u/Calm-Point-3286

Hello,

I am uk based. I worked with asbestos in the 1970s and now have asbestosis and end of life care, (under 12 months)

I’d like to explain to people what happens, medically, if you become ill.

“For those interested my timeline from cough to end of life care is detailed below. I hope this helps.

2020 August coughing
2021 March GP
2021 April X-Ray - negative
2021 June - CT scan
2021 July - referral to Respiratory Consultant
2021 November - Diagnosis PF/Asbestosis Prognosis 2-5 years
2021 December - Civil case started
2022 May - tlco 64%
2023 August - begin nintedanib
2023 December - FVC 85% tlco 57%
2024 July - begin using ambulatory oxygen
2024 September - FVC 80% tlco 57%
2024 November - referred to Palliative Care Consultant
2025 January - begin using Oramorph
2025 April - Respect form added to CPR/DNR record
2025 June - MST slow release morphine 10mg prescribed
2025 July - Civil case concluded
2026 June - End-of-life-care
2026 July - FVC 56% tlco 36%

FVC - 35% tlco - 37%

FVC: FVC stands for Forced Vital Capacity. It measures the total amount of air you can forcefully exhale after taking the deepest possible breath.

tlco: TLCO (Transfer Factor for Carbon Monoxide), also widely known as DLCO, is a lung function test that measures how efficiently oxygen moves from the tiny air sacs (alveoli) in your lungs into your bloodstream.

My only advice if you want to know if you have asbestos in your environment is speak to a professional.

I saw my Respiratory Consultant today. He confirmed EOL due to the use now of continuous oxygen saying its usually a good indicator of life expectancy of less than 12 months. He showed me the graph of my breathing tests from 2022 when investigation began to date. There is a very steep drop the first 18 months in fvc, then i begin Nintedanib and the deterioration flattens out for 12 months then begins to deteriorate again but at a much slower pace. The conclusion is that the nintedanib is working slowing down the progression and even now I am in EOLC he says it is still worth taking so long as quality of life is there. We agreed on that.

I am to discuss with Palliative Care reducing some of the other drugs that will not be detrimental in my life expectancy timescale.

With my partner, even though we expected the news we felt positive about it and have time to plan to do stuff together.

So, the timeline for those interested is detailed below. For those interested I hope this helps.

2020 August coughing
2021 March GP
2021 April X-Ray - negative
2021 June - CT scan
2021 July - referral to Respiratory Consultant
2021 November - Diagnosis PF/Asbestosis Prognosis 2-5 years
2021 December - Civil case started
2022 May - tlco 64%
2023 August - begin nintedanib
2023 December - FVC 85% tlco 57%
2024 July - begin using ambulatory oxygen
2024 September - FVC 80% tlco 57%
2024 November - referred to Palliative Care Consultant
2025 January - begin using Oramorph
2025 April - Respect form added to CPR/DNR record
2025 June - MST slow release morphine 10mg prescribed
2025 July - Civil case concluded
2026 June - End-of-life-care
2026 July - FVC 56% tlco 36%

FVC - 35% tlco - 37%

Thought I would post an update on my condition.
Had walk test for Pulmonary Rehab a month ago. Failed on pulse O2 but passed on continuous.

Began using continuous O2 24/7. Oxygen machines installed and O2 piped around the house.

Started Pulmonary Rehab month ago.

Saw my Palliative Care Consultant week or so ago. I see my Respiratory Consultant end of this week.

Moved on to End-Of-Life-Care (status green)17/6

Began to stop taking statins for cholesterol to give my system a rest from as now, unnecessary treatment.

Mentally and emotionally I feel OK. It wasn’t unexpected. Physically, the deterioration feels like it’s noticeable on a weekly sometimes daily basis. Managing ambulatory oxygen is a challenge with deliveries now every three days.

The recent heat in the UK has knocked me about, thankfully we have a/c so that helps. I do have more energy and sleep better with continuous oxygen. There has been some vomiting and digestive problems. Heavy blood and mucus in my nose, I guess from the increase in oxygen.

I am waiting to hear from MacMillan team about care and treatment.

We’ve been together for over 26 years, married 23 years. Sometimes life was hard emotionally, particularly for my partner, she took the brunt of the effects of what I now know was CPTSD. There were many many good times, but time was punctuated by bouts of emotional upheaval.

A couple of years ago I was diagnosed with a terminal illness that cannot be cured and will kill me within five years they say. Its progress can be slowed but the deterioration is constant. This would seem to the outside world to be the worst thing that could happen. But this is what has happened.

When we received the diagnosis and prognosis we discussed how we should be. We decided to live. There is a saying attributed to Alcoholics Anonymous, ‘Live and Let Live’, we took that as our foundational mantra.

We are both Buddhists so our mantra aligns easily with the Buddhist philosophy.

The first part of the command ‘To Live’ means to live life without fear, to enjoy each moment, find excitement and happiness in each day, To Live without fear of other peoples opinions, to do no harm, to contribute what little we can each day, to be gentle and kind, to love.

The second part ‘Let Live’, means to allow people to be themselves, to not condemn a person for their belief’s or actions. Some people we find have a negative view on life or influence on other peoples lives including ours. We move away, not with condemnation, but with gentleness and quiet. We stay clear of vexatious people that drain our energy and we rejoice in knowing those who have a zest for life that is not attached to wealth but connected to the simple joy of living and sharing.

That is the basis of our life today. There are many other aspects to the way we live, but they are not for now.

Since the diagnosis and our decision to ‘Live and Let Live’ we have had the happiest period of our time together. There is no more trauma. We live in the moment and that has brought great freedom.

I’ve had a fairly easy week with lots of pulse oxygen @ 5l/min, a good sleep last night. And yet my energy level is very low. Had to sleep for a few hours after my breakfast. I find this unpredictability so wearing. We’ve changed plans for the day, my partner has gone out on her own. I wish I knew how to manage my energy levels better.

Any suggestions would be welcomed.

Hello. I’m based in the UK.

Really glad I found this community. I would be interested to hear from patients and loved ones, carers, health professionals.

I have asbestosis, diagnosed 08/23. Currently, I am under Palliative Care team at my hospital as well as my ILD Consultant and nursing team.

I have taken Nintedanib 2x 150mg per day, slow release morphine, Oramorph, and a collection of other drugs that counter side-effects and some that counter the side-effects of the drugs taken to counter the side-effects of the main drugs. I now use pulsed oxygen at 5l/min, probably moving on to continuous oxygen after my walk test last week had to end due to blood o2 level. I am also about to begin my second set of Pulmonary Rehab.

I have a host of things that make the day harder and many that make it easier. Hard is the: nausea, vomiting, diarrhoea. Tiredness and sudden energy crashes. Unpredictable appetite. Anxiety and fear about going outside and being around people. I think the worst part is happening to my partner; constantly having to adjust expectations, spending time without me being there, fear of her future (we have no children or family). I would love to hear from partners of sufferers.

I was exposed to high levels of asbestos in the 70s and early 80s and began suffering in 2020 from symptoms as then unknown cause.

Thanks for the community. Feels like a good place to be.