Harefield Hospital. Review

[2malinka]

Hi everyone,

Went to Harefield Hospital for a NIPPY review. I have severe COPD, on 1 litre oxygen and borderline CO2 retention. Several months ago, I was given a Bi-Pap machine (Positive Airways Pressure) The idea is that this machine keeps your airwaves open at the correct level while you sleep. The good news is that it has sorted the CO2 retention but I still can't sleep. Despite sleeping pills and now Lorazepam, I average about 3 hours of light sleep a night. I have now been subscribed stronger sleeping pills. Oh well. If I could just get a decent night's sleep I would be ecstatic! I was also informed that my lungs had small holes as opposed to large holes ,so therefore would not be a candidate for LVR surgery. However, I was also informed that I was more fortunate to have the smaller holes! Go figure. In order for me to qualify for one of those 'coil' or 'valve' procedures I would need a FEV of at least 20%. Well, my last reading was a feeble 14% but I am to have another lung function test sometime in January and if my FEV increases to the required level, I may be considered for the coils or whatever. Failing that, the only other option is a lung transplant which, I feel is unlikely as I am 65. I did ask the consultant why does the NHS wait until COPD patients are practically at death's door before they take any action?

Thank you those who have read this rant.

Look after yourselves and stay warm.

Malinka

[jimmyw123]

Hi malinka,

i feel for you terribly, as i know what you are going through, and sincerely wish you well.

i am wondering if you are on steroids as these can keep you awake, at least they do with me.[but i'm sure you would be aware of this ]

But you certainly strike a cord with "why does the nhs wait until copd patients are practically at deaths door "??

Strangely enough i asked the same question !!, After a lot of , "going round in circles " it was like a politicians answer [no answer, really "

did you get an answer ? [i would surmise no ]

i can only offer my sincere wishes for you,, and pray that things improve for you

I send my warmest wishes

With lots of love

jimmy xxx

[2malinka in reply to jimmyw123]

Hi Jimmy

Thanks for replying. I only use steroids if get an exacerbation. Otherwise just minute doses contained in symbicourt. I did work nights for three years back In the 80's and I wonder if that messed up my sleep patterns. The drs never have an answer, I think it is because they know that

[2malinka in reply to 2malinka]

..sorry don't know what happened there..'they know there is no cure for this horrible illness. Still I am hoping that the next lung function test will see improvements. Oh well, I am still here and hope to be for some time just to give the medics a challenge.

Hope you are feeling better.

Take care

Malinka

[jimmyw123 in reply to 2malinka]

Hi malinka,

Yes it is one horrible illness, but were still here to give these medics a challenge,,,, who knows they might just come up with something sometime, ? [they can fly to the moon ] we can always live in hope and we can always dream malinka, but in saying that "dreams and hope " can keep us going .

lets hope your next lung function tests show an improvement.

lots of love jimmy xxx

[2malinka]

Thanks so much, Jimmy. You have cheered me up a bit. I see that you have stage 4 COPD, mine was called 'end stage' and then quickly amended to severe. I think the medics have to be a little more tactful these days.

Look after yourself. Once again thank you for your words of encouragement.

Malinka

[Billiejean_2]

I'm glad they've prescribed you a stronger sleeping pill for you Malinka. Some doctors make a huge fuss about respiratory patients using sleeping pills, as they supress respirations. But not being able to sleep is such a misery and I'm quite sure makes existing illness worse and harder to cope with.

When you start getting some sleep and have a little more energy, then hopefully you might be able to work harder at getting your lung function up a bit.

[2malinka in reply to Billiejean_2]

Hi Billiejean

Thank you so much for your words of encouragement. Being sleep deprived and having this revolting illness can be really wearying. I always make myself exercise, lifting weights, a little yoga and even walking around the house but outside, I am virtually wheelchair bound. So it would be great if I could improve my lung function and so receive some kind of treatment.

Oh well. Nearly Christmas, something to look forward to.

Hope you are keeping well.

Thanks again.

Malinka