Remote Monitoring Research

[Wozzatim]

Hi All,

I don't post often but drop in most days to read and learn from other's on this great site. I was diagnosed with emphysema and asbestos pleural plaques in 2007 and obviously my condition has deteriorated since then, my current FEV is around 25% so I'm pretty limited as to what I can do, I get out as much as I can, usually down to my local park which is about 1km away and takes me an hour each way but they have a lovely cafe there and I can rest for a while. I have to stop about every 20 metres or so to steady my breathing but I'm in no hurry so it doesn't matter. The reason for my posting is to tell people about some research that I am involved in and how it could affect some of us. Currently I am under the Royal Free Hospital and for a 6 month period I am wearing a Garmin Vivoactive wrist watch which is connected to my mobile and monitors everything I do as well as heart rate, pulse, SPO2, and a host of other data, once a day I record my Oximeter readings and also use a hand held spirometer for my FEV/FVC and a couple of questionnaires to fill in. The data is then uploaded to the research team so they can, at any time, see exactly how I'm doing and how my lungs are working. The point of the research is to establish whether it is financially viable to monitor my COPD remotely and thus do away with me having to have face to face appointments with a Consultant or Doctor and having Lung Function tests etc. I'm sure that this type of monitoring is the way forward as are telephone appointments, video consultations and the various remote interactions we now have, I done my last Pulmonary Rehab on zoom. I believe the equipment I use costs the research team in the region of £750, so it's not cheap but I'm happy to be using it and it certainly gives me a feeling of control over my condition knowing I can check my lung function at any time. Is this the way forward..

[CDPO16]

That is very interesting Wozzatim. Let us know the findings in the longer term.

In the meantime you are doing incredibly well with your walk to your local park. Long may you be able to do it.

[beattiebill in reply to CDPO16]

Thanks for the encouragement CDPO16, I'm waiting for the weather to change a bit and then I can get my little electric bike out again, it only takes me 5 minutes to the park on that and I can enjoy a slow stroll around the park with the time that I save, and away from traffic fumes.

[Morrison10]

Yes very interesting, thanks

[Morrison10 in reply to Morrison10]

I’m on PCD Covid research by Bern university

[beattiebill in reply to Morrison10]

Thanks for the reply, I will update when I can.

[Hidden]

Excellent post, but I couldn’t help a wry smile at

“The point of the research is to establish whether it is financially viable to monitor my COPD remotely and thus do away with me having to have face to face appointments with a Consultant or Doctor and having Lung Function tests etc. I'm sure that this type of monitoring is the way forward …..,,,,”My experience is that they have already done away with those things around here.

[beattiebill in reply to Hidden]

Thanks Don, I sometimes find that visits to my Consultant consist of a brief " How are you". As we are both railway enthusiasts it then generally develops into a 10 minute chat in that vein, although he's diesel and I'm steam. There isn't a lot to discuss in regards to health, my lungs are what they are and isn't as if they can do anything. Seen my doctor last week for the first time in 2 years though.....

[Hidden in reply to beattiebill]

I'm pretty much the same Bill. My doctor retired a few years ago and I have not yet seen the lady replacement. A respiratory nurse sees me every now and then to ask how I am. She is such a nice lady ( I can't tell whether it's the same one since mask wearing) that I wouldn't dream of saying other that "fine", in between my coughing bouts. My diabetes nurse just keeps sending me for blood tests and repeat blood tests. I think if you show any signs of independence and some capacity for looking after yourself they leave you to get on with it and really that suits me. I have my rescue pack which is used 3 or 4 times a year and if I ever have serious problems I'd dial 999. The only monitoring I experience is here on the group. 😊

[Patk1]

Well done on keep going,despite difficulties.im the same( but different diseases).had appointment with ventilation team cpl wks ago & discussed this.he said its so important both individuals present+ future health.yr monitor sounds fantastic x

[beattiebill in reply to Patk1]

Thanks Patk1... As I said I get a lot of assurance from being able to keep an eye on my statistics. The main one is the FEV as that, for me, is what tells me where I am ( stage 4 ) and allows me to see if ( when) it deteriorates.

[skischool]

Excellent news and this shouldn't be a trial but rolled out on a national basis and if used correctly would save the Nhs a fortune.It is almost impossible to get an appt with a Gp these days and if you are prepared to undergo remote surveillance/monitoring and don't feel that it infringes on your personal privacy i am all for it and would accept it tomorrow if it was offered.

Best wishes

Ski's and Scruff's

[Hidden in reply to skischool]

I don’t see how would save the NHS a fortune to stop doing something they have already stopped doing. But I agree it should be started immediately.

[skischool in reply to Hidden]

I am grasping at straws Master Po and it would definitely save me a fortune if i had to use my landline to phone the Gp and got put on hold for 30 mins or more.

😂

[Hidden in reply to skischool]

But you would be relying on your wristwatch to monitor your condition correctly and pass that data to your mobile phone to pass to some central point for processing. Sounds both expensive and dodgy to me but certainly wonderful. 🤔

[skischool in reply to Hidden]

The technology exists and is extremely reliable but the weakest link is the operatives that monitor it and therein lies the problem?

😊

[LiveSalt in reply to skischool]

I'm wondering if, big IF, they see something untoward with the stats they would make contact with you or your doctor? Are they just going to suck up your info but actually do nothing about it?

[skischool in reply to LiveSalt]

On a trial probably not but one would hope they would react if they saw an obvious problem in real time and flag it up to the patients Gp or respiratory team to investigate?

[beattiebill in reply to skischool]

Thanks Skischool, As it's at a research stage the data won't be checked on a real time basis, but it lets me know where I am healthwise, I can have a better idea of what's happening. I can check my Sats, FEV, etc. on a daily basis. (I only do it daily as part of the research) but certainly the FEV/FVC is handy given that I haven't had a lung function test in the past 2 years. I have an appointment with the Respiratory Team in a couple of weeks and they can see exactly how I've been for the last 3 months from the data on my phone.

[Morrison10]

Yes very interesting, hope it works properly and those who monitor it do so responsibly. I havent seen my GP or consultant since covid came. Because I was born with PCD and children usually died in infancy, there is limited knowledge and resources for testing. Although my current hospital QE Birmingham are interested, I had to go to see Professor of Child Health at Leicester Royal Infirmary for tests that confirmed at age 84 that I was born with PCD! Very strange sitting in waiting with toddlers, and parents wondering if I’m in right place. I was due to go back last year, but Covid makes it too risky. I am happy to support research, do the Berne University questionnaires. Good luck to us all. Keep fighting, Regards, Jean

[Hidden]

Hi, I’m interested in you saying you were diagnosed with asbestos pleural plaques in 2007. Much to my horror, I’ve recently been told I have them too but “not to worry” and “no treatment required” I wish you well with the research side of things, which is what your post is about but would you mind sharing your experience re the APP in particular?

[beattiebill in reply to Hidden]

Hi Sing-Song, With regards to APP, around 2006 I started getting quite breathless on exertion but didn't pay it too much attention as I was on 20-25 roll-ups a day and assumed it was just smokers chest. Towards the end of that year it got steadily worse and my GP sent me for various x-rays and tests and she was concerned about some scarring which had shown up on my right lower lung.. More tests followed to rule out cancer etc and when I was passed to the Thoracic medicine team they said there was pleural thickening on my lower right lung due to asbestos exposure. Having spent most of my working life on demolition and building sites it was impossible to pinpoint where or when this could have happened, but as you mentioned, I was told not to worry about it and to " go and enjoy your life". I stopped smoking at that time and it was only a couple of years later that another consultant started using the word emphysema with regard to my lungs. APP is rarely mentioned, only in reports which acknowledge it's existence as "pleural thickening" and that's all. I don't think the APP contributes that much to my lung deterioration and from what I understand it is pretty much as it was in 2006. Hope this helps Sing-Song and remember I am only giving my personal view as a fellow sufferer.

Take Care

[Hidden in reply to beattiebill]

Hi beattiebill, many thanks for sharing your experience with the diagnosis of APP although I am a little confused as to your user name … are you the original poster Wozzatim ? Doesn’t matter, just wondered 🤷‍♀️ I appreciate you taking the time to reply. Take care.

[Wozzatim in reply to Hidden]

Hi Sing-Song, Yes I am Wozzatim, not sure how I've ended up with 2 names, I suffer from cognitive problems following a ruptured brain aneurism, and struggle quite a bit to make all the pieces fit some days so I often find that I set up things and then forget and set them up again ( and don't get me started on passwords ). Take care

[Hidden in reply to Wozzatim]

Oh bless you ! No worries 😉 Thanks again for replying. It’s very much appreciated. I am trying to find out more about the APP but it’s not mentioned that often.

Wishing you all the best!!

[garibaldon]

Soundsa good idea, Wosstim, i wouldn’t mind doing that I could do with a new watch.When our Asthma nurse retired so did the Spirometery equipment. Annual doctor phone reviews became the norm. Followed next year by the nurse doing the review . Last time a guy from the pharmacy did it. This year maybe the blood lady followed by receptionist then the cleaner

and finally a robotic voice.

It just makes me wonder what will actually become of all this data they will collect, Wozzatin,

probably all rust away in some data bank somewhere whist they crack on with the next faceless project. Good luck anyhow

[Alberta56]

That sounds very interesting.

[beattiebill]

Very likely garibaldon, I know what you mean about the Spirometry tests, my last one was almost 3 years ago. As I understand it the hospitals and surgeries stopped doing them because of the risk of covid being passed on by all the lung patients forcing the air out of their lungs. Take Care