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