- This topic has 2 replies, 3 voices, and was last updated 10 months, 4 weeks ago by Charlene Marshall.
May 1, 2022 at 10:27 pm #31897Rajesh SubramanianParticipant
My Mother “SusilaBai” passed away on Feb 1st, 2022 due to IPF at the age of 66. She fought IPF bravely for almost 2 years after diagnosis. She always had hope that she can recover from this deadly disease (I was giving her hope that soon a remedy will be in place based on clinical trails I was following in this forum). At the end it was COVID, that turned things upside down. She couldn’t get out of COVID. If she didn’t get COVID, she would have lived at least for another 3-5 with the existing medicines (hopefully in the mean time, we have some remedy in place). Few things that I wanted to share:
1. Awareness about this disease is very low among people (I am referring to India where my Mother lived). If my Mother would have got diagnosed in a very early stage, she could have easily lived with Ofev and Pirfenidone for another 10 years, I know some who are living this.
2. COVID is really deadly for these patients. So at any cost avoid getting COVID.
3. After 60 years (preferably after 40 years) of age, a yearly full body checkup may help in find out diseases like this, in my personal opinion. So suggest everyone in this age category to undergo routine full body check-ups.
4. Lot of emotional support and care should be given to these patients, since everyday is unpredictable (some good days/some bad days, but can’t predict).
This forum particularly helped me in a lot of ways to understand the disease and different treatments. I have asked some questions and got valuable response from the members. I would like to thank Charlene as well as other members for their inputs and kind words.
I was trying for Cell therapy but couldn’t go for that as planned, things changed quickly due to COVID. I got Wei institute herbals (4 months) for my Mother. She had lot of cough and white plum while she took this. After the 1st month her breathing was so much improved, she could easily breath and she was greatly relaxed. But subsequent months nothing improved, since she had lot of cough and no improvement further she stopped taking it (this was June 2021). In my understanding, this medicine basically supported lung functionalities (not sure what exactly it did), but my Mother felt breathing was easy after taking this for a month.
I still have a month of this “Wei Institute” medicine supply with me. I can give it to anyone who needs it, please let me know. I thought it may help someone, I dumped rest of my Mother’s medicine.
Again, I am really grateful for this group and members for sharing and creating this knowledge repository. It helped me a lot. Greatly appreciate this effort. I pray that soon a medicine which can reverse this Lung Fibrosis in humans be found and help many recover from this disease successfully.
– Rajesh Subramanian.
May 4, 2022 at 2:05 am #31923Christie PatientParticipant
Oh Rajesh, I am so sorry to hear about the death of your mother. It sounds like she was well supported by you in her journey with PF. She was lucky to have you. I am glad that this forum provided support and community for you as you cared for her. Thank you for sharing your thoughts about awareness, prevention, and support for patients with PF. Never stop telling her story, as it could be of help to others.
We’ll be here if you ever feel like sharing memories of your mother so we can help keep her memory alive with you.
May 4, 2022 at 8:34 pm #31939Charlene MarshallKeymaster
I am so sorry to hear about the loss of your mother, and am sending you lots of love to surround you. May the memories you have together carry you through this difficult time, and know that our forum community is here for you. I’m glad this site was helpful, and I am hoping your mother is resting now and breathing freely.
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