Living with "Severe COPD" & experienceS.

[Markrh]

HI, I am a 62 yr old male who was diagnosed wit has COPD about 6 yes ago but due to other 'things' going on in my life didn't take the advice given until I was rushed to the Hospital where due to.their care, treatment and my own willpower survived. I am know on Long Term Oxygen Treatment (about 12 months ago and beginning to slowly enjoy life again. I am very fortunate in having a loving & caring wife who "kicks my ass" when I'm feeling sorry for myself! Today I've passed another target in that I've been to my DVLA Medical to get back my license to gain the mobility & freedom we had before COPD became serious. My Oxygen levels before LTOT were, resting 88 - 92 exercise 67 - 82, with LTOT IS resting 88 - 96 exercise 88 - 96. I can do not need Oxygen whils't resting as it is between 88 - 96. That is why I have applied for my Licence back. Has anyone had a similar experience regarding the DVLA & Driving, I believe you can even receive Oxygen whils't driving?

Anyway that'she a short introduction from me & I look forward to many "chats" in the future,

Markrh

[stone-UK]

Hi

Speak to your respitory nurse for a Ambulitory oxygen assessment, this will tell you your oxygen needs when mobile.

I only use Ambulitory oxygen 4lpm, still drive with no problems. I use my own portable concentrater which I can charge and use if needed in the car.

Which for me means I always have two hours of oxygen at any destination, with a spare battery four hours.

You can use cylinders just make sure they are secure, and any spares are stored in the boot.

[Markrh in reply to stone-UK]

Dear Stone,

I meant to ask you a while back. What portable oxygen machine do you use? I am on 3 ltrs constant and I've seen a few that can deliver up to 4 ltrs on constant but more offer a greater selection on pulse mode. I understand, I think, that this operates only on the user drawing breath via the nose. How do I know if I can qalify for this; I'm on LTOT?

Alook if I have to pay for this if my oxygen supplier doesn't use them, how much approx do they cost.

Cheers,

Markrh

[stone-UK in reply to Markrh]

Hi

Use a Imogen G3 which goes to 4lpm pulse nose cannula use only.

I also have a Philips mini igo goes to 5lpm pulse nose cannula use only.

Both weigh about 2.2 kg cost are similar at about £2500 depending on deals and battery size.

The SeQual® Eclipse 5™goes to 3lpm continuous and 6lpm on pulse. Weighs about 7.5 kg. Cost about £2450.

As the above can be used for LTOT, you may be allowed one on the NHS .Speak to your respitory nurse.

[Markrh in reply to stone-UK]

Thanks Stone, that was really useful. I still do not understand the real difference between pulse and continuous flow apart from the obvious. Can I move from a nasal cannula 3 ltrs to a pulse 3 ltrs? Can this be answered only by my respiratory nurse or is it down to costs in local NHS services, which so far have been very good.

Markrh

[stone-UK in reply to Markrh]

Hi

If your respitory nurse is happy then there no problem changing.

At home I use cylinders I ask the oxygen team about a conserver, which doubles the duration time of the cylinder it was delivered next day did not need any further testing.

Even on continuous it's only the first shot that goes deep into you lungs, the rest as is oxygen on exhale is wasted.

If there is no specific reason for being on continuous then there should be no problem.

You can only ask.

[Markrh in reply to stone-UK]

Thanks Stone, i'll do that.

Cheers Markrh

[sassy59]

Hi Markrh and welcome to you. Hope you will enjoy being part of the HU family. I care for husband Pete who has sarcoidosis and COPD but is not on oxygen. He is doing well at the moment thank goodness.

It's good to have support from a loving family and us wives/partners do need to "kick ass" sometimes. Take care xxxxxx

[Markrh in reply to sassy59]

Than you for your reply. I agree with your comments and hope your "other half: appreciateSent you all. I can sometimes forget that they too have their own problems and from time to time need all kinds of support to help them.

Keep up the :good work"

Kindest regards,

Markrh

[Toci]

I have been driving whilst using oxygen for 10 years. I don't understand why you gave up your licence. Was this because of sleep apnoea? I know that is notifiable but I have never heard of it being necessary for COPD.

[Markrh in reply to Toci]

Unfortunately no, I was "asked" to surrender it for another reason which has been dealt with. The COPD is on top of this.

Markrh

[Toci in reply to Markrh]

Then get it back and go enjoy!

[SquirrelsHolt]

Hello and welcome Markrh and a quick "well done" to your dear wife,who drop kick's you back into place every now and again! I'm going to be 55yrs young thus Summer and have severe COPD,with like you,LTOT for roughly 15 hours a day at 3 LTS. This site is truly excellent full to the brim with people who have lung related issues or care for their loved ones. What I'm trying to say is your lovely wife may find support or just answers to questions she may have relating to your condition, so do tell her,she's very,very welcome here too. Bye for now.

[Markrh in reply to SquirrelsHolt]

Thank you all who have replied so far. I will ask about the portable rechargeable condenser, I've never heard of one! I will also show "She who must be obeyed" this website and I'm sure she will post her own thoughts in the near future.

Kindest regards

Markrh😀

[onamission]

Hello and welcome we have all been stubborn none more than me I was diagnosed over 10 years now but I think I had COPD for at least 6 months before I went to the Doctor. Found all the excuse's haven't got time I'll do it next week still smoking.

The most important thing we gave up smoking and tried to look after ourselves that gives us the right to feel sorry for ourselves 😊

[Loraine121]

Hi Markrh, well done on getting back your licence, I have asthma and another lung condition is have been on home oxygen 24/7 since October im still getting used to going out in went out for lunch yesterday and apart from the doctors it the first time out but the weather has no been good for getting out and about much.

My oxygen level are similar to what you were.

Well done enjoy getting out again in your car .

Loraine x

[Markrh]

Hi all,

I think that my posting has been misunderstood. I only went for my DVLA Medical today, so I am waiting for their result. However I am reasonably confident as their Doctor said he thought it was OK and all my Doctors including GP are for me. However I still have to wait approx 5 weeks for final go ahead!.

Love,

Markrh

[mrsmummy in reply to Markrh]

Fingers crossed then.

[Catnip]

Hello there, MarkRH

I didn't even tell DVLA that I'd got problems -- I just strap the cylinder onto the front seat of the car and off I go. It's on the front seat because I need 4 litres ambulatory but only 3 on LTOT and my arms aren't long enough to reach to the back seat to turn the valve...

Please don't forget your wife is probably worried sick about you; I know that my husband is. He is also scared out of his wits when I end up in our wonderful respiratory unit (BreathingSpace) in case I don't go back home again. Often, I forget that my (now) "very severe" emphysema impacts on him too. When I feel as though I'm at death's door, I have to push myself to remember that when/if I shuffle off this mortal coil, he will be on his own, sort of -- with only the coming-up-nine-years old Labrador and two very young cats... and he doesn't even like cats!!

Enjoy life

Catnip

[Markrh]

Hi Catnip,

I understand how you feel. Like you I can, if not checked, disappear into my own "recovery program" and forget the impact my illness has on her and our family's life. It doesn't happen too frequently but when it does I am "dropped kicked" into reality. We do not have any children but have always had dogs (like your husband I don't like cats). The current one is a very demanding "Yorkie" called correctly "Scruffy" who we have had before the severe COPD effected me. He still doesn't understand why I'm not talking him on Long walks and looks at me very suspiciously when attached via long tubes to my Oxygen concentrater! Still we have to laugh and realise how lucky I am and that things could easily be worse.

Still looking on the bright side of life, most of the time.

Regards

Markrh