Benjie-123 ASKING FOR HELP WITH pf

[Benjie-123]

I have just written a post, but lost it somewhere! My husband has pf and Parkinsons. For the past four months his health has deteriorated considerably. He has crippling weakness, sleeps more then he is awake and is getting depressed. He says he thinks he is dying. He is not a bad patient and generally does not complain a lot, but the lack of ability to do ANYTHING is getting to him. He was diagnosed with PD 2008 and pulmonary fibrosis end 2010. He is on portable oxygen as and when, and 15 hour lower dose during the night. Because he has both of these illnesses, it is hard for me to know which of the two is causing the terrible exhaustion/weakness. There seems to be no help out there for the pf, apart from oxygen (and maybe that is how it IS) but the Hospice are brilliant for chat support and therapy such as painting, t'ai chi etc. He was unable to copy with the latter two. They also keep an eye on his progress... or decline and ring me with advice etc. Anyone got clues re the weakness side of things?

[Biddy_ALUK Partner British Lung Foundation]

Hello Benjie-123

You know if you want to speak to one of our respiratory nurses here on the Helpline you can call us. They can offer support, and advise on medication, management and symptoms and generally living with a lung condition. Please do give us a call rather than struggle with unanswered questions, 03000 030 555.

Best regards,

Biddy

BLF Adviser

[Hidden]

Hi sorry I can't help but just wanted you to know I have seen your post. I hope you get it sorted very soon. Take care. x

[Benjie-123 in reply to Hidden]

to coughalot1.... Many thanks for your reply...it's great to have someone answer

even if there's no solution. Will put a post in if I here anything useful. Best wishes x

[Hidden]

You are welcome Benjie. I hate it when I put a post up and no one answers! It's just nice to be acknowledged isn't it? It would be good if you can let us know how you get on please. x

[Colours23]

I do hope you get some more help ,I'm sure you will,good luck.

[Colours23]

I do hope you get some more help ,I'm sure you will,good luck.

[pollyjj]

Hi Benjie, I would be interested to hear what you find out, I am sort of in the same situation, got over chest infection, but got no energy, so tired all the time..

polly xx

[Brishe1]

Hello, my husband has emphysema and ambulatory oxygen and Parkinson's. I have some idea what you are going through! You mention the hospice which must be a great support and as an ex nurse I can only strongly advise you to take any help you can get for your sake as well as your husbands. Believe me they will not think you are a nuisance.

[Benjie-123]

Many thanks to Coughalot1, Colours23, Pollyjj and Brishe1 for replying to my post. The Lung Foundation said to contact them (which I just have) and am waiting for reply. Very grateful for all contacts.

[Benjie-123 in reply to Benjie-123]

The Lung foundation said my husband should have another oxygen assessment asap

as his oxygen levels may have fallen too low, plus his body may be retaining the carbon side of the oxygen which would make him extremely weak/overtired. I may have got facts a little askew -my chemistry is NOT good! Seeing GP this Friday for referral to hospital. Will post what happens thereafter.

[IPFsufferer]

You should NOT have to wait until Friday. Here in the Cheshire area I can ring my Respiratory Nurses anytime to get their advise and if they think I have got worse thy will arrange to see me immediately to check my oxygen needs. I had my dose increased within 3 hours including the time for Air Liquide to deliver the new concentrators.......

[Benjie-123 in reply to IPFsufferer]

Very many thanks to IPF sufferer...I will call respiratory nurse tomorrow (not been on computer for two days) and see if I can get the same help as yourself. Sounds more common sense anyway, having read up on effects of low oxygen. The gap between seeing Doc and getting to hospital here would be ages... Not good, so again, many thanks. J

[Benjie-123]

I am the person who submitted the above post some time ago...husband having Parkinsons and Pulmonary fibrosis. He is deteriorating day by day and have been trying since before Christmas to get an earlier appointment with Consultant (advised by Hospice to do this). Been told also that he needs to see a neurologist. GP wrote to hospital as requested (a month ago) but earliest appointment is...late February. I have been reading up on stuff... like we all do I guess and wonder if he has pulmonary arterial hypertension, which is not good news. Suppose Consultants and GP's hate us 'investigators' but what else to do?? any ideas anyone. Sorry to sound like a 'moaning joan'. Oh also no sign of a Neurologist.... I have to sort that out when I find out who suggested this. ha ha.