nannytickle

[Jackietickle]

hi everyone

I was diagnosed with idiopathic obliterative bronchiolitis type 2 respratory failure about 10 years ago and have been on home oxygen first for 16 hours a day but increased to 24 hours over the last 4 years or so. I was under the care of Kings College hospital and provided with an NIV machine which I used every night whilst sleeping. Unfortunately my husband died at the end of 2022 and my health has worsened considerably since then. My son moved me into his house as I was unable to look after myself and between Jan and March 2023 was admitted to Maidstone hospital on three separate occasions.

They found the problem was that my CO2 levels were very high and after consultation with my Kings team it was decided that I would have to go on the NIV for two hours in the morning and two hours in the afternoon as well as using it all night.

The consultant came to see me one day and said they couldn’t get my co2 levels down enough so there was nothing else they could do for me. He said they wouldn’t even bother to take my blood gases any more as there was no point because they were always too high so there was no point. He also told me that I only had between 4 and 7 months! I had nobody with me and when I told my children they could not believe it. My son kept saying to me that the doctors do not know how long I have and that I should ignore it and be positive. Easier said than done as I did not even think I would be here for Christmas so I left everything to the last minute because I thought there was no point . However, he told me that in April last year and I’m still here. Still don’t know what my blood gases are because they won’t check them! How will they know if they’re getting better?

Had a bit of a problem today though. I have been staying with my daughter for a week and when I hooked up my machine this afternoon it was coming up with error code saying to check pier!

Of course it is a Sunday! I spent about 2 hours on the phone just trying to find out what I should do but just kept getting answer machines saying they were closed until Monday. My kids have done everything they can to try to fix the problem - but they couldn’t get it working. I am now too scared to go to sleep as I know I will build up my CO2 without the NIV. I also keep trying to go without oxygen as long as I can to avoid it rising that way. I’m so scared of going back to how I felt last time - I don’t want to go back to hospital again when I just need my machine. I’ve a feeling they’re not going to get it fixed - does anyone know how long I can go without NIV before the CO2 comes to get me again? I can’t believe there is not an emergency number to call if this vital bit of machinery decides to stop working on a weekend! Anybody else had this problem?

Sorry for the long message but feeling quite anxious

[sassy59]

Goodness me Jackietickle that’s deplorable! You should have a number to call at all times plus no consultant should visit you and give such devastating news whilst you’re alone. How insensitive. Doctors don’t know how long you have to live as you’ve already proved.

I hope you do get your NIV machine repaired and that things improve for you.

Best wishes. Xxx❤️

[Hazel-mary]

I hope you get your machine sorted today, they really should give you a number to be able to get hold of someone at weekends and nights. Xx

[Alberta56]

I can only sympathise, both on account of the failure of your machine and even more because of the crass behaviour of the doctor. What a heartless man- to tell you that you are going to die and to do it when you are alone. Also stupid, since he told you the same thing a year ago. I hope you can prove him totally wrong. Your son is right. Very best wishes. xxx

[Nula2]

Hi Jackie, what a lot to deal with! There should be rules about not telling people things like that (unless they ask). It must be to do with statistics and an average figure. Hope you get your machine working asap🤞❤️xxx

[Germantara]

I hope you get sorted what a distressing time for you you should be able to contact and speak to someone and as for some docters or consultants there communication and sesatvity skills are abborant they forget as they age there get health issues they talk to peaple disrespectfully and no one knows how long I was told my mother had 3 months then they had a nerve to tell me 6 months when I said are you sure they said oo yes definitely hospital would ring early hours off morning 2 or 3 saying time for you're mam very near guess what my mother lived 16 years so don't take there word for anything I'm sure you will know by you're owen instinct

[sunshineday]

So sorry Jackietickle about all your problems and hope now that we are in the working week you are having some success with help with your machine. What a shoddy service from the machine company, why do companies think just because it's the weekend nothing will go wrong!!! As for the consultant he should be ashamed of himself for being so thoughtless. As many have said on here no-one knows the time and date of our passing, just keep taking a day at a time and remember everyone on here is sending lots of positive thoughts to you. Thinking of you. Joy xx

[Ergendl]

Appalled at the way you were given that information. Hoping you've managed to get hold of someone to fix the NIV machine now.

[Izb1]

I hope by now your machine is fixed and you have made a report to say how they have a duty of care which they have neglected. Ring 111 if this happens again. What a state our country is in, I cant believe how often the hospitals now discharge people saying there is nothing more we can do for you. Thjpis has happened to me and i decided to take it further. I will write a post soon on this. Dont give up and try to look after yourself as much as you can or get your family to help x