What ? to ask one of my docs tomorrow?

Sigridonocturna · Post by **Sigridonocturna** » Mon Nov 27, 2017 11:31 pm

Hi, after just shy of one month, going to my doc group for a follow up. You know you've got too many docs when you Can't keep up with which ordered what why & when!
So first, attempted 2 to see rheumatologist for assessment. They cancelled on me twice! So I don't have answers to bone and joint issues, nor odd lab values.
Tis rather odd since I informed the reception that I may have a torn knee cartilage. Will just limp a tad more...
So I'm following with endocrinologist, that's fairly stablized, but I don't have current numbers, as starting CPAP, has thrown my morning routine off. Yet they all will listen(really, a great thing) so I hope to have a report from one or both home and sleep lab results.

I just don't know what to ask, or expect.

My pulmonologist & hematologist both agreed upon the need to investigate.(R/o sleep breathing issue of some sort
[So hematologist looks to have been right. Not sleeping well enough, deep enough, because of not breathing well during sleep led my body to begin a marathon of over production of red blood cells. So for many years, I self treated, an unknown condition, by donating blood as regularly as they would accept me!
So do I feel better? Not quite yet. Once the bone pain gets resolved, things will start to turn better. I know that I am on the right track. Its just the process through which that I'm struggling with.
I am frustrated with company whom issued equipment. They called, left a vague message. When I actually spoke to a human ( no kidding, ) had used phone so much the battery died! Later found company didn't like that my nightly use was about four hours. Well why do you think this device was ordered? [ sorry, snarkism had to rear ugly head] but between pain, exhaustion, 16 hour days, hassle with equipment..of course..if I don't sleep, then I go read, write, heck even house clean at 3 or 4 am! and try to catch more sleep later. (after pain meds take effect!)
So I just gave in with Equipment folks and sent an e-mail asking to send an extra small head gear, when the best fitting ffm is small, but they only had med to large head gear? Why?(bangs head against wall!!!) So hopefully I'll hear something.

In all seriousness, this forum is the only contact with any other cpap hose head folks in the know. I do greatly appreciate your allowing me in, and permitting my "overwatch guest" status, as the time spent reading, is my only way of learning, until I experience it first hand, for myself. Then in those moments, I recall that someone else had xyz..and off I go to re-read a post to gather a shared solution.
So any hints, jewels of information shared would greatly be appreciated. Thx.

ajack · Post by **ajack** » Tue Nov 28, 2017 3:17 am

I'd ask, "are those sweets just for kids, or can anyone have them?"
just keep asking why, until you feel you have a good understanding.
It's really hard to suggest what to ask without seeing your sleepyhead charts. You have a good machine. I would download sleepyhead and get some charts up.

Sigridonocturna · Post by **Sigridonocturna** » Tue Nov 28, 2017 8:13 am

Ummm,I was afraid that would be.....give me a bit. I do have S.H. but user knowledge base...using app on my phone whilst data on laptop. So in a bit, I will get that ( when I also scan & e-mail my time card to my employer! ) All these newer skills, that I'm learning/gaining, just takes time. Now I' ve gotta play taxi to my family! So thanks for input. Give me 2 hrs ish and I'll re-post.

Sigridonocturna · Post by **Sigridonocturna** » Tue Nov 28, 2017 9:37 am

part way there.... need more time to post screen shot grabs. Thanks folks!

ChicagoGranny · Post by **ChicagoGranny** » Tue Nov 28, 2017 9:40 am

We are NOT going to blast you if you don't get them up in a hurry.

Okie bipap · Post by **Okie bipap** » Tue Nov 28, 2017 10:42 am

If you need a full face mask with smaller head gear, I would recommend the Resmed Air Fit F20 or Air Soft F20 mask. They both have a small headgear available.

Sigridonocturna · Post by **Sigridonocturna** » Tue Nov 28, 2017 1:56 pm

Update!!

Back frm docs: saw one; happy with progress. YEAH!! As I was checking out, found the Pulm doc was in & had an opening: BINGO! She's happy!
Yes she printed report, and don't ya know, they didn't find which printer it went to.... Oh well. Basic, when asleep on my back, obstructive index about 90 %. Side a little better to sleep with: Lab was supposed to have done a true split night test: BUT somehow the first part of night, ratios not high enough to warrant the using the CPAP mask. So in either case, I now have it in home, and it is set well, Right now pulm doesn't see the need for oximetry. At some future point, if something changes, can address at that time. She too, confirms what hematologist says that improving blood numbers show that by treating CPAP, we are starting to get at the root issues! As for diagnosis of Asthma, I may not meet the classic definition for asthma, she is now backing off her stance of earlier this summer, of having a massive challenge study, to actually give to me by inhalation, what I am allergic to and see what happens, thus the reason for specialized lab is resuscitation equipment readily available. ( Thankfully, now that I am working, she doesn't see the need for this at this moment!) Still she would like for me to reduce to only one Dulera, inhaler, and use the other as a rescue only( more like what they were initially intended for anyways!) So from her my "orders" are lose 5 lbs, keep up with CPAP nightly, reduce inhalers. and stay the course.
From endocrinologist, she also stay the course, ignore the kids junk foods! keep to my own diet! (much more vegetables etc) Daily weight training and resistance training!!! Hopefully my Rx won't need much adjusting, yet she is offering it. My BMI has dropped 36.2 is my new total! A drop of three points in about six months. Good! So now to return some of the many phone calls and see if I can get the head gear adjusted so that the leak rate doesn't become an issue!

As for uploading S.H. data, someone with more experience is going to have to assist me! I got info for my pulm, only to find her assist say, "just bring the data card in!" To get info here, I got screen shots, but have no idea how to get them to transfer between platforms! A molehill for another time. Got to get my time card uploaded, all by myself, as my eldest daughter is at work and Hubby is also at work! Time for "big girl" pants, and figure it out!

Thanks

ChicagoGranny · Post by **ChicagoGranny** » Tue Nov 28, 2017 6:07 pm

Sigridonocturna wrote:To get info here, I got screen shots, but have no idea how to get them to transfer between platforms!

Open an account on imgur.com and post the screen shot there. Then post the link in this thread.

Note that we only need to see these four graphs (Too many graphs displayed makes it hard to read.):

Flow Rate
Pressure
Leak Rate
Flow Limit

Here are some tips on organizing your screenshots - https://sleep.tnet.com/resources/sleepyhead/shorganize

What ? to ask one of my docs tomorrow?

What ? to ask one of my docs tomorrow?

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