wendy-dirks
Forum Replies Created
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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 was trying to think of how to say goodbye and this seems a good opportunity. I’m comfortable, content, and completely at peace. There did come a point where the breathlessness and other symptoms made me so miserable that the sweet peace of death sounds welcome. I wish you all a happy 2023.
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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 it that I was afraid of and I realised it wasn’t death itself but suffering and loss beforehand. This has helped me focus on helpful vs unhelpful thoughts.
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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 general ILD online resources that might help.
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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 threatening breathlessness and oxygen saturation. It was my third hospitalisation in less than four months and I cheered myself up my creating a blog post with my phone. Doll therapy is the best but I am also an avid reader and spend a lot of time reading. Lately I’ve been reading a lot of feminist literature and continuing my 16 year journey through British history. I’m an immigrant and started with the Anglo-Saxons and have been through the Vikings, the Normans, Plantagenets, War of the Roses, Tudors, Stuarts, and have finally reached the Georgians. At the moment I’m reading a book on the Jacobite rebellion of 1745. It will be fun to read about the American revolution, in which so many of my ancestors fought, from the British perspective!
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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.
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And the sound of Mr Blackbird singing outside my window!
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Hi, Linda – My husband is my carer and I know how hard this must be for you. I am now using 5 lpm at rest and 10 lpm when moving. I have two oxygen concentrators downstairs and two upstairs so that it is relatively easy to adjust the flow rate. I’m in the process of getting a wheelchair set up. Yesterday my husband and I went for a walk with a liquid oxygen flask set at 5 lpm. It was my first trip out in months and delightful. My husband is 76 and it was difficult for him so I am going to look into getting an electric wheelchair. We live in England so all of this is free of charge on the NHS. I am receiving palliative care through a charitable organisation and it has made an enormous difference to the quality of my life and I can’t recommend it highly enough if you are able to access it. My understanding of the progression of lung diseases is that we will ultimately be homebound, chair bound, then bed bound at the end. The trick is to accept each change and strive for the best possible quality of life at each one. I also urge you to find a carer’s support group if you can. We are all so grateful to our carers. You are amazing. Much love, Wendy
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I’m so sorry you have had to deal with this, Char. It sounds incredibly difficult. While I was in hospital with pneumonia in March, my sister-in-law was in hospital with lung cancer. She died and I didn’t and I realised I felt some survivor’s guilt. I couldn’t go to the funeral to support my husband because I don’t have enough portable oxygen to be out that long. As it happened, my husband and his daughter’s were the only people at the funeral wearing masks. However, this did inspire me to read a book that I had purchased but avoided reading called, “With the End in Mind: How to Live and Die Well,” by palliative care consultant Kathryn Mannix. It was an excellent choice as it demystifies death and makes the process seem to be what it is – part of life. She has written another book that looks like it might be helpful to readers of the forums called, “Listen: How to Find the Words for Tender Conversations.” I hope you can give yourself all the self compassion and care you need.
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Dear All –
Thank you for your concern and kindness. I really appreciate it. I was in hospital for two weeks this time and once again feel very grateful to have been there. I didn’t wait as long this time as I did in March to realise I needed help. I learned some interesting things about my illness and my oxygen needs are finally being addressed properly. Some of this may be useful to others in the forum and some may be only relevant for people with CHP (chronic hypersensitivity pneumonitis).
I was concerned that I had the same infection (pneumonia) treated in March in hospital. In fact, it was a completely new infection. The consultant explained that my illness had progressed to a point at which I was highly susceptible to “self infection” as my lungs were so filled with inflammation and my immune system suppressed. Anything I happened to breathe in could land me back in hospital so I’m preparing a hospital ready bag with pyjamas, etc.
The other interesting thing that I learned is that my understanding of how fibrosis forms was wrong. I had a CT scan and compared to one year ago, my fibrosis has progressed very little but the inflammation in my lungs has gotten much worse. I always thought that the inflammation caused the fibrosis but the latest thought is that these are two different cellular pathways. At the time of my diagnosis 3.5 years ago, the doctors were reluctant to put me on steroids because of my weight. But my weight has been stable and unchanging since I’ve been on the steroids and my blood sugar is completely normal. I didn’t know that steroids could cause diabetes! Now I am once again slowly lowering my steroid dosage but will stay on a maintenance dose until my next clinic appointment and blood draw. Then I will also be prescribed Ofev, fingers crossed! That’s the plan.
I have been saying for some time that my oxygen levels drop to dangerous levels very rapidly when I move. When I was in hospital in March, my target was to stay on my constant 5lpm but it is now clear that this will not work. So I have four concentrators, two upstairs and two down and when I move, I must be on 10lpm. A lot of oxygen. My nose is a mess inside! I’ve been treating that with a variety of water based gels.
Finally, one of my consultants and I got into a discussion of lung transplants and she told me that they now realise that the same processes that create the disease in the first place begin to affect the new lungs as well. So they are no longer encouraging transplants for their patients. This may only apply to people with CHP as so many people here have had successful transplants.
My short term memory on high doses of steroids is almost completely nonexistent. I’m going to stick a notebook and pen in my hospital ready bag so I can write things down. I can be in the middle of sentence and have no idea what the conversation was about.
Thanks again and I hope you find some of this useful!
Best wishes,
Wendy
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Hi, Christie –
One of the consequences of my illness has been putting on a tremendous amount of weight as my ability to move decreased. I grew up in a culture that despises fat people and I had to spend a lot of time learning to love and accept myself as a fat woman after being thin and fit all my adult life. I discovered Heath at Every Size and did a Body Love course with Ragen Chastain, a fat activist and blogger. These steps allowed me to accept a nasal cannula with ease. It’s just a part of my face now! I have had people on social media make fun of it when they didn’t like something I said (usually about science). I can’t imagine anything more ridiculous than trying to win a losing argument by resorting to personal insults, but that’s the nature of social media. I don’t mind seeing myself in photos at all and in fact, during my recent hospital stays I posted pictures of me with various types of masks as my oxygen needs decreased.
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Hello, Friends –
Once again I am in one of the respiratory wards at the RVI and am being treated with antibiotics and steroids. Unfortunately, my oxygen saturation began to plummet again and my fatigue came back as my steroids tapered off. I don’t know whether to call this my second AE in 2 months or consider it the same event popping up like a whack-a-mole game. I’m very discouraged. I still haven’t started Ofev and I just don’t know what is next for me. It’s a bank holiday (3 day) weekend here and although I’ve been seen by consultants, none of them are the experts from the ILD clinic who won’t be in until Tuesday. I hope you are all doing better than I am right now. Best wishes, Wendy
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Hi, Michael – That’s a tough one. I put off telling my adult son immediately but after a couple of months I realised I had to do it. Since my dad died of IPF, my son knew immediately what the outcome would be. Unfortunately, he died before he got the chance to see me while I was still alive. Neither of us expected that. I think it’s best to tell them as soon as possible so they have plenty of time to process it in advance – and because life is full of uncertainty. Are you receiving palliative care? My palliative care team are incredibly helpful and experienced with all of these issues and if you are, they might be able to help you plan a strategy.
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Hello, everyone!
I just want to let you know that I am home, feeling better than I have in months, and my biggest challenge at the moment is not to overdo it, at which I am dismally failing. I’m exhausted today after tidying up my bedroom yesterday, which had a collection of clutter driving me crazy when I was relying completely on others to help me. Today I got some help tackling the front room.
I have set myself mini-goals, and today I met number two by showering on my own. I am even wearing clothes instead of pyjamas! Now I might go put on some earrings to celebrate. So grateful to be alive. I think when I arrived in hospital, the first doctors to see me weren’t sure how this was going to go as there were a couple of end of life conversations about Do Not Resuscitate and whether or not I wanted to be ventilated if necessary. But here I am!
I’ve finished my antibiotics and am now on a high dose of steroids, started last week in hospital, that is being cut back 5mg at a time for the next five weeks and then I am due to start on Ofev. Fingers crossed I won’t have horrendous side effects. I’m glad to be cutting back on the steroids as one of the side effects for me was losing words. I would be talking away about something and a word would simply not be there. Very disconcerting.
Happy spring, everyone!
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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. Now that I’m chair bound more or less, I do gentle online chair yoga every day. I also took part in an online yoga class via Zoom but since my latest exacerbation and 2 hospitalisations, I’m slowly trying to work up to the level of fitness I need for a long class. For those of us who were once fit and active, finding joy in moving is really a wonderful way to keep from getting depressed. Sometimes I listen to James Brown’s music and “dance” in my chair with my upper body. I hope your husband finds ways to keep moving too.
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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 more but you always have many understanding ears here.
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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 of these could help improve your quality of life, but they do help mine enormously, along with a hobby that can be done sitting down.
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Chris, are you able to access palliative care? I’m only able to get from chair to bed to chair now but am in the process of sorting a wheelchair. Palliative care has changed my life!
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Hi, Linda – Just saw your husband is getting palliative care too. Wonderful!
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Hi, Karen – It was levofloxacin, first via drip, then orally.
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That’s wonderful to hear! I hope he continues to improve.
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How wonderful that you got your transplant so quickly! I’m not a candidate for one but it’s wonderful to hear others are benefiting. I hope you continue to improve and do well.
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I’m so glad Esbriet is working for you. I have CHP (chronic hypersensitivity pneumonitis) rather than IPF and Ofev has only recently been approved for use for CHP here in the UK. I hope I’m able to manage it. Fingers crossed!
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Thank you, Jerry! I’ve been on oxygen support of some sort for two years now and because I live in England, all my health care is “free.” I need oxygen 24/7 now and have a concentrator at home with tubing that reaches all over the house, even upstairs. I hope your pneumonia has cleared up and you continue to enjoy life!
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Thank you, Char! I feel better every day and am able to get around more as well on less oxygen so I’m feeling very optimistic. A week ago I could barely move at all and today I achieved my mini goal of walking myself unaided to the bathroom dragging a big oxygen tank on 12 lpm. The simple joy of being able to wash my hands in soap and water instead of hand gel! I stood up and opened the window on 5 lpm! Woohoo! Seriously, every step makes me so happy.