Hi, I used to use the BLF community where I found a lot of advice and comfort as I have been speaking to a few people about my Nan's condition, having COPD, and coping with it.
I'm hoping that a few people that used the old site will have come over to this one, I will post their names to see if they still use them, as well as my first message to see if anyone remember's me and my post.
""I just thought I would come on here and get some advice and comfort as I've been looking round and there are so many people going through the same thing as me and my family. I am 19 years old, the oldest grandchild of 6 and therefore I do a lot for my nan and grandad and I am very close to my nan in particular.
My nan was diagnosed with COPD - emphsemya - around 11 years ago. Over this time she has gradually gotten worse, more so over the last 2 or 3 years. At first she could carry on doing everything she used to do, work, cook, clean and go out with friends and family. But slowly she has got worse over 3 years so now she is house bound, uses a NIV at night, uses nebulisers 4 times a day and takes a large variety of medication to help her. Last Thursday, 19th May she was taken into hospital by ambulance as when she came off the NIV machine she couldnt get her breath, started to sway and her lips were blue and she had a terrible lower back pain that she had never experienced before, she was taken to the resustation room at hospital where they gave her a steriod drip and antibiotics as well as chest xrays whist she had about 4 nebulisers to help her breathing and the doctors monitored her.
The whole time she just held onto my hand with both of hers and I stood there and felt so helpless. A few hours later she was put on a ward in a side room and a doctor came to see her and my grandad. When my grandad came from the room he was fine, although he was upset at seeing my nan this way (they have been married for 50 years, so they really are soulmates) we said good bye to nan and went home as it wasnt visiting time so we had to go home. As soon as we got outside the ward my grandad broke down sobbing, which was so hard to see as I have never seen him cry before; once he composed himself he told us that the doctor had said to my nan that there was nothing more that they could do for her and it was a matter of time and making her comfortable because she might not go home again. We went home and later went back to the hospital for visiting hours to find that they had put nan back on the ward.
She didnt say anything about what the doctor had said, and neither did my grandad, we just sat and talked to her whilst she sat there on her NIV machine, so she wasnt talking back to us, but she held our hands and tried to be strong but in hy heart I know she is so tired. Her lungs were a very low capacity but now they have almost stopped working. They kept her in hospital for a week and she came home on Tuesday 24th May, something that I didnt think would happen if I am honest, when she went in on thursday last week. She is still really breathless and struggling with her breathing but they let her home as they have said to her she has approx 6 months, and she could have stayed in hospital for this time or to go home.
Our family are the type that hear some news but when we get home we never talk about it, we just go on with our day, but we all know that she is really not well, I'm strong in front of my nan, but as soon as I get home all I want to do is cry, but I cant talk to my close family about this and my friends dont understand what she is going through. Which is why I came here as I hope someone will be able to give me some advice or just have a chat with someone. Sorry this post is so long but my heads full of things I guess I just need to get out.
I posted that last year, with the same user name that I have now, I spoke with a few people, I hope that people will remember me and I can still speak with them.
Hope you get in touch soon