mystery Man

[Ronzy]

I gang my last posting was about me being diagnosed with emphysema which I obviously still have.but to my surprise my specialist at the hospital informed me today that it is quite mild and should not make me as breathless as I am 🤪

Great news BUT they can’t figure out why my oxygen levels are so low and my breathing so bad.😱 so they are going to give me another scan but different this time 😵‍💫also another X-ray ,plus oxygen therapy. So here’s hoping they get thing sorted AND CAN FIX.

Any lights on subject anyone else in similar predicament.😵‍💫🤷🏽‍♂️

Very pleased about emphysema tho 😀

The very best to you all Ronzy 🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀

[SheffieldJane]

I would be relieved too. I was reading an article in a medical paper about how taking Pred can make us breathless due to stomach acid/ heart burn. I don’t know if this could apply to you Ronzy.

[posthinking01]

Thyroid hormone deficiency can make you breathless- I was unable to walk more than a few paces without gasping for air - its called air hunger in thyroid circles - I can now walk miles as before now on medication for deficiency !

[Pixix]

Thats great news, Ronzy, very pleased for you…as for what can make you breathless…in my medical history it’s been allergies, asthma &, more recently, Covid. But it can be caused by lack of exercise, of course, which can be caused by being unable to exercise!

[Sophiestree]

This is interesting. Are you out of breath all the time? My sats are consistently low. But I can be just sitting doing nothing. Can go to high 80s And one time flashed at 78 but it was momentary. Not sure I want to tell a doctor as I'm done with medics right now. But my heart can suddenly go to 135 when sitting as well. I should have said, I don't feel out of breath though unless I am walking up hill but the reason I get the oximeter out is my heart feels fast when often it is not a high reading.

[PMRpro Ambassador in reply to Sophiestree]

With oximeter readings like that - you need a bit of investigation!!! Cardiac as well!!!!

[Sophiestree in reply to PMRpro]

urghh I know I have to mention it at some point but it's not all the time so I know if I go it will be normal. It is consistently about 94 but often drops with no activity so I do a load of deep breathing.

[PMRpro Ambassador in reply to Sophiestree]

That could be a reason of course - not breathing well when seated and inactive ... The question remains - why?

[Sophiestree in reply to PMRpro]

I wasn't sure if it was the small cycst I have in my right lower lobe that was causing it or the coronary calcification that was seen on my CT. They stopped scanning my lungs last year but nothing re heart has been investigated

[PMRpro Ambassador in reply to Sophiestree]

Well it should be ...

[Sophiestree in reply to PMRpro]

Urghhh

[Mumdadlove in reply to Sophiestree]

I have this also, my sats drop to top 90’s go up a bit then drop back down, I had steroid injections recently and they kept me in recovery due to my oxygen levels but nobody actually said to do anything as I’m not breathless although sometimes go a bit light headed, my heart rate is always above 100 but again although it’s been commented on no one has actually said what I should do, plus with GCA have so many other things going on that it’s gone to the bottom of the list

[PMRpro Ambassador in reply to Mumdadlove]

Well what THEY should do is get 24 hour monitoring arranged and work out WHY you are tachycardic and breathless.

[Ronzy in reply to PMRpro]

Nooo Tacky ok lungs not bad .oxygen and breathing terrible 🤷🏽‍♂️😱😵‍💫

Thanks I’ll keep you all in the loop . Got excited this morning letter from hospital

Thought it was quick.it was telling me I had an appointment on 3rd of October 😤🥶 all the best ronzy 🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀

[Mumdadlove in reply to PMRpro]

I don’t get breathless, I even ended up a few years ago with something else and they noted my oxygen levels were low, I only know as my husband has slight cold and got the monitor during covid, I had cataracts done and was low then, but no one follows it through

[PMRpro Ambassador in reply to Mumdadlove]

Ooops, sorry, misread that!!!

[Sophiestree in reply to Mumdadlove]

I'm the same in that it's ignored (sats) and my problem re the occasions with the high heart rate is that it doesn't happen regularly or with any pattern so a 24 hr monitor might not show anything.

[Offcut]

I was fighting my GP Practice for many years after moving house and GP's! My last one treated my Heart Conditions and my Asthma with Rescue packs etc. and it all seemed to be working? However, the new practice seems to think all my issues were heart related only. But still prescribed me inhalers? It was not until 2012 that I found I had worked with Brown Asbestos for around 10 years last century! This did spur them on and I had a Full Spirometry test at the Practice. My results showed RLD and COPD which then moved me on to a consultation at my local hospital with a Heart and Lung appointments. My issue has always been once rested I am pretty good it is only when I do anything? This was not picked up for some time due to the wait time to get into the consultant for initial tests after been rested! I had to be very firm with the lung Consultant explaining it is when I do something mildly strenuous! This moved me onto the Spirometry test in the box and also a Bike test and Jelly on the belly! This showed more of an issue than they expected also it came up with mild Pulmonary Hypertension! I had no idea what that was so researched death. (Do not use Doctor Google) They waited 3 months and I had another Jelly on the belly and it came back High PH! I knew there was a PH clinic in Sheffield and a few in London so I asked if they would refer me to Sheffield. Which they did. 2013 in Sheffield I had a nuclear MRI, CT scan, MRI, Chest Xray, Blood tests, Jelly on the belly and a Right Heart Cath. all in the same day and I was diagnosed with IPAH. WHO Classiii and given meds at the end!

Now I hope you read all of this as I am about to say I am one of 7000 people being treated with this in the whole of the UK so the Odds are you may not have it. But I only got things done by downright stubbornness and insisting they look further! I have multiple Conditions and taking 31 tablets a day to keep me upright

Be Well

[Ronzy in reply to Offcut]

Scary 😵‍💫👍👍

[Ronzy in reply to Ronzy]

But how are you now.

[Offcut in reply to Ronzy]

I am not 100% but with all my tablets and change in lifestyle I am plodding on quite well. It did take many years to get my close friends and family to fully get what I was capable of doing. Considering my Local Hospital told me I probably had 6 to 9 years! They got that wrong! 😀

[DorsetLady PMRGCAuk volunteer]

Good news on the emphysema front…sorry no advice on on breathlessness, but hope it can be sorted..

[Ronzy in reply to DorsetLady]

Thanks

[Ronzy in reply to DorsetLady]

that’s what I think as has emphysema is a non reversing thingsy 😵‍💫 thanks

[pink123floyd]

Hi Ronzy see if they can do a targeted lung scan I'm due on 15th Oct for my next one bit uncomfortable but that's about allthats how they found a small collaps in my bronchi

[Ronzy in reply to pink123floyd]

Thanks that’s what they will do ,then what if a collapse.?😵‍💫 thanks.

[Ronzy in reply to pink123floyd]

👍👍👍🤞think they will how are you now.

[pink123floyd in reply to Ronzy]

Sorry for late reply been having huge birthday party for me and my son and grandson we all come of age😊 as in 30 50 and 70 😅😅 like yourself I have 3 lung problems but have very good consultants and will check if my collasp is still stable and I will know more then, hope you have some good results to share next time ,take care.x

[Ronzy in reply to pink123floyd]

what can the do 🙋🏼‍♂️

[pink123floyd]

To be honest I don't know yet only small thing I heard was that it was there & showed up on the scan so until I see my consultant I won't know sry can't be more help.xx

[Ronzy in reply to pink123floyd]

thx were like musherums ,allways in the dark

[pink123floyd in reply to Ronzy]

So true like starting a story but never hearing the end bit of it😁