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No follow up care within our health service


#1

I live in Ireland and at the age of 62, it was only 22 months ago that I found I had Obstructive Sleep Apnena.

Like many of us with this condition our first visit to see a specialist can be somewhat daunting, so when you find that the treatment you have been prescribed seems somewhat out dated, you are left in a kind of limbo as to what to do next, as you are told take the treatment or leave it, this is done in a patronizing way, which leaves you feeling somewhat guilty as to having been there in the first place.

You then fined yourself plunged into a world you have never experienced before, and on the arrival of a CPAP machine and its mask you are told here it is this is how it works, now get on with it.

Absolutely no mention or instruction on how to deal with mask and pressure problems, and nothing about the ordeal you are about to face with sleep, having your pressure set to high, anxiety, and mood swings, only that you are given a phone number as a point of contact if you run into these kind of problems.
Now this is fine if only you could get the service at the other end of that phone to answer your call, which you later fined out you can only contact that number on a set day during the week, and then you may not get someone
that you can talk to who knows details.

You are also told that your machine provider will see you every 6 months to take a data reading from your machine to see how you are managing your treatment.

I just hope that after reading that last two paragraphs your not in to much disbelief, as it is certainly the way it is here in Ireland.

I have for the most of my 22 months regime on CPAP managed my own care, done all my own research, and have had to go cap in hand to get the health service here to give me the help I needed.

So my question is to all you lovely people over there in America,“Why has the technology, aftercare, and sites like this not reached us over here as yet”.

Is there no of sharing information with other countries? I am amazed as I read some of the story’s here as to the kind of care, and equipment (some of which we here have never heard of before) you guys get, and for many I supposed your site can be a god send of help at the start of their journey with CPAP.

Can there be in the future any information sharing with other countries?


#2

That is unbelievable!!! Your sleep doctor should be following you, very closely to make sure your pressures are correct and your AHI is within the acceptable range, which is optimally < 5. I had my pressures changed every 3-6 months for almost 4 years, then two more overnight sleep studies and 4 different machines until they found the right settings for me. I’m finding you need to be an advocate for yourself. Check your AHI on your machine frequently. Watch those numbers. If it is consistently high you should be calling your doctor. What is the point in wearing CPAP if the pressure settings are doing you no good? If you are not on the right pressure, you might as well not even wear CPAP because you are not getting the benefit. Look up the side effects of untreated sleep apnea and see if there is anything on the list you would be willing to live with… then call your doctor back and consult with him until you get your questions answered. It might be the type of insurance you have, but from my experience as they say “the squeaky wheel gets the grease”. I’m finding even with the so-called experts, this whole sleep apnea treatment thing is not an exact science, lots of trial and error involved. Best of luck to you.


#3

Hello KimR.

Thank you for your reply,

Here in Ireland as I have said before you are just given a machine and told to get on with it, they do set a pressure on the machine for you, but in my case it was to high as they were just guessing at what pressure I should have, crazy I know, but true.

On my first visit back at the hospital (6 months later) I was told by the specialist that the readings from the machine were fine and I only need to have a new mask sorted?
I was more than just stunned, I could have gone for this guy, I then knew that this guy did not no his onions and told him so, then refusing to see this guy again.
Yes I agree it is a total waste of time using the machine if you do not benefit from it, but I could not get the hospital to listen to what I had to say or was going through, they just go on there data from the machine, which must be set by the provider as to make themselves look go, and the patient look bad by having no problems register, mainly to keep their contract with the hospital.

I spent the next 18 months swapping and changing the pressure myself, asking for new masks to try, eventually doing my own research, on the best pressure for mouth breathers, and what kind of mask is best suited, plus going through all the does and do not’s of CPAP.

You see we do not have insurance here like you have its a free service just like the NHS in England, so you have to find your own way, like it or not, you can contact the hospital by phone with any problems but its all a hit and miss affair as it is difficult to get contacted with them, Like there is only one nurse that deals with enquirers, and if she is off sick or on holiday you get no one to chat to.
Sometime in late September last year I had to contact the machine supplier to get me a new mask and found out that the supplier of the machine has an expert that can assist me with any problems like the pressure and mask, absolutely unbelievable, I was so annoyed about not being told this from the start.
So since October last year (at my own insistence) with the help of the machine specialist I was put on APAP and I asked for a lower start pressure from 8 down to 4 to see how it went, the hospital had to agree on that, but that was it, no more contact from them, so 2 weeks ago I altered the start pressure myself up to 6, I have found this to be right for me, I then rang the hospital to tell them about this and also stated that I was worried about the poor circulation in my legs I had got (from when I first stated on CPAP. so and appointment was made for 19th Feb .19.

There is as you say a lot of trial and error, and it is not an exact science, like the problems we have with weight gain, they no nothing about why we gain so much weight, I have found that its due to the hormone imbalance as we can actually eat twice that of a person without apnea,

I cannot wait to see these so called experts, believe me they are getting both barrels from me, I have so many question for them.

Thankfully my experiences can now help others, so will look forward to doing that.


#4

I gained 50 lbs when I first went on CPAP because they set the pressure too low. I don’t think this happens often, but it can happen that when the pressure is set too low, you are hungry all the time and so gain weight. I could go to a buffet for dinner, leave around 7:30 pm after eating a bit more than I probably should, but by 10 pm, my stomach would be growling again. My stomach drove me half crazy during that first year or so on CPAP… I found it very hard not to eat at those times, especially since I was still tired, too, and that doesn’t help your self control.

I talked to my regular doctor about this but not my sleep doctor as I hadn’t realized it was due to going on CPAP. My regular doctor didn’t know why I was hungry either and didn’t have any good advice.

Eventually, I started changing my CPAP pressure myself. I increased 0.5 cm at a time until I was sleeping a lot better which was totally amazing. At that same time, my stomach finally stopped growling all the time, and I figured out it was the CPAP… Unfortunately I didn’t keep sleeping that well and so I am still tired a lot, but those hunger pangs haven’t come back except the day after another totally failed titration sleep study! LoL!

I don’t know, but I don’t think the doctors are as good at this as they think they are.


#5

Hello Liz4cps.

Wow, its not just me then that can eat like a horse,lol.
Yes this weight imbalance is a problem, up one minute down the next, and it does not seem to matter how much exercise you get to try and help lose the weight.

I really think that once you have resolved the major issues one has with our apnoeas, the heavy eating binges seem to subside a good deal, I never give in to my apnoea, and am always trying news things, with going from CPAP to APAP just recently I have now just about adjusted to the new way I breath at night, and it suits me better.

Okay, I still get a little bloating but that I think is due to me being a mouth breather and hopefully can get that sorted when I see the Doctor again, yet my latest thing is POSTURE.

I never have given thought to how important this is, well you know how it goes, concentrating on all the other issues trying to resolve them, you can only do so much at one time,lol.

Anyway please do look into how your sleep posture can benefit you, the reason I mention this, is because it has help me with my eating a lot, some days I just do not eat as much just now, combinding this posture with the new regime on the APAP has helped me greatly.