Walking with Oxygen Campaign - Living life with Oxygen

Letter from Emily to the Cystic Fibrosis Trust

I am writing to you out of desperation as the situation with portable oxygen is continuing to be difficult to navigate.

The changeover from BOC to Allied Respiratory was supposed to happen in February. About a month later I received my new O2 concentrator which is all working fine. Around this time I spoke to someone who asked me what my portable oxygen needs were. Being 22 years old and having lived with Cystic Fibrosis all my life, I try to keep as active as possible. I am waiting for a double lung transplant but I am very aware that there is a 50% chance I will die before one comes through, so as a result I am determined to live my life now, as I don’t want to waste a second.

I am on 2 litres per minute so a cylinder lasts me approximately 3 hours, although my physios request that I turn it up to 4 litres when I am breathless but I am reluctant to do so as it goes quicker and I have so little to spare. I discussed my needs with Allied Respiratory and they explained to me that a perk of this new system would be a weekly delivery, no need for prescriptions, and so we agreed to 14 cylinders a week and I was delighted that I would be able to get out and about more, perhaps go and see my family, or be taken to the park in my wheelchair but most essentially to leave the house.

Needless to say the fact I am writing to you in July shows the system has not worked as promised. Hundreds of phone calls to AR have resulted in “someone will ring you back” with no one ever doing so. Every time they take the same details. Every time I spend about 15 minutes on the phone explaining the same situation. It is mentally and physically exhausting.

I finally managed to get a delivery arranged for a few weeks ago, but was admitted to hospital, so had to cancel it, which was no one’s fault. Unfortunately that meant I was back to square one, with no follow up, instead a further sequence of phone calls until this Monday, my chemist phoned me informing me that BOC will no longer be supplying them with oxygen so I panicked, phoned several more times, and then yesterday received a phone call response.

Sadly this phone call was not extremely helpful, in fact it was rather upsetting. I explained the situation and said that my weekly delivery had not been set up yet. The lady on the other end immediately responded saying that a weekly delivery would be impossible, and I have to phone every time I need more cylinders. Filled with dread at the thought of this due to my experience with AR’s response time to phone calls, I asked for as many cylinders as they could supply me with so that I don’t spend half my week chasing further orders. She asked how many I would like, I suggested 14, thinking I should be able to stretch that to over 2 weeks as long as I am sometimes housebound and don’t leave the house for more than 3 hours at a time. She sounded horrified at this request and said the most they can supply me with is three. The fact I always have to keep one cylinder as an emergency for a sudden trip to hospital should I get called for transplant means I would have 2 for use giving me a grand total of 6 hours freedom.

When trying to explain this I got the response “there are babies out there who need these cylinders and there is a national shortage”. Whilst that is concerning that young children are being left without oxygen I do not understand why I should be made to feel guilty for wanting to leave the house. I also do not understand how there is a shortage of oxygen, where has it gone? BOC have been supplying for years, did they just incinerate all their cylinders?

I understand large orders may not be possible but I was most upset as I visualised the idea of being trapped in the house for goodness knows how long whilst I phoned again and again trying to get a reorder of oxygen. I was also told I can get a conserver but that I need to get a form filled out by my GP. I asked why I wasn’t told this initially and couldn’t they do this for me but was told it was a separate issue and I had to sort it.

When I was listed for Transplant I was told I had a year, perhaps two to live. 15 months later I am still waiting and my health has declined further. Am I really to understand that due to the 3 cylinder maximum rule I will never be able to go away from my house for more than a day? I am regularly asked in surprise by AR “you have a concentrator don’t you?” as if they cannot understand why I should want anything more. I believe it that supplying oxygen should not just enable someone to survive but should also enable them to live.

I hope you can pass on my concerns to the appropriate people, as I feel there is a slight lack of information as to some of their patients needs, and I hope that this letter will explain things more clearly from a patient’s point of view.

Why is it when people are living within these narrow margins are people like Emily and I am sure many others forced to be prisoners in their own homes. Emily has done a lot of work to raise awareness of the gift of life that a Transplant can give Please click below to see her and Emma's site and support their campaign. Emily has at last had her Transplant and is now at Home and we pray that she continues on her path to fitness.

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Last modified: 08/30/07