Happy Fran,can you really imagine the Nhs giving us something like that.it is hard enough to get an elastic band out of them.Your device looks like something out of a Dr Who set or something you might purchase from the milk marketing board or dare i say a dodgy shop in Soho.
Enjoy and come back to us with super lungs or the antidote.
You remind me of a call I had from my GP surgery last year after requesting a new spacer once a month for four months....."why have you asked for a new spacer"? Me: "because I'm using one I was given on PR in 2013". Them: "is there something wrong with it"? Grrr
Hi stone, totally unrelated 3 questions please? If I'm not sleeping does bipap still work? Any advice about buying a small portable concentrator to go out with and cut out the incidence of trips.and near misses with the umbilical? How and when does an oxygen nurse appear?
I am enjoying the forum as well as getting advice. Cheers Scouse taff
My end of the football world in London is doing ok Happy it's the red faces of the Mancunian devils oop north who are suffering says he with a slight snigger. x
Bloody Hell! that is a quite impressive piece of kit!
The most I ever got was a huge plastic bottle with straw placed in top filled with water and the aim was to take a deep breath in then blow into the straw to release the air hence make the water bubble ha ha cool eh ... we can only dream of the wonderful gadgets u are advised to use ...I mean is that machine a similar thing to lung function testing or has it got liquid in ...forgive me I can't work it out xxxx anyhow sounds like your fitness is going up my sis xx xx you are doing gr8 Fran oh and has the 2 travellers returned from their cottage retreat (I love how Aria went ) ha ha
Hi Cas I'm not too bad but things a bit unsettled as I have now got a problem where my brain has gone into my spinal chord by 6mm and I had a very scary experience as soon as I got up on the Monday morning where I literally walked from my bed to bathroom and my head suddenly felt like inside of it was exploding 🤯🤪..I knew it was something serious so went docs and sent str8 to hosp ...had scans done whilst in there for 4 days and I have been told I now need to go to a specialist hosp in Liverpool and may need an operation ....either way I'm now experiencing severe pain in head frequently and the noise of my heartbeat in my ears it's terrible Cas sorry to go on but I'm struggling at mo as so much has happened in past 4 years ...I'm also overdue a pink skin lump removing off my forehead and was supposed get it removed on one of the days I was in hospital so will have wait again now .....other then that I'm ok ha ha ..I have only used my car I got with the hoist for my scooter about 5 times as Been too ill to go out ...remember I was so excited as it was my first car I could drive myself ha ha well that is waiting to be taken for a good drive out so got to get fitter to get in that car and out this house xx xx.hey any news on your transplant as I'm sure u had some sort of appointment a while ago or an update I hope I'm correct there ? Hope your girls are well and how is the lovely Chom ? thanx for asking how I am as it really means so much when I'm so down to know good people are thinking about me and that's why I like this site 💝 take care love mel 😘
Hope you can kick all that pain and complication out of your life soon Mel and we can get you in your little car and out into the big wide world that is waiting for you.
That sounds absolutely horrendous and must be pretty scary too. I am so sorry. I hope there won't be any need for surgery and somehow it will rectify itself, is that a possibility?!? 😑
I am still waiting, but at my last appointment, the doctor said we are getting closer to transplant and bumped my once every six month appointment to four months, so I see him again in November. Other than that I am okay. My girls are fine, the youngest one starts an internship pretty soon and the older one is busy juggling work and boyfriend. 😉 Chom is a happy pup, rather spoiled I'm afraid. 😨
I hope you can get more use out of your car very soon Mel. Just take everything slowly and easy. A day at a time. Thinking of you.
Hi Mel , It feels a long time since I replied to you. So sorry to read that you have been Struggling so badly. Like everyone else on the Forum I wish you well and please be Strong. I too have a New car from last Tuesday ( 1 week), thought I would never drive again after stopping 18 months ago. Slowly I have ventured out in it with Hubby by my side, I have Named HER " Feliz" Happy in Spanish, she's a bit of a Dish. Ha Ha. Hubby has his Hair & Beard shaved off Tomorrow for a Good cause, BLF, Will Post Photos in a few Days. Keep Positive Hun, Sending Love n Hugs. Carolina XXXX
Oh Kemety, so sorry to hear your news it sounds awful, poor you, I am sure that the doctors at Liverpool will sort you out. I know how hard that is when you can hear your heartbeat in your ears, I have had a mild spell of labrythinitis for the last few days and my blood pressure went right up which results in this problem, luckily it was short lived. Look forward to that ride in your car when you are better, keep us updated, big hugs. Irene x
Oh dear, I do hope things improve for you soon, stay strong if you can
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Hi Mel 🌼🧚♀️
How are you these days? 💕
Yes I had the straw, bottle and bubbles lol😂
No liquid in no. so sitting down you breathe in by expanding your chest and breathe out by blowing in the tube as much as you can so it goes up and shows your volume. I painfully reached the 1500ml, of course the more tired I was the less I did..
I should aim at 2000ml then 2500ml I don’t know what it means really but he said don’t worry do your best..you bet 😃
No they are going on to Milano next. Bea has got work for a month but hasn’t found a place to live, a cat friendly place 😻..
Friendly Aria is back and forth at the vet! All those foreign mice and sparrows😉
Yes and I realised how poor it was.. so I need to work at it..in fact the physio said what is your problem are you congested? So I answered not presently but I had to explain about LAM. First time he had heard of LAM but he is used to treat cystic fibrosis etc..so I said I can’t breathe, I have to work on my lung capacity.. Gwen, the lady of the LAM Foundation gave me a good description which I use to explain:
«LAM affects the alveolar walls that create the air sacs that allow oxygen to be transferred across them. When those walls are broken down, the cyst walls sometimes replace them making oxygen much harder if impossible to transfer across. Dr. McCormack used the example of a honeycomb. If you cut it in half and lay it on its side, there are all symmetrical chambers inside. That is like our lungs when they are healthy. When LAM is there, those delicate walls get knocked out here and there creating holes. Those are the black spots on the CT scan. The more walls knocked out, the bigger the hole.»
then he brought out the toy..
I learned a few things, he doesn’t want me to exhale blowing out the candle etc he said I would desaturate faster which is true, so I said pursed lips..he thought the 6mn test wouldn’t be useful..I will have to do the bike test..
So next time is Thursday but I won’t see the same one, which is a pity because they all have their habits..
I’ll tell you in a few days, he picked up my reliever and said a few puffs of that helps but I had already nebulised at 5.30 am, had a couple of lungo legero!
Thank you Carole 🌸 just looking at it wears me out xx☕️
Then I had to have a back massage because I must have contracted my broken vertebrae doing all this breathing 😃
Watching «Age before beauty », makes me think of another of those hairdresser beauty salon series we had a few years back..it is not very highbrow but it takes my mind of things today together with paracetamol and my heating pad.
Hi Fran , that looks too heavy for me to move. Glad to hear it works for you but as said don't think NHS would supply, we have to pay for some small physio items now and most walking sticks ect are only on loan to patient. Good luck with your new toy xx
No it is very light actually. It is finding the right position I will need to look for something to lean my elbows on..
Oh I will get a bill for it for sure. I don’t think it is covered by basic Swiss insurance although my nebuliser was subsidised by the Swiss Lung Foundation I didn’t have to pay for that.
I did better first thing this morning after my breakfast and nebs I went up to 2500ml so not all is lost, although my ribcage is hurting now 😃 all this blowing!!
Going to the eye checkup today. Storms are brewing..
Hello again Fran, you better take care of that new toy as well as yourself. No doubt you will have a bill for its use, hope it is as light as you say. I've been to physio today got back around 5pm, the good news is my movement in the shoulder is improving but it will remain painful while the physio get my movement back to keep gobbling the painkillers Have a pleasant evening speak again soon xx
Hola Carida mi Amiga Fran, My Computer was Down all day Yesterday, Hubby eventually got it going, Don't ask about the Youngster Mobile Phone Does my Head in... SO, Now catching up. I must say that if this contraption works well then most of us Lungies, must try it. I go on Tuesday 4th September to my Transplant Hospital for my Tracking Appointment, so will write your Description down along with the Link from Stone. The way you describe Lam is fascinating, much like the way it was described to me by The Professor at my Valve Procedure, I don't have Lam as you know. The explanations are very much linked aren't they. I do Admire you so much for all your Positive Comments on all you do and are achieving. Since you mentioned your Breathing Exercises, which I do also, I have been more aware of them and have now put that extra oomph into my Tummy inhaling, I'm also Dieting before I get to The QE on Tuesday, so I weigh a bit less. I will be putting on a Post Photo for Friday re- Hubbies Head/Beard Shave for our Breathe Easy Group Event Tomorrow, all Proceeds got to BLF. Gracias Fran por Todo. Abrazos y Besos, Tambien a Bea & Aria, the Globetrotting pair. Ha Ha . xxxxx
I think I have had 4 of those at this point. I think I only have 1 left because I used to toss them. I used it in the hospital and the first few weeks at home, but that was it. I should probably take it out of the drawer, and keep using it.
It looks a bit like an instrument of torture. I doubt we’d get one on the NHS, not because they don’t want to hurt us but because of budget constraints. My husband went for an asthma review at our gos, and asked for a new peak flow metre. He’d had his about 20 years and it didn’t look too good. I’d had my asthma review last week and the nurse had asked me if I had a peak flow metre - I have. Her response to my husband’s request was that he can share mine! I think not! Much as I might love him, I don’t want his bugs infiltrating my compromised immune system!
Hi Happylondon i,v got one i was given it last year after lung surgery.The lowest on mine is 500 and the highest is 4000 i was on 500 for months(my partner gave it a go and went straight up to 4000 the showoff) it took around 6/8 months (roughly) to get to and around 2500, it was a really good tool and helped immensely, it really is worth doing and sticking with it.Good luck
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