Back to drawing board (of more tests)

[southcats]

Hello everyone again - I just had my pulmonary rehab assessment and was really looking forward to starting it, but, as I was doing the 6 minute walk, my oxygen levels dropped to 85 and heart rate was quite high (didn't make note of the actual number), so much so that the physio said the results were worrying for a person my age, suggested I may have to go back to hospital for additional tests, including cardio and that it may be safer to do the pulmonary rehab at the hospital too - admittedly I was walking fairly fast (much faster than i normally do, eg when going shopping or going for a walk), but I'm really worried now - has anyone else had a similar experience? What happened?

(ps I've got emphysema, moderate/severe)

[Badbessie]

I think this is more for your safety than anything else. Obviously they are not going to put under stress physically until they are sure it is safe. Look at it as free health check.

[southcats in reply to Badbessie]

thanks for this, badbessie, my 'default' reaction is 'panic!' then 'panic-some-more!'... will try and not dwell on it too much

[Badbessie in reply to southcats]

Yes the default panic reaction is pretty normal for me at times. But as you was out of your comfort Zone it's better to be safe and let them make sure you are ok first.

[Carnival567]

Yes I had a similar experience my SATs went down to 84 and I nearly collapsed, but I have serious heart problems too so this wasn't altogether surprising. I have bronchiectasis/obliterative bronchiolitis/pulmonary fibrosis. I have been having real fun as I have atrial fibrillation at the present. The saga continues from yesterday.

[southcats in reply to Carnival567]

Sorry to hear this, carnival567 - is there medication for the heart problems? Is it helping at all?

[Carnival567 in reply to southcats]

They are running out of ideas since the most effective medication has caroused the obliterating bronchiolitis and pulmonary fibrosis. I suspect a frightfully polite disagreement is taking place between two consultants. I shall just be glad to have atrial fibrillation sorted out and go on from there.

[Carnival567 in reply to Carnival567]

Where did caroused come from? Predictive text can be very odd - should be caused.

[Katinka46 in reply to Carnival567]

I want a 'like' button that expresses sympathy not 'like'. But just wanted to say that I am with you Carnival567 on this. Zebras (I think you are a Zebra crossed with a Unicorn!) need to stick together.

K x

[Carnival567 in reply to Katinka46]

Interesting cross breed!

[Katinka46]

Hmmmm.... well, I've had something similar. At the assessment for PR I was stopped from completing the incremental shuttle walk because my heart rate was too high. My oxygen sats can drop if I exercise for more than about five minutes, but it didn't get to that. I did five weeks of the PR course, but my symptoms were getting worse all the time, especially chest pain. After 10 sessions I was not recovering at all between them. So I spoke to the physio who runs it and she immediately said she would not be happy for me to continue, and she wrote to my GP and consultant. In retrospect I think they should have been more cautious after the assessment. It took me several weeks to get back to how I'd been before I started PR. So it seems that they are being prudent in your case.

Good luck

K x

[southcats in reply to Katinka46]

Shame it took five weeks :S ... I didn't expect my lungs/heart get so stressed when I'm just walking fast, I think that's what's the worrying thing...

[Carnival567 in reply to Katinka46]

In the interests of cussedness I tried to walk round large pet shop to choose a new harness for Bracken. I could hardly get back to the car and had horrible pains in my upper back. That was half an hour ago and I have only just recovered. Good mod I wasn't driving.

[southcats in reply to Carnival567]

ouch, sorry to hear that... It's OK to slow down sometimes (easier said than done, I know!)

[Carnival567 in reply to southcats]

Yes indeed! After yesterday I was wondering whether the nurse thought I was being lazy.(nobody else has made me feel like that)

[jacqui7 in reply to Carnival567]

always get a trolley in shops, i can walk quite a way with one, so legs can get exercised, the fridges cause a bit of a problem but a scarf soon sorted that out. i call them little challenges.

[stone-UK]

Hi

I had similar test, sats dropped to 83.

Tried me on oxygen first one lpm then two lpm oxygen levels remained fine at that.

Proceeded to start pulmonary rehablitation. With Ambulitory oxygen at 2lpm.

It's referred to as oxygen desaturation on exercise.

At the time I was stage three, emphysema.

Already had both ECG test both fine.

If heart rate is 120 or above then any test are stopped until reduced.

The test it self may have been to daunting, which can increase heart rate and lower sats,

[southcats in reply to stone-UK]

this is really helpful, thanks, stone-UK x

[southcats in reply to stone-UK]

Can I ask - do you use the oxygen thing only when you exercise? Also, you say you were stage 3 emphysema at the time, which stage are you now?

[stone-UK in reply to southcats]

Hi

I was border line 3/4 now Stage 4 use Ambulitory oxygen 4lpm for walking and exercise.

[Carnival567 in reply to stone-UK]

Are you on long term oxygen as well, because the more I read the more peculiar her reasoning seems

[stone-UK in reply to Carnival567]

Hi

No only Ambulitory

[Carnival567 in reply to stone-UK]

Interesting, she told me I couldn't have that because I am not on LTOT and also that because I didn't finish the 6mwt I couldn't have it. I must admit I broke down at this point, which is unusual for me, and said that this logic condemned me to being inactive. I am down for PR in September if the cardiologist allows, but the way I am at present I can't see me managing it.

[southcats in reply to Carnival567]

stone-UK what's ambulitory oxygen? Carnival567 what do you mean by this "It doesn't help that my heart rate doesn't go up much because of all the drugs I am taking to prevent" - I thought it was good if your heart rate didn't go too high?

[stone-UK in reply to southcats]

Hi

Ambulitory means walking.

So I only need oxygen when moving around.

[Carnival567 in reply to southcats]

When you exercise your heart rate tends to rise unless you are super fit like an athlete. Because I have persistent paroxysmal atrial fibrillation, that is my heart starts beating erratically and irregularly and very fast from time to time I am on lots of drugs to try to stop this happening. This means that makingan effort, that is exercising, doesn' affect my heart in the same way as other people who are not in this situation. My af is causedby the heart condition I have had since I was born. However af can be causedby other conditions like COPD or severe stress. My husband, who is active and fit, had an episode of af last year when he was dxd with prostate cancer and back problems just as we were movinghouse. Fortunately he has not had any more episodes.

[Carnival567 in reply to stone-UK]

Yes I thought that was the case. That is why I couldn't understand her reasoning and today I explored a bit further and discovered that the British Thoracic Society does actually suggest oxygen for people who desaturate on exercise. It doesn't help that my heart rate doesn't go up much because of all the drugs I am taking to prevent af.

[shadow4me]

I think everyones does drop a bit on exercise but that does seem quite low ,When I went to rehab I hated the walk test everyday has they seemed to want you nr to jog lol .I like you cant walk fast for long periods and thought surely its better to go at a pace you can handle xx

[southcats in reply to shadow4me]

yeah, i was reading about the oxygen levels & exercise once i got home, it was 95 before i started, then, as i was walking, dropped down to 85 possibly even 83, then, once i stopped, it went up to 96... i think i took the 'go as fast as you can' a bit too literally :S

[Billiejean_2]

I dropped to 78 and I felt fine, not even breathless.

[southcats in reply to Billiejean_2]

and the physio was alright with that too? there's soooo much i don't know about emphysema/how our bodies work and age etc!

[Billiejean_2 in reply to southcats]

Oh no ! Nobody was okay with it. I had a bad infection at that time and it took a long time to clear. But once it was cleared my 02 came up to acceptable levels. About 89 on exertion and around 95/96 at rest.

[dall05]

Hi Southcats

When doing a 6 minute walk test at one of my 3 monthly transplant clinics I recorded 54 sats off oxygen.

Up to that point I had always done my 6 min walks off oxygen even though I was using ambulatory oxygen. After this low of 54 it was decided to use my oxygen from then on which I didn't argue with 😊.

Having a low oxygen saturation reading for a short length of time seems pretty harmless but would be harmful if it went on for to long.

[jacqui7]

hi mine drops to 69 when exerting myself, i too walk and do most things at ninety miles an hour. just starting to slow down, i do panic breath which is what i am try to slow down. have bought a treadmill, just need a shelf to put laptop on so i can put a film on while walking, takes your mind of your breathing, doing two and three minutes at a time while waiting for self. do leg exercising, respiratory nurse had an exercise dvd sent to me which is great. i am on oxygen when i need it. not enough oxygen in body, been saying diesel cars are the problem, for years when driving i always have problems the next day with my breathing. gentle exercise does help.

[Malhig]

Hi Southcats, I have pulmonary fibrosis and I am on oxygen 6ltres for walking. I am in the middle of pulmonary rehab and it is really helpful so I hope you can do it. I had problems with my levels even on 6 litres so they upped it to 8 litres for the exercise classes. The physios running the classes are very good and they tailor the classes to keep your levels okay. Good luck

[southcats in reply to Malhig]

do you use the oxygen every single time you go out? what happens if you don't?

i got quite freaked at the assessment, or after the assessment, as i've been doing a mixture of strength and aerobic stuff at home (started with 10 minutes on exercise bike a day, now i'm at 20 minutes a day, one day i managed to cover 7.3km!) and i don't get too breathless, my heart beats faster, true, now i'm not sure whether what i have been doing is actually wrong etc :S