February 7, 2020 at 5:00 pm #22887
The past two weeks have been hell. Bear with me. On Thursday, our new rescue cat needed to go to the vet. I am now using ambulatory oxygen and the kerfuffle of getting it ready for the short period I would need it while transporting Casper seemed too much bother. On Friday, I had a tooth extracted because my dentist didn’t want to put me through the ordeal of a root canal requiring my airway to be partially blocked for two 45 minute sessions. Since I’m also on anticoagulant, extraction was risky and proved to be traumatic – that tooth did not want to come out. On Saturday my son called me with a crisis. I begged him to call an ambulance. He had stopped answering the phone. On Sunday my husband was overcome with pain and went to the hospital in an ambulance. On Monday I visited him between two 6 minute walk tests to make sure I was on the right oxygen flow rate. On Tuesday I returned to the dentist with “dry socket.” On Thursday my stepdaughter had an invasive procedure and fortunately the news was good. On Friday, nothing bad happened. Amazing. On Saturday my son’s father called me from the USA and told me our son was dead. He was 43 years old.
I live in Newcastle upon Tyne in North East England. I have not flown anywhere since my diagnosis and the thought of trying to fly to San Francisco and deal with this was daunting. Fortunately we were able to make most of the arrangements over the internet and Ben’s dad went to San Francisco to take care of the final details. I was tearing my hair out over how to get Ben’s ashes here, reading the regulations of two different countries. His father offered to bring them over himself.
I know I have a terminal illness. I have saved the ashes of my two elderly and beloved cats to go in with mine once I am cremated. Never did I imagine that I would outlive my son. Now his will accompany mine as well. He had talked about coming to see me. Now he will be with me forever.
I can’t even begin to imagine what I would have done if I hadn’t had someone in the USA to take care of this. I know I would have figured out a way but I also never imagined that having pulmonary fibrosis would limit me in this particular way.
Thanks for providing a space to say all this.
February 8, 2020 at 1:55 pm #22888Mark KoziolKeymaster
Hello Wendy, I’m sorry I wasn’t able to respond earlier. All I can say is I am sorry to hear about the death of your son. I am also sorry to hear how the past two weeks have went for you. This is disheartening to read. You are an amazing and strong person to have dealt with the adversity you have faced. I hope you are doing well. Please take care of your mind and body. Best wishes, Mark.
February 9, 2020 at 10:18 am #22892
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!
- This reply was modified 8 months, 2 weeks ago by Wendy Dirks.
February 9, 2020 at 3:21 pm #22894JillTParticipant
Very sorry for your loss, Wendy.
I found your observation about developing an interest in genealogy when coming to terms with our own mortality very telling – exactly the same thing happened to me. I’ve never had any religious or spiritual beliefs – and prior to my diagnosis, no interest in family history etc. Once I was diagnosed with IPF, retired and with more time on my hands, I developed the interest when my sister asked me to do some research for my elderly aunts (who have now passed) – it was utterly absorbing for a long time, I guess until my symptoms became ever-present and fatigue trumped fascination. Agreed also that it’s so much easier now than when one of my uncles did his research back in the 80’s with so much online and at our fingertips.
As part of it, I also had my genetics done with both Ancestry and 23andme. Recently found a paper on the GWAS studies identifying risk alleles for IPF. Although not all of the genes are tested in those ancestry based protocols, of the ones that were tested, I had risk readings for IPF on almost all that I got results for. Quite a revelation for me, though as far as I know, there’s no family history of the disease prior to me.
February 9, 2020 at 4:14 pm #22895
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.
February 9, 2020 at 5:47 pm #22896JillTParticipant
I think it’s very recent research done since the entire genome was decoded. GWAS is an acronym for Genome Wide Associational Studies. I wasn’t really aware of the research myself until I watched a recent video from the recent PF Conference:
I went looking for studies on PubMed and found a study specific to ILDs and found the following paper (2019), then used the loci to check against my raw data from genetic tests I had done: https://err.ersjournals.com/content/28/153/190053
- This reply was modified 8 months, 2 weeks ago by JillT.
February 10, 2020 at 11:06 am #22912
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?
February 10, 2020 at 8:05 am #22901Charlene MarshallKeymaster
My heart aches reading what you’ve been through in the past two weeks, I am so very sorry for the loss of your son. Despite all the grief and pain, I am glad you felt comfortable turning to your forums community to share what this experience was like for you. Although we can’t ever truly understand your experience (as it is unique to you), we are here for you and can understand the mortality aspect of it and how scary that threat is. I hope you take some time for yourself, as you need, and be gentle with your heart this week. If you need us, we’re here for you Wendy.
All my love.
February 10, 2020 at 11:09 am #22913
Thank you so much, Charlene – I know you have been going through a very difficult time from reading your posts on the news page. I am so sorry. That illness of yours has been a real setback. Know that I’m thinking of you too and hoping that you recover a bit. In 2018 I was sick for months with inflammation throughout my body, not just my lungs and also hospitalised, only briefly, when I had internal bleeding. It took months to recover and although I didn’t ever recover completely, I did slowly feel better over several months. I hope that the same happens for you.
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