June 15, 2018 at 8:18 am #13065
Hello wonderful forum members!
I, along with BioNews (which is the company that hosts the Pulmonary Fibrosis News site and our Forums), are very happy with the growth of these forums and that is all thanks to…. YOU, our amazing members! We dream of a day that these forums become the “go-to” online platform for others looking for both peer and professional support for living with pulmonary fibrosis (PF).
As we all know, living with a life-threatening lung disease brings not only a lot of physical anguish but it touches us in an emotional and social way as well, making these things difficult to navigate at times. As a patient with IPF, I know that I wouldn’t be able to live with this disease without the support of others, including many of you who generously give your time to these forums, and selflessly share your experiences and stories with others and myself. I am so very grateful. I have heard wonderful feedback and stories about how this forum has benefited others!
With that being said, the “back-end team” has been looking at ways to make this forum even more effective for you, and future patients, caregivers or professionals who join us. One of those ways is increasing posts made to the site, hopefully generating more traffic to the forums and in order to do that, there are some BioNews team members who are going to join us and help me with posts!
Please welcome Marta Ribeiro and Isaura Santos to our forums. They are not patients living with PF, but are strong advocates for us and are passionate about sharing news pertaining to PF. This will be their role as they help me deliver regular content on our forums, please join me in welcoming them! You’ll see their profiles active on our forums sharing news-related content (I will still be making posts on personal experiences of living with IPF) and replying to some conversations as well. I am excited to have them on board to help us continue to grow this wonderful online support community.
With so much gratitude to you all,
September 21, 2018 at 9:57 am #14556Katie BagshaweParticipant
Hello all! I was looking for somewhere to introduce myself and see if others had done the same, feel free to point me in the right direction if I may have missed something. I found out about the forum via Charlene and her incredible blog on the PF News website, it’s taken a while to get here thanks to a few technical glitches but it feels so wonderful to be here!
My name is Katie and I’m based in Derbyshire, UK on the outskirts of the Peak District. My association with PF is that my Dad was diagnosed in 2015 and I was his Carer up until he passed away in the Summer of 2017. My Dad was my absolute best friend and my hero so coming to terms with his loss has, and is incredibly difficult. I learned a lot about PF very quickly, we had no prior knowledge of it all before he was diagnosed but he very quickly needed oxygen and support with his mobility and was also referred to palliative care for quite some time before he passed. Whilst I was caring for him I was also completing studies in Psychology and conducted research into the psychological impact of PF by interviewing patients and carers. Since he passed I’ve been looking more to moving into the medical science of it all and am persuing a future career in Diagnostic Radiography in the hope to work with research teams and patients living with progressive lung disease. At present I am working with Action for Pulmonary Fibrosis, a UK based charity to set up a support group in my town and have recently set up a blog as well as Twitter/Facebook feeds to advertise this but to also pass on my knowledge that I learned whilst caring for Dad.
Outside of the PF community, I now live at home with my Mum and in the past worked in a couple of different cinemas as a Projectionist and as a Supervisor at the Box Office. I have a twelve year old Siberian Husky called Sasha who is a rescue and has the funniest and most unique personalities of any dog I’ve ever come across. I have graduated in studies relating to Computer Science. I love reading and writing and am currently working on a book dedicated to my Father and the journey we had through his illness and our time together. You can read some of my fiction short stories on my blog > https://katiebagshawe.blog/
I’ll share a couple of my favourite pictures below! I look forward to getting to know the forum members more and hopefully helping in any way I can, even if it’s just providing a listening ear. My thanks to all the team above for creating this area and this community 💜
Hopefully more members will introduce themselves below?
September 22, 2018 at 8:55 am #14566
I am so glad you’re able to be part of our forums now, Katie! 🙂
Thanks for the thorough introductions, I know others will benefit greatly from your experience, kind words and advice that you can offer following your PF journey with your Dad. He was so lucky to have you as his carer, and as are we, as a PF community of patients, caregivers, advocates, friends, family members, etc. Keep us posted on all of your amazing initiatives, and if there is anything we can ever do to help you with those, I can say for me that I’d be happy to!
Sasha sounds like an amazing companion for you, just like my 3-year old golden retriever. Not sure what I’d do without her truthfully, she is pretty amazing and is my personal smile-generator.
Thanks again for writing Katie!
September 25, 2018 at 9:07 am #14620Patricia HaydenParticipant
Not sure where to post this, so this was my choice. I have PF and am in the process of getting on the list for a transplant.
I experience daily, hot and cold (alternating) body condition. The hot is so hot I sweat and the cold is such I put on more clothing to stay warm. Does anyone else experience this. It happens almost all the time and it is most irritating.
Also, feet so cold they feel like ice.
Here are some of my meds,
losartan 50 mg tablet
mycophenolate 360 mg delayed release tablet
metFORMIN 500 mg tablet
atorvastatin 80 mg tablet
predniSONE 2.5 mg tablet
Non of these suggest side effects of the above conditions.
Thanks for any input out there.
September 25, 2018 at 3:28 pm #14638
Glad you posted this, and welcome again. I’m very glad you’re part of our PF forums and that the technical glitches were finally resolved 🙂
Hmm, I didn’t know this was a possible IPF-related issue in terms of the hot and cold feeling. I also get this, and it seems a lot worse in the last few months than ever before. I was diagnosed a little over 2 years ago now but this is only something I’m now noticing. Thanks for sharing that, although I’m sorry it is also your experience and I couldn’t agree more: it is very irritating! Sometimes at work I complain that I’m too hot, and the next minute I am too cold and my colleagues must think I am nuts.
My feet and my fingers/hands are always cold and this must be due to the reduced oxygen getting to my extremities. I find my feet also swell a lot lately, and my legs too. Do you ever get this? I thought it was just in response to a recent flight I had, but they still seem ballooned with fluid.
I am on some overlapping meds as you but not all of them, so I’m not sure I can be helpful for an explanation of the side effects. Hopefully someone else can provide you with some insight. Thanks again for writing, glad you’re here.
September 25, 2018 at 12:35 pm #14628Lesley ScheerleParticipant
Hi Patricia: I’m with you on this. I too have the hot-cold demon. I wear an extra topper which I probably put on and off several times a day. Such a drag! And, like you my feet feel like they’re in a freezer – even when I’m boiling. I was started on prednisone 50mg. and titrated down to 10mg. over a period of nine weeks. I’m still on 10mg. The only side effect I experienced was shaking hands, and that still continues on the lower dose. After my next 6min. walk test, both with and without oxygen, my Dr. has said he might be putting me on a different drug. I sure hope the shakes will stop then because at present my writing is so squiggily I hardly recognize it. It’s even being a big pain in the neck using the laptop keyboard! Oh well, things could be much worse as all our fellow IPF’ers know. Wishing for a miracle, Lesley
September 25, 2018 at 3:31 pm #14639
Thanks for writing – it is so great to hear from you! How are things going for you?
Sorry to hear you can also related to this hot and cold mix up that both Patricia and I seem to be having. It must be related to the lack of oxygen, although I’m not sure where getting hot would come from in terms of that. I wonder if this is a side effect of longterm Prednisone use? I’m not on Prednisone so not sure how this could be applied to me, but who knows. I hope the shakes stop for you as well Lesley, and that if it is warranted by the doctor, he/she puts you on a different medication. I dislike Prednisone personally but I know it works for many of us, and that is the most important thing. How are things for you otherwise Lesley? Gearing up for the winter months?
Take care and thanks for touching base via this topic thread!
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