Arrived at my assesment at 9.30 was met by two lovely ladies, I explained my symptoms and they told me I would be doing a 6 minute walk but at a normal pace not the slow one I do now, anyway I started the walk oh my days out of breath or what but my Sats remained at 95 even though I had to stop several times to get my breath back .... So outcome I can breathe enough oxygen in at the mo it's the getting it back out is more an issue, my heart works overtime so will have to keep an eye on that, but my gases are actually two low which is why I feel dizzy and woozy sometimes, the headaches are muscle tension, due to breathing through the top of my chest and not the bottom, it's pulling all the muscles in my shoulders and neck this giving me a headache, so got to take amytripoline every night to help relax my muscles. Fingers crossed it works....
Plus she's organising a community matron to come out with an OT to arrange getting some aids to help me at home ie: perching stool, shower and shower chair due to struggling standing for to long time, plus I couldn't understand why I couldn't sit in the bath long enough to wash my hair and body and felt the need to get out as quick as I got in, apprently it's the pressure of water on ur diagham making it difficult to breathe, learn something new everyday lol ......
And professor Stockley at the QE birmingham is the leading research doctor into alpha 1. In britian, so hey some bonus to being a pedigree then lmao....
All in all a good day, I'm exhausted now but good reassuring info with extra help thrown in :).....
Oh just a extra bit of info that might help others, as we all know ABG tests are very painful and I have refused to have them done in the past because of this, today I had it done on my ear lobe, bit of deep heat to warm the lobe up 10 mins later and a finger prick needle on my ear , no pain job done. All respiratory nurses and doctors can do this technique , so , she told me today to refuse the wrist one unles it needs to be done in an emergency and tell them I want the ear lobe ABG instead , only takes 10 mins longer for the deep heat to warm ur lobe up, job done......
Hope all are well and for those who aren't get well soon
Xxx Sonia xxx
Ps , picture of Bruno taking over the bed , suppose to be keeping me company, but just making himself comfy more like lol
Always had my ABG done in the lobe except when in A&E. According to the nurses on the chest ward last week all the Resp Wards and Nursing Teams should be using the lobe. The reason that A&E do not is they are not trained and do not have the correct kit.
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Never knew it could that way Alan, always had the wrist done, but will still refuse it in A&E unless life threatening, they can't offer me a pain free way but resort back to pain cuz certain docs ain't trained to do it, no sireee. Lol. X Sonia x
Oh it's sooooo good to read your positive hospital visit.....and you have taught me a few things so thanks for passing advice on. I will definitely remember the ear lobe when it comes to it......hope you get lots and lots of super "aids" around the house. by the way, much as I think your dog is beautiful, I LOVE your television!!!!!!!!!
Thanks Louisiana, it was well worth the 3hr appointment, comforting and helpful, feel exhausted now though, as for the telly it was black my hubby took it apart and sprayed it white as we couldn't afford a new one and it wasn't that old I'm just fussy and black just didn't match my decor lol x Sonia x
He's quite clever sometimes not often but sometimes, shouldn't lie he's brill at DIY to be fair, he just hates it when I say, "how would that look if we..... " he runs off now and says he's busy lol. X Sonia x
Hi Sonia, love the pic of Bruno bet he's a big softee. Glad all went well for you, last time in hospital I refused to have ABG done in wrist the consultant was far from happy with me, then the respritary nurses came along and did it from my ear....no problem and thats how Iv'e had it done ever since.
Thanks peg, yes I've always had the wrist done too, one nurse was so snotty with me cuz I refused and said she would have to document it, whatever, I had to stay in a week and was then blackmailed saying if my results were ok I could go home but I had to have it done still no mention of earlobe technique, but that's all their doing now, not being in more pain when I don't have to be, train the docs and nurses in A&E and I'm sure more people would have it done with less drama.
And as for Bruno, he is a huge softie and bloomin heavy bugger to move too lol.
"Sonia!!! Was just about to log off and your post arrived, I am so pleased that you have been for your tests. And WOW! Sonia.. you sound as if your having some the same care that I have just been given. I too, have now been given a community Matron..(even though mine is a man called Andy.) and a very nice man he is too. plus an OT and a respiratory nurse also. and is it Amitriptyline that you have been given, as I have been taking them for awhile 10mg last thing at night I take. and Sonia, they really do work, you try sticking with them.:).even though our situations are a little different a lot of our treatment still seems similar. If what I am saying makes any sense to you. But! I am hoping now that you will start feeling so much better. Onwards and upwards my friend big squeezy ((hugs)) for you back. Oh!! and I just love the picture of Bruno. What a handsome boy he is too... keep positive Sonia. And keep well wrapped up. Megan "
Thanks meg much appreciated, and to be fair our conditions are practically the same it's only the Alpha 1 and being ZZ phenotype makes it slightly different, I was born with mine and the progression of copd/emphasema is more rapid and at a younger age. Nice to know we are both being looked after we can compare matrons now, will be like a carry on film.
Bruno is a gorgeous huge softie, but bloomin stubborn when he wants to be and he's a big bugger to shift when he's in that mood although it don't last he's to eager to please and food soon tempts him to move. Hope ur feeling slightly better take care x Sonia x
"Boo! Sonia.... So glad your on them. and promise you they really do work, how they work is strange. for they only work on you while your sleeping. so always make sure you take them just as your about to climb into your bed. or maybe you get chased there every night. Lol shush me..just how ever. don't take them before bed time. they took around two weeks for me to start feeling the benefits of them, but then we all are a little different Sonia.... so hopefully you may start to feel the benefits faster do hope so.. let me know how your getting on with them okay. till then "CARRY ON MATRON" :)..Megan."
Chased to bed, it would be a crawl more like and even that's to much effort for that lmao, fingers crossed they work on me like they have u, I will be so happy and will defo keep u informed. How u getting on now are u feeling any better yet or still to early to tell. X Sonia x
Actually Sonia.... Dare I speak to soon, But I am going too. I feel tons better today and after a wonderfully restful sleep and my breathing is so much better today also.. which makes things so much easier when you can breath.. I am so happy that things are finally getting sorted for you too Sonia and I am confidant the Amitriptyline will work as good for you as it does for me. I don't suffer any head aches at all now. yet I was having brain scans for them a couple years back. and it turned out to be all muscle related and the nerve endings flaring up. good luck anyways my friend fingers crossed for you..Megan."
Two peas in a pod ain't we lol. U know it's the family on here that always give me that last boost I need, don't know what I'd do without u all now. X Sonia x
You are not like two peas in a pod at all. You are you, and megan is megan who does not sound or act like you at all.
You carry on being you, and although you MAY have similar symptoms, there are more differences between you than similarities. Reading both your posts is enough to see that.
It is wonderful that megan seems to recover from all these flare ups and infections so quickly, as its not even 24 hours since the last one.
Hi Sonia, it's good news you don't need oxygen isn't it? Bath time sounds terrible for you so, hopefully, the new aids will be a great help.
Thanks for the very informative post. I would dread having a needle in my wrist, my Dad used to hate them so, if I ever have to have one, I know what to ask for. x
I've been taking it for about 8 years for pain conected to my Fibro and undifferentiated tissue desease. They try to encourage me to take up to 50mg a night but, the most I have taken is 4 when I've been in severe pain., which thankfully, isn't very often.
I used to stick to 20mg a night but since having my antidepressant changed last year, I just take one and 2-3 if I'm aching badly because it seems to have a strongr effect on me now. I have to take it much earlier now too 8pm or I don't want to get up. Lol. It really does work. x
I did have it a çouple of years ago but I'm impatient and cuz I didn't feel any benefit as I thought I just taking them, I'm on sertraline antidepressant and apparently it heightens the effect of it some days I couldn't wake up till dinner time that's another reason I stopped taking it but now I'm so tired all the time I'm not bothered about sleeping to be fair now. Will defo keep em up this time . X Sonia x
Seems like they are looking after you thank goodness.
Another little tip my oxygen nurse gave me is to make sure you drink plenty (2pints) of water before having the blood test done I did this last time and it was much easier.
Hi polly I have replied to this response 3 times now but it don't show up my end, I'm not being ignorant I don't know whats going on but if u get this that's for the advice. X Sonia x
hey sis
im happy to hear you have got to the bottom of the headache issue but im gobsmacked that you havnt already had someone round the house to see if you need aids to help but at least they are now......i had a shower put in due to bathing problems x x x
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Hi sis, I remember u saying about ur shower hope ur still singing loudly in it to annoy ur jealous neighbour lmao, just hope this tablet helps the headaches , maybe now I know I'm not gonna keel over when I can't breathe and the pains are just muscular i might be calmer and panic less ( although I didn't think I was panicking maybe our bodies do it automatically ) and when I get some aids to help around the house I might not be as exhausted all the time ( fingers crossed )
How's u doing today anyway sis ???
take care u x Sonia x
Always bar one had my ABG done that way it started when I exclaimed "oh no blood taking is getting so painful now" I am so happy there are ways round things still.
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Me to ant, it was so easy today after all them painful ones I had done b4, it was the same when my lung collapsed , the 1st time was horrendous it killed me and the pain is still so vivid in my head, so when I had to have it done again 10 days later it was a case of u've got no chance ( think I turned into the exorcist when they told me ) but then the doc said oh it's easier now we have a new thinner pipe and this certain doctor has been trained to do it, ok let's see then, 3 hrs they bleeped for him when no answer he was like oh well I'll have to do it the old way then, Erm I don't think so, u can't say there's a less painful way but u can't have it cuz we can't find the doctor who does it, anyway he was found , and after much pleading and begging off them I eventually had it done again and it was easier, but the first one is so real in my head still I think I've have a meltdown if I ever had to have it again lol. X Sonia x
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that reminds me when I had to have 2 venflons in my arm the junior doctor had 4 painful and unsuccessful attempts in the end I just told her if she does not want me to say unpleasant words to her leave of and get someone more qualified the consultant did it painlessly in less than a couple of secs.
Hi Sonia, Meg and everyone. We'll have to make this three peas in a pod, as I started on amitrptyline jus 48 hours ago. 12.5 mgs morning and evening. My cons says it has very powerful bacteria killing properties and has prescribed it for me because they can no longer identify the bugs I have and need every thing possible to throw at it. Haven't had any side effects so far and all the nurses here say it works really well. If it helps the pain in my neck a d back as well then that will be a huge bonus. Delighted that you've had some positive developments Sonia. Keep well
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Hi argana long time no speak lol, how u doing, seems things are slightly better for u, fingers crossed, I was having a good day to be fair but I must of been really naughty in a past life cuz in the space of the last hour I've had some shitty news, wasn't completely unexpected and explains a lot of what is happening with me and why so quickly but it still p***ed me off and spoilt my ok day, but such is life, and I'll be well happy if the tablets work that good for me too Take care x Sonia x
I haven't been communicating much with anyone Sonia because for eight weeks I had an exacerbation that went on and on and on and I was feeling beyond awful. Been in hospital for two weeks now and am going home tomorrow. Now have four more meds to add to the daily cocktail. Feeling a little better but not jumping up and down. Maybe that will happen for Christmas
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Aww argana u really have had a crappy run recently let's hope theses meds work for u and get and keep u home for Xmas, I'm sending them massive wishes and fingers and toes crossed. Take care u. X Sonia x
Hi Sonia I would have sworn I replied to your post but it isn't here must have replied in my sleep! So glad the assessment was so positive and you are getting some great care and advise. Onwards and upwards, lots and lots of love TAD xxx
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Hi tad don't know whats going on with this site I replied twice to u know and my responses aren't showing up weird, sassy has posted me a reply it's in my inbox but when I click to read it it's not there have sent a message on vashti a post to let her know I'm not ignoring her comment it's not even registered on my post only in my inbox. Right 3rd time lucky, thanks tad and how's u and the family doing lol plz plz send this time x Sonia x
Hi Sonia I would have sworn I replied to your post but it isn't here must have replied in my sleep! So glad the assessment was so positive and you are getting some great care and advise. Onwards and upwards, lots and lots of love TAD xxx
Hi Sonia. Pleased your assessment visit went so well and you gained helpful bits from it. Thank you for the ear lobe info. I'm reasonably newish to all this and had never heard of the test being done that way. With a dlco of 47% I guess its only a matter of time before I need to have one. My brother is having one of these and a LFT at the local hospital this morning as a follow up to recent exacerbations I must let him know. You mentioned the discomfort and rush to get out of the bath...we went to a COPD education day last week and this issue or similar was raised and the reason was given as to the water temp. You probably already know but the water being too hot can cause big problems. Apparently it opens the capillaries makes breathing more difficult and the heart works overtime. So as much as many of us possibly loved big hot bubble baths just warm is better! You must be relieved that your oxygen remained steady during the walk test! Not that that takes away the breathlessness but at least its another problem you dont have to deal with for now. Hope you had a restful nights sleep after your big day. Oh and love big Bruno! Hugs Suz xx
Thanks Suzy, believe me demand the earlobe test the wrist one is so painful, I'm always scared of getting good news with my illness cuz as quick as I have a good day I'm knocked down with several crap ones oh well life is such, we plod on, thanks for the tip on the water I do like it pretty hot to be fair, they never mentioned that today just the pressure on the diagham , keep safe and take care of urself ( and u ur brother ) x Sonia x
Hi Sonia,seems like informative news for you.It,s funny,only had the ear thing done for the first time last time .It seemed to take for ever and blood went all over the place,I still prefer the wrist even though it can be a bit painful,gives me a reason to moan at the doctor lol.Take care now,regards D.
Hi Sonia .... I too am Alpha-1 ZZ. I didn't realise Stockley was still running the research clinic up at QE. I understood funding had stopped. Must try & get up to see him. Cheers.
Hi out to lunch ur the second person whose said that , I had my 1st appointment with him 6th nov my 2nd is the 14th January I did have to sign a research form must have had more funding but why not inform previous patients , strange. Anyway nice to meet another alpha ( us ZZ are pedigree alphas lol ) I've just received a letter from adapt yesterday they did the blood test again just to make sure and the results were , and as the letter read I'm a very severe ZZ, reassuring NOT, oh well new day tomoz, same crap different day. Hope ur well ( as u can anyway ) let me know how u get on if u ring the adapt clinic at QE. Take care x Sonia x
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