Hi all, my finger probe hits O2 @ rest: 90- 95/6%; moving around short distances ... it dips to mid 70s ... returns to above when seated. Constant dry cough on exertion. I do have ILD - part of it? Have noticed it started 9 months ago. Due to see Papworth ILD consultant soon. Anything to worry about? Anyone else have this?
*Forgot to mention that my heart rate at rest is always over a 100 bpm increasing to 130s when moving around. Thank you.
Hi, GingerCatJayne. Wishing you all the best with the Papworth ILD consultant when you see them. Hopefully they will be able to explain what is happening and find ways of improving your blood oxygen levels to help you.
HiI have iPf and my sats do the same and a raised heart rate and am on beta blockers.Are you on oxygen?
I am supposed to be on 4 ltrs 16 hrs a day but at present 1.5 24 hours a day which works for me.I would say
You definitely need oxygen therapy.
See what Papworth say.Good luck
I'd say if you have the same problem with your sats you should then start using your oxygen as prescribed 4 litrs 16 hrs a day. Obviously the 1.5 in 24 hours is not working for you.
Thank you. Wishing you all the best
Hi GingerCatJayne, great you are seeing the Papworth ILD consultant soon, you should definitely be discussing what you have described with your sat dips when moving around and also the 100 -130bpm resting and active.
Not knowing how soon your soon is before you see the consultant, perhaps give the helpline a call on Monday to seek their advice also.
Take good care and best wishes.
Hi, yes, mines pretty high too. Lately. Think I'll have to tell Doc, next week. I've heard that Papworth is the best Hospital for Lung problems. Wish I lived near it.
Anxiety can cause raised heart rate I know from my own experience. I tried square breathing which definitely helped. Take care jct1
You too
Hi GingerCat, I am also under Papworth and have just received an appointment for December. I live in Essex so have to travel a bit, its well worth it though. My sats also do peculiar things and I am a bit in the dark about levels and things. This will be my second appointment, I also have ild but no other diagnosis yet. Am hoping to learn more in December. The staff are brilliant, facilities excellent, cannot fault the place. Good luck with everything, keep safe and know everyone is here for you - I get so much support from this site. xxx
Hi, Papworth is very good. I was diagnosed with ILD in 2016. On Mycophenolate, an immunino suppressent. Good luck to you.
hi kimiu i am also in essex and go to papworth it is quite a journey. I have pulmony fibrosis and i am on oxygen my sats change when i do anything. I was just wondering if you see anyone else for your condition other than papworth as i was discharged from southend hospital and just see the team at papworth. thanks.
Hi! Nice to meet another Essex Girl. I don't see anyone else at the moment, I have phoned the nurse a couple of times and they're amazing if you have any problems. I am being referred to mental health as I have depression, that will be with a GP referral. I don't know if its the steroids I'm on but I am having lots of problems with mental health lately, can't sleep etc. How many times have you been to Papworth? x
I have been to papworth 6 times last time was july. xx
That's a lot how are you doing? x
Sounds like you have heart issues, too. Have you had a full cardiac work-up?J
Not yet.
I hope that you are scheduled for a cardiac work-up. J
What is a finger probe? Do you mean a clip on finger sp02 bp and oxygen saturation monitor? If so not sure how you wear that when moving around and manage to get readings from it accurately as for readings with one of those the person is supposed to remain still with arm level to heart. I'm interested to know. My sp02 levels at rest with my clip on finger monitor are roughly the same as your own 93 - 97 my heart rate at rest goes crazy anywhere from 120 + bpm dropping to 52 bpm and jumping all over the place. Never been able to wear the finger monitor when active it is cumbersome and would fall off but have taken readings immediately after moving around and my heart can hit over 200bpm which it was doing at rest when they intubated me. Spo2 levels fluctuate but after moving about having been breathing more heavily go up to 98 and have had just one time not long after purchasing the monitor a while after my departure from hospital it go to 100 before dropping to 98. I was told by a cardiologist and others seen in hospital plus gp practice that my heart doing 100 + bpm may now be the new normal for my heart at rest due to lCU and heart failure which has now apparently gone caused by unknown, nameless, unfound in bloodtests virus/infection but seen with eyes by my bodies reaction. Was told by cardiologist that they knew something there but it was unfortunately something they didn't yet have a name for it to give me. And futher was explained about just how many viruses and bacterias there are that medical science hasn't looked into, are or aren't aware of and some don't have names. Just unknown virus/infection/bacteria not always showing up in results because not known about/recognised but eyes tell it is there and they treat as they would know viruses/infections/bacteria. I've seen the massive list of blood test results l had done in hospital all came back relatively normal and as normal yet l was critically ill and had been extremely unwell at home leading up to my hospital admission. I wasn't admitted for heart failure, that's what l woke from my coma with. Was admitted due to a massive asthma attack that made them first think l was having a heart attack and about to kick the bucket. I wasn't wasn't, but my heart unbeknownst to me l've since been told had stopped beating briefly due to over inflated lung that shocked it into beating again as it deflated or something similar to that. Wish l'd thought to record all that was said in the consultations l had. Now l only remember fragments. Apparently my massive asthma attack saved my life because at home my body was slowly shutting down and was told l'd have just died most likely in my sleep. Hope you are doing ok and remaining at your healthiest possible. x
Update - I saw rheumologist today 
Has this happened to anyone else?
Update for all interested 
Where is the best place to sell an Oxygen Concentrator please?
Support for my partner 
