I have recently discovered that sleep apnea can be associated with kidney disease.
I have been diagnosed with a mild form and have been given a CPAP machine to use. I am determined to use it as i have been told by the sleep consultant that it could make a difference to the life of my new kidney.
Trouble is, im finding it real difficult to use.
It starts off ok and i fall asleep but about an hour later i wake up with an enormous pressure on my face. I have to let the air out of the mask, go back to sleep but it happens again about an hour later and i feel like im suffocating and take it off.
Has anyone else had CPAP and can offer advice? Thanks.
Mgt
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Mgt8
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My family is a family of snorers. I was diagnosed back in 1987 with severe sleep apnea. I was so tired, I would fall asleep in the middle of talking. I also had a narcolepsy. I was given a CPAP and the first time I used it was the best sleep I ever had. I use it religiously. Back then, they did not have humidifiers and the head gear and masks were huge. I was so tired I was used to the mask in short order. I have continued to wear a CPAP religiously. However, now, I have a humidifier on the machine and a heated hose which builds up water in the mask. In the middle of the night, it will "pee" on me and wake me up. I also have a "Whisper" mask which is one of the lightest mask and less intrusive masks out there. Some nights, I play the trumpet and that wakes me up. So I have the mask pretty tight on my face to the point it leaves a mark on my nose. But I hate having it vibrating on my face. Of all the new masks, this is the most comfortable one for me. My husband has a bigger mask set and he hates his too when he changes it until he breaks it in. Then it does not bother him so much.
I am not sure why you have pressure other than you are covering the release air valve on the mask, which is usually were the hose attaches to the mask. I sleep on my back so it is always clear. I did not sleep on my back until the CPAP so that too was a change.
If you feel like you are suffocating, then the mask is not right. You are still having apnea. Do not hesitate to try different masks. This is a prescription device and if it is not working for you, change it. You wouldn't take a pill if it wasn't working for you, would you?
Disrupted sleep is very dangerous for your health. I did not have kidney disease because of my lack of sleep. Matter of fact, I was not diagnosed with CKD for twenty five years later. But I did get high blood pressure which is bad for the kidneys. I also think that sleep disorders can cause weight gain.
However, I did some research on the intranet and there is a clear connection to sleep apnea and kidney disease. I am glad I looked it up because it is clearly a significant issue.
So my suggestion is check to make sure the mask is releasing air correctly. It should flow at a steady stream. Make sure at night you are not rolling into your pillow.
I would make an appointment with the respiratory specialist connected with your sleep study for a better fit mask or maybe a lighter one. They have them now as just nasal cannulas. You have the right to get one you like and will wear. The air is supposed to continue to blow into your lungs when you stop breathing which is what apnea is. The air flow may not be enough to compensate for your level of apnea too. If it is waking you up, it is not right and do not let them just tell you you will get used to it. You are harming yourself more with only hour intervals of sleep.
Call your homecare company and tell them what's happening. They'll probably come and check the machine. If the machine is ok you may need to just give it some time to adjust.
Having something on your face at night is can be hard to adjust to.
I just started on my CPAP in August, around the time I went for a transplant evaluation. I, too have mild sleep apnea/hyponeas an hour without the machine. With it, I certainly feel much more well-rested.
As for the mask, when I went in for the sleep study, they use the nasal mask. It made me feel like I was suffocating as well.
Since I am a mouth-breather, I asked for a full face mask from the start. I adjusted to it quite well. My settings are 12-18. I do have to cinch it down to keep it from leaking.
As others have stated, talk to your prescriber. My guess is that one of the reasons you are feeling swamped is that it is leaking. When you have a leak, the machine compensates to keep it at your predetermined level.
Hello, I love my CPAP mask and have used it for 13 years with no problem. I sleep on either side. My pressure setting is 12, and my mask only covers my nose, It is not too tight on my face, but does leave lines on my face sometimes. One trick that helped me when I first got it was to reach up over my head and make sure the hose is tucked under the pillow over my head. This gives a third way to hold the mask in place. If I were you I would call the company that supplies you with nose guards and hoses and have them send out their respiratory specialist. Make sure the mask is the proper size for your head. Also, make sure there is not a leak in the hose. I sleep with a small pillow between my knees to keep from turning in my sleep. My CPAP machine is about 10 inches below my mattress to keep water from collecting in the hose and gurgling. I have a So Clean machine to clean my CPAP daily.
For years I had problems with apnea and snoring, but after I used the machine for a while I found that when I nap in the afternoon I feel much better with my Oxygen to go to 97%. I have stage 4 kidney disease and my hemoglobin was 9.6 so I needed oxygen to just keep going. Now I get a shot of Procrit that releases RBC's into my blood stream. I also no longer have PCa, just diabetes, heart disease and kidney disease. So just keep truckin'.
People have to be careful with Camomile tea as it is a natural blood thinner. Teas and supplements can be very dangerous for people with CKD which is why they should see their doctor before taking anything.
Thanks again, I just started it about 25 days back. I am a tea drinker, finding it a bit difficult to stop it, so started Camomile.! Is green tea ok . Is tea bad because it contains caffeine.
I have spoken with the tech team about this and they have just told me to persist and I have not really been offered any other advice.
I find myself 2 weeks later, no further on. I have tried getting used to it by resting during the day with it on. This seems fine. But when I sleep in the mask I seem to wake up suffocating and unable to breathe.
Don't really know what else to do as I get a better nights sleep without the CPAP. I only have the machine because my oxygen levels are low, I have never had problems sleeping.
Well, I have an appointment on Wednesday and will try to get some more ideas from them then. If they can't help me, I can see no other option but to give up. It is frustrating as I was told that it would help to extend the life of my new kidney.
Your post is concerning. Why would you allow them to harm you by telling you to persist with something that does not work? It is keeping you from sleeping. You need the oxygen, you need the sleep and yet they are saying just get used to it. I am sorry, but there are many companies out there that provide CPAP products. I would first call you PCP and or your nephrologist. Tell them what is going on.
This statement is for everybody who comes up with situations like this. You must advocate for yourself. There are so many companies, doctors and health care providers that think they can push you off by saying get used to it. I worked in health care and was responsible for patient advocacy training. Patients have rights by Federal law to get the treatment they deserve with the best medical care available.
"Article 25 of the United Nations' 1948 Universal Declaration of Human Rights states that "Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services."" en.m.wikipedia.org/wiki/Rig...
You are right of course. However, I am in the UK and am under the NHS so cannot go to another care provider as I would have to pay to go private which is not possible for me.
I will though, make every effort to find a solution at my appointment on Wednesday. I don't really know what else they can do to make this work for me. I have spoken with people who say it works well for them and they feel great now so it is very frustrating.
If we cannot reach a suitable solution this week, I will make an appointment to see my sleep consultant again; this will take 3 to 6 months! I was first refered to the sleep clinic by my surgeon in February 2017 and only started CPAP 6 weeks ago. The wheels of this clinic run very slowly indeed.
Thanks for your concern and support.
I will do what I can as I am determined to find a solution.
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New here and need a little advice!!
27 years off dialysis
Cancer/AKI to low GFR
I regret so much that I haven’t been taking my medicine properly 
