Good news, bad news?

[Aurorastar_]

My title is what the doctor came in and said after the results today of my echo. (Which ended up being an "active" echo) which made more sense to me. The doctor said they know my heart is fine while resting, so he wanted to test me while I was up moving, coughing, and walking.. During the short walk my OX levels dropped to 83! Ugh. This is my life. I can't move without such a steady drip. I'm 97-100 while resting/ moving slowly. Can any of you tell me different things that can make OX levels drop so dramatically, so fast? (In about 2-3 minute walk) I'm only asking because today I was told the shunt opening is SO small In my heart, it's causing no problems. That's where he said "good news,bad news" because he said sometimes the heart is easier to fix than other things. Meaning shunt openings I'm sure. Because I know the heart is a HUGE deal! So I either have a lung/ whatever causes OX levels to drop problem. Still at square one. After 10 months and 32 doctor appointments yucky!

Thanks guys, this group means so much to me. Wish I could give more advice to others, but it's hard cause I don't even know what half this stuff means! :/ *Still learning

God Bless!

[sassy59]

Wishing you well Aurora and hope you can stay upbeat if possible. Xxx

[Hidden]

You have two process when breathing fright flight mode

I call it kick ass mode as thatis biological metabolic breathing reserve process THAT we all have

I guess as sats are dropping so much and its not heart IS your lungs shot as you dipping into reserve kick ass mode.

I have done few post that are public with videos links that talk about mechanical breathing and metobolic side.

youtube.com/watch?v=Xp0o19g...(Not working as expected?)

[Aurorastar_ in reply to Hidden]

Thank you Jeff! Breathing tips are helpful. I feel like I've been in high fight mode for 10 months now. Whatever I do have, isn't getting the best of me. It's definitely slowing me down. But hey, that just means I leave my house earlier to give myself more time. End results is, we STILL get there!

Thanks for your support! Have a great day!

[Hidden in reply to Aurorastar_]

Hi Auroastar did you say you was on oxygen ?

Next time breathless try just a swig of original lucozade no more than a swig and let us no if takes breathlessness away.

Athletes use it to speed up recovery times after work out.

Just one swig mind and thats providing you not diabetic

[Aurorastar_ in reply to Hidden]

Only thing I'm seeing on Lucozade is in a sports drink? Is that what you're referring to?

Thanks!

[Hidden in reply to Aurorastar_]

Hi yes

[Katinka46]

Thanks Julie. We are genuinely interested in your story, we like a puzzle! And are very sympathetic about the difficulties. I assume that the echo did not show pulmonary hypertension? And if your PFT shows a restrictive disease presumably pulmonary fibrosis has been ruled out?

Hmmm.... Much head scratching.

Your doctors do seem to be committed to finding answers.

All the best and can't wait for the next instalment.

Kate xxx

[Aurorastar_ in reply to Katinka46]

Hi Kate, so many of my symptoms seem like pulmonary hypertension and that was definitely mentioned several times. But nope, my heart looks great. Echos look great.

Trust me, I like a puzzle too lol but also like the finishing result

I'm finding peace with its just not my time to find out yet. I don't know why.. Maybe I still have something to learn. I know one day (hopefully soon) I will be posting a diagnoses

And my CT scan isn't showing PF, it's been completely clear until just a couple weeks ago, when it showed the "ground glass effect" which had moved from the upper lungs to the bottom? So weird.

Have a blessed day!! 🌻

[Katinka46 in reply to Aurorastar_]

Thanks. You are very positive.

Well done. I believe you will eventually get answers.

All the best and keep pushing.

Kate xx

[Jaynair]

Wish you well and hope you get some answers soon - very frustrating when you don't know what's going on. x

[mulla3224]

Thinking of you and your family at this sad time.