[Wendy Dirks]

Hi, Charlene –

I think almost everyone who has a form of PF has experienced trauma on some level. I feel extremely lucky to have an amazing counsellor as part of my palliative care team. In fact, all of my palliative care team are wonderful, but having counselling has been particularly helpful. We meet for an online session every week and she helps me keep focussed on the positive.

I also have been attending an online Trauma Sensitive Yoga class that is very helpful as well. I recommend both chair yoga, TSY, and palliative care for everyone. I recently started relaxation therapy at the hospice, a combination of hypnotherapy for relaxation and reiki. It’s wonderful!

Best wishes to everyone!
Wendy

[Wendy Dirks]

Thank you, Ann, for responding. The disease is incredibly unfair.

[Wendy Dirks]

Hi, Charlene –

My illness is progressing and I spent a lot of the holidays contemplating whether 2022 will be the last year of my life. I was born in 1952 so it has a nice rounded ring to it. My first resolution is to make sure that I have everything covered in terms of end of life practicalities. Next week I will be ringing up the natural burial service that I’ve been putting off forever and getting in touch with our solicitors to make sure our will is updated. My son, who died in 2020, is still a beneficiary and we need to address that.

My second resolution is to enjoy life as much as possible. Through my palliative care team, I have been receiving counselling and it’s been really helpful. We’ve talked about focussing on the things I can still do rather than those I can no longer do and I’ve been writing things down as they occur to me. I love reading and spend every evening with a book – I have for 62 years now. I can still sit and read! I can still sit and enjoy my hobby. I can still sit and write up my scientific research. In fact, here I am with two revised papers in the pipeline and another one about half written. As long as I am just sitting and my oxygen is flowing, I feel absolutely fine.

I hope everyone is looking forward to this challenging new year – again!

[Wendy Dirks]

Hello, All –

I had an appointment with my consultant yesterday and I am one of the patients who will be eligible for Ofev as soon as it it rolled out for people with non-IPF interstitial lung disease next month. He told me that there are so many patients in need of it that they are still working out the logistics of getting everyone started and monitored appropriately.

I’m just worried that it’s going to be too late to do much for me. My illness has progressed significantly over the last month or so and I am so breathless after walking a few steps that it is scary. I’m on oxygen 24/7 and have been prescribed lorazepam to help with the severe attacks of breathlessness.

I spent the holidays wondering if they were my last. I’m receiving wonderful palliative care but it’s still pretty daunting to think how close I might be to the end of my life. My consultant was very evasive when I questioned him and simply wanted to talk about Ofev.

I’ve been reading the thread about Ofev and seeing all the comments about side effects. I’ve got my fingers crossed but the future seems very uncertain at the moment.

Best wishes,

Wendy

[Wendy Dirks]

Hi, Christie –

I am an animal lover and have had pets all of my life. When I moved to England in 2006 from the USA, I had to bring my two young cats with me, particularly as the quarantine laws had dropped to meet EU regulations. They adapted beautifully to becoming British kitties and lived to ripe old age. I have their ashes and intend to have them interred with me when I go.

My husband has always had cats too and after mine died, we waited a bit and then adopted Casper, a “senior” cat from Cat Protection. It was December of 2019. We decided we should adopt an older cat as we are both seniors ourselves and of course, I have an ultimately terminal illness. We adore him and he completely rules our lives. He was 13 at the time and just celebrated his 15th birthday.

Shortly after we adopted him, in January 2020, my son died, and soon after that, the pandemic hit the world in full force. Because of my illness, I was “shielded” and stopped leaving the house except for the rare medical appointment. My husband rarely goes out as he is my carer and has to protect me. I don’t know how we would have managed without Casper. His funny antics, demands for cuddles and treats, and loving personality have kept our spirits up for the last two years. We’re happy not to have a dog – they require too much work and I no longer am able to go for walks. Casper goes out in our garden and vigilantly guards us against the mousies who live in the wall between our garden and our neighbours. For anyone in our situation, a senior cat from a shelter is a wonderful companion.

He’s meowing at me right now, so I must wrap this up and tend to his latest whim.

(PS I hadn’t thought much about the litter box but my husband takes care of it most of the time. I start coughing when I bend down, so I stopped looking after the letterbox some time ago. And I am taking immunosuppressants, so this is a good reminder to let him do it from now on.)

[Wendy Dirks]

Hi, Liz – My consultant told me to stop using mine. I was misdiagnosed with asthma and used them for years but they never really helped. I have hypersensitivity pneumonitis so I can’t speak for other kinds of PF.

[Wendy Dirks]

Dear Lori –

I am so sorry to hear how you are suffering after your own diagnosis and so much loss. My father died in 1989 of IPF, just three years after he was diagnosed. My son, who died last year at age 43, had multiple sclerosis, along with other issues that affected his health. I was diagnosed with a different form of PF, chronic hypersensitivity pneumonitis, 3 years ago. Clearly there is a genetic link in my family to create these immune system disorders. I have to remind myself frequently that medical care for interstitial lung diseases has moved forward significantly since my father’s death and I will celebrate my 69th birthday on Saturday focussing on my gratitude to be alive. But believe me, I have struggled with negative feelings as well. We all have.

It is absolutely normal to feel depressed. You deserve nothing but love and compassion from friends and family. I am sorry your friend is giving you such poor support and showing so little understanding. I have not had that experience so I am not sure what to suggest.

I do suggest this book, written by a regular contributor to Pulmonary Fibrosis News before her death waiting for a transplant. It’s called “Pulmonary Fibrosis Journey: A Counsellor and Fellow Patient Walks With You” by Kim Fredrickson. Kim was a professional counsellor and a Christian and the book offers practical advice on everything from dealing with the initial diagnosis to how to use supplemental oxygen and is laced with wisdom based on her Christian faith. I think you would find it very helpful.

I am not a Christian but I practice mindfulness meditation and yoga and have for many years. Mindfulness helps keep me focussed on the here and now and enjoying what I can still do instead of worrying about what I can’t do anymore. I am also receiving palliative care from a charitable organisation here in the UK called the Marie Curie Hospice. Palliative care is wonderful. I just returned from a session with the physiotherapist and a talk with the nurse who provides emotional support. I just discovered that I can go for respite care if my husband needs a break as my carer. He is 76 years old and caring for me is almost a full time job. If there is an organisation near you that offers palliative care, I can’t recommend it highly enough.

Sending you all the love and support in my heart and hoping you will find comfort – and the ability to deal with your friend.

Wendy

[Wendy Dirks]

Hi, Mary @blessed and Christie @christie-patient –

I did have some issues after the second dose of the Pfizer vaccine. My oxygen saturation dropped and I had a routine appointment 5 days later. The nurse was very concerned about my breathing and I had lung function tests that indicated a decline. However, I felt better after a few weeks and a change to 24/7 oxygen with an oxygen concentrator and my CT scan showed that my lungs were completely stable. I discussed the possibility that the second dose had been responsible for the lung function decline and he thought this was quite possible. Another person here on the forums (sorry, I can’t remember who) also said she felt worse after the 2nd dose but improved after three weeks. I certainly understand your concerns about the booster. The other issue is that nobody actually knows if those of us taking immunosuppressants are actually protected by the vaccines at all. I’m taking mycophenalate mofetil (Cellcept) and one study in transplant patients showed 91% of patients had no antibodies after the first dose. I am continuing to be extremely careful, stay masked, and practicing social distancing as a result.

[Wendy Dirks]

I should be clear that the study (referenced above in the original post) was in transplant patients taking mycophenalate so if you aren’t taking it, you may be protected as Mike is – congratulations, Mike @mikemoses

[Wendy Dirks]

Okay, that worked, fingers crossed this will too. Char, thank you so much for sharing your experience and Christie, thank you for your concern. I’m better mentally today and the oxygen nurse is coming tomorrow so fingers crossed I will get a change in prescription.

I have not been formally diagnosed with an AE as I am waiting for a CT scan but my condition deteriorated almost overnight. I thought I was having a reaction to my covid jab but now I realise that it was a coincidence that it happened at the same time.

I feel as if I have to rearrange so many aspects of day to day life every time there’s a change but I guess that’s part of the reality of ILDs. I hope if I go on to cyclophosphamide that I’ll be able to manage the side effects but I read that one should drink several litres of water every day and I know I don’t drink nearly enough right now. I’m also scared of losing my hair. The nurse assured me that none of her patients went bald but my hair is very thin already and my mother and grandmother had very thin hair as they aged and were very self conscious about it. It’s my vanity’s last stand! Please don’t let me lose my hair! I guess I can stand anything as long as I don’t lose my sense of humour and the ability to laugh at myself!

[Wendy Dirks]

Hi, Char and Christie – I have not been able to post for two days – I just get an error message. This is a test.

[Wendy Dirks]

Thank you everyone for your responses! It’s so wonderful – and so important – to have this space where we can share our thoughts with people who understand. And I have heard about the book you mention, Steven – I may have to give it a read one of these days!

[Wendy Dirks]

I am not religious although I meditate regularly, which helps me keep focussed on the present instead of worrying about the future. To be honest, my palliative care team and my yoga teacher really help me a lot. My son died in 2020 and my physiotherapist referred me to the bereavement counsellor at the hospice. Because of the pandemic, we talked via “Teams” instead of in person, but it was still very helpful. Once I had talked through all of my feelings about my son’s death, it seemed inevitable to talk about my terminal illness and I expressed a lot of my fears. She was wonderful in her responses and challenged me to think about what really scared me – not death itself, but the process leading up to it. Once again, these conversations helped me to focus on the present and not the future.

I attend a particular type of yoga class via Zoom, called Trauma Sensitive Yoga and my teacher is amazing. This particular type of yoga has helped me to feel safe with my emotions and to feel grief and fear safely and without being overwhelmed. While you asked about hope, I would say that for me, being able to feel the negative emotions allows me not to need hope as much as to be fully in the present moment, enjoying and savouring the life that I have now.

The most important thing that both the counsellor and the yoga teacher have helped me realise is that our lives are made up of many “identities” yet there is a person underneath all of them who is unchanging. I have been a mother – now I am not. I have been a scientist – now I am not. I have been so many other things as well – and now I am not. Yet I am still me. That’s been a profound lesson that has helped me to be at peace with the changes taking place in my life now.

[Wendy Dirks]

Hi, Augusta – I have a different form of PF (CHP), but the symptoms are similar. My coughing has been steadily getting worse over the last couple of years and is worse when I get up and just before I go to bed. I also cough when I laugh or sometimes when eating. At this point, the coughing can rapidly turn into convulsive, gut wrenching episodes that make me feel as if I am going to vomit. It’s pretty awful. I also take allergy medication and use cough sweets to sooth it and the best remedy by far is simply swallowing a spoonful of honey. I have been keeping a diary of my symptoms for a couple of months and I notice that the coughing seems to occur when I change positions after a long period of time. For example, in the evenings, I sit on the couch and read a book before bedtime for at least an hour, and when I try to get up and go to bed, I begin to cough and it continues until I’m actually in bed. The same thing occurs when I get up in the morning. I am only supposed to use oxygen when I’m up and about but I have found that if I lie in bed in the morning with the oxygen going for a while, then get up, the coughing is much less severe. The same thing applies in the evening when I’m going to bed. If I lie down with the oxygen going at a very low flow and suck on a cough sweet, the coughing is far less severe.

[Wendy Dirks]

@christie-patient

Hi, Christie – I do yoga via Zoom regularly and meditate most days. I have to use oxygen when I’m doing anything that requires breath regulation or I begin coughing, which is extremely stressful. While doing yoga, I use my oxygen at the recommended 4 litres per minute, but when meditating, only 1 lpm is necessary. As long as I’m not coughing, both are incredibly good at relieving stress.

[Wendy Dirks]

Thank you so much for the kind words and encouragement, Christie. I feel better and can do more every day. It’s good to know AE outcomes are more variable than the gloomy literature I’ve read, but I am sorry to hear about your mother.

[Wendy Dirks]

Hi, Marilyn – Starting antifibrotics earlier is something for which the UK charity Action For Pulmonary Fibrosis has been advocating for some time. I don’t know why the guidelines were set up as they are. Maybe David knows. Best wishes, Wendy

[Wendy Dirks]

Interesting! It was, however, precisely because I am already immunosuppressed that my consultant didn’t want me to use a steroid inhaler. This may not hold for every form of PF however.

[Wendy Dirks]

Thank you, Marianne! I haven’t tried any over the counter nasal sprays. My main problem is postnasal drip which aggravates my cough terribly. So the steroid in the spray is to stop the inflammation in my nose rather than the dryness. Apparently sore throats are the most common side effect from mometasone spray. Knowing it doesn’t help!

I hope if your oxygen is increased it will help you. I am now using 4 lpm 24/7. My sats still go down if I overexert myself so I have gone back to physiotherapy and am working on a home exercise program to help me stay fit. I told the physio that I missed dancing and he encouraged me to try and dance a little – modify it, he said. So I did this week and it was really fun. I managed one James Brown song.

Best wishes,
Wendy

[Wendy Dirks]

Hi, Alejandro –

It’s difficult to answer the question of whether any particular form of oxygen is “good.” They are all good depending on the circumstances, in my experience. I began using oxygen cylinders and they met my needs at first when all I needed was oxygen for going out. But eventually I was using more and more oxygen and had to have deliveries 2x a week. I was switched over to liquid oxygen with a large tank and refillable flask. Liquid oxygen in the flask lasted a lot longer than in a similarly sized cylinder, but even the slightest mistake in filling the flask meant that it froze up and I had no oxygen at all. As my need for oxygen has increased, I have now switched over to a home oxygen concentrator (not portable) and I am using the liquid for going out. It gives me about 2.5 hours of oxygen at 4 litres per minute. That doesn’t allow me to go very far, but to be honest, I struggle to walk for more than 15 minutes or so at the moment, even with oxygen supplementation. I absolutely love the home oxygen concentrator – I turn it on in the morning and turn it off at night when I go to bed. I keep a full flask of liquid oxygen next to the bed in case I need to get up and go to the toilet or have a coughing fit, as using oxygen is the only thing that calms my coughing enough to sleep. I hope this helps!

Best wishes,
Wendy

[Wendy Dirks]

Thank you, Sue – This is the first exacerbation I have had like this so it’s really been a shock. My lung function had been declining, then stabilised and then suddenly, almost over night, my condition completely deteriorated. It’s been really difficult to get my head around the fact that even if they manage to get it to stabilise again, it’s stable at a very debilitating place. After days of complete emotional turmoil, I feel like myself again today, ready to take on whatever the next challenge is. One of the papers I read called this a “cruel disease.” Yep.

[Wendy Dirks]

Hi, Christie – I bought Dr Porges’ “big book” but I haven’t read it yet. Over Christmas I read “The Pocket Guide to Polyvagal Theory: The Transformative Power of Feeling Safe” and it was absolutely life transforming. I highly recommend it!

[Wendy Dirks]

Hi, Christie – I have done yoga all of my adult life so adjusting my practice as my illness has progressed has been an ongoing process. I found my current teacher before the pandemic and attended in person gentle chair yoga classes. After the pandemic started, she (Sally Roach, here in the UK) began teaching Trauma Sensitive Yoga via Zoom. I’m a retired scientist, so I really love the underlying principles of this approach and have found it incredibly helpful as a person with a chronic illness. It’s based on Stephen Porges’ Polyvagal Theory. One of the basic principles is to honour your body’s needs and work sitting down OR standing up – whatever works for you. On good days, I am able to do the movements standing, but on days when I’m suffering a lot of fatigue, I stay seated. I can’t do yoga on the floor anymore – it’s too exhausting to get up once I’m down!

[Wendy Dirks]

Hi, Steven – I reread your earlier posts and realised that your dad had IPF. My dad also died of it over 30 years ago. My son, who died last year at age 43, had multiple sclerosis. Clearly there is a genetic link of some sort that makes us susceptible to overactive immune systems. And optimism is clearly the best medicine! Florida sounds lovely – my brother and his wife live there. It’s struggling here in North East England to reach 50 degrees! Best wishes, Wendy