waiting time for op

[Antique50]

I have now been waiting over a year for a mitral valve regurgitation repair. Was passed over to another hospital at beginning because Consultant said his list was too long. Steadily got worse over the year. More breathless, dizzy and now can hardly walk to the end of the garden. Just had to go into A&E yet again and they phoned my heart hospital to ask if I could go to them - they refused. However someone rang me from hospital to book angiogram and they appeared to know nothing about the call from A&E but said I was down as urgent. I just hope “urgent” means next few months and not next few years.

[Laguna23]

Try (I know it’s hard) but you have to believe this will now be repaired and you will get your life back! I am now 5 months to the day after my mitral valve repair and the wait is worse than the operation, well it was for me anyway. I had ups and downs after my surgery but I am moving forward and without the anxiety of wondering what was going to happen to me and my life before the op. It is worth the wait, you just need to stay focused on the positive outcome that awaits you. Very best wishes ♥️

[Antique50 in reply to Laguna23]

Thanks Laguna - I have been watching your progress- I believe you had it done at Liverpool which is where I started. Did you worry that you wouldn’t get through it? And were you feeling like I do? I might feel better after the echo. I managed to get out of having another TOE (not up to it). Wasn’t worried at the beginning of the journey !

Thanks again - Sandra

[Laguna23 in reply to Antique50]

Hi again, I had mine done at St.Thomas’s in London as I live in the south east and was able to go there, where they have quite brilliant surgeons. I had a long wait from my initial visit to A&E with dizziness in February last year, then I had to wait until April for my echocardiogram and that’s when I knew I needed surgery and was in absolute shock! No sleep, fearful thoughts I felt as if I had just been shot and nobody could understand me. It was a crazy, frantic time for me. I then had to wait until August to get an angiogram and it wasn’t until after that things started to progress for me. My local cardiologist referred me to St. Thomas’s and once I was in their system (which is a different NHS trust from my local one, which then has its own administration and therefore potential delay issues with sharing scans, test etc) I finally got a meeting with my surgeon and was put onto his list which I was told could be 2-3 months. I got the final call late October to come in on the 2nd November. I was very fortunate as I didn’t have any other issues going on with my heart or body I was able to have minimally invasive surgery. It’s still open heart surgery just a different entry point. This is easier as they don’t have to break the sternum. I am fortunate that apart from my highish blood pressure, extreme anxiety and occasional light headedness that was my symptoms prior to surgery. I say this and it sounds easy - it definitely wasn’t, I honestly think I had some sort of breakdown with the worry and anxiety, it was so hard and not easy to explain to anyone who hasn’t gone through this experience. You have to believe you will get through this! To answer part of your question I never doubted for one moment I would get through it after meeting my surgeon, I was filled with confidence. They are brilliant and I wish you so much good energy and happiness as you will get your life back together again 🙏🏼♥️

[Antique50 in reply to Laguna23]

hi Laguna - sorry I must have got you mixed up with someone else. Well I am with the same group (Harefield) ! And had to have my teeth made near perfect by Guys. I had most of my initial consultations and procedures at Wycombe hospital. It is so hard to try and explain to friends and family how fraught everything seems. Interesting about your dizziness . The A&E depts always try and convince me it’s my ears or something else. Are you able to say the name of your surgeon? I am having minimally invasive because I have a few spinal fractures. Did you have an escalation of symptoms and was this why they got on with it? Many thanks for your kind reply it helps so much to hear from someone who has been through this and come out the other end. Sandra❤️

[Beatles1956 in reply to Antique50]

Hi Antique 50.I take it you have made it clear that you will take a cancellation (assuming that is the case)?

I am convinced that mine came through relatively quickly because I had told my surgeon I was happy to take a cancellation. Had it done in Bart's, with 2 weeks notice, during lockdown. Fun getting everything organised before I went in.

Good luck with everything 😎

[Antique50 in reply to Beatles1956]

hello Beatles

Thanks for reply. I havent asked for cancellation because I’m either waiting for yet another procedure or I’m feeling too ill to even get to the hospital! I am going for an echo (4th this year) on Tuesday and will ask about a cancellation. Will let you know their reply but I won’t be holding my breath. I think I’m becoming battle weary. I do have my bag more or less packed. Hope you are feeling a lot better now it’s all over. Best wishes Sandra

[Laguna23 in reply to Antique50]

My surgeon is head of mitral valve surgery at St.Thomas’s his name is Gianluca Lucchese, his profile is on their website. My physical symptoms didn’t deteriorate before my surgery I just kept contacting my surgeons nurse weekly and I had less than a weeks notice as they had a cancellation and my procedure was considered straight forward (even though it obviously wasn’t for me) as opposed to other types of heart surgery which are much more time intensive and higher risk. Take care Sandra happy to answer any questions as you move forward x

[Antique50 in reply to Laguna23]

hello Laguna - many thanks for your reply. I immediately looked your surgeon up and whow - he’s got a brilliant record. I so wish I knew before about him. I might ask about him when I go to Harefield on Tuesday.

Thanks again and I might ask some more questions (but I won’t overdo it, I promise) Sandra x

[Pilgrim2]

Hi Sandra, I had Mitral valve surgery last November after almost a year since diagnosis. I also deteriorated like yourself and before surgery could only walk a couple hundred yards, this after being used to walking 10 miles plus! Try and keep up the faith that you will be fixed and life will once again start getting back to normal. On the days you feel stronger, try pushing the consultants and booking desk. Once you have a date, even an estimated date, it starts to feel like the solution is coming. I wish you the very best of luck on your journey. Mike

[Antique50 in reply to Pilgrim2]

hello Mike - What a nice reply. I am trying to keep the faith but three o’clock in the night finds me either worried or angry. I am going to the hospital on Tuesday and will try and be firmer with whoever I see about a date. Starting to think I may have to pay to see another consultant. Will see how it goes. Hope you can now walk ten miles again. Thanks again - Sandra