Anyone with experience of Pulmonary Fibrosis?

Bernard LPG · 9th August 2009, 14:33

Unfortunately my wife has been belatedly diagnosed with this after being treated mistakenly for Asthma. It has lead to a heart attack due to oxygen starvation and she now is back home but connected to an oxygen supply for 16 hours per day.
I wondered if anyone here has had experience of this and what measures you have taken to at least make the best out of life?

Raistlin · 9th August 2009, 14:41

No experience of this Bernard but Marion and I are saddened beyond words to hear this news.

Anything we can do to help, just say.

JohnDotCom · 9th August 2009, 14:44

Sorry to hear of your sad news, I hope she can improve quickly and require less use of the Oxygen very soon.
My Uncle had a Lung transplant which helped enormously.

Have a read here:
http://pulmonaryfibrosis.org/ipf.htm

GreyGhost · 9th August 2009, 14:57

As JD says read everything you can on the subject, but don't take any of it as the whole story, each individual will have very different responses to treatment for the same disease and different symptoms. Your health care professionals (consultants) will answer any questions that the web throws up.

Please accept my best wishes for Mrs. Bernard and for yourself.

stevemac · 9th August 2009, 16:59

Really sorry to hear about your wife's health problems. If there is anything I can help with just let me know. When SWMBO was diagnosed with Leukaemia in 2000 I found the web a huge help. The CML forum is just like our forum and offered support and advice. It also lead us to a drug trial in Hammersmith that came out of the Genome project. We managed to get her on it and she has been Philadelphia free (technical term read cured!) for the last 6 years. It's going to be down to you to learn all you can about the problem, treatments and other issues, Mrs Bernard will probably not want to know as SWMBO didn't. Best wishes and good luck to you both.

chrissyboy · 9th August 2009, 17:24

hi i no experiance of it but may be you can find some answer via this link ,i know there are some trails going on about with may result in find some relief .sorry to hear about it hope this helps

the link is http://www.pulmonaryfibrosis.org.uk/

CFS75 · 9th August 2009, 18:16

Bernard, my wife was diagnosed with pulmonary fibrosis three years ago and had several spells in hospital where she was put on an oxygen supply. A heart condition resulted from the extra stresses and strains and I was extremely worried about her as you can imagine.

The treatment and care that she received in hospital was very good and she was eventually able to manage without the oxygen and was discharged home. Although the condition cannot be cured, her medication has controlled her heart condition and breathing to a great extent and she attends her GP's surgery for regular checks and monitoring.

My wife is not very mobile now but cannot be persuaded to use a wheelchair, so we are very restricted in visits and travel. Fortunately my family live locally and give me much support. On the domestic front I am chief cook and bottlewasher and after three years I have become quite proficient around the house! SWMBO still supervises me and I intend to do all that I can so that she will continue to do so for a long time!

Please accept our best wishes to you both.

Colin

Scribbler. · 9th August 2009, 18:21

:lol: Hi Bernard my friend,
No exprience of this but, please go search the British Medical Heart Foundation website it give a full and comprehensive coverage on all aspects. Best wishes to you and your good lady, we'll say one for her matey. Mike.

baggie9 · 9th August 2009, 18:40

Hi Bernard,. sorry to hear of your wifes health problems.Best wishes to you both.

starbug2 · 9th August 2009, 19:06

i wish you both all the best , sorry to hear that things are not well

9th August 2009, 14:33	#1
Bernard LPG I really should get out more....... 75 V6 Saloon 2003 LPG MGZT V8 260 LPG Join Date: Dec 2006 Location: Evesham Posts: 2,134 Thanks: 0 Thanked 1 Time in 1 Post	Anyone with experience of Pulmonary Fibrosis? Unfortunately my wife has been belatedly diagnosed with this after being treated mistakenly for Asthma. It has lead to a heart attack due to oxygen starvation and she now is back home but connected to an oxygen supply for 16 hours per day. I wondered if anyone here has had experience of this and what measures you have taken to at least make the best out of life?

9th August 2009, 14:44	#3
JohnDotCom * Rover 75 FaceLift Tourer CDTi 170BHP Auto ConnSE 2005 Model Starlight Silver Join Date: Nov 2006 Location: Abergele Posts: 28,735 Thanks: 0 Thanked 6 Times in 5 Posts	Sorry to hear of your sad news, I hope she can improve quickly and require less use of the Oxygen very soon. My Uncle had a Lung transplant which helped enormously. Have a read here: http://pulmonaryfibrosis.org/ipf.htm Last edited by JohnDotCom; 9th August 2009 at 14:46..

9th August 2009, 16:59	#5
stevemac This is my second home Jaguar X Type 2.2D Estate Join Date: Jun 2007 Location: Farnborough Posts: 4,306 Thanks: 6 Thanked 13 Times in 6 Posts	Really sorry to hear about your wife's health problems. If there is anything I can help with just let me know. When SWMBO was diagnosed with Leukaemia in 2000 I found the web a huge help. The CML forum is just like our forum and offered support and advice. It also lead us to a drug trial in Hammersmith that came out of the Genome project. We managed to get her on it and she has been Philadelphia free (technical term read cured!) for the last 6 years. It's going to be down to you to learn all you can about the problem, treatments and other issues, Mrs Bernard will probably not want to know as SWMBO didn't. Best wishes and good luck to you both. __________________ • • • • • • • • Steve “People say nothing is impossible, but I do nothing every day.” Winnie-the-Pooh http://i303.photobucket.com/albums/n...5/twitter1.jpg

9th August 2009, 17:24	#6
chrissyboy This is my second home lovely little ford focus. Join Date: Jul 2009 Location: East Dulwich Posts: 7,877 Thanks: 2 Thanked 82 Times in 68 Posts	hi hi i no experiance of it but may be you can find some answer via this link ,i know there are some trails going on about with may result in find some relief .sorry to hear about it hope this helps the link is http://www.pulmonaryfibrosis.org.uk/ Last edited by chrissyboy; 9th August 2009 at 17:26.. Reason: forgot toadd the link .

9th August 2009, 19:06	#10
starbug2 This is my second home Silver Rover 75 Tourer Club SE CDTI + MGF 1.8 in BRG Join Date: Jun 2009 Location: EARL SHILTON Posts: 5,944 Thanks: 235 Thanked 144 Times in 108 Posts	i wish you both all the best , sorry to hear that things are not well __________________ Membership No. 7576 now with 2020 MG ZS 1Lt TURBO engine with automatic 6 speed gearbox to help keep the 75 and MG F going as long as possible

9th August 2009, 14:41	#2
Raistlin Banned 75 CDT Connoisseur SE Auto Join Date: Nov 2006 Location: Wolverhampton Posts: 8,450 Thanks: 0 Thanked 3 Times in 3 Posts	No experience of this Bernard but Marion and I are saddened beyond words to hear this news. Anything we can do to help, just say.

9th August 2009, 14:57	#4
GreyGhost Banned 180+ Sport Auto Join Date: Oct 2006 Location: Bedford Middle Level Posts: 17,787 Thanks: 0 Thanked 18 Times in 5 Posts	As JD says read everything you can on the subject, but don't take any of it as the whole story, each individual will have very different responses to treatment for the same disease and different symptoms. Your health care professionals (consultants) will answer any questions that the web throws up. Please accept my best wishes for Mrs. Bernard and for yourself.

9th August 2009, 18:16	#7
CFS75 Loves to post Rover 75 2.5 V6 Connoisseur SE Auto Join Date: Nov 2006 Location: Colchester Posts: 341 Thanks: 7 Thanked 3 Times in 3 Posts	Bernard, my wife was diagnosed with pulmonary fibrosis three years ago and had several spells in hospital where she was put on an oxygen supply. A heart condition resulted from the extra stresses and strains and I was extremely worried about her as you can imagine. The treatment and care that she received in hospital was very good and she was eventually able to manage without the oxygen and was discharged home. Although the condition cannot be cured, her medication has controlled her heart condition and breathing to a great extent and she attends her GP's surgery for regular checks and monitoring. My wife is not very mobile now but cannot be persuaded to use a wheelchair, so we are very restricted in visits and travel. Fortunately my family live locally and give me much support. On the domestic front I am chief cook and bottlewasher and after three years I have become quite proficient around the house! SWMBO still supervises me and I intend to do all that I can so that she will continue to do so for a long time! Please accept our best wishes to you both. Colin

9th August 2009, 18:21	#8
Scribbler. Gets stuck in Rover 75. Saloon. Red. V6. 2.5. Join Date: Mar 2009 Location: Poole Posts: 803 Thanks: 0 Thanked 97 Times in 22 Posts	:lol: Hi Bernard my friend, No exprience of this but, please go search the British Medical Heart Foundation website it give a full and comprehensive coverage on all aspects. Best wishes to you and your good lady, we'll say one for her matey. Mike.

9th August 2009, 18:40	#9
baggie9 Posted a thing or two Jaguar s Type Join Date: Feb 2009 Location: tipton Posts: 1,369 Thanks: 3 Thanked 1 Time in 1 Post	Hi Bernard,. sorry to hear of your wifes health problems.Best wishes to you both.