My"lucky" break

[Stitcher48]

Hello all you wonderful people,I'm so sorry I never got back til now but it took another year of going through he'll before things were addressed, firstly last march/April I had a weeks rest in the hospice ,and it was so lovely and relaxing but didn't really solve anything. Then I got a call in the summer to tell me my care package had been increased to 3 calls a day, but I was still exhausted and carers could hardly get me to wake ,I had a two week stay with pneumonia in the summer which respiratory nurse had missed,I was trying to tell her my sats were dropping every night but she wouldn't listen and after that fortnight in hospital I still felt so awful and still having the same problems at night waking feeling like I'd been smothered and checking my sats I was seeing how low they were and thought my monitor had to be broken that I bought another and had my GP check it against hers. I knew then something was really wrong but felt helpless as I couldn't get anyone to listen to me. Then I awoke one night with the same feeling took my Nov off and was trying to stand to get my nasal specs on when I passed out and ended up breaking a foot and tearing a ligament,I came around with the pain and managed to slide along the floor to emergency oxygen tank as nasal specs were now out of reach. Waited til next day to ring an ambulance and ended up back on the respiratory ward,oxygen levels were dangerously low but somehow co2 was very high. First night I was on regular obs and they caught what I'd been telling them was happening for the past two years actually happening. While asleep on my niv ,they thought I'd crashed and wasn't sleeping but unconscious,my mask wasn't leaking as my Nov nurse kept insisting to me had to be the case for the past 2 years but she had it set too high for me and somehow my airway was collapsing and I wasn't breathing and losing consciousness, so that is why I've been exhausted beyond any description I can give that could convey how bad I've felt and still am as while all this was happening I've developed an antibiotic resistant kidney and urinary tract infection. I've had 2 iron infusions and my niv is back on the setting it was before this new nurse put it on. What is making me particularly angry is that I've been on niv for over 10 years and she was new to the job but refused to consider that she could have made a mistake or that I knew what I was saying to her or that my experience using it for 10 years was worth anything. I informed her that I did not want to be seen by her again and she told I'd have to use a hospital about 45 miles away. She knows I'm on my own and can't drive and I felt she was being so full of spite she even tried to tell me she was the only person trained with niv on the department,which I knew was a falsehood as after 10 years on it I knew all of the team who were trained to work with it as from time to time holidays were covered and roles moved around,she was just putting every obstacle in my way because she did not like me and after 30 years illness that was a first for me and it's really upset me as I really respect the work the NHS does under difficult situations,it's ruined that total faith I had that that the staff always do their utmost for the patient and it's just made me sad and much more sick than I needed to have been. My body was fighting to stay alive while I slept instead of getting the rest I so desperately need,and when your sats are dipping below 50 every night I think you should be having that checked instead of being made to feel like you've made it up. But as it works out I won't have to see her again ,I have never before felt angry with someone who works with the NHS and I just feel so sad that she brought me to having that emotion.

I suppose that's it ,it's going to take time to heal ,the broken bones are well mended but the torn ligament is still very painful,but I do thank god for my"lucky"break as I've come to call it as it finally got the low sats sorted just need to get my limited mobility back again it wasn't great but I miss it. X

[sassy59]

What a truly terrible experience for you Stitcher. It seems to me a certain nurse should be dismissed from her job as she’s not doing her job properly.

I hope things improve for you now, you get all the help you need and people listen to you. Xxxxx

[Stitcher48 in reply to sassy59]

Sassy thankyou,if I had the energy to make an officialternative complaint I would but it's just not worth spending the little bit of energy I have,I was so surprised to get the extra care calls ,but that was arranged before the fall,I think a lovely rheumatologist I'm under arranged it,turns out terrible back pain I've had since my early twenties is chronic arthritis and my spine is in bad shape,he thought I'm a miracle that I'm still walking even with help (rollator) so trendy!! but I've been using one since I was 30 so this year it's been 20 years with various rollator and I've decided to buy myself a Norwegian design one as a major treat this year but I'm needing to sit so often now that I'm getting one that turns from rollator to wheelchair in an instant ,just have to get out of the house and make some friends who'd be willing to push lol. Long story but never got out much more to do with ex than health and now I can go out I blooming well can't, life can be such a.....,but determined to do it and hoping flash rollator will give me a boost literally lol. Just a bit daunting at 50 to go make friends for the first time since I was a kid but I'm tired of feeling lonely and would just love a really good conversation,but a bit scared as my memory is shocking and tomorrow I might not even recall writing today,I'm not sure if it's more brain damage or just the extreme tiredness but that is improving just much more slowly than I'd hoped for. I'm going to try my best to go out tomorrow and get some food into the house,tried ordering online but it was a disaster almost threw my tablet out the window after four attempts and nearly twelve hours over 2 days every time I got to the checkout I ran out of time and the basket was emptied,I gave up then as I can't be replacing the tablet if I threw it out the window in frustration lol,

So going to try to get to Marks and Sparks tomorrow,wouldn't it be great if they delivered,my fridge would always have food in it then. But I'd miss my trips there as the staff know me and always have a minute to chat and always offer help and this year I finally accepted. I've decided it's not giving up to accept help offered it's a way of keeping going and keeping up the fight against this awful disease,although everyone is slightly frightened of the liquid oxygen flasks and the dry ice effect from then,I just say I'm waiting for John Travolta in his Saturday night fever days to turn up lol

[Stitcher48 in reply to Stitcher48]

Sorry predicted txt on my phone is insane ,hope you can translate...oh dear it's really awful,and I always forget to check....lol..good luck with it

[Hidden in reply to Stitcher48]

Hi stitcher. I am so sorry to hear of your problems and really do think that you should get someone to help you make an official complaint about that nurse. She needs stopping before her ignorance and attitude kill someone.

Go into settings on your phone and turn off predicted txt. It will be much better then.xx

[sassy59 in reply to Stitcher48]

I’m good at translating.....lol.

You keep fighting and wishing you all the best. Xxx

[Caspiana]

Hello Stitcher48 . 🍃

I felt so sad reading your post. Unfortunately, this is not the first time I had read of patients not being taken seriously. My dear Stitcher, what an awful time you have had to endure. I just hope and wish you are slowly recuperating and feeling a bit better. Please do let us know how things are going. *HUG* 🌼🌸🌻

Thinking of you,

Cas xx 🌿🌷🌿

[Stitcher48 in reply to Caspiana]

Cassia name thankyou for the huge a sorely missed part of life for me though I do have two very grown up children long left the nest I do get jugs from them,but I spent their lives trying so hard not to let my health impact their lives I don't think they realise that I need a little bit of help now and I'm too proud for my own good to have them understand how bad things have got. I coped so well for so long even after the type 2 respiratory failures when thinks looked very bleak ,I always bounced back but I think having infection now for almost 3 years and it's resistant to oral antibiotics and I've had terrible reaction to cipro which was always great in the past but I've had tendinitis twice with it so it can't be given anymore although funnily it's not my chest that's giving me trouble but my kidneys ,infection started in my chest and I believe because I was so exhausted it managed to take hold in my kidneys and there's so much pain with it but I have lost a lot of weight which is the silver lining,almost just one chin now lol.I think I'm having the "poor me"s" right now and hoping once my energy levels improve and I get my lighter weight flash rollator I'll be out and about,just all these years fighting chest infections and nurse that wouldn't listen it's a kidney infection that has floored me. I've been through every test and consultant has said there's nothing can be done as it's resistant bug,but it's been in the kidneys nearly two years and the longest break I had between antibiotic courses was 10 days and nearly a year since the second tendinitis and it's still very painful,but the muscles in my arms look like body builders but the pain is the thing. Just layers of pain in my body each part different and differvent severity.

I made it to 50 last year and saw my beautiful daughter married,I'd like to be around to see my son gain his degree,my health and family matters caused him to drop out of uni and I carry so much guilt about that. After my dad died just weeks later my ex walked out but he was never there anyway but the grief of losing my dad I wasn't on top of things as I usually would and let pneumonia go too far as I didn't even realise I had it til it was nearly too late and kids were called to hospital and told to prepare that I wouldn't make it but I must have fought like a tiger for after they were told I just had 3 hours to live I actually made it home in less than two weeks and four of those days I was in a coma in icu. Couldn't walk for 9 days as soon as I could I was back home but frightened and determined too. It's been tough few years but also tough 32 years but my kids have achieved so much and I'm so proud of them because it was hard for them too. My wee boy was very ill his first few years and my daughter didn't know where she was as relatives looked after her so I could stay in the hospital with him. I feel ill every time I pass that building it has so many memories good and bad. I really am having the poor message I'm so sorry I never was like this always could find the bright side just I think the pain is making it difficult. Thankyou for the hug an do sending back a huge hug for you for your kind words.

[Stitcher48 in reply to Stitcher48]

At least predicted txt and my painfully unmoving thumbs might give you a smile as you try to translate what I've just written..my phone is as big a crock as me and likes to do its own thing lol 😭😃😂😅

[kathbrad3 in reply to Stitcher48]

Hope your soon feeling better

[Caspiana in reply to Stitcher48]

No problem at all. I understood everything just fine. Another big *HUG* to you today. Tell your kids you need them. Sometimes, they just need to hear it. Please do keep us updated on how you are. Thinking of you. xx 🙋🐕

[Hidden]

How dreadful Stitcher. Words fail me. I think maybe a copy of what you have written should be sent in as a complaint. Listening to the patient should be the first thing they do. I had a bad experience with a nurse once and it took a huge effort not to let that wipe out all the good ones. Wish you a speedy recovery.

[Whitechinchilla]

What a dreadful, stressful and totally un necessary state of affairs that you have had to deal with. I can only sympathise with you and trust that your health continues to improve.

That said, I really feel you must make a complaint. You have the means to help someone else being treated the same way by that nurse. From what I have read I would say she needs to be struck off the nursing register.

No patient should have to experience what you have been through.

I know from experience that it is incredibly stressful to make a formal complaint.

You cannot change what happened to you but you could make a huge difference to someone else’s life.

With very good wishes.

[shouty]

What a going on. If memory serves if you give someone too high Oxygen then it fools the centre in the brain into thinking it doesn't need to bother which is why it is so dangerous then CO2 gets high & can poison you. Sometimes the best intentioned 'I am trained so I know best ' practioners need to listen to the patient as they know their body & the disease

[Izb1]

So sorry to hear of these dreadful situations you have found yourself in and I agree with the people that have replied advising you to take this further, if you feel too weak to do this yourself perhaps one of your children can take this up on your behalf. This person has no right to continue in that profession and must be made to face up to the consequences. Take good care of yourself, you need lots of tlc after what you have been through, keep us updated. Irene xx