[Wendy Dirks]

Thank you, Jill. I didn’t know there had been alleles identified as risk factors. When my dad died in 1989, his doctor told us to be extremely vigilant about our lung function because the genetics of the disease were unknown. I was surprised when I was diagnosed with hypersensitivity pneumonitis and asked my consultant how a father and daughter could have two different forms of pulmonary fibrosis – it just seemed like too much of a coincidence. He told me that there are quite a few families in which different members have different forms of PF, as if there is an underlying risk factor for it but that the particular form it takes is unique to the individual. I hope that the future brings more discoveries and that they contribute to earlier diagnosis and better treatment.

[Wendy Dirks]

Thank you, Mark. Yesterday I thought that I had come to a place of acceptance. I thought that facing my own mortality as one does with this illness, I was able to accept my son’s death. But today I don’t even want to get dressed. I need to shower – we all know what an effort that requires. It’s really difficult to work up the energy. I have to pull myself together and get back to pulmonary rehab next week because I have to continue to look after myself but it’s a struggle. The thought that kept going through my head all week was how ephemeral life is. But here we are. Amazing at some level, isn’t it?

Tomorrow is the 15th anniversary of my mother’s death. My son gave such a moving tribute at her memorial service. I wish sometimes that I had a religious belief that sustained me, but I don’t. But as long as we who remember him allow our love to flourish in our hearts, Ben will always be with us, just as my mother is, my grandmother is, so many people who have gone before. I’ve been finding a lot of comfort in working on my genealogy, seeing my place in a huge web of lives. My dad, who died of IPF 30 years ago, also spent the last years of his life working on our genealogy. It’s a lot easier now with the internet. I recommend it to everyone!

[Wendy Dirks]

@noah-greenspan

 

Thanks for this, Noah and Charlene! I have read this chapter and it has lots of common sense tips for good nutrition. I do have a couple of questions that have arisen this week while my health care team try to get my new ambulatory oxygen at the right flow with the lightest possible cylinder. Back for more walk tests on Monday!

The nurse told me that people with COPD have to worry about a buildup of carbon dioxide in their blood from getting too much oxygen but that people with my illness don’t need to worry. I’m assuming that’s because COPD is an obstructive disease and people are unable to empty their lungs properly. Pulmonary fibrosis, however, is a restrictive disease and we are unable to fill up our lungs completely when we inhale. If this is the case, is the dietary advice about CO2 more relevant for people with COPD than people with PF? It would seem to me that we don’t have to worry about it as much. To be honest, the only time I ever crave carbohydrates is at breakfast. I have my one cup of coffee for the day and I have to have something high in carbs with it – a muffin, bagel, toast – something like that. I feel energised afterward. The rest of the day, protein and veggies are all I need.

 

[Wendy Dirks]

Thanks for sharing, Jane. I’m not taking Ofev so I’m not suffering any side effects but small meals are definitely part of my life now!

 

[Wendy Dirks]

That’s an interesting thought, Karen, thanks!

[Wendy Dirks]

Richard, it sounds to me like you have found the perfect solution for you! I also used to be the one who always went “home” for Christmas as everyone else in the family lived close to each other and I lived hundreds of miles away. I get it!

[Wendy Dirks]

Thanks, Fred – that makes sense. I don’t usually eat large meals any more anyway – I can’t. I follow what’s called “intuitive eating,” which is a way of reconnecting with our bodies and eating when hungry and stopping when full. I get full quite easily nowadays, and I’ve noticed I eat a lot less than I used to. Making sure I’m eating healthy meals would be a good way to stay on top of this too.

[Wendy Dirks]

Oh, Susan – I really feel for you! I think I’m okay as after the cleaner left my husband went around and wiped everything down, door handles, etc. People don’t mean to be thoughtless – but they are!!!

[Wendy Dirks]

Thank you, Nan! I think scaling back will be the way forward. Having grandchildren is such a blessing – ours are 16 and 10 and I do enjoy their happiness at Christmas.

[Wendy Dirks]

Thank you, Karen! I think your point about expectations makes a lot of sense. And Samantha, I agree that you don’t need to be superwoman – you already are. One of the happiest Christmas celebrations I’ve had since my illness was simply being home with my husband who is my caregiver. We slept in, puttered about, ate a late dinner and it was absolutely lovely and relaxing. My husband is a superhero to me too.

[Wendy Dirks]

Taleena, thank you so much for sharing your thoughts. My dad died of IPF in 1989 so I understand the importance of making memories for people. I was my mother’s caregiver in her final illness in 2005 from cancer and I remember her last Christmas vividly. She insisted on getting her hair done. She lived in Chicago and it was bitterly cold. We practically had to carry her from the car into the hair salon. But it meant so much to her and I’m so happy I was with her.

The gifts that I like to give are photo books. I take photos and pinch them from Facebook and then make books covering the year past for my friends and family. I hope that these memories will help them remember me with love when I am gone – and remember all the fun we had together rather than my illness.

[Wendy Dirks]

Thank you, Burma! Those are excellent suggestions. I’m sorry you ended up in hospital but it sounds as if you were able to have a lovely time anyway.

[Wendy Dirks]

Thank you for responding, Charlene – I’m so sorry you have been so ill. I think you’re right about not making any decisions at the moment. I’m feeling a bit cheerier today anyway. The one thing we did do that was a wonderful Christmas treat was adopt a 13 year old cat from a shelter. Casper is just the sweetest thing ever. The second of my two elderly cats died in September and having a pet around again is lovely.

[Wendy Dirks]

Thanks for responding, Susan! Your solution sounds very sensible. At least it’s over for this year! And the world won’t end if I don’t get the tree put away for a few weeks.

[Wendy Dirks]

Thank you, Jaime – and thanks, Charlene!

I have noticed my appetite diminishing over the last few months. I’m fat now so even if I lose weight it won’t hurt me for a while. I just wish I had the energy to shop and cook. My husband is my hero – he does all the shopping and cooking, but sometimes, well – sometimes I wish for my home cooking! LOL! I love him and I’m so lucky to have him. I hate to complain.

[Wendy Dirks]

I practice intuitive eating – I eat whatever I want, listening to the signals my body sends me about what it needs. I eat when I’m hungry and stop when I’m full. I’ve noticed my appetite slowly diminishing since my diagnosis. To be honest, the thought of trying to impose any kind of restrictions on my eating based on anything but what my body is telling me is really off putting. I know my lifespan is limited and I intend to enjoy what I eat for as long as I’m able to do so. Food should be savoured and eating should be pleasurable and when it becomes something that we have to keep track of, all the joy disappears. No thanks!

[Wendy Dirks]

This is all very interesting for me because when I went for my 3 month checkup today, the consultant told me that my lung function was stable enough for her to defer putting me onto MMF and instead she would send me to be assessed for ambulatory oxygen. She told me I wouldn’t need it when I was sitting or resting but it would make it easier for me to get out and about. So I’m following all this with interest. Of course, a part of me is disappointed that I’m taking the next step but I’m also excited about the possibility of something to help with my breathlessness. I’m sure I’ll have loads of questions once it’s actually prescribed.

I mentioned these forums and how much help they were too. 🙂

[Wendy Dirks]

Thanks, Mark – I don’t know what I’d do without these forums! I get so much information here and it is really appreciated.

[Wendy Dirks]

I have my next appointment at the hospital in less than two weeks and one of the things I want to discuss is my cough. I’m not sure what “chronic” means in this context, but I have intermittent spells of coughing that have become so severe that I’m getting muscle spasms afterward around my rib cage. They are very painful. I’ll see what the consultant says.

[Wendy Dirks]

Hi, Mark – I don’t think I have any pain associated with my PF but I do have arthritis that bothers me occasionally. I really feel for Linda, who posted earlier. I have had scoliosis all my adult life and kept my back pain under control with yoga, which I practiced regularly for over 20 years. My breathlessness and coughing have meant my yoga practice is very gentle now and seated and my back pain is pretty severe. I saw a surgeon about 2 years ago and he told me that I needed a new back – and he couldn’t give me one. The way the back pain and the breathlessness interact means my activities are really limited. Standing or walking for any length of time means pinched nerves along my spine act up and my left leg “disappears” – I can’t feel it anymore. I can’t stand up in the kitchen for very long without severe pain so my husband does all the cooking. Between breathlessness and pain, every task takes forever – I have to stop and catch my breath or else stop and stretch my back.  At the end of the day, what can we do? Just deal with it and get on with it, really. My life moves in slow motion. But at least it’s moving!

 

[Wendy Dirks]

Wow, that was really informative, thank you so much, Jill! Now of course, I want genetic testing to see whether I have the variant that means I have a better prognosis. But that’s probably asking too much – what if I don’t?

 

[Wendy Dirks]

I’m glad you got a laugh out of that! 🙂

[Wendy Dirks]

Thank you, Charlene, and especially for the recognition that accepting oxygen is a big step. I know my friends are all trying to be upbeat and positive, but sometimes we need to have someone recognise how traumatic it is to reach the next step in treatment. Everyone keeps telling me how great it is that I’ll be on oxygen so I can do things I struggle with at the moment without validating my feelings of ambivalence about it. I feel like shouting at them, “Don’t you understand what I’m saying? Now I need oxygen and have to go around with a tube in my nose, you numpties! Of course I feel in a state of shock!” I’m so glad I have this forum where I can vent.

[Wendy Dirks]

Wow, Linda – I’m super impressed with your dedication to exercise! I’m afraid I don’t exercise regularly enough at all any more. It feels as if there just aren’t enough hours in the day and I know I should make a greater effort because it’s so important. You’ve inspired me!