Annual fit to breath 6 minute walk test completed this morning on and off oxygen. Proof of how oxygen really does help with breathlessness.

[dall05]

The day started with an INR bloods test at the GPs this morning which is back within range at 2.8 so that was a good start and then it was off to see the fit to breath gang to do the annual 6 minute walk test so they can compare against previous years. Its all about facts and figures for the team as they have to provide evidence to the powers to be that their job is worth while so they can keep the PR and follow up fit to breath classes going.

My turn came for the walk of torture, they checked my oxygen sats which were at 93 at rest off oxygen and off I set. They had set out 4 chairs in a circle at a measured distance and all you have to do is walk around these as many times as you can in 6 minutes.

I always do the test off oxygen because that's how I started 4 1/2 years ago so even though its much harder I can compare how my lungs have improved or deteriorated over the years.

Well Dawn shouted out the minutes until it came to 6 . I stopped and she attached the oxometer to my finger while I stood still and concentrated on getting my breathing under control. She held a list up and asked how severe my breathing felt which I replied VERY! between gasps. I then asked what my sats were and she replied 61 and the distance covered was 425 meters.

I was happy with the distance but the lowest I have seen my sats under the same test is 67 so this was a new record an one I could do without.

It then took 13 minutes to climb back up to 93 which was quite a while for me but then it got there and I felt ok so not to much to worry about eh'.

One of the team then asked if I would like to do another test but this time with my oxygen on and set at 4 liters, I think they were experimenting on me and wanted to see what difference oxygen would make under identical conditions. I of course said ok lets do it so after a 20 minute rest I was ready to go.

6 minutes later I had completed more or less the same distance but this time I wasn't sounding like a freight train at full throttle, my sats had only dropped to 74 and I recovered in 3-4 minutes, when she asked how severe my breathing was I said mild so that proved to us all the benefit of oxygen and how it can transform our lives.

We are so lucky to have oxygen supplied free in this country and hopefully this will continue but who knows what cut backs lie ahead of us in these days of austerity.

Are there any other healthunlockeders who have dropped lower than my recorded 61 oxygen saturation's?

I'm just interested to know. .

It seems I have a lot of work to do before I can beat Roger Bannisters 4 minute mile but I'm working on it ok healthunlockeders Ha Ha, plus.google.com/10152331535...

[Billiejean_2]

61 is very low. Do you walk very quickly ? Maybe if you walked at a slower pace you mightn't desat so much. Obviously you won't cover as much ground but that's a seperate issue.

It's great that your oxygen is such a help.

[dall05 in reply to Billiejean_2]

Hi Billiejean, I know I could walk slower but that would only hide whats going on with my lungs. I have always pushed myself to a level that is working me fairly hard and try and cover as much distance as possible in the given 6 minutes. My best distance covered was 497 meters with sats dropping to 67 so I'm now doing less distance with a greater sats drop which is not what I want to see but the reality of it means things are slowly getting worse.

On the bright side I'm still pretty good and aim to be for some time to come .

[Toci in reply to dall05]

My sats are only 74 off oxygen but they have have hit 58 after walking, and that was on 6 litres of oxygen. Unfortunately the oxygen makes no difference to my breathlessness and I cannot turn up further because my carbon dioxide levels are very, very high.

[dall05 in reply to Toci]

Hi Toci, you seem to have a much lower starting point than me, my sats off oxygen sat quietly in a chair average 90-94 but drop quickly when on the move, especially on hills.

I have pulmonary fibrosis which varies from COPD and I get air in and out of the lungs relatively well but don't transfer it into the blood very efficiently.

It seems oxygen is more beneficial to me than others which I am grateful for. .

You have made me feel much better now, 61 off oxygen isn't so bad after all is it.

I have heard of carbon dioxide retainers and how they have to be very careful with oxygen intake. Over the years I have learned how much I can use when I'm burning it through exercise and the oxygen nurses are happy for me to have control of that.

Good to here from you Toci, it seems your the record holder now at 58 sats, sorry about that .

[Toci in reply to dall05]

Not as sorry as me!

Glad you are doing so well. x

[dall05]

Just did a check on my sats while cooking a curry, off oxygen of course to avoid a mushroom cloud over Malvern. Its was 89 which is ok for an athlete in training I guess .

When Roger's on his zimmer I'll take him on but its gonna be close, very close. Ha Ha. x

[frose]

Sorry it wasn't better news, Tony, especially after all your hard work on exercise. Any news of a new lung on the horizon?

[dall05 in reply to frose]

Hi Fern, I'm not to disappointed as things vary from day to day and I still covered a decent distance at 425 meters. The oxygen levels are a little concerning but then I do have pulmonary fibrosis which does cause desaturation under load. It varies from COPD in the fact I have no problem getting air in and out of my lungs, it just doesn't get into my blood when its in there due to heavy scarring of the alveoli.

I'll keep on exercising though as I'm pretty sure things would get worse more rapidly if I sat around and rested instead.

As for the new lungs the wheels are turning slowly as usual, I'm not back on the list as yet as this bum cheek abscess is still not completely gone. Its tiny remains have to completely disappear before the transplant surgeons will be happy, their a fussy lot it seems.

There's no panic for the transplant just yet as I'm feeling pretty good even though my sats have dropped to a new all time low.

Tony x

[frose in reply to dall05]

Glad to hear you're so cheery - as always! Get your bum sorted!!! 😉

[dall05 in reply to frose]

It seems that Worcester and Birmingham find it difficult to communicate so the wheels are in motion for Birmingham to take over dealing with the Bum problem as well as the Transplant. Maybe this way they'll finally be able to talk and make a decision.

Seems crazy to me because its all but healed up but the letters Birmingham have received from Worcester are poorly written and don't contain the information that is needed for the transplant surgeons. Its a good thing I'm pretty stable or they would probably get to meet my angry side Ha Ha.

[Offcut]

My last lung test from my GP's was 2012

[Hungryhorse63]

Brilliant😃keep it up the more you exercise the fitter you become and the less oxygen your body will need xxHH

[dall05 in reply to Hungryhorse63]

Yes HH, its all about being more efficient with the oxygen you can get into your blood. Considering my sats I am pretty active but have to get my pacing right or everything grinds to a holt very quickly.

[Hungryhorse63 in reply to dall05]

So do I lol. I will never be fast running and run in time to my breathing but just happy to keep going xx

[dall05]

Hi OC, it sounds as though you could do with an update on those lungs. 3 years is a long time to go without a test, mine are checked every 3 months at Birmingham and every 6 months locally at Worcester. The 3 monthly x rays do concern me a little, when I look in a mirror in the dark I swear I am beginning to glow.

[mskpjb]

Hi dall05, Can I ask which oxygen company you`re with. Also from your pic it looks as if you`re on liquid oxygen so is it the Marathon flask or the smaller one you use, Also what lpm you`re on. I`m not just being nosy honestly, it`s just that I used to have liquid oxy at 3lpm pulsed and it was great. Then i was put on 3lpm constant and heavy cylinders. It lasts 2hrs 20 mins so it`s very limiting. If I go back to the larger liq oxy flask it`ll last 3 1/2 hrs. Just can`t decide ! Keep well, Sheila x

[dall05]

Hi Sheila, I'm lucky enough to have both liquid and cylinder type oxygen. My oxygen nurse says she's happy for me to have anything I want because she knows I'll get and and use it.

I use my liquid oxygen (1.25 liter high flow) for shorter trips down the shops etc as its more compact but I prefer the pre-filled cylinders on pulsed for any longer spells. (6 hours) ish. They both weigh about the same when full, roughly 1 stone.

I vary the flow from 1 sat down on a good day to 8 liters high flow when walking up a steep hill such as the ones around Malvern. I'm with Baywater Health now as they took over from Air Products, both have been very good with deliveries and back up service.

Tony x

[CornishBrian]

Please be aware as you proclaim the benefits of oxygen, that you are one in a few thousand that would benefit from it in this way and there are other ways to achieve it without dragging a bottle around with you. Most folk on oxygen are on it for one thing....to preserve their inner organs. Most COPD sufferers actually have oxygen retention and additional oxygen would prove fatal. The way around the oxygen bottle is to learn, practice and put into effect breathing control. This then helps to return some elasticity to your lungs, reduces oxygen retention and boosts your organs and muscle tone. As about PR because I'm sure they didn't explain to you the disadvantages of high rate oxygen therapy.

[Toci in reply to CornishBrian]

CO2 retention?

[CornishBrian in reply to Toci]

Yes, when your lungs do not empty completely and you end up with your lungs full of stale air and no room for the air that you are breathing. The only option to your body is to breath with your upper chest muscles rather than using your diaphragm to operate and assist your lungs. That puts you into the zone of ever decreasing decline because you are by passing the majority of your lungs. Seems that you need to attend a PR course, as much for the talks as for the exercise.

[Jjude in reply to CornishBrian]

So if I think my oxygen levels could be improved I just need to breath using diaphragm to get levels to rise? sorry Im still new to copd, went to docs with low oxygen levels, didn't expect to be told it was copd. now watch levels far too much and get concerned when the drop below 90.

[CornishBrian in reply to Jjude]

Most athletes that prepare for an event, have their SATS very low before they finish the event... hence the collapsing on the ground and gasping for breath. It is the recovery time that is important and only trading, fitness and technique can bring this down.

[dall05 in reply to CornishBrian]

Your right CB, fitness does play a large part in recovery time for sure and I work pretty hard at that but also my recovery was 10 minutes quicker on oxygen which says a lot in itself.

[Toci in reply to CornishBrian]

Hi Brian, I have attended several PR courses (could probably teach them by now, lol) and was just asking if you meant CO2 retention when you talked about oxygen retention. I hope you are keeping well? x

[dall05 in reply to CornishBrian]

Hi CB, I've done a PR course 4 years ago now and certainly found it very beneficial. I have Pulmonary Fibrosis which seems to like oxygen when I'm under load and burning it. Over the years I have learned how to control the amount I need but I guess that comes from experience and finding out what suits me best. My oxygen nurses seem happy to give me control of my own levels but I guess I wouldn't recommend that to a beginner because of the dangers of carbon dioxide retention.

I agree that breathing correctly and exercise is the best way but I need the oxygen to able me to exercise for longer, this way I get more muscle efficiency and therefore I am able to do much more.

I still do the follow up to PR called fit to breath which reminds us how important it is to keep exercising, well worth doing it if your able and its available down in Cornwall.

Tony

[jackdup in reply to CornishBrian]

I don't have access to a PR course and when you mention

"practice and put into effect breathing control. This then helps to return some elasticity to your lungs,"

I would be interested to learn more and would appreciate if you could expand on exactly how to accomplish the breathing control you are referring to as I would like to learn this technique if it can improve elasticity or any other area.

Thank you

[dall05]

I guess you could say I've had a little experience of Pulmonary Fibrosis and how it effects my oxygen levels. CB is much the same with COPD and makes a good point about oxygen retainers and how dangerous oxygen can be for them.

I've always thought that Birmingham should take over the abscess problem as they know exactly what the transplant team want. Its all but cleared and the nurses have finished dealing with it but getting that information to the transplant surgeons seems to be proving very difficult. They want it writing down in technical terms instead of just looking themselves which would seem the obvious thing to do.

Worcester don't seem to realise just how stringent the transplant team are about meeting the correct criteria. They just don't take risks for very good reason as they have learned from bitter experience that it just isn't worth it.

I'm Rocking and Rolling now but it would be easier with a new set of lungs wouldn't it.

Thanks Flibberti xxxx

youtu.be/M1ra1-s3wvI(Not working as expected?) youtu.be/M1ra1-s3wvI(Not working as expected?) as you can see