@davidaswain
-
David Swain started the topic David Swain – a brave fight against IPF in the forum In Loving Memory 2 years ago
I’m sorry to inform you that my husband David Swain died on the 17th May. He had a stroke resulting from the IPF and died the next day. Now rests in peace.
-
David Swain replied to the topic No Oxygen and extremely bad breathing in the forum Diagnosis Information and General Questions 2 years, 1 month ago
Hello Vincent,
I’m really sorry to here about your Mum and her experience with getting treatment and oxygen. I’m in the UK and have IPF and am on oxygen. As IPF is supposed to be a rare disease, knowledge and treatment has been centred on certain hospitals as “Centres of Excellence” for Interstitial Lung Disease patients (including IPF). I’m fo…[Read more]
-
David Swain replied to the topic Fluctuating Body Temperatures – Cold & Hot in the forum Using Our Forums 2 years, 2 months ago
Hi All,
I have been interested to hear that others are suffering from temperature problems. For some time now I have been experiencing symptoms of overheating, particularly in bed. This started with a burning sensation on my feet and ankles and then on my upper body as well, although I didn’t have a temperature. I mentioned this to my r…[Read more]
-
David Swain replied to the topic Taking time off from esbriet in the forum Esbriet (Pirfenidone) 2 years, 5 months ago
Thanks Regina. It’s interesting to hear you had those side effects, even though they’re not the same as mine. I think I’ll try stopping for a couple of days, as the nurse said that would be only way to tell. In any case, I think I’ll put up with the burning in order to stay on ESBRIET. Happy new year to you and all who read this.
-
David Swain replied to the topic Taking time off from esbriet in the forum Esbriet (Pirfenidone) 2 years, 5 months ago
Burning Skin sensation
I started on Esbriet recently and just finished titration up to the full dose. Fortunately, with non of the usual side effects. However, I’ve also recently started feeling a burning/hot skin sensation in my feet and owner legs, also on my upper body to a lesser extent. I wondered if this is a side effect of the Esbriet. My n…[Read more] -
David Swain posted a new activity comment 2 years, 5 months ago
Hi Mark,
Thank you. I’m pleased to say, the company I’m talking to won’t supply the equipment before they’ve talked to my consultant. I don’t think this will happen quickly because, he is so occupied in the hospital with COVID. -
David Swain posted an update 2 years, 5 months ago
Hydrogen Therapy.
I’m a 78 year old male, with severe IPF, diagnosed in January 2018. I’m on Esbriet and oxygen.
I’ve been told that breathing hydrogen or drinking hydrogen enriched water is beneficial for many chronic diseases including lung conditions. I’m rather suspicious that it may be a scam.
Has anyone heard of this or any knowledge of it, please-
Hello David, I’m sorry but I have never heard of the treatment you writing about. Please consult with your physician regarding this treatment. Take care, mark.
-
Hi Mark,
Thank you. I’m pleased to say, the company I’m talking to won’t supply the equipment before they’ve talked to my consultant. I don’t think this will happen quickly because, he is so occupied in the hospital with COVID.-
Hi David, I hope your consultant stays safe and he is able to meet with you soon. Best wishes, mark
-
-
-
-
David Swain replied to the topic Acid Reflux and IPF – should I have an operation to cure acid reflux? in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 7 months ago
My thanks to everyone who has replied and supplied such useful information on your own experiences with acid reflux and fundoplication. In view of the mixed comments I was of two minds whether to go ahead. However my consultant Respiritory dr has now strongly advised against it due to the relatively advanced stage of my IPF. He said the risks are…[Read more]
-
David Swain replied to the topic Acid Reflux and IPF – should I have an operation to cure acid reflux? in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 7 months ago
Thanks for your replies Malcolm and Anne.
I’m sorry to hear your fundoplications did not result in any significant improvement. I had a discussion with the anaesthetist today who told me off the higher than normal risks, due to my PF. I will now have to consider whether to continue. As a matter of interests, do you think having the fundos gave a…[Read more] -
David Swain replied to the topic Acid Reflux and IPF – should I have an operation to cure acid reflux? in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 7 months ago
Hi Susan. I’ve tried double doses of PPIs including Omeprazole; tried to find dietary triggers; tried not eating in the evening. Nothing seems to work. So that’s why I’m considering surgery.
-
David Swain started the topic Acid Reflux and IPF – should I have an operation to cure acid reflux? in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 7 months ago
Acid Reflux operation and IPF.
I was diagnosed with IPF 3 years ago. For many years I have suffered an acid taste in my mouth, which is worst at night. This has now been finally diagnosed as acid reflux. I believe that this is the cause of my IPF, due to the effect of the acid vapour on my lungs.
I am considering having a surgical procedure c…[Read more]
-
David Swain replied to the topic Ofev UK in the forum Ofev (Nintedanib) 2 years, 11 months ago
Hi Charlene. I’m in UK. I’m went on OFEV last October and was told that both OFEV and Esbriet can only be prescribed if FVC is less than 80%. In addition both drugs will be stopped if there is more than 10% decline in a year, or FVC falls below 50%. If one of them doesn’t work or cannot be tolerated, you can be switched to the other, as long as FV…[Read more]
-
David Swain replied to the topic Do you take OFEV? Take our poll! in the forum Polls & Quizzes 3 years, 6 months ago
Hi Charlene. It’s lovely to hear from you again. I’m still in England, but booked to go to NZ for 2 months on 10 January. We went last January and had a wonderful time. It’s so nice to leave our winter behind to enjoy beautiful Summer temperatures and to see our son, his wife and two young granddaughters.
I’m a bit apprehensive about oxygen…[Read more]
-
David Swain replied to the topic Do you take OFEV? Take our poll! in the forum Polls & Quizzes 3 years, 6 months ago
I’ve been on 150mg twice a day for 6 weeks now. Thankfully, no side effects at all.My latest spirometry test showed only a marginal 1% decline from 75% to74% FVC and 45% to 44% DCLO, from 3 months ago. So I guess that it good news. However, I am feeling more breathless and tired, so that rather goes against the test results. However, it’s ear…[Read more]
-
David Swain replied to the topic Aloha from Hawaii in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 8 months ago
Hi Charlene. I’m so happy for you that you made it to Hawaii. What beautiful photos! Wow, swimming with dolphins and all the other activity – great. Make the most of it and treasure those memories.
I’m interested to know if you used oxygen during your long flight. I’m flying from UK to New Zealand again next January. I’m not on oxygen, so didn’t…[Read more]
-
David Swain replied to the topic Laser Therapy Results in the forum Pulmonary Fibrosis Awareness & Advocacy 3 years, 8 months ago
Hi Steve @steve-dragoo
It’s good to hear that you seem to be doing OK on your long stay in the Philippines, even without the laser treatments. Have you had any PFTs while there or is it just a general feeling? Personally, the laser does not seem to be helping as my PFTs are worse and I’m due to see a nurse on Tuesday about starting med…[Read more]
-
David Swain replied to the topic Laser Therapy Results in the forum Pulmonary Fibrosis Awareness & Advocacy 3 years, 9 months ago
Hi John ( @caneelbay1 ) I’m so pleased you are still doing well and that Laser seems to be working for you. I have been following Andy Halls’s protocol since April but my test in July showed a reduction in FVC from 83% to 77%. This reduction has meant that I will be eligible for Ofev or Esbriet, as here in UK we are only considered if FVC is belo…[Read more]
-
john styles and
David Swain are now friends 3 years, 11 months ago
-
David Swain replied to the topic Laser Therapy Results in the forum Pulmonary Fibrosis Awareness & Advocacy 3 years, 11 months ago
Hi Steve. @steve-dragoo
It’s good to hear from you again and that things are working out good for you in the Philippines although it’s a pity you cannot find a laser provider.
In answer to your question, all I do is read the oximeter on my finger while undergoing the laser treatment on each lung.
David
-
David Swain replied to the topic Laser Therapy Results in the forum Pulmonary Fibrosis Awareness & Advocacy 3 years, 11 months ago
Hi Dr Andy and John,
Thanks for your helpful comments. I have had a look at the symptoms of pulmonary hypertension and don’t think I have that.
I measured again at my last laser treatment and this time O2 saturation increased on both front lungs, wheras previously it had increased only on right front. So I think that is good and will measure…[Read more]
- Load More
Hi David, I hope your consultant stays safe and he is able to meet with you soon. Best wishes, mark