Planning for the future with sarcoid pulmonary fibrosis

[Jomo46]

I have sarcoid pulmonary fibrosis diagnosed 2 Year’s ago, and a month ago started on ambulatory oxygen. My husband suffers from panic attacks and anxiety.

I know I am far worse than a year ago. My daughter, her husband and 3 children are going to move into our 4 bedroomed house and help care for us, with her planning to reduce her work hours. we plan to build a single storey extension of 2 bedrooms, wet room and kitchenette, keeping the use of a sitting room in the original house. We are lucky that we have quite good pensions and savings so would not get any means tested benefits or help. we need 2 bedrooms because I cough a lot and am awake for hours at night.

I would like to know the average timescale of this disease and how long I have left. The consultant is evasive. I presume I will need full time oxygen in the near future, and will be in a wheelchair - hence the ground floor extension. Eventually I will die of suffocation I imagine, with the appropriate pain relief.

Does anyone have any experience or knowledge of my prognosis. I know we are all different, but I feel I am wallowing in a sea of unknown futures.

I would like to know of other people’s experience with the progression of sarcoid pulmonary fibrosis. - and advice on a disabled extension.

If you can help many thanks

Joanna

[Hidden]

I can’t help with a prognosis but I have recently had work done to make things wheel chair accessible. Things to consider are wide corridors, the height of work stations so that you can reach things from the chair. A wet room. Plenty of power points. I typed disabled access into google to get an idea of what is available @lso some good examples on Pinterest. Hope someone else can help with your other questions.

[Jomo46 in reply to Hidden]

Thanks . That’s really useful, especially the googling idea. There seems so much to consider. I especially hadn’t thought of plenty of power points. At the moment I’m finding it really difficult to bend forward.the washing machine, dryer, oven are all challenges.i need stuff to be above waist high.

, I think it’s because my lungs don’t want to be creased up. It will be a different ball game when I’m in a wheelchair.

Thanks again for replying.

Joanna

[Hidden in reply to Jomo46]

Forgot to say, I had some points put higher up to make them reachable without bending down. The tumble dryer can go on top of the washing machine. I think we got the bracket to do it in Curry’s. The kitchen sink has no cupboard underneath so a wheelchair can get up close. We are now getting a wardrobe with sliding doors to make it easier to open (from the wheelchair). We haven’t got one but you can get cooker hobs designed for wheelchair users. Happy planning.

[Jomo46 in reply to Hidden]

Thanks so much - appreciated

Best wishes joanna

[simbanine]

Hi Joanna

You are a few months behind me in going on oxygen and we seem to be very similar in other ways, The first thing that went with me was great difficulty in getting out of our low slung car so have had to change to one of those SUV things. I am like you with pensions and savings so thought no assistance was available, but the local respiratory nurse came to visit and was a great help. She in turn arranged for a visit from the palliative care nurse and she said despite not being hard up I was still entitled to one weekly extra pension because of the disability which she is arranging and also she is sending in the occupational therapist who will be able to arrange additional things in the house which it is clear I need. Maybe you might also be able to get some assistance - I did not want it but she was adamant it was my right.

regards

Mike

[Jomo46 in reply to simbanine]

Hi mike - great to hear from someone with the pulmonary fibrosis. Ive only met one other at the pulmonary rehab and she stopped coming after 2 weeks.I’ve contacted the occupational therapy team who are looking at my case after a phone assessment. What seems crazy is that planning fees and building reg fees can be waived if for disabled and approved by the occupational therapist. However because our proposed extension would provide extra bedrooms, it would not be considered if I understood her properly. We are quite happy to pay for the extension, but it seems hard that we would not get planning fees waved. We are looking at the future when I am wheelchair bound but the O.T. seem only to look at the present time. My daughter plus family will provide support and eventually save the nhs money .Are you on your own, or have family with you. I get attendance allowance which is helpful.

Great to hear from you

Regards joanna

[simbanine in reply to Jomo46]

Hi Joanna

Seems I am lucky here as the team seem very keen on looking into the future. Also they are very keen on keeping you at home as the illness progresses if that is what you want - Dorset's policy on this was covered on BBC news about a week ago. Like you I know no-one else with PF - I have tried the local facebook pages plus the doctors and chemist (who would not be able to name names, I know) so the support from the team is invaluable, particularly as the nearest support group is about 50 miles away. I am also lucky to have a very supportive wife and 2 sons who both live within half a mile. All 4 of us are involved in the family profession so we are constantly in contact anyhow. My involvement is now quite limited as is my wife's but it does mean we have to have regular contact and it keeps the old grey matter working (I tell myself!).

Regards, Mike

[peege in reply to simbanine]

Don't forget Joanna and Mike that there is always the BLF help line for more information on PF, also the search bar will bring up historic posts. It seems there are few members with it at the moment. Help line: 03000 030555 uk office hours.

Wishing you both all the best for the future. P