Eventful night

Hello it's winger again or at least that's maybe what I should be called.I went up to toilet last night and my heartbeat went to 136 frightening .when I came down it was staying in 120 s .At about 10.30 my husband was ready for bed I reluctantly agreed but when I stood up heart rate went back into the 130 s so we waited and at about midnight phoned 111 for advice they said they would be sending someone out they came 2.30 am by then rate had dropped but was still in 120 s when stood up .They said I was tachycardia and a bit of damage on both ventricles my sats also dropped into the 70s before they came .They said they were not worried they could take me to a@e but would probably have a 4hour wait or phone gp this morning which hubby did he came out and was surprised I still did not have portable oxygen to get out he said anxiety coffee even decaf and blue inhaler where part of the problem .He advised me to have counselling and to go to one life for check up easier said than done without oxygen .I hope and pray I get some when respiratory nurse comes Friday or I fear I will crack .My husband had a part time job which he enjoyed kept him physically and mentally fit he has just told them he can't do it anymore I so sad for him and guilt ridden we will have to tighten our belts money wise wish I didn't need to have heating on so much well thanks for letting me have a moan it seems it is all I do but honestly don't know what to do x

19 Replies

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  • Hello Time_2_drink, l do hope you get the much needed oxygen and help. Please don't feel guilty as l am sure your husband will be happy to be by your side. I gave up work to care for Pete and have never regretted it. Do take care. Xxxxxx

  • Thank you sassy x

  • This is bonkers Time_to_drink. I feel really upset for you. You have been kept prisoner in your own home due to no portable oxygen. Your health people should be ashamed of themselves. It's true that all those things you doc mentioned can raise your heart rate, but so too can having too low an oxygen prescription (just a comment, not saying this is what's causing it). I don't see why you should have to wait until the end of the week to see there respiratory nurse. Could you phone her/him and ask for your HOOF (home oxygen order form) to be changed asap to include portable oxygen? If you want to talk it through call the BLF helpline (03000 030 555 office hours) and tell them about your situation. No-one should have to be trapped like you currently are.

    The counselling is a good idea by the way - Ive done it and it was very helpful. Can your doctor not refer you for this?

    And please take note of Sassy's lovely message - don't feel guilty, this is just another phase of your journey together. Take care.

  • I'm hoping when and if please when I get portable oxygen then will get counselling and be able to cope better and my husband will benefit to feel like I'm trapping him

  • Two great replies there, Time 2 drink. It must have been frightening for you, and I do hope this week will see some changes which make life easier for you and mean you're more in control.

    I won't repeat what sassy and O2Trees have said, but they're right. And you're not moaning. You don't feel well and it's scarey.

    Take care,

    Love, Sue x

  • Thanks sue I hope your kind words come true I feel isolated and not in control at moment hope I can get to grips with things I still think I'm in a bad dream then I see I am attached to a lead x

  • Hi Time_to_drink, I cant believe that you don't have portable cylinders, I was lucky enough that eveything was in place for me coming out of hospital, i was given 2 portable cylinder and a emergency cylinder incase of power cuts , I would definitely contact who ever arrange for the home oxygen for you, I now phone the oxygen people direct if i need new cylinders or nasal cannulas . I am with dolby vivisol and they are excellent service.

    No wonder that you are feeling down. They should have had everything in place for you.

    I hope that you get everything sorted out quickly and you might start to feel better.

    Wishing you both well

    Loraine x

  • I am seeing respiratory nurse on Friday so hope something will be sorted I hope I get some but my stats all over how often do you get your oxygen and how long does it last please x

  • Hi, time_2_drink,

    Im sorry I have taken so long to get back to you, I was at doctors yesterday and I was shattered with not sleeping and in so much pain at the moment.

    The cylinders have a dial on the side of them showing how much you have used , it depends on how offten you use them and how many litres you are on average 4-7 hours each cylinder

    When I am running low on my cylinders my partner just phones and they deliver full ones within a couple of days depends on how busy they are. I have had a excellent service from them, I dont go out much at the moment with the weather so I am not using to much of the portable cylinders but i have had about 4 deliverys since I got them .

    I hope you get yours soon and then you will be able to get out and about, it takes time getting used to having the oxygen but it gets easier the more you are able to get organised to go out .

    Good luck on Friday but couldnt you phone them before maybe they dont realise that you dont have portable cylinders and they can deliver them before Friday then you can maybe get out at the weekend.

    I know somtimes it depends where you live and what local authority you are under although this should not make a difference but often it does.

    All the best take care

    Loraine x

  • Thank you Lorraine I hope you are feeling a bit better now on tenterhooks waiting for nurse I had a bath last night and rather than come down stairs again it shatters me I stayed up it was a long night with about 2hours sleep and up at 7 to make sure I ready for nurse .I hope you managed some sleep I wish I was coping better but not managing it yet best wishes xx

  • Your not moaning that's what all of as are here for to listen and give support. very frighting hope you feel better soon x

  • I hope your tachycardia has improved such a horrible feeling. Surely if they say you need oxygen then you should get it asap. Do hope everything gets sorted out soon xx

  • I hope so being trapped in is not helping me I know I will still be tied to the oxygen like I am at home but maybe I will feel a bit freer I am definitely not coping thank you for your kind message x

  • I do hope you get your ambulatory oxygen, it has changed my world, I have a little trolley which I pull around all the time even indoors except when sitting down I have got home oxygen but cant have flowing tubes everywhere because hubby cant see and would fall over them.

    I love going out with my oxygen, people smile at you and people help a lot more in shops I went with my daughter for a meal at Wagamamas (Asian + Japanese) they let us reserve when we told them I was on oxygen and would need room for my trolley.

    I put the trolley behind my seat in the car and feed the tube through the headrest so I can use it if I need it when driving.

    So you see oxygen is not all bad :-)

    take care

    polly xx

  • Thank you polly so glad that you have positive thinking send me some lol hope your meal was lovely .I do wish I had learnt to drive .keeping fingers crossed for Friday although also scared of what tests will show my stats are falling to 80 when walking sometimes that's on oxygen so I reckon it's wheelchair for me when I can get out x

  • Loads of positive thoughts winging there way to you. My sats drop to 84/82 when sitting without oxygen so I would think much lower when moving around I have not tested it lately might have a go but I am sure it is much lower than 80 and the oxygen helps keep it up, I still puff and blow but take it easy will be interesting to see how you get on, please keep in touch.

    take care

    polly xx

  • Thank you polly will keep in touch if that OK xx

  • I hope you get everything you need and hopefully your hubby can go back to work. Can I just ask, you mentioned the blue inhaler makes your heart beat faster.....I'm wondering if that's my problem and it's not all down to my anxiety ?? I wish you well xx

  • Thank you yes I was told it could make heart beat faster and not to use it to much although I never thought that I did this anxiety is crippling isn't it xx

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