Just had my video consultation

[ProudYorky]

I've just had my video consultation after the initial cock up where it would not connect and sound in and out it went ok ...not ideal way to be seen but in these times we have to get on with it in anyway possible .My consultant is a lovley guy he explains things very well and gives me time to ask questions . The problem is he says he desperately wants to have tests and scans done to see how much my lungs are deteriorating so he can decide a course of action with medication but I have to wait untill Sept /Oct to see how the NHS are coping with the virus situation I'm not allowed to go for spiritually test ect .... I am also desperate to know the state of progression .So as it goes I have to suck it and see... The overall experience is in some ways a lot less stressful not worrying about traffic parking and how long sat uncomfortable in a waiting room ....plus think it's a lot safer in my house than in the big bad world out there ....

[Troilus]

So pleased the consultation went well. You are right about driving to the hospital and finding parking spaces. ( Especially if the appointment coincides with visiting time.) Sometimes it can seem a bit pointless when it is just for a chat. Maybe, video calling will be the way for the future.

Sorry to hear your tests are still delayed. I was also due for repeat spirometry in May. Still, better safe than sorry. With so many being asymptomatic you never know who blew down that tube before you!

[ProudYorky in reply to Troilus]

Troilus so true don't know what germs we could pick up I would love to get my tests done especially the scan but safety first I hope that this is a way forward though for routine appointments as this is far less stressful because the parking at our place puts up my blood pressure to start with

[Oshgosh in reply to ProudYorky]

Yes,it’s much nicer to have your appointment sitting on the settee with a brew.the first phone consultation I sat waiting for the call.

They said I was breathless.my husband said they haven’t heard you at your worst.

So before the next appointment I was pottering in the kitchen,tidying cupboards.so when they rang I was very short of breath.perhaps a tip to consider ,so that they get a full picture.

[HungryHufflepuff]

I'm glad it went well for you but it really sucks that any non coronavirus treatment or check ups or tests are just being pushed back for months. Wishing you all the best.

[SORRELHIPPO in reply to HungryHufflepuff]

There was talk, recently, about the Nightingale Units being used to catch up checks for Cancer Patients. If they did put some of the more useful machines in them, good spacing and parking, where all non-Covid-19 patients could go for Tests. We do need some staff and testing time (sorry about the pun) for other conditions, or too many will die sooner than need be.

[ProudYorky in reply to HungryHufflepuff]

Yes it does I was supposed to have my tests done in March it was stressed they were important and nessesary for my ongoing treatment now it seems I'm not that important ....This virus has done no one any favours

[Oshgosh in reply to HungryHufflepuff]

I know exactly what you mean.what does really frustrate me is that the media refer to cancer and kidney patients .

They don’t mention us people who can’t breathe properly.

I feel like an ignored expendable.

Sorry to rant. Take care

[cofdrop-UK]

Glad your consultation went well Kakariki but so sorry you have to wait for the tests you require.

Cx

[Oshgosh]

I’m glad your consultation went ok. It’s so frustrating ha ing to wait for everything due to Covid.

I’ve got a face 2 face on Friday.

I’ve had 3 phone consultations,the last 1with rheumatologist and ILDconsultant.

They have given me spirometry,Appointment which I’m dreading as I’m struggling to breathe,let alone blow..

Although I know I need to go,I’m worried sick about what they are going to tell me. I plan to ask about anti fibrotic. Drugs.

What I really wanted to say is if you have access to nurse led helplines at the hospital.

If you do have access,you need to ring them if you are struggling .iknow you have to leave messages and it’s a pain,but my team always get back to me.

Sorry to ramble on.i hope you are keeping safe.

[ProudYorky]

I have no access to nurse led helplines at all luckily I'm don't feel any different to when I saw him in Sept but I am desperate for my spirometry and scan to see how badly (or not wishful thinking) my lungs have deteriorated I wish you good luck for Fri fingers crossed lets me know how you go on 👍

[Oshgosh]

You just need to keep on looking after yourself.

If you are struggling with your health,if there’s no access to helplines,perhaps you could try contacting the consultants secretary and asking if she can help you

[Ergendl]

Thanks for letting us know how you got on. So sorry you can't have your tests until September. At least your consultant sounds ace.

[ProudYorky in reply to Ergendl]

Ergendl yes he is genuinely a lovley guy and so apologetic he can't get me in It was nice to see him face to face and thank him for all him and his team are doing for us all he was chuffed to death .Some consultants just go through the motions but he goes that bit further ...

[Izb1]

I really dont understand how the hospitals can be run off their feet with covid, there arent that many people in hospital with the virus. When I went to the hospital last week there werent alot of people around and the clinic I went to I was the only person in there apart from the 5 nurses milling around, even the xray department only had around 10 people, so really dont understand why the delays in people being seen to. I do think zoom meetings are really the way forward for all of us when we dont need examinations and am sure this will save time and money for all of us and will be safer. I do hope you wont have to wait too long x

[ProudYorky]

Izb1

I don't think it's because there run off there feet it sounds like because of the nature of my lung disease spirometry test ect are very dangerous to do for us and the technicians I'm lucky I would say as my lungs arnt as bad as many on here and at the moment I can get by but yes this is a way forward for us all how many of us have stressed and struggled to get to our appointments only to come out thinking could have done that over the phone ...