Losing weight and much more.

[70michael]

Hi there l forgot to add that l have Bronchiectasis and copd and am on oxygen min 16 hours but l find l am on it for most of the day and all through the night.

[Patk1]

Hello 70michael.ive read Yr previous update.life sounds hard at the min.if u suspect sjorgens,ask specifically to be tested.having bronchiectasis,copd and on 02 will all use more fluid + dry mouth& throat.id make a determined effort to drink more clear fluids. PUlmonary rehab recommend eating more high calorie foods, have some treats egproper butter,cream cake, etc to increase calories.perhsps eat a little often.ru prescribed food supplements eg build up,fresubin - if not u should ask gp to prescribe them. I'd ask Dr to refer you for for palliative care so you can receive more support moving forwards x

[70michael in reply to Patk1]

Thank you for your reply. Would l be able to get palliative care even though l am not terminal? It would be good if l could. I have lost my appetite and find it hard to swallow all but drinks and really soft foods.

[Patk1 in reply to 70michael]

Yes,it would help u to live better,with support

[Karenanne61 in reply to 70michael]

Palliative care is NOT just for terminal patients, it'sfor those with chronic conditions. . I attend our local hospice at the moment for one day a week. Surprisingly it's very enjoyable!

[Biker88]

Let’s not confuse palliative care with end of life care, both distinctively different but always mixed up. Palliative means a progressive disease with no cure, and the disease is managed to give the best life possible rather than trying to cure. End of life as as it says, you can be palliative for years before you get onto the last stages when end of life care starts. I was referred to a hospice a few years back and have a lot of friends who like me are all palliative. I am under the hospital dietitian and have high calorie supplements on prescription along with with NHS diet for putting on weight. Unfortunately with current funding for the NHS and hospices palliative care is sadly lacking

[Emerald52]

I agree with Biker88. Palliative care can help you get the help you need. Nearly 2 years ago I came down with 1 of the many viruses going round and ended up in hospital. To cut a long story short , they were very busy at that time and didnt notice that I wasnt eating and getting worse. I have severe emphysema. Ive got no memory of loseing conciousness and woke up in ICU. They had called my family and didnt think I was going to make it. What had happened was that the nurses kept turning my oxygen up and turns out Im a co2 retainer.So was in hospital for over a month. 1 week of that just to be able to walk again. Thats when I first had palliative involvment. When I went home they made sure I had visits from the physiotherapists etc. Ive never been quite the same since then and still battle to eat properly. I see palliative Dr about every 3 months now and she makes sure Ive got the right medication etc. Sorry this is so long but I just want to emphasise the importance of getting help when you need it. TAKE CARE.

[peege in reply to Emerald52]

Not long Emeralds, all very useful information that can help anyone in a similar situation. I really hope that you can slowly rebuild to your previous normal. It can take a while especially after such a difficult episode in your life. Just a pity that the CO retention wasn't discovered earlier. You take care too 💐 ×

[Emerald52 in reply to peege]

Thanks peege.