Long winded. :(

[Melissa87]

Hya guys,

Hit a bit of a lull, my dad has been using the bicap machine for a while now but recently been asking if he can leave it off (even though he knows how important it is for him) he needs it on a minimum of 6 hours and it's a push to try and keep him on it for that long. He's saying that he can't breathe and feels like there's no air around him. Could he need the pressure altered?

Also when he wakes he's telling me that his chest feels like a slab of concrete and takes him about an hour to feel normal again. That can't be right can it?

Also he's using 3 inhalers ventolin, setotide and spirever. But he's using one ventolin pump a week. And has done since his recent decline in health, he's been told that using it that much isn't very good for him and the doctor won't give him more than his 2 prescribed every month.

Hes claiming that his chest is tight but the gp claims it doesn't sound any different to the last time she listened and gave him 6 steroids to take every day for 5 days.

We've got an appointment tomorrow with the consultant but I think it's just to talk about using the bicap machine and how he's getting on with it.

We are also picking up a tosca machine to use for the night.

I'm sorry for the long winded post but I have noone else to question.

Does anyone else use anyother inhaler or would a nebulizer be more beneficial also has anyone used the tosca machine over night?

Love and light

Melissa x

[Jessy11]

Hi Melissa, sorry to hear your Dad is having problems with his BiPaP machine.

I think you should phone the BLF helpline or your GP for advice. The sooner the better as it sounds as if your Dad needs urgent help.

It's a horrible experience if you feel you can't get air into your lungs.

Hope you get the help for Dad that you need & take care of yourself 🌺

[Toci]

With no disrespect to your Dad's GP, we are usually good at knowing when something is wrong. I am pleased you have the consultant appointment and would encourage you to ensure your Dad is listened to when he describes how he feels.

[Melissa87 in reply to Toci]

That's what he said but the gp's attitude is that she's not qualified in copd well enough to give him more advice. She suggested that he goes into hospital where there's more equipment and more members of staff to answer any questions he may have, but if she states his chest seems no worse what grounds could she admit him on? His oxygen and hr are ok also.

[Toci in reply to Melissa87]

I assume she listens to his chest with a stethoscope? It is a wondrous instrument but cannot 'see' all. His consultant can arrange x-rays, MRI scans, blood tests, oxygen saturation readings, spirometry tests and I don't know what else, to find the problem if he needs to, plus he will have much more experience. The TOSCA readings will help clarify too. Don't just let it go on, please. If his appointment is in the afternoon then ring the BLF in the morning. They will be able to help by advising you what questions to ask, what symptoms to recount, etc. Good luck.

Telephone

03000 030 555

[Melissa87 in reply to Toci]

Thank you appreciated

[Billiejean_2 in reply to Melissa87]

I hope you get the help you need for your dad.

[Jessy11]

Hi Melissa, when I was in hospital on a ventilator( I had a tracheostomy), I was on both BiPaP & CPaP machines.

I eventually was being weaned off the machines to enable me to breathe on my own.

I got to the stage that I felt the ventilator was feeling overwhelming, eg I felt I couldn't breathe properly.

That was the turning point so I had the trachy removed.

Now I realise your Dad is not in the same position as I was, but my point in telling you this is ........ he knows his own body. He knows how he feels, how his breathing feels & the doctor must trust his instincts. If he feels the machine is making him breathless, then listen to him & get advice from the respiratory consultant who is an expert in the field.

I hope everything works out for you & your Dad 💐

[Billiejean_2 in reply to Jessy11]

Jessy, what is the function of a bi-pap machine ?

[Jessy11 in reply to Billiejean_2]

"BiPAP" is a term that is sometimes used colloquially to refer to bilevel positive airway pressure (BPAP). A BiPAP machine, which is more accurately called a BPAP machine, is a breathing apparatus that helps its user get more air into his or her lungs. Created in the 1990s, the BPAP machine is derived from the continuous positive airway pressure (CPAP) machine. Unlike a CPAP machine, however, a BPAP machine uses variable levels of air pressure instead of continuous pressure. Both of these devices are used to help treat breathing difficulties, particularly obstructive sleep apnea.

I copied this from a website explaining its use as I was struggling to explain it to you.

Hope this helps 😀

[Billiejean_2 in reply to Jessy11]

Thanks Jessie ! I've never really understood their function apart from their role in treating sleep apnea. What level of breathing difficulties would you have to use a biPap/Cpap rather then oxygen, IVs etc ? It's not a ventilater is it ? The device to keep you breathing artificially ? The reason I ask is that my brother-in-law, who died in 2010 was wearing one of these for almost a week before he died. My sister doesn't like to talk about it and I never understood why he was wearing it. But he had no lung disease and never suffered from breathlessness. He went into hospital because of severe osteoporosis that had fractured two vertabrae in his back. I do think he developed pneumonia but seemed to get over it quickly enough. I'm haunted by the picture of him wearing this thing strapped onto his face. He died suddenly one morning while the nurses were making him comfortable. My own condition wasn't so severe then and I'd never seen or heard of one before. Hence the curiosity. Thanks for your help.

[Jessy11 in reply to Billiejean_2]

Oh Billiejean, I'm so sorry to hear about your brother in law.

To explain, I was hospitalised with pneumonia & full body sepsis. I was unconscious & very heavily sedated.

I had to have a tracheostomy & was on a ventilator.

As my illness improved I was weaned off the machines. I did not have a face mask like your brother in law.

The machine was attached to my tracheostomy by a tube. I was on these machines for 67 days in ICU.

As I said, it got to the stage when my lungs had improved sufficiently that I felt the machines were overwhelming me & I could breathe better on my own.

This all happened a few months ago & I no longer need any machines or oxygen to breathe. I'm on 2 inhalers & 1 reliever if needed. So you can see I've come a long way.

That's why I think you should always listen to your own instincts & obviously also to the experts.

Sorry for the long winded explanation!

Take care 💐

[Billiejean_2 in reply to Jessy11]

Gosh Jessie, you've been through the wars but amazing to hear that you got through it and recovered completely.

I've always thought of a respirator as a long tube with a mothpiece, plugged into machines. But maybe you have to have a tracheotomy to have it that way. I wish they could have done that for my BIL because the mask distressed him a lot. I know people can and do use them successfully but in his delicate condition, I don't know why he was put through that. But no point in wondering now. Thank you so much for the detailed explanation and for sharing your own story with me. Look after yourself and stay well.

[SquirrelsHolt]

Toci gave u some really good advice in his responses. I've even used my phone to record the meeting with my consultant so that I can re play it over and over until I fully understand it. I asked if this was OK to do beforehand but the staff had no objections at all and said it was a good idea. Only a thought. Good luck anyway.

[Hidden in reply to SquirrelsHolt]

What a great idea. Wish I'd done that when I was there!

[Ergendl]

Good luck for the Consultant's appointment today. Hoping they listen to you both, find out what's wrong, answer your questions and find a treatment that helps.

[peege]

Good luck with the appointment - I hope you tell him/her everything you've written so clearly here. Poor man, poor you! Very worrying.

Thinking of you