on the subject of cancer, I have just watched a very interesting video talk on how to deal with cancer through lifestyle and diet. I don't know if technology will allow me to transfer it as this was sent to my wife's phone but if you pm me an email or WhaysApp address I can try to forward it.

Finally, whilst I am not "religious" I have seen God move many times in my life to ensure I am still here and I pray His peace and blessings on you and your husband.

[Bingo88]

So pleased you are doing so well and I found having a pacemaker fitted was better than going to the dentist and I was fully awake. Hope you keep on striving and enjoying life.. I couldn't get up that hill now due to being diagnosed with copd at the same time as needing a pacemaker Brian

[Classof1988 in reply to Bingo88]

Brian, Thank you! As I had my pacemaker fitted at a hospital in an area I use to live in but moved away many years ago, my surgeon was very interested in how I got to be there and we had quite a detailed conversation while he was fitting the pacemaker!

[Bingo88 in reply to Classof1988]

Yes it all helps to make things easier and takes your mind off things. Keep doing well

[Survivor1952]

Had PCI, AVR and CABG three months ago (actually tomorrow for the latter two). Walking/jogging up to 3 miles at a time now and planning on doing my first ever Park Run tomorrow.

[Classof1988 in reply to Survivor1952]

Go for it! Running has never been my strong point but I average 3 miles walking throughout the course of a day and did a ten mile walk recently, though somewhat relaxed and with a break for some tea.