She came at 3am with a nurse in tow she phoned the Doctors and got him to put the Meds Back on repeat hope I get them very soon .She also prescribed a flutter device But I havent to use it till a physio has seen me will be 3 to10 days She is getting the clinical psychologist to do a joint visit with her she is keen to prescribe the anxiety tablet that begins with L and you put under tongue but won't do it till they both come .I Told her how low my sats where going she thought my oxi must be Faulty I said check it with yours it prove I was right .Whilst She was here sats dropped to 74 she said as long as they come back not happy about that .I asked about a respiratory nurse she said don't need one got us so I told her hospice
finishing in 8 weeks she coming for 12 weeks and would you believe it well I'm sure you will she is going on annual leave and won't be here till 19 th of September I kid you not She is also talking possibly of me staying as a in patient for a week for in depth counselling. I'm frightened to move from my chair in case of falling sats and worsening pain sad isn't it .I Told her in a momment of hope I Booked our tourer onto a quiet country site Thursday till Monday wanted to go for 2 nights But she only had 4 and we can stay for 2 as long as we pay for 4 I've paid a deposit and she has our card number so would take money even if we don't go will be charged matron told me to go said you could be bad at home or the caravan take a chance just don't want to end up sitting on toilet with nebuliser again keep your fingers crossed for me just wish I could go pain free for once would be great can but hope .She said I'm Definitley retaining C02. And to Blow it off anyone any tips don't want my oxygen to go up yet again don't think it's safe .I asked her about a rescue Pack told her Doctors phoned and told me to take mine. She said need 3 samples before I'll get one and I would advise you all to ask for sputum Bottles she said there's a national shortage also they can't get hold of accupella well that's all folks keep well as you can .
Written by
Time_2_drink
To view profiles and participate in discussions please or .
I will try getting jumpy now wish I could move about more the fear is terrible hopefully when clinical psychologist comes she will be able to help me Best wishes
Hi Margaret, I'm crossing my fingers too for you and hoping that you can get away and at least have a change of scene. I can imagine how bad you feel on Frank's behalf. I would feel exactly the same but you appreciate what he's doing and are very grateful so at the moment, that's really all you can do. It would be brilliant if ye could have a pleasant two days away in the van, good for both of you. Here's hoping.
Thank you Billie Jean I think I went over board could only Book 4Days not sure it was a good idea Frank sleeping soundly I woke up with no oxygen on again sats at 48 good job I caught it just waiting for them to recover before I lay down again hope your Days are pleasent Best wishes to you .
I hope you manage to get away for a few days, even a different view from the same chair will be a change. I also hope you can get this oxygen thing sorted out. I am not surprised that you are anxious you have so much to cope with. Thinking of you with love xx
Thanks it's always something with me isn't it not seeing oxygen nurse till October I have just had a phone call from physio about using a accupella But the only time she can fit me in is 8.45 which will be a bit of a bind although I'm awake takes hours to get pulled round and dressed love Margaret xx
Hi, I love the Matron telling you that you can't have respiratory nurse as you have her and she's going on leave! I have met so many awful health care professionals in the last couple of years nothing surprises me anymore! Hope you manage to get away and have a good time. Thoughts are with you.
Thanks. The matron I had previous signed me off about 5 weeks ago I asked her the same question consequently I've Been without either ?The first thing the matron said yesterday was you have got me for 12 weeks my response was who's my respiratory nurse I do not want to be left I the same predicament .The matron was suppossed to start last Thursday it wasn't till 4pm I was told she wasn't coming now she is off till The 19th of September I hope she isn't including them weeks into her 12weeks we shall see take care .
Hey, listen to you! You've booked another couple of nights away. That's fantastic. I do hope all goes well for you this time as it would be a great boost, I'm sure. I hope you manage to go and enjoy the break. As for your matron ... well! xx Moy
I know what can you say about matron would have thought she would have holiday cover so why come once then not for weeks unbelievable well may be not .Booking nights away I just get carried away then reality sets in just hope no Dramatics this time xx
I only discovered the Community Matrons existence a couple of months ago and had already done most of her work sorting out my Mums care plan myself! Here in Bournemouth the respiratory nurse team are available 7 days a week 9 till 4 and I was instructed to call them if Mum was having trouble. So if you were down here I would advise you to get the respiratory nurse team's number and call them when you need to. Look up your local services on line maybe? NICE guidelines specify that all areas should have specialist respiratory teams as here who you can contact independently of anyone else if necessary. I also think that Mums Community Matron is a bit full of herself and a bit precious about who contacts who. And as she gets paid about £40K I think she has to justify her wages. But I'm cynical like that.
And I totaĺy agreePhil40, we also have extremely good respiratory nurses, and I mentioned this issue Margaret has with the community Matrons to mine, her response was that they are a service under threat, but they just do not have the in depth knowledge of the respiratory teams, and should be taking their lead from them not dismissing their services out of hand.
Time_to_drink, do as Phil suggests, lock up your respiratory team and contact them, your community Matrons aren't really doing it for you are they?
Enjoy your break, even if its only two days and try hard not to overthink it lovely, you've made huge great leaps in progress, keep reminding yourself of that.
Frank is a diamond, he loves you. That's why he cares for you, don't deny him his right to do that, its what partnerships and marriages are about, you would care for him if positions were reversed wouldn't you? Course you would! Did it ever occur to you that perhaps he feels a bit hurt when you seem to push him away by worrying about him caring for you? I'm not being wicked, its just something my own diamond said to me.
Thank you I take on board what you say about Frank also I will make sure I find out about respiratory nurses not being left high and dry again don't know why matrons only do 12 weeks do they think we are magically going to recover and not need a port of call anymore ridiculous all the stress does nothing for this condition does it xx
Does your mum only get mayron for 12 weeks if I hadn't been going to hospice I would not have been rereferred. I shall miss the hospice when it comes to a end I was told about matron from Doctor in A&e he told me to get my GP to refer me GP said he didn't know about them at first I Definitley do not want to be left with no back up when hospice and matron finish .
Hi Time_2_drink, sounds like your having a busy medical time again do try and get away for a break, they say a change is as good as a rest. Lovely to read your update and some of the news about national shortages. The national flu jabs will be available soon I have an appointment on 16th September for mine. Have my fingers crossed for you for a nice break and no pain xxx
Thank you Katie yes it's all go again unbelievable national shortage of sputum pots think there has been a problem with the accupellas I don't understand why I can't have my rescue pack replaced feel a bit safer whe have one in situ if God forbid I get another it could have took a hold before I get them starting to get worried about going away now thanks I hope to have a respite from pain would be lovely hope you are doing ok xxx
Hi Margaret, is it next week you go away for a few days, you may feel you could manage the 4 days. Would your oxygen last you that long? What a performance with your matron, nothing changes does it? Have a pleasant day. Love Lilian xxxxxxx
It's today Lillian unsure whether I am up to it but will try my best .I have a loan of a portable concentrator for in the caravan But it only goes up to 3and I'm on 4 for amboltary I have a loan of cylinders for going out but they are heavy for me and only last 2hours so can't stay out long I can't take liquid to the caravan love Margaret xxx
Hi, I am not sure how long Mum is getting the Community Matron for it may be 12 weeks but to be honest we coped without her until a couple of months ago so it isn't going to make much difference. My understanding of the Matrons role is she is the care coordinator for people with long term illness and thus makes appropriate referrals to services etc. As I had already done all of that because no one told me of the Matron or her role I was already in touch with the respiratory team. Seems that a lot of GPs are not aware of services that are available for COPD, which is a shame because hospital admission of their patients costs the surgery money from their budget. My experience is that pretty much every new doctor, nurse or anyone else I have met has treated me like an over concerned next of kin moron as I have tried to find my way through the maze that is the NHS. When they realise I have a working knowledge of NICE guidelines they are a bit more diligent. But not much. I have worked in GPs surgeries and the squeaky hinge gets the oil. You have be a buzz in their ears so they have to do something to make you go away. It's sad but true. I hope you can getaway and hope you enjoy your time.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
xxx
I am so scared that this is it
