Andrew (Randy) Hicks

Is important that you make sure that the exacerbation is stopped.
It can go on and on as much as 6 mo.As that was I had read about
This disease. Go hospital if you have to. That what I read about this. Good luck WJM

It helped me to carry the portable isn’t hard. If you want to breathe what’s the deal is. I had to talk myself into it. It’s
Crazy your life in a machine. Think about it you need air right.

I am replying to my oxygen needs going up. You need to keep your needs even not letting your oxygen levels decline. I have read there is three levels in your body that need a certain level to maintain your body. Organs skin and whole body need proper oxidation. I hated to wear the cannala. But how can you live with low levels of oxygen ,cause you…[Read more]

I agree that keeping your Mom’s SPO as close to 90 as possible is essential.  I, like her, really don’t like having an oxygen tank following me around, and yes, I want to set it down and forget about it for a while!
But when I was initially diagnosed with IPF, I told my Doctor that I had no desire to be connected to Oxygen all the time.  He r…[Read more]

I just signed in and saw Phil’s comments to you.
He is right on!  Please give them a call.  Try:
“Call OPEN DOORS at <span class=”white text-decoration-none text-nowrap”>1-866-‍OPENDOOR</span> (1-866-673-6366) to learn more about your OFEV prescription and what financial support options may be available to you.”

My favourite moments this year are hard to define as almost the entire year was spent in hospital or hospice care. I guess I have to say the last two months when I was at home and refused to go back into hospital. I’m now in hospice care and being treated to make me comfortable as I am now dying and the consultant thinks that time is short. I w…[Read more]

Hi Peggy it is not unusual for the numbers to vary from one PFT to the next. I was diagnosed in early 2014 and have accumulated 14 readings between then and 2022. Here is the DLCO readings I have had over that time. Hope they will be helpful.                                                            11/14~42. 5/15~39. 11/16~36. 11/17~50.…[Read more]

There is a grief support counsellor at the hospice where I receive palliative care. She helped me immensely in dealing with the death of my son, my only child, at age 43. Afterward, I started CBT with her for managing my own grief as I have moved closer to my own death. The one thing she said to me about my own death was asking what it was about…[Read more]

This is all true, but everyone is defensive about their Disability to move like they used too. You have to accept the reality of it👀. I have to think about all the rest of my problems Catheter and all no breathe. I have had problems for 15+ years and still alive and almost 80. So I like to Whine about the Doctor that did a shxxxxd job on my…[Read more]

OFEV does cause bleeding ,so I stopped a number of times for procedures and too many side effects. Don’t fear a short stoppage.

Also see Doctor and and ask him or her.

I feel I belong here and am supported although my form of ILD, chronic hypersensitivity pneumonitis, is also rarer than IPF. There are a few other members here with CHP so I’m not the only one and my dad had IPF so I know what we have in common and what is different. I’m sorry that anyone feels unsupported and wonder if anyone has found more gen…[Read more]

My happy place remains my doll room, the 1:6 scale village in our loft. My blog continues at https://dirksdolls.wordpress.com/blog/ but I’m no longer able to build complex dioramas. Some of my dolls celebrated the Queen’s Jubilee while I was whisked off to hospital with the blue lights going and sirens blaring with what they considered life thr…[Read more]

Darcy
By now you must understand that even slow-growing fibrosis of the lungs can and probably will eventually cause you breathing difficulties.
The 2 drugs that FDA has approved for treating IPF just slow down the growth which should mean you will have normal breathing for longer.
If I were you I would want to start on one of them as soon as…[Read more]

I loved pulmonary rehabilitation and was actually in a promotional video distributed to GP surgeries to encourage participation. The lockdown during the pandemic closed our class down. It was so much fun to exercise with others in the same boat. During lockdown I continued working with a physiotherapist one to one as part of my palliative care.…[Read more]

Hi, Chris – I’m so glad to hear you have good days and hospice care. I understand the frustration of not being able to do what we could once do and also the relief of being able to express it. My family, colleagues, and friends do not want to hear about it when I talk about my death while I find it empowering to talk about it. I wish I could help…[Read more]

And the sound of Mr Blackbird singing outside my window!

Let me add to this conversation that 3 months ago I was admitted to hospital and during the first 24 hours it wasn’t clear that I would recover or leave alive. I did and that alone is enough to make me enjoy every breath I take. My loving husband, my cuddly cat, my devoted friends – I have so much for which to live and be grateful.

I know it’s not for everyone, but I meditate daily and do gentle chair yoga, both of which help enormously to keep me positive. I keep a gratitude journal as well. Through my palliative care team, I’m getting online cognitive behavioural therapy (CBT), which is great for dealing with unhelpful thoughts and self compassion. I don’t know if any o…[Read more]