Hi all. I have Bronchiectasis and am on Azithromycin. I had some lung function tests the other week that show I'm functioning at over 100% for my age (70) weight etc! I was also diagnosed with a congenital fenestrated A-V septum in March 2020. The hole is about 1.8cm x 0.8cm and has fibres across it. I am actually having a face to face with the heart chaps form the Liverpool Heart Hospital on Tuesday, so can tell them that my breathlessness on slopes is my heart not my lungs! Let's hope they will have a plan for surgery as I am usually a very active person, and living in the Peak District I have to walk up a hill to home!
Face to Face with heart surgeons! - Lung Conditions C...
Face to Face with heart surgeons!
Good luck with your face to face appointment Digger. Dont forget to write down some reminders before you go. I found it useful when I had my face to face appointment with my consultant last Friday.
I was also thinking of taking my iPad in and recording the discussions! Especially as my husband is not allowed to attend with me, then he can listen afterwards.
Good luck. If you want your husband to come in just ask. My husband comes in with me. Otherwise, I'm sure they won't mind if you record the consultation as long as you ask.
In the UK at the moment, only carers (i.e. if I mentally unwell or disabled) are allowed into consultations because of the Covid rules.
I'm in the UK, Oxfordshire. If asked I would say my husband is my carer. Maybe different hospital trusts have different rules.
The problem is I want them to know I am (or was before my heart diagnosis) very active, and still do excavations but no bucket carrying or barrow pushing! I don't want them to think I am an old 70 year old! "Please attend the appointment on your own, unless you have a carer. Children attending may do so with one parent or guardian.
If driven to hospital by a relative or friend, they will not be allowed to accompany you to your appointment unless they are also your carer."
It's very difficult isn't it? It's amazing that you're able to continue with the digs. I just know I need my husband with me in consultations, especially now I'm being considered for referral for a lung transplant. Maybe your idea of taping the discussion is the way forward.
Agreed. I presume that I will have another appt if I get offered surgery and I'll ask if I can take my OH to that. I'm the one in the hat!
That must be so interesting. My husband is researching the area where my family house is because the street numbers start at 11.
If you are in the UK have you looked at the old OS maps for the area on maps.nls.uk/index.html as you can get lots of maps there?
I hope everything goes well for you Digger. You live in a beautiful part of the country. Thinking of you. Xxxx
Good luck Digger. I hope they can fix it and you can continue on your treks to and fro home in more comfort! xx 💕
Good luck hope it's a positive response
Good luck with your appointment on Tuesday, could you ask if your husband could be included by having a Zoom meeting, this way he could be part of the appointment, if not a recording would enable you to both go through this after x
All best of luck for your forthcoming appointment and going forward x
All I can add is that Azithromycin has helped me to bring phlegm up easily and so far has prevented me from contracting further lung infections. However I do lie on my side every evening for about 20 mins, take in deep breaths through my nose then huff out through my mouth to regularly bring up the mucus. I find this helps a lot. Hope the face to face goes well for you. x
Best of luck with your appointment Digger0, I do hope they manage to resolve soon so you are fully fit, well done you, all that fresh air must be amazing too!!! 🏆👏😁
Good Luck With Your Face Too Face Appointment Take Care Keep Safe 🖤🖤
Good luck digger I am so glad your AZITHROMYCIN helps you my chest consultant sent me to Addenbrooks hospital because I have Bronchiectasis COPD ect and they dident suit me at all so had to come off of them (felt I had let them down for ages after that so I am realy pleased they are helping you good luck with your consultation I hope everything goes well for you KEEP ON TRUCKING KEEP SAFE SUE👍👍👍👍🥰