Bad News

Just got letter from hospital which had been sent to my doctors saying that I was being treated for type 2 respitary failure and probable right lower lobe community acquired pneumonia on zBpap for respirotary acidosis they said that they hadn't arranged follow up in clinic because I was still an inpatient letter posted 25 Jan dictatedv12 jan .I am so scared now I know this is it .My husband doesn't know yet he is at work and I didn't want to tell him on the phone how do I tell him .I can't tell my son yet he worried already and also he is at his own home Thank you for letting me share I have had no word from my doctors maybe I should go to hospital and let them do whatever but the thought of going on ventilator or havingtrachotemy scares me I am so frightened of what is going to happen and how long once again thank you

34 Replies

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  • I am so sorry you have had this news. It is very worrying for you all. I went back and read your previous posts. It has been very difficult for you. I am a bit puzzled about your being an inpatient when you are at home. Is this because you discharged yourself and no one has noticed that you are not on the ward any more? Do you have a good GP? S/he might be crucial to untangling it. I am also a believer in knowing the truth, even when it is not good. For me --- and I know not eivetyone has the same attitude --- I would always rather know. Once you have the facts then you know what you are dealing with. You must tell your family as soon as possible. They too need to know, and you cannot sit on it on your own. They too will be worried and possibly trying to hide their worry from you. It gets so tangled when we try to protect others.

    Tell us how things develop

    K x

  • It seems that they forgot I left the hospital my gp has been no use he was talking about weaning me of oxygen believe it or not I will have to tell my husband when he comes home I guess I won't be getting that ruby ring now oh what a stupid thing to say sad to be leaving him can't even cry

  • Who said anything about leaving? Has anyone given you a prognosis? You really, really must get a proper consultation with the hospital guys. And use another GP? If you are still --- technically --- an inpatient you can go back and have a proper session with a doctor. Maybe slip your jammies on in the loo for authenticity? That's a joke, of course.

  • Hello T2d. I am very concerned that you are so worried and distressed. I have read your post very carefully. The type II respiratory failure means that you have low oxygen and retain CO2 in your body. The pneumonia seems to be having ongoing treatment with antibiotics and although it is vile it should eventually be cleared up. The bpap machine is to give you pressurised air at night to help your breathing and intake of oxygen to your lungs. The fact that it is bipap rather than cpap is because the flow of the bpap machine can be adjusted to make it easier for you to breathe out against the flow. I am wondering if they gave you one of these to use when you were in hospital or are now telling your GP that you will need one. It is not a ventilator and is not invasive. You wear a mask at night.

    I suggest that you go to your GP to go over the letter.Knowing how my hospital letters get delayed I suspect that this one was typed up and sent out from the hospital after you had left. Your GP can take you through it and you can decide together which way to go. You may need further antibiotic treatment to clear up the pneumonia. From your previous posts it was evident that you had a bad infection. I remember those symptoms so well from two years ago when I had community aquired pneumonia.

    You do need support to help you manage your worries and your condition. Your husband needs to see the letter and accompany you o the doctor so that you are both clear as to the way forward.

    Having pneumonia on top of an underlying lung condition is an awful thing to have to cope with and can make a person feel very depressed and doom laden. I do feel that it will not turn out to be as bad in the long term as you presently think it is. Once the pneumonia is cleared up and you have treatment for your lung condition you should be able to see the way forward and feel more hopeful.

    xx

  • I was on the mask while in hospital a couple of times .The letter was taped 15 days after I left posted 12,days after that then I got it 6 days later i been looking it up on net and all prognosis for type 2 not good .I will have to call doctor out or maybe go to hospital don't have portable oxygen

  • yes, the progress of the letter seems pretty typical to me. Now you know that you shouldn't be looking up these things on the internet. There is a lot of frightening rubbish out there. With lifelong severe bronch I should have been a gonner by the time I was 30. I am 66 and still kicking!

    I am sure that there are quite a few type IIs on here and also CO2 retainers who lead very good lives. It would be nice if some of those could see your posts and reassure you.

    Get to the docs who wrote the letter and get a plan for the way forward.

  • Many of our member have a diagnosis of type 2 respiratory failure. It is not a death sentence and does not always mean using oxygen. You need to discuss this further with your GP.

  • Hi, you really explain that well, I was on by pap machines a few times last year, and I didnt understand the type 2 respiratory failure that was written on my first discharge papers and just like you have explained that it a less invasive but breathing for you .

  • I'm glad that helped. There are quite a few people on here who have type II and also use the bipap machine and I am sure that they lnow much more than I do.

  • Thinking of you at what must be a very difficult time. What a lovely reply from Katinka and do please tell your husband and family as soon as you can. Bless you. Xxxx

  • Thank youn

  • I know I will have to so hard though

  • I have just read that you have no confidence in your GP. If that is the case waste no more time on him and insist on seeing a doctor at the surgery who has an interest in lung conditions.

  • Do you have a consultant at the hospitla? If so, ring their secretary and tell her that you are so frightened and confused. Insist that you see your consultant to get it sorted out with the expert. Oh how I wish that I could come with you!

  • No the letter was to refer me to consultant but they thought I still in hospital

  • Right then. You need a swift referral and appointment with a consultant. But do check up in the meantime that the pneumonia has had enough treatment and is clearing up.

  • Will either get husband to phone GPs tomorrow see if they do referrals or phone nhs for advice I'm muddled up

  • It's no wonder that you are muddled up. Nothing has been explained to you properly and you were given a letter which is out of date and contains worrying information which was not discussed with you in hospital. It really isn't fair when they do this to us because stress, worry and unnecessary fear are the last things which we need for our health's sake. Remember you have pneumonia which does need peace and rest to get better as well as drugs.

    Try to relax a bit and focus on getting the right information, an appointment with the consultant and then the right treatment and management.

    I am thinking about you.xx

  • I had respiratory faliure four years ago, but once out of hospital,I'm fine now. Please don't give up hope. Love Bernadette 😊 xxx

  • Which type did you have was it 1or2

  • Sorry to hear you bad news we are ALL here for you.xxxx

  • Thank you all I have told my husband he is devastated we don't know which way to turn

  • Read what everyone has said to you. This isn't as bad as you think. 🙂 x

  • Good reasons why it's not usually a good idea to discharge yourself from hospital. I agree with the others and hope you get it sorted soon. x

  • I'm responding to Stillstanding's summons! I had respiratory failure in 2014 and have had a BiPAP mask and machine ever since, at first with oxygen. I haven't needed it for over a year. What it does is help you clear the CO2 which some people with COPD can't breath out. It's basically a poison and makes you feel awful - headache, no energy, ill.

    There are people here who've used a BiPAP machine for a lot longer - one I know for 8 years. It just means wearing a mask at night. You get used to it. It isn't the end of the road at all, in fact I've felt a lot better since I' ve had it.

    GPS can refer to consultants, or you could try phoning the ward you were on and asking if the consultant who's care you were under could see you as soon as possible. A bit cheeky!

    And the lung infection needs clearing up. Then we'll be dancing on the tables!

    Take care, love Sue x

  • Thanks sue I hope it is true my throat started to close up just now and I panicked I'm glad you feel better

  • fab answer Sue. A personal experience always helps. So pleased to hear that you are keeping well

  • I was diagnosed this myself and i know it sounds terrifying but please dont panic,,, With oxygen and the use of a bpap machine they will settle it for you and once they do you will feel much better

  • I hope and pray you are right did you have type 2

  • Yes same as you and i was put on oxygen and i used a nippy machine

  • What's a nippy machine mandy

  • Its an NIV ( none invasive ventilation) machine or Bpap ,, Its used to get c02 down ,, its just a small machine with a mask that you wear during sleep

  • Hello Time_2_drink . I am so sorry you have had distressing news. I cannot really add more to what people have already said except there is a lot of power in knowledge and that articles on the internet are often the worse case scenario. Get the facts from a reliable doctor and maybe two just to be sure. Take care and please let us know what happens.

    Lots of love to you.

    Cas xx 🌹

  • Thank you I will try and take on board what you said

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