Hi I've not been posting much recently things getting on top of me a bit and don't want to be a nuisance anyway Some of you may recall Frank my husband got a parking ticket at the hospital when I was admitted in April he appealed just heard it has been quashed thank goodness .The hospice helped us to claim attendance allowance and I've got it reviewed 2020 am I going to miraculously get better wish I was lol .The problems I have been having with my sats and nobody doing anything well oxygen nurse came last week have not had bloods done for months due to infections she put me up to 2 on resting and 3 on excercise to be reviewed in a month really don't want to go higher this morning I went to the bathroom and sats fell to a all time low of 55 very worrying and that was on 3 .I am still going to PR but I have to stay on 2 minutes until physio has spoken to oxygen nurse about putting oxygen up she had tried phoning get a few times now it seems she is on Holiday so waiting for some one to contact her before I go back on Monday take care all x
Up Date : Hi I've not been posting much... - Lung Conditions C...
Up Date
Good to hear from you Margaret. You might still be struggling against the odds but you are making progress. 😀 Do keep in touch.
Thanks Don I see you were going off on your travels again hope you get away weather here awful
I did start off Margaret, but came back home after meeting Katinka46 and her BB because the weather forecast was so bad. I shall be off as soon as some good weather comes along. You keep your spirits up, you are progressing. 😀
Glad to see you back T2D. Its good to have a rest from the site when thing are getting to much. Please don't think that you are a nuisance As you are defenetly not. Sorry I can't help with your sats as I am not on oxygen. I have recently been told that I have progressed to the next stage of COPD. I am now stage 3 severe. Take care xxx
Hi hope you can keep of oxygen as long as possible take care of yourself xx
Hello T2d just want to wish you well and say you are not a nuisance so if you feel like posting, please do. It's good to hear from you. Progress is slow but it's progress. Take care xxxxx
Hi sassy hope Pete doing ok. Weather here like midwinter Do you know I don't think health professionals liaise with each other or listen to us my matron is on leave till Monday in America she has booked to see me 1 pm that day it was her who got me on PR then when we got home from PR yesterday note through the door saying district nurse been no answer I told her last week what time I was at the hospital think they trying to stress me out take care xxx
Good to hear from you. I am glad about the parking ticket. it is only a relatively minor thing but somehow minor things have a nasty habit of looming, and making you feel that everything is against you. And glad that the Hospice is coming up with the goods about helping to sort the attendance allowance. Sorry that the oxygen nurse is not really on the ball.
However, I do sense that although it is not all good you are actually feeling a little better, spirits-mood-wise? And it is very good that you posted. That in itself is a positive action. And never think that you are a nuisance. If you are then we are all nuisances. And we all need the help and support that this brilliant forum gives us.
Love and hugs
K xxx
Thank you katinka for your kind response hope things as well as they can be Take care x
Hi Margaret, I hope you don't mind me being familiar as you don't know me but I've also been reading your posts over the last few weeks and have to say I've really felt for you - you have been through the wars haven't you! I think you have done tremendously well and are one brave lady. One thing we have in common at the moment is hot flushes - I only have the occasional cold sweat thank goodness and mine have never stopped since the menopause and have got worse lately, don't know if that is the warmer weather or the condition. However, after twelve years of it I'd had enough and was talking about this to a friend who suggested Sage tablets - apparently they are recommended for other illnesses as well as for the menopause. I went on Amazon and read the reviews, there was someone with prostate cancer had them recommended by his cancer specialist, another with leukaemia, both for the hot flushes associated with the illness or the treatment. Both doing so much better. As well as for menopausal symptoms, they are also effective for depression, digestion and heartburn. I have been taking them for eight days now and the difference is astonishing! They have considerably lessened, only having one or two a day,the intensity of them has diminished, shorter and they seem to just fizzle out. I know you had evening promise recommended to you a while ago - don't know how that worked out for you but it didn't do anything for me when I tried it years ago. If you're inclined to try the sage tablets then obviously please check with your health professionals first as you seem to have a regime of medication at the moment. I've been taking two a day to start with and next week I am dropping to one and see what happens. It seems to be the consensus that it takes about a month for most people to see a complete stop but only time will tell. One or two ladies foun d that combining sage with red clover tablets did the trick for them.
Its Just a suggestion I Thought might help as these flushes are Such a Misery on top of everything else, Regards Ann
Thank you Annie for your kind reccomendation my husband is looking it up for me now I am willing to try almost anything that will make me more comfortable. Frank my husband thinks such things are gimmicks to make money out of us However he is willing to give them the benefit of doubt if it makes life. More comfortable for me .We are just comparing diffrent brands and have noticed asda and tesco sell them so thank you I hope they continue to help you and hope they have same effect on me Best wishes Margaret
Not everyone can take sage. See side effects and warnings here:
So glad to hear from you again and I hope that all the help you are getting means that you can cope better, as I know it has been a long hard struggle. Many blessings xx
Thank you hope things are not to bad for you it is Definitley a struggle and a battle to keep going at times when sats go potty wishing you a peaceful night xx
Thank you, I'm not so well at present, waiting for a cardiac catheterisation to confirm pulmonary hypertension, also breathing getting worse and still waiting for ambulatory oxygen assessment. My GP is writing to the specialist who supervises the respiratory nurse because she comes from a different hospital from where I am treated. I finally managed to get information from Southmead as the reports had been typed but not sent. The secretary is very pleasant but somewhat scatty! Hope something comes of it soon as currently every time I do the slightest thing SATs drop right down! All the best, I hope you sleep well. xx
Hope you get the treatment you need very soon you seem to have had a lot of problems getting your treatment hope things improve for you "The drop in sats are very scary aren't they I have had my oxygen put up for ambultary and sitting I have had falling sats for months very low this morning at 55 the worst I'm afraid that I will have to have another rise in oxygen not good is it .I hope you get your ambultary oxygen quick sharp I will keep fingers crossed for you wishing you a peaceful night xx
Lovely to hear from you. It sounds as though some things have finally been resolved for you. Well done for sticking with the PR! xxMoy
Morning. Moy trying my best that is all we can do isn't it Unfortunatley not to sure if I will be able to continue with PR until my sats are sorted they are really unstable xx
Well, you are giving it your best shot so I take my hat off to you! It must be a real effort but you've done well to get this far with it - not so long ago, you didn't feel able to leave the house. Look at the progress you have made! It's time you gave yourself a well deserved pat on the back - and one for your husband too! xx Moy
Thanks moy xx
We all have times like you have I am waiting 5+ weeks urgent appointment Cardiologist on wrong meds too many years to mention plus b/p tabs 320mg wrong lucky I saw locum who informed me I should not be taking the b/p meds as they have not done any good for years, now 2.5mgs a day new meds. Have preop assessment re an abdominal full hysterectomy as i have Ovarian Mass will not know if Cancer or not till out in 3 mths! Had CT Scan yesterday Nodules in Lung so might have another in 5/6 weeks to see if they have grown! All this has been going on for 6mths re Scans so you are not alone in waiting & not having proper assesments etc. Hope everything is sorted soon my Sats are alway 98% must be the Eucalyptus Oil clearing my Airways. Good luck with everything XC
I am sorry to hear that you are also playing the waiting game I'm sure that we with lung problems seem to be the poor relation in health care unless you are lucky enough to have a good GP and consultant as yet I have not been seen by a consultant .I envy you your sats just had early lunch husband going to carers meeting sats a miserable 68 I despair good luck for your upcoming treatments and he things improve for you very soon x
I was put in for Chest Clinic at the hospital as they were fed up with my constant back & fro at the surgery but they ignore the recomendations as I was refused a Nebuliser & doc said testing sputum a waste of time & money! It is my Colitis Specialist who demands my full blood count every year & it was him who said my heart meds were entirely wrong for me! It was his blood tests that showed possible Cancer my surgery docs are useless been to 2 Locums at the surgery lately had more info & put on proper meds!
Like you I was refused a nebuliser at first my friend in turkey brought me one and the fluid that she bought at pharmacy .Then when I got a community matron she got me the loan of one and contacted doctors for fluid hope you get some it does help me xx
Hi there @time2drink ! I've been reading all the great replies you've had. There you were,sitting at home,nervous to post after a short absence and just look how people have responded....we all have periods when we feel we're moaning about one thing or another. That's why this site works so brilliantly... all of us appreciate the difficult times and when times get better,we can share a little laughter etc. I thought I'd better join in to congratulate you on coming to grips with everything that's been thrown at you. Your Frank is so supportive too and I'm sure by now he's worn a path to the chemists, the amount of times he journey's there!!!! I know we've sent each other a few private messages,but you really are making huge steps and I'm so glad you are posting to everybody once again. Cx
Hi my minder lol has just gone Frank back from his massage and he got a goody bag of men's smelliest as well .Of course still having problems getting Oramorph so when he has had a coffee he is going to tread another path to chemist I so agree with you this is a brilliant informative and caring site hope you doing ok x
Well today's been a nicer type of heat-:dunno what your weather's been like today but down here its sunny enough to sit outdoors since midday but now its clowding over so I'll be venturing indoors. The paddling pool bought for my son's dog Hazel, has come in very useful for me to put my size 7 large,puffy feet into and it is quite relaxing! The majority of my day has been spent liaising with electricians and other workmen to guarantee on Monday,I'll 100% without fail,have a power shower on the wall over my bath. I've waited 2years all but one month for this! Ridiculous I know,but people in Occ Health,Council people and surveyors have all left their jobs which meant the entire process got delayed and delayed and delayed. So Monday is the day. I'll probably go and stay at my best friends coz if the drilling and dust etc. My son can juggle Hazel (who hates strangers)and making cups of tea for the two workmen!! So that's my news,what's going on for you over the weekend...anything nice? Cx
Hi I'm jealous of your weather rained most of the day here dry now but cookout so I'm told .I would love to have a paddle in hazels pool my feet also swollen debating weather to use excercise bike or not decisions decisions .I told Frank if it's dry tomorrow I may go to out of town shops with him but then again it's the weekend so maybe next week .I hope you finally get your power shower after all this time fingers and toes crossed I agree go to your friends away from dust and stress x
Mind you,sitting here for the last few mins til sun goes totally behind big patch of clouds (drink on hand, which if found out,would mean a slap on hand for having a drink do early on etc).... a few blinking insects gave dive bombed into the water and although I'm generally a live and let live person,I'm afraid I splashed the blighters and now there's no flapping of wings! They were all just common flies so I dont imagine I'll go straight to hell for my actions....we'll see!! Cx
Excuse spelling errors but I'm u able to edit -tried 3 or 4 times,without any luck !
Hi just don't let me see dead flys coz I'd get palpitations they are one of my fears isn't it daft dead flies .Why not have a drink isn't it the done thing to sit by the pool drink in hand not quite where we imagined we would be but it is what it is has they say so yes have a drink Frank got Marks and Sparks meal deal yesterday so there is a bottle of wine with my name on it I'm fed up with being a good girl a little of what you fancy as they say X
I would be turning that machine up my self, if I am going through the trouble of wearing o2, then it will be no less than 95
Since it has been turned up I have had headaches and really won't to get to the bottom of this
Oxygen Therapy
FRIGHTENING
Querying Loss of Oxygen Flow In Tubing.
