Don't know what to do!

[LadyWithEDS]

I have posted about health issues previously.

I am worried that some treatment has damaged my health.

I have an appointment with my GP for later, as speaking to the hospital was no good.

Right I have Elhers Danlos Syndrome, which is a genetic connective disorder. Imagine pulling an elastic band, normal people can only be pulled so far, EDS people can be pulled further, doesn't mean they should and it can cause damage if they are overstretched. Connective tissue is blood vessels, skin, organs, joints etc.

I have been diagnosed with severe sleep apnea. I have had a lot of problems with the machine. The machine is to give me air down my lungs when I stop breathing, it has automatic levels set.

It stopped working on Friday night, I woke to no air going into mask so I had no access to air but the air I was breathing out.

As it was the weekend, I got no machine until today. I found out today that I should have had a machine, there is going to be a bollocking as the calls are recorded, no help to me.

So many things seem to go wrong on me in life, I have the worst luck, I am crying about it today.

I had horrible chest pains upon waking, last week which I reported to the hospital. I was wondering if the machine was pushing too much air into my lungs, they said it can't. I even said to the consultant when he gave it to me, was there a chance with me having eds it would push too much air in my lungs, he said no.

Anyways the technician told me today that the cpap machine has been pushing too much air into my lungs, from the results they have. They can't speak to the consultant until Wednesday.

I am terrified that my lungs are being damaged in the mean time.

I had no effing machine for three nights, it broke, no one gave me another, it is probably damaging me anyways, if I don't use it I will loose my driving licence.

I feel so upset, I am extra tired than normal as I am scared to sleep as my oxygen levels drop to 61%.

I don't know what to do? The experts don't seem any good. I rang the hospital and they couldn't help me, I gave them the name and contact details of the EDS dr, I shouldn't have to run around like this ffs.

anyone? I am so tired, I don't know what to do.

You are asking a very technical question. I doubt many on this board will have heard of Ehlers Danlos or CPAP! On the other hand, you are clearly tired and worried so I will do my best.

I happen to know of both as my son ended up in PICU on CPAP aged 5 weeks and I have a Goddaughter with ED. What level is your ED, if that is the right word, 1, 2 or 3? Given that ED people are hypermobile, I doubt excessive pressure should have damaged your lungs (as surely they are extra stretchy). You clearly need some answers and the place I would start is your ED doctor. I would ask him to urgently get in touch with your respiratory consultant and see if the machine is safe for you ( I suspect it is). Also, although sleep Apnoea has many serious long term effects, I don't think that it is very dangerous short term. You clearly managed without the CPAP machine before you were diagnosed so can manage short term now, if you have to. If you are frightened to sleep, maybe you need some sleeping pills to help you relax in the short term. In the long term it sounds like you need your ED doctor to work with a respiratory consultant and the technicians to make sure the machine is safe for you given your condition. The key thing is not to panic but push the professionals to sort this out for you.

Maybe there will be someone better qualified to answer on this board. On the other hand, I believe there are many ED forums on the internet where you may have better luck.

Don't panic. Even if CPAP has been set at the wrong pressure, your lungs will be fine.

Think of your lungs as being balloons that inflate fully every time you breathe in. Normally, when you breathe out the "balloons" almost completely deflate, with only a small amount of air left in them.

As anyone who has tried to blow up a balloon knows, it is much harder at the beginning when there is not much air in the balloon. Once you have got some air in, it gets easier.

What CPAP does is stop your lungs/balloons from fully deflating when you breathe out. They do still deflate, but not has much as normal. This means it is easier to re-inflate them when you breathe in - the balloon is already partially inflated before you start breathing in. But, even on the max setting, the pressure in your lungs when you breathe out on CPAP (= partially deflated balloon) will never be as high as the pressure when you breathe in (= fully inflated balloon).

So don't worry. Hope this helps

PS Nothing terrible will happen if the machine has broken either. If your oxygen levels drop too low as you sleep, you will just wake up. So you might end up sleep-deprived but nothing worse. As larry says, OSA is bad for you in the long-term but you'll be fine for a few days or even weeks.