Hi - my husband was discharged from hospital on October 19th to home oxygen (concentrator) 24 hours a day. He was also prescribed 2 cylinders of ambulatory oxygen, which at 2 litres is about 6 hours in total. He is feeling well enough to go out - but 6 hours a week isn't much, so I asked for more. Oh dear ! Dobly Vivisol told me the prescriber had to change it, so I phoned the hospital - who told me now that Keith has been discharged to the GP it is up to him to change the O2 prescription. I wrote to the Dr last week and was assured the HOOF had been done. Dolby Vivisol told me they hadn't recerived it, so I went to the surgery today and asked them to fax it through. Despite having already done so, they did it again - only to be told that the change has to come from the hospital!!!Doh ! So, having gone out today we have about 4 1/2 hours of 'escape' time until a delivery some time next Monday.
Anyone else had this problem?
Gill
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Gidge
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I have a homefill system. With this you get two cylinders, one that on 2 litres of oxy gives you abourt 3 and a half hours the other one is slightly bigger and lasts nearly six. I had the chap from dolby out today to service my machine and asked him if we were allowed anymore than the two cylinders. He said they don't carry spares but to ask Dolby. This homefill is a great idea but we don't have a car so can only take one at a time.
Hi Gidge, the homefill concentrator is brilliant. It is made up of two machines, your concentrator and the filling machine that fits on top. It is so easy to do. Needs to be for me. It takes about an hour to fill the smallest cylinder a little longer for the larger one.
I was delighted when I got mine, there is a huge waiting list and I had to be assessed to see if I could trigger pulse flow. Otherwise I wouldn't have got it because he cylinder wouldn't last very long on constant flow.
Thanks for the info. I have a feeling my husband wouldn't be able to manage the pulse flow - I need to look into that. Currently he is on 2lpm constant flow 24/7. I will talk to the Pulm. rehab. guys when we go to see them for an assessment. Thanks again! still fighting the system at the mo. to get extra cylinders........
Gill
I had a simiar problem when I first started using home oxygen but once it was sorted out and I was given sufficient cylinders everything went smoothly. Your main problem was caused by not knowing who to go to for help but now that you know it is the hospital I hope things are resolved quickly.
It was like 'de ja vous' reading your post. Same happened to dad when he came out of hospital 2 weeks ago. He already had a concentrator at home and many o2 cylinders but he would now need a higher lpm and his concentrator was fixed at 4lpm. You would think the hospital would have arranged all this ready for his discharge? Nope. Same as you.
Between his respiratory nurse, GP, and hospital none of them would take the responsibility to sort it out and I had just gone away for a few days so was completely helpless. My sister in-law tried to get it sorted as my mumwasn't getting anywhere and finally one of the receptionists at our surgery stepped in and sorted it all out. What a palava and a very distressing time that was so not needed.
It was down to the hospital to ensure a care plan was in place for dad's discharge. They are lucky I wasn't home I tell you! But dad has his supply from Air Products and aprt from the odd niggle they have been great. His concentrator is now done so he can manage his own requirements, high or low o2 etc according to his needs and he has 8 small cylinders and 2 large ones. Everytime we have rang them to request a higher quantity it hasn't been a problem mainly due to the fact that when dad moves he uses 8lpm if not higher and hence as you know it really don't last long.
When dad saw his respiratory nurse a few weeks ago we did tell her that dad needs more o2 cylinders and she sent a HOOF in to them requesting at least 10 per week so dad got flexibility if he does go out then he can have more. No one should have the worry or stress about not having enough o2 to breath. It's hard enough dealing with our respective conditions as it is and if we are fortunate to be well enough to go out then they should be very willing with the o2.
Hope you get it sorted, but don't take no messing xxx
Thanks for your support ! I get frustrated at having no plan, apart from 'call us if you have an emergency'. We have an appt. for Pulmonary Rehab on December 10th, so I am hoping at last someone will assess Keith when he is moving about and see what happens - I know what happens, his sats. go down, but then I am not a professional...I just want some proper advice on when to try and get him to do things and when to let it be., also when to try turning up the O2 and how far......the GP just told me to do some experiments, but I'm a bit wary just doing that on my own at home. If they get the cylinders sorted out tomorrow, and we get a delivery on Thursday, I want to take Keith to see a very dear friend of his who is in hospital recovering from chemo. It's a good half hour drive away, so I want more than one cylinder in the car before we start ! I did look at buying a portable concentrator, but I think that very soon it wouldn't be able to give the flow we shall need.Anyway, onwards and upwards - take care,
I would ignore your GPs advice to "experiment"! Keith needs to be properly assessed at rest and moving around so that he can have the correct level of oxygen. As has been discussed in various threads recently, too much can be dangerous and too little does not do the job. You should have been told the levels that have been prescribed. If you can't speak to someone at the hospital you could try ringing Dolby Vivisol to ask what the HOOF says.
Give me strength !!! It turns out the respiratory nurses (who we never see) are responsible now. They say the hospital HOOF said o2 16 hours a day - I know we were told 24 hrs a day when he was discharged, or I would have sought advice on which 16 hours for a start. He was on o2 24/7 for almost 2 weeks in hospital - the first week at 10 lpm.They are unwilling to increase the number of ambulatory cylinders because they say he should only be using them if he is walking about outside the house (despite the fact that he desaturates very quickly even on 2 litres when walking - but that's another thing I want proper advice on). If I take him off the o2 he goes from 92% to 87% within 5 minutes,just sitting in his chair - if he walks to the loo and back its down to 77%. Back on the o2 he is back up to 92% in 10 minutes. Apparently the Resp. nurse is coming to re-assess him on Friday next week - not that we had been told - and we have to wait until then for them to make a decision about o2 use. It feels as though we are in opposition - why does it have to be like this ?
I was in this situation about 18months ago. I got to do better after a change of medication. I started using a nebuliser more often through the day. Nebuliser drugs were salbutamol (Ventolin) and ipratropium bromide (Atrovent). Maybe it's time for a drug review foryour hubby. Also see your GP or Consultant and ask about lung valve implants (Pulmonary valves). I had some fitted in my right lung in Feb and had an amazing change in life from similar to your husband to a much more normal life. But first thing, see if sorting the drugs out can help.
If you want to see my story about the valves, see:
Hi John - looks like you had success - unfortunately my husband has IPF, inhalers like ventolin make no difference to him,the problem is lung scarring rather than airway problems. There is no real treatment, apart from at the moment he is on steroids and Spiriva, plus Mucodyne, although he doesn;t have a lot of problems with coughing. He has heart problems so tends to get 'waterlogged' from time to time which is trated with diuretics. I read about your treatment - amazing !
At last. Someone who has similar water problems to how I was.Used to be with me that if I missed the signal from my bladder that it was full, I would very soon go very breathless and need emergency treatment. 1. Get on nebuliser. 2. Have a pee.
After my last stay in hospital due to exacerbation, I figured out that Spiriva wasn't giving me 24 hours as it was supposed to. In fact, I was lucky to get 16hours. So I asked my GP's If I could try nebulised Atrovent instead. They agreed I could try it, and it worked for me.
Spiriva = Tiotropium Bromide. Supposed to stay active in your body for up to 24 hours. Individual dose dispensers give accurate daily dose.
Atrovent = Ipratropium Bromide. Short acting, less than 4 hours, but can be used up to 5 times a day normally, but more if needed. Small doses can be taken by inhaler. Larger doses by nebuliser.
Caution -- Spiriva and Atrovent should not both be taken on the same day, except in emergency situations.
Both work in the same way, they help to control the body's breathing technique by encouraging deep lung breathing using the diaphragm rather than chest expansion which tends to only use the upper parts of the lungs.
Your husband might find that nebulised Ventolin (Salbutamol) better.
Note Nebulised drugs come in much higher doses than as in a pocket inhaler (usually about 25 times as much), therefore are much more effective. A close eye should be kept on the patient the first few times this system is used.
Ask your GP if he can try this. The surgery should have a nebuliser available for loan to see if a trial works.
I had similar problem with Air Liquide. Asked for an extra portable (making 3) to reduce order frequency and was told that's fine, we'll deliver tomorrow. They delivered as promised but the technician would only leave 2 as this was how many empties I had to return, and he took the spare cylinder back into his van, So I did have it technically for about a minute. He said the only way I could get extra was to get a new HOOF from my clinician. Never had this problem with Air Products.
I have AirLiquide and when I came out of hospital on oxygen I had a concentrator for in home and 2 cylinders for going out, I told my respitory nurse that that was not enough as I went out a lot so she said I could ring AirLiquide and get a large liquid oxygen tank delivered as long as I had a secure place to store it, and they would bring a refillable Helios tank then I just ring up about every 2 or 3 weeks when the large tank is getting low and they come and change it in about 3 days. The Helios tank last about 4hrs on continuois at 2lt or 8 hrs on pulse, hope this helps
Thanks everyone - I've just been onto the BLF Helpline and spoken to a nurse, who agrees that it looks like Keith should be on o2 all the time, so in the morning I need to start again and contct the hospital consultant to clarify this and ask for a prescription for more cylinders.
The liquid oxygen sounds good, but I'm not sure if the pulse would be OK for him. I'll ask when we get to Pyulmonary Rehab. assessment in December I guess!
Gill, they usually say 16 hours minimum but the National Institute for Clinical Excellence (NICE) guidelines state that 20 hours is better. My respiratory nurse says 24 hours is better still but that it is felt that most people would not be happy to be told that so they give them the minimum figure. And if they have only tested his oxygen saturation whilst he is sat down then ask for him to be assessed whilst walking. Good luck.
Thanks - I phoned the med. sec. this morning, she went away to talk to someone then phoned back asking for all the details to be faxed from the surgery to her. Round and round in circles ! Anyway, the person dealing with it at the surgery has been superb, I typed out all the (non)-events and took it down to her, she was just going to fax that off and we await developments.....I don't want to annoy the respiratory nurses but they haven't exactly been helpful. I think the way it is going is that the GP should have the authority to change things for his patient if he feels it is appropriate. We're off in a minute to use up our last cyclinder - bye for now !
Hi - I started this blog on November 13th - despite all efforts nothing changed until this morning. The Resp. nurse came, did blood gas tests, said the figures were good. when it came to more cylinders she just repeated the mantra that Keith was only prescribed 16 hours a day. I told her the hospital definitely told us 24hrs, and asked her which hours he should be sat there desaturating then - but she couldn't really advise on that ! Just as she was about to go she had a call from the consultant, who confirmed Keith should have 24hr oxygen. Everything changed. We then discussed how often we go out - i pointed out that to make him a prisoner in his own home except for 6 ours a week was to make me a prisoner also - this is all about quality of life, and while he is able we want to get out and about as much as we can. It's Friday, of course, so no paperwork will be done until Monday, but hurrah !!! she will order liquid oxygen !!! I am hoping this will make life easier. The next thing will be assessment for pulmonary rehab on December 10th - at long last someone will actually assess what happens when he walks about. The support from the BLF Helpline and all of you on this site is invaluable! I do have some sympathy for the Respiratory nurses in my area, who seem to be rushed off their feet, short-staffed, and I would guess under pressure not to spend too much on oxygen, but I will always fight for the best I can for my husband. I just feel I shouldn't have to ..... ther will be no regular follow-up, just another blood gas test in 6 months time.Anyway, a little victory today ! Hope everyone's OK. Gill.
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