What is a reasonable time frame to wait for Mitral Valve surgery?

[Doodlebug63]

Husband diagnosed last December with Severe Mitral Value Regurgitation. Waiting until April this year to see Consultant. After Angiogram and TOE just been referred to Cardiology Surgeon, awaiting letter from him now. Is it normal to wait so long? Told in April he would need open heart surgery? Getting him down mentally and physically more breathless and tired since original diagnosis. He says he feels like the last 11 months have been wasted time in his life and is getting more low moods now. Thank you!

[bantam12]

Unfortunately everything in Cardiology takes ages, my husbands severe mitral valve escalated last Dec and resulted in 9 weeks in ITU, he's been turned down for surgery ( to much calcification) by 2 major hospitals and we are still trying to find a surgeon willing to take him on ☹️

I hope you have better luck but you might need to keep on at them and it can be hard work !

[Doodlebug63 in reply to bantam12]

Thank you for your reply, I’m sorry to hear your husband and yourself are having such a difficult time and hope you soon find a surgeon.

The whole process feels a bit of a battle as I’m constantly ringing up to chase appointments, being told he will get a letter in a few weeks then nothing and having to chase again. It all adds to the stress and worry and you can’t plan anything because you’re hanging on in the hope of the operation. I will chase up the surgeon next week. Thanks again.

[bantam12 in reply to Doodlebug63]

It sure is a battle, I've lost count of the days I've spent on the phone trying to get things moving, so many brick walls !!

Good luck 🙂

[Doodlebug63 in reply to bantam12]

Thank you so much. It’s not right but at least I know we aren’t the only ones going through this!

[Calliope153]

It really depends on where you live and the severity. "Normal" wait times vary from place to place. The only consoling thing is if it is really, really, serious then everything happens immediately and you can;t fault the service. Cardiology is severely over stretched everywhere. If you read earlier posts here you will see people wait months for operations. One poor soul had his operation cancelled three times.

There will be people along soon who will give you their experiences of wait times and sometimes it is beyond belief how long it is. The low mood is hard to push off. The only thing to concentrate on is getting as physically fit as possible before surgery. Diet and exercise... sorry I can;t give you any firm suggestions to help - but ring the consultant's secretary asking for appointment - but be prepared to be persistent. To get my annual echocardiogram (overdue by six months) I rang almost every day for over four months..... Good luck.

[Doodlebug63 in reply to Calliope153]

Thank you for your reply. I’m trying to ensure my husband eats a good diet and continues to get some daily exercise by walking the dog because I know he gets tired and would happily just sit around all day, because of his low mood, which isn’t good for him.

I’ll keep being a polite pest and hope we see someone soon! It is consoling to know if it was so bad he would be in immediately but sometimes it’s hard to focus on that especially when he was always quite fit until last Summer. Thank you again.

[Ianc2 in reply to Doodlebug63]

It may be worth writing to your consultant and informing him that you are willing to accept an operation in another hospital, should a last minute vacancy occur. I appreciate that most people do not like making a fuss , but a visit to your local MP's weekly surgery might also be in order .

Another possibility would be to investigate the cost of a private operation, (probably around £20.000). It is a lot of money but it is surprising how quickly the operation will take place. As Calliope153 indicated if it gets so bad that it requires immediate action he will be operated on, but it is not an easy way to live.

[Doodlebug63 in reply to Ianc2]

Thank you for your reply.

We asked our GP about other hospitals with shorter times however he informed us that would mean the whole process would start again! However, that was a few months ago so it might be worth asking the question as expressed by yourself. Unfortunately, we are not in a position to pay for the operation privately so that is out of the question.

I think we will have to hold onto the fact that if it was so bad he would be in now and I will be chasing things up again in the next few days.

Thanks again for taking the time to respond.

[Doodlebug63]

A quick update. We have now seen the Surgeon’s registrar and it has been confirmed my husband will need Mitral Valve Surgery, either a repair or replacement. He has to have a lung function test and scan of the arteries in his neck plus get his dental health checked out whilst waiting for the operation. We have been told to expect a wait of approximately 5 months. That was disappointing to hear as this whole process started in December 2018 but at least we are slowly getting there. He is more informed now and just wants to get it done.

[13allit in reply to Doodlebug63]

Hi

I’ve only just found your post. I was 15 months from diagnosis to operation and while waiting and befriending the surgeons Secretary, I found that GP’s are very useful. The surgeons base their decisions on who gets operated and when on the latest information they have of your condition. They won’t accept your word but will listen to your GP. Whenever anything changed I would immediately see my GP and they would let the surgeon know. I also rang the secretary monthly and made a polite enquiry about where I was on the list. Your husband will need to have completed his tests and dental visit first but its useful to do this once you know he’s completely ready for surgery. He may find that the cold and wet weather isn’t very good for going out in and I ended up getting my daily exercise walking round shopping centres as they were dry and warm. My valve was repaired and I’m now 18 months post op and at my first annual check up was taken off all the medication I’d been on as my heart is working fine and there were no other issues before my op. I will have annual checks for the rest of my life But my cardiologist says I no longer have a heart condition. I hope it works out the same for your husband.

[Doodlebug63 in reply to 13allit]

Thank you for your reply and I’m glad to hear you are doing well post op.

My husband has now had all his tests and dental work, and I’ve been in touch with the surgeons secretary who has told me to ring her back mid December if we haven’t received a pre-op appointment by then and she will chase it up. The latest hospital, where the surgeon is based, seem much more on the ball. Within a month my husband had seen the surgeons registrar and had all his tests therefore we are keeping our fingers crossed that surgery won’t be too far behind.

It’s reassuring to hear how well you are doing and we are hoping it won’t be long before we can start the rehabilitation journey.

Thank you!

[Peterpiper1 in reply to Doodlebug63]

Hi doodlebug I'm in exactly the same position as you. I am on the list for surgery at Papworth for mitral valve surgery.. I have have my neck scanned and will have a lung function test this week and then to oral hygiene sometime.. I was told 7 to 9 months wait.good luck

[Doodlebug63 in reply to Peterpiper1]

Gosh! That’s a long wait. My husband was told at the start of January this year and we have been waiting ever since. Today he has just received his Pre-screening appointment so hopefully it won’t be too long now.

Good Luck to you too!

[Doodlebug63]

Just a quick update. We got a date for surgery and so far it’s been cancelled 3 times, twice when ringing the day before the operation to check the bed situation(the day due to go in) and again today when operation was due for tomorrow.

So upsetting for my husband and very frustrating. Awaiting a phone call later on the week to find out a new date.

I suppose the winter bed pressure isn’t helping and lack of enough ITU beds.

[funnyfennel in reply to Doodlebug63]

gosh that must be hard x

[Doodlebug63 in reply to funnyfennel]

Hi funnyfennel. He’s had it now, I’ve been chatting to you on one of your posts about post surgery. He’s doing really well, glad it’s all done now but it was a very long journey. From diagnosis to operation it was 19 months! I fear some of it was the initial hospital moving very slowly. Once referred to surgeon at hospital where his operation took place it was 9 months but 3 of that was due to COVID stopping all electives.

[funnyfennel in reply to Doodlebug63]

Yes, I knew it was an old post, but was expressing sympathy for the situation you were in at the time x

[Doodlebug63 in reply to funnyfennel]

Yes, thank you. It was a very stressful time for both of us but for my husband it was awful. He was on an emotional rollercoaster. When the call came at the start of June it was better, no calling to see if there was a bed just a firm date, with COVID-19 testing twice before admission (although they did tell him on his admittance if an emergency cropped up it might not happen so a worrying few hours). By June he was just so ready for his op we were so thankful he got in.