New Doctor - Feeling More Clarity

Madalot wrote:It's hard to believe I'm sleeping at IPAP 18, with a full face mask AND minimal leaking. Never thought it possible.

Careful....don't tempt the Aliens to make a visit. They are on vacation at Pugsy's doing some fishing.

Maddy,

If you need some help with the leaks at 18 let me know. Right now it sounds like you have it working for you and I hope that continues.

Did you hear yourself say you masked up in your recliner nap. It almost sounds like you got your spunk back.
You have been through a lot to get here. Congratulations on your hard work and your determination to make it work better. You are a true inspiration to me. I know you encourage those who would become discouraged and quit to keep trying and not give up. Way to go gal!

I wish you continued success, take care.

Karen

Thank you....

Yesterday was Sunday so it was mask/filter/hose cleaning day. I screwed up and mixed up the seals (hubby uses L and I use M). He was sound alseep, apparently okay with the M, but when I masked up -- Oh Boy. What a ride that was. I knew something was wrong because it didn't feel right and leaks -- holy cow.

I looked and saw what happened. Hubby was sleeping so peacefully that I didn't have the heart to wake him up to switch the seals.

I managed to get up and get another seal from the cabinet AND get it placed okay in the mask. That, in itself, is an accomplishment (it was either that or go without the machine).

But I did notice that his L seal was all floppy so I told him I thought he needed a new one (he insisted that the L is much more comfortable and that the M bothered him last night). So we both have a new seal (I just trashed my M after he used it all night).

Hopefully tonight will go as smoothly. Fingers crossed....

Good luck

sleepstar wrote:Good luck

Thank you. I went to this doctor ONLY because I *HAVE* to be under the care of a Pulmonologist in order for insurance to keep paying for the Trilogy. I was NOT complaining of anything when I saw him and was clear I was there to get established and start working with him.

HE looked at the documentation and said HE wasn't thrilled with the Overnight Pulse Ox test and felt the dips were indicative of a problem, even though the oxygen level never went below 90%.

This experiment to increase the Min IPAP was his idea and suggestion and obviously I am cooperating because -- that's what I do now. Cooperate.....

Madalot,

I don't say much, but just know I'm in the background cheering for you.

I finally got settled in at Min IPAP 18 and got a good Overnight Pulse Ox Test last night (I did one the previous night but it was riddled with artifact and pretty much worthless).

To my untrained eye, this IS showing what he wanted - more of a stable line. There was a little of the up/down pattern early in the night, but it settled down for the remainder of the night.

I have the overnight pulse ox report from each increase AND the detailed information for the nights at each increase from the Trilogy. At 18, leaks are higher, but still within what I have been told is acceptable. Again to my untrained eye, everything else looks okay.

My first impression is that the higher minimum IPAP (even at 16) enabled me to sleep more soundly with fewer awakenings, probably because there aren't as many pressure changes. I probably should do a Zeo test to confirm my belief that I am not waking up as much. Maybe tonight if I feel like it.

I'm trying to wrap my mind around how I was titrated to an IPAP of 11 in Nov 2009 and now we're looking at a MIN IPAP of 18 three years later.

Time to get all this to my doctor and let him look at it and see what he thinks. I may end up mailing the entire package to him since faxing it would be a little time consuming.

Stay tuned to see what *his* impression is.

Kiralynx wrote:Madalot,

I don't say much, but just know I'm in the background cheering for you.

Me too.

Drowsy Dancer wrote:

Kiralynx wrote:Madalot,

I don't say much, but just know I'm in the background cheering for you.

Me too.

My thanks to you both - and everyone else that posts or watches quietly.

My doctor really wanted the documentation faxed. I pulled the Trilogy Nightly Detail for the night before and the night of each overnight pulse ox test at each level (16, 17 & 18) and included the Trilogy Settings. Came to 19 pages and after a little bit of difficulty, managed to get it faxed to him.

Now -- we wait to see what he says. Personally, I'd be content to move back to 16.

My new Pulmonologist IS quick. A little over 24 hours after I faxed him 19 pages, I get a call from him.

He wants me to stay at Min IPAP 18. He said it looked like the best. If I can't tolerate 18 (which I can) he said he would be OKAY at 16 or 17, but would prefer it if I stayed at 18.

So, 18 it is.

And life goes on.....

Wow, you do have a great dr - most drs don't call back that well & I don't know any who will actually read a 19 pg fax. I wish I had a dr as involved as your is.

Hang in there!

Jen

At this stage, I am feeling much more clarity about what the issues are and which are solveable and which are just "deal with it." -- And I owe a HUGE thanks to my new Pulmonologist.

I think raising my MIN IPAP, we have taken care of the stray apneas that were probably plaguing me and causing disrupted sleep. Pressure-induced centrals is a concern, but the Trilogy should take care of those so I'm not going to worry about that.

I am sleeping like a log now, which is good sleepwise, bad pain wise. Staying in one position too long results in pain.

When I wake up in pain, I am assessing it to see *if* there is something I can do. The pressure pain in my thigh? Tough one and probably not solveable. My knees -- rubbing together or staying on top of each other 5-6+ hours without any relief has caused horrendous pain (I woke up screaming one night). I've got those taken care of by applying tons of lotion to prevent the roughness when rubbed together and sleep with a pillow between them to prevent the pressure pain.

My sleep hygiene sucks and some of it is fixable, some is not. Regardless, I need to get MORE sleep during the week and that will require me to force myself to go to bed/sleep, even if I'm not dozing off. I've stopped going to sleep because of fighting the ventilator if I'm not tired enough, but hopefully a few nights of saying "bedtime!!!" will fix it. Will probably have a rough night or two, but there is NO DOUBT that 6 - 6.5 hours is NOT going to cut it.

There is also NO DOUBT that I've had more energy during the day (even at IPAP 16). I am doing more physically during the day, but that has a downside in that I am OVERDOING it on a pretty regular basis. Assuming IPAP 18 is responsible for the increased energy and it stays, I will have to find a happy medium.

I am also going to make a special appointment with my Primary Care doctor to discuss my medications. I want to ask him about adding something like Cymbalta for PAIN, but knowing it's an antidepressant might also help stablize my moods. I will call him Monday and set up an appointment for that.

Clarity? I think so.

My sister-in-law found the most effective lotion for her psoriasis (OTC or otherwise) was Pure Hemp from Sally Beauty supply.
(My boss saw it on my desk and turned the bottle around so only the back was showing.)
{{{Hug}}}

chunkyfrog wrote:My sister-in-law found the most effective lotion for her psoriasis (OTC or otherwise) was Pure Hemp from Sally Beauty supply.
(My boss saw it on my desk and turned the bottle around so only the back was showing.)
{{{Hug}}}

Right now, I'm using something from Jergens. Anything I use MUST come in a pump bottle. My hands aren't strong enough to squeeze bottles of lotion (or shampoo/conditioner). I had a favorite lotion from St. Ives that I couldn't use because I couldn't squeeze it out of the bottle. I found some pump bottles online and had my son squeeze the lotion into them so I could use it. I keep that on my desk.

I misspoke; it is called Moist Hemp; and the large size comes with a pump already on it.
http://www.sallybeauty.com/Hemp-Body-Mo ... lt,pd.html
18 ounces is pretty big, but the pump makes it easier to fill small bottles from it.
Those little pump bottles are great; I'm thinking of using them for more things.
Also the little travel silicone squeeze bottles are very easy to squeeze (Go Toobs, others).
The little valve could be trimmed away with nail scissors if it offers too much resistance.