We got the results of KayTar's sleep study earlier this week, but we don't know what to do with them! We're having some issues being turfed between the pulmonologist/sleep doc and the neurologist. The main problem is that she had 31 central apneas (where the brain fails to signal the body to breathe) that lasted up to 30 seconds and were associated with desaturations to the mid/low 80s. Also, her oxygen saturation was only 95% when awake and 93-94% when asleep, which is lower than I'd like even if it is not hugely abnormal. Her lowest oxygen saturation was 83% with 23 desaturations of 3% or more. Other subtle abnormalities were her sleep efficiency, 71.1%, 111 arousals, and she spent a tiny amount of time with her EtCO2 above 50. Her AHI/CAI are 4.5 overall, but 5.7 in NREM.
I'm a little frustrated right now from the lack of a response I'm getting from her physicians, because I'm a bit concerned about the results of this study. 6 months ago, her study looked significantly better. She had only 15 central apneas that were only 8-16 seconds in duration and her oxygen levels never dropped below 91%. Her average oxygen saturation was 97%. Her AHI was 2.0. All of it was worse this time and it has only been 6 months since the last study. She is also "forgetting" to breathe still during the day and we have to remind her. It doesn't really make sense to me that someone can forget to breathe, but when she is concentrating on something, she does. I wonder if it is related to the central apneas.
Between the daytime symptoms she has, the "forgetting" to breathe, the lower average oxygen levels overall, the increased and prolonged central apneas, and the desaturations...I am really hoping that the pulmonologist will recommend treatment this time, at least on a trial basis. I also really want to be able to monitor her oxygen levels at home with a real pulse oximeter. I know other patients of our pulmonologist who have been treated with fewer significant issues than KayTar is exhibiting, so I hope that once we are really able to connect with her and review all of this (soon, I hope!), she will have good suggestions for what to do next!
6 comments:
Wow, that is definitely worrisome. You're right about her AHI being high. Even at 2.0 it was a little high for her to be as high functioning as possible during the daytime. Under 1.0 would be ideal, as low as under .4, if possible. The nice thing about some of the machines they are issuing now (and you might ask about this) is that some of them actually monitor AHI during use, and you can check your own stats. Some don't have that feature for patient use, but if you learn to read them, you can still monitor them yourself and alert doctors if her numbers go the wrong way. I will say her rising numbers don't surprise me. I had a sleep doctor explain it to me like this:
If you have a brick in a bag and you carry it around, it's not really that heavy, and it doesn't cause you any problems. You pick up another brick the next day, and put it in your bag. It still doesn't bother you and isn't that heavy. When you add a brick every day, six months later, you add one brick too many and you have a broken back. Sleep disorders are definitely that way. Because sleep can affect so many different functions of the body, particularly things which involve the pituitary gland communicating with other body parts (as you probably know, that generally happens during REM sleep and with sleep disorders, often patients CAN'T experience REM sleep), the symptoms and problems just build up. These symptoms may include things that have no outward relation to sleep, such as thyroid disorders, calcium depletion, weight gain, morning headaches, etc.
Have you considered asking the sleep clinic to recommend a sleep specialist who could take a look at the study and prescribe a course of treatment? If the other doctors want to play hands-off, a sleep specialist might still be willing. I would recommend mine, but he's in the Huntsville area.
Her pulmonologist is also a sleep specialist, but if she doesn't get back to us soon, we'll follow up with someone else. She has an appointment in August, but I don't really want to wait that long. My big concern is that unlike OSA, CSA is a "failing" of the brain, so progression may have other implications with K's underlying disorder. That is just speculation on my part, though! The disease she is suspected of having is a disease of energy metabolism, so if that is the case, I don't want her working against extra roadblocks like this if we can fix part of it for her. Thanks, Chelsea!
I am sorry that you are having such a hard time getting help. I hope this week brings answers. The increase is scary.
I am sorry that you are having such a hard time getting help. I hope this week brings answers. The increase is scary.
I really hope the pulmonologist comes up with a good treatment solution for KayTar -Higher O2 and better sleep will mean more energy, which is vital for her.
Bless KayTar's heart! I can't believe the pulmonologist isn't doing anything! Those are lousy results! I will be praying. Keep me updated!
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