A dr came to see me today and spoke at length, it seems the tavi team here will not take it on, because of my underlying conditions so they r going out of house to find a specialist team. If they say no, then it will be high risk keyhole surgery.
My god do not ask me how u feel now
Highburyted
I’m sorry to hear this however, it is great that they are getting in touch with a specialist team. They may be able to work out a better and safer way of performing surgery on you as they are experts in this area.
I know it’s easier said than done, but wait for them to hear back from the specialist team. It could turn out to be positive news and the keyhole surgery may not be needed.
Stay strong & thinking of you.
Tos
I do not know the details of your own situation but in my case it was,they said, because even with a tavi something may go wrong,as in possibly a big and unexpected bleed, and they will then need to resort to open heart surgery......far too risky.But the specialist team may have a few more left in bunnies in the hat so,as Tos92 says wait for them to get back.
Ahh mate I'm so sorry to hear 💔😰
gutted that you have had this news. Sending you a virtual hug.
From being devasted and on the verge of breaking down both myself and my family are going to FIGHT !!! not just for my life but my rights, by that I mean how far will Basildon go to find another tavi team, we know that Papworth is the best and my family will contact them if Basildon won’t. Another point is how my surgeon, one of the best, also said that whilst I was much iller he would still do the operation and if a specialist tavi team needed to be found, he would find them.
Thing that is holding up every is my surgeon is still on leave, but we r making contact with his secretary tomorrow
Just hope I can keep myself up .
Highburyted
I think that’s a good idea to contact his secretary. I would also follow up any telephone conversation with an email. That fighting spirit will help you get through this.
Love and best wishes, plus a virtual hug.
thank you, unbelievable site this is
Sorry to hear it was not the news you wanted. And hope contacting your preferred option today gives you more reason to keep optimistic and he is back at work soon to help you. Brian
thanks
Got over the shock of what Basildon Hospital said regarding searching for a specialist team to do tavi, and have decided to fight. We r at an impasse at the moment,they and myself r waiting for my surgeon to return from leave- so we will wait.
Push Basildon for a referral elsewhere, they can begrudgingly shift you to a London hospital where the same NHS works far more cohesively.
hi
I am beginning to wonder, as I’ve said they r saying that I’m better because of what they r doing, but they’ve only given me fusimide to get the Fluid off my lungs, and I can get that from my GP, but what about what I’m doing , No nebuliser at all ( 20+ times at home) packed up smoking, could only walk 5 ft on entry to hospital, now walking over 100yds with hardly any distress, they cancelled a final breathing test cos they said they were happy but now I’m demanding another test because if my surgeon was happy to carry the op then, surely he would be happy with the results now.
Highburyted
Very best wishes keep fighting.
So pleased you see this as a family 'fight', makes it much easier if you are all untied around the same goal. There are lots of centres now that have specialist TAVI teams - most of the big London teaching hospitals will have specialists (and also the back up ITU facilities). But Papworth certainly the best. Sounds like it helps that your surgeon is prepared to do the heavy lifting in terms of making contact but please keep us informed how you get on.
Yes and another thought, my health today compared to when I was admitted is unbelievably better, Basildon r saying that’s because of what they r doing- they’ve only given me fusimide to remove the fluid from my lungs, I can get that at my GP and what about what I’m doing, like packing up smoking, not using my nebuliser at all and losing weight !!! ( mind u I could eat a hippopotamus)
Just adding to the good wishes and fingers crossed for you. I think most of us have come to the conclusion we have to be our own advocate and fight for the optimum treatment. Good Luck!
thank you
I am sorry to hear this but hopefully the specialist team will have some ideas sending your lots of virtual love
Hi, highburyted,
I know that this news is not what you had hoped to hear—but it does sound positive that you will likely get a team of experts in the procedure that you need. That is a positive!
You should feel very proud of what you have achieved in the last weeks. It is major to stop smoking, lose some weight, and to be able to walk further now than when you went into hospital. Those are major changes/improvements in your lifestyle that prove what a strong person you can be.
You seem to have a plan that you are working, and that is a blessing! I would add to keep on doing those things that are making you feel stronger—eat healthy, walk as you can, and try to focus on positive thoughts. Your doctor should be pleased with the changes that you have mentioned.
I am sending a virtual hug and a prayer your way! Keep us posted. ❤️
Thanks and I’ve just been told I’ve lost 12 kilos in two weeks, much of which is probably the fluid I was retaining on my lungs
Wow! It is not surprising that you must feel much better with that fluid gone. I can get fluid buildup in my ankles and hands, etc, and it is actually painful. I take HCTZ to help eliminate the fluid, but I have had to cut back and tweak that the last few months due to kidney issues. I see my doctor this Friday to check on all of that.
You should feel proud of the changes that you have made recently. It is no small thing to quit smoking. Some people have to try several times to quit, and they are usually miserable during the process. Plus, it does sound like you are giving your diet a go over too. That is also incredibly difficult to do. I work on that one all the time—always a work in progress.
You do sound stronger now than you did several days ago. That inner strength should see you through all of this— plus, it sounds like you have lots of family support! That in itself is a blessing.
Try to stay calm and try to relax some while you are waiting to see your doctor. Wishing you well! ❤️
Fusimide they’re giving me, in fact that’s all they’ve given, I could get them at the GP’s so I don’t know why I wasn’t prescribed them. I have made leaps and bounds with my COPD myself mainly by packing up smoking, I’m gonna be honest my COPD was described as severe, but now it’s almost as if it isn’t there
That is wonderful news about the COPD symptoms! It is horrible to have problems breathing. I am having an echocardiogram in August to try to get some type of diagnosis on my breathing problems.
Does the Fusimide tend to have any effects on your kidneys? You may want to keep an eye on that. But it sounds wonderful for ridding you of the excess fluid!
Take care. ❤️
They haven’t said anything like that and I’ve had it before, u just get a season ticket to the loo!!
Convinced I’ve got a heart problem 😭
Good news and good news
Update on the bad news 
The support I’ve had from this group has helped me make a big decision. As I travel along on my acceptance journey. 
Will I ever feel better?
