Issue but no diagnosis

[LD1970]

Hi, my father is 77 and up until this year had been relatively fit and well. He started with breathless on exertion but now has it as soon as he stands and walks a few steps. He was admitted to hospital in May after very bad episode, was in for 3 weeks and had numerous tests. He now has ambulatory oxygen, recent CT scan clear but spirometery test indicates problem. At hospital appointment yesterday Doctor says he fully expected to see Fibrosis and that he’ll just see Dad again in 4 months!!

I’m at a loss what to do next, Cardiology have ruled out any heart issues.

MRI scan has showed bulging C3-C4 disc bulge with mild cord compression and myelopathy.

His oxygen levels can drop to under 80% when standing and moving without using his oxygen!

Any advice would be very appreciated 🤞🏻

[knitter]

The best answer I can think of is to ring the ALUK helpline , hopefully they can advise you on what to do next .The helpline is open for UK residents during the working week on

0300 222 5800.

Best wishes

[LD1970 in reply to knitter]

Thank you, I’ll do that

[Patk1]

Hello.welcome to the forum.knitters advice is a good starting point.Obv dad needs to be putting 02 on before standing + moving,if dropping so low.

Meanwhile,I'd read up on (and have dad do same) " controlled breathing". It's a technique that has u focus on breathing in the best way to help .it's my goto when I walk in or out of house,stairs if struggling to breathe etc.its worth practising just when sat relaxing so it becomes familiar.he can use it for cpl mins before standing and whn walking etc. Even to loo,kitchen etc.

Hopefully by nx appointment,they'll have a clearer picture re disgnosis and see how dads managing at home.

I would ask gp what the ct scan has shown in regard to lungs/ airways.

Dad will adjust,its not easy and it really does take time.

Diagnosis doesnt often mean " cure".

It will help with choice of relevant treatments which may help some symptoms.

Adjusting means moving goalposts and expectations to how dad is "now".sounds easy but does take time,even to accept change.xxx

[LD1970 in reply to Patk1]

Thanks for welcome and advice x

[Izb1]

Hi and welcome. Sorry to hear about your Dads problems. I dont have any advice to offer you but wanted to say welcome and keep us updated on your dads condition. Its worrying when a parent is poorly and you dont know which way to turn. I am sure the helpline will point you in the right direction x

[LD1970 in reply to Izb1]

Thank you 🙂

[Biofreak]

Hi LD. It's good that your Dad has been given ambulatory oxygen. Your Dad's breathlessness can be a number of things and the way forward will depend on the results of the CT scan. The doctor will suspect fibrosis because it restricts lung function. Hopefully the GP will get the CT scan results within a couple of weeks and a treatment plan can be decided. Four months is a long time to wait though. Controlled breathing can help a person remain calm when breathless. When you speak to the helpline they will give you guidance. Wishing you and your Dad well.

[LD1970 in reply to Biofreak]

Hi, thanks for your reply. The CT scan is clear however spirometer tests shows issue. Waiting for a neurosurgical appt for the issues with discs in the neck but no one has indicated if this is linked to breathing issue! 🤞🏻It comes soon, Dad seems to be giving up.

[Biofreak in reply to LD1970]

It could be related perhaps, especially if he's in pain. Being breathless is distressing and I imagine he's anxious too which won't help. I hope he gets a quick appointment.

[Patk1 in reply to LD1970]

Oh no.sad to see yr dad like that.has he been given pain meds? If not,I'd talk to gp.i do hope he's seen quickly.does yr go surgery have a respiratory nurse who could perhaps advise on coping strategies? Sounds bit like he's just having to get on with it?In Lancashire,we have IHSS for respiratory - intensive home support services.perhaps chat to nurse/Dr and tell thm how he's feeling + struggling 🤗😘 must be v hard 4u to see xxxxx

[LD1970 in reply to Patk1]

Thankfully he doesn’t actually have any pain. Respiratory nurse has given him some coping strategies but think I’ll get in touch for follow up. It’s sad to think that at the start of this year he could get upstairs, do his own garden and drive and now he can’t do any ☹️ x

[Pipswhips]

Welcome is your father under a respiratory consultant if not ask your go to refer you if you are I would a word with your gp and see what he/she says thats only advice I can give you apart whats already been suggested ring asthma & lung adviceline and speak to one of the nurses there should be a community respiratory specialist nurse you can ask your gp if you be referred to her/him

[LD1970]

Hi, thanks for reply. We seen consultant last week and he just said that he fully expected to see fibrosis but CT scan was clear and that spirometery results show there is an issue but that he would see Dad again in 4 months. I’m going to see if I can get a copy of the spirometery results and give the A&L advice a call.