New Doctor - Feeling More Clarity

[Madalot]

With all due respect to Avi who has made it very clear that he feels I have wasted enough time and space on this forum - I think there are enough people that DO want to know what is going on, especially if something changes.

Anyone that isn't interested, or feels as hostile as Avi, please just ignore. I don't need that crap right now.

And I admit that I'm being pretty snarky here and I apologize. I have been having a very hard time lately and am NOT in the best of moods.

My previous pulmonologist gave up her clinic practice and the one I saw last year didn't set well. I found another doctor who is both a Pulmonologist AND a Sleep Specialist. Had my first appointment today.

In preparation for the appointment, I compiled documentation and had a nice packet, all indexed and easy to find, that included:

Medication & Doctor Information
Electric Company Medical Equipment Certification Form
Order for DME (copy of previous with small changes)
Overnight Pulse Ox Report from 4/13
Zeo Sleep Report from 4/13
Trilogy Downloads with daily detail & summary
Reports from All 3 Sleep Studies
Raw Data from Sleep Study April 2011

The Fellow took my entire packet (obviously impressed that I had it) and took it to the Resident (Dr. C) and they spent a good 15-20 minutes going over it.

Dr. C came in and said the only thing that concerned him was the overnight pulse ox. He showed me two clusters where he felt I was either on my back (I assured him I wasn't) or was in REM sleep. While the oxygen level stayed above 90, he said looking at it, it is obvious that I'm having some kind of apneas or hyponeas.

I told him that the consensus was that we had everything as good as we could get it, despite my continuing complaints of daytime sleepiness. His response was "Well, I don't know about that. It doesn't look like we have the OSA under control. I don't like to see those patterns."

We discussed everything and he has asked me to gradually increase my Minimum IPAP, doing an overnight at each level until I get to 18 (I'm at 15 now). He wants me to send him the reports and we'll see if we can get those apneas to stop. He thinks that if we can get this under better control, the daytime sleepiness might improve.

He said that he is very impressed with what I am doing and am obviously taking EXCELLENT care of myself. He said I make his job A LOT easier and THANKED ME for all that *I* do.

And now we're actually going to try something to address this sleepiness? O.M.G.

[squid13]

Madalot it looks like you may have found a winner here. I hope everything works out OK.

[Pugsy]

At least he listens and cares and is will to try something in an effort to help resolve the daytime sleepiness instead of throwing up his hands and saying "this is the best you can hope for".
Gotta give him credit for at least thinking about it and wanting to try.

Good job...you may just have a keeper here. Honest and willing to try. That's worth a lot.

[BlackSpinner]

Wow, a doctor who listens and cares and likes that you take an interest in your therapy. What a great find after all your struggles.

I suggest you put Avi and others like him on your foe list. I just skip most of his posts, they are mostly hot air, probably from his anal passage. Which is where he probably does his nasal rinses too.

[NotLazyJustTired]

Sounds like a keeper! Here's hoping the pressure increases work for you. And congrats on taking the initiative. Nobody cares about your health more than you do. But it is great that you've found a doc that will collaborate with you on this. Sleep Well!

[jencat824]

Sounds great! You found a Dr who is listening & participating with you as a partner in your care. This is wonderful & I'm happy for you. As for AVI & those like him, just ignore their crap & there are those of us here who care. I care, & as you can see, so do others so keep posting, we are here for you.

You have done a lot of work toward getting the best outcome of your therapy. Its great that you found a Dr who appreciates the work, now perhaps you can get your therapy 'tweaked' so that the EDS goes away, or at least gets better. I will be watching for your future posts to see how its going.

Jen

[kaiasgram]

Maddie, there are more than just "enough" people who care about you and want to know how you're doing. It's hopeful news about your new doc, and I'm sure a lot of us will want to follow your progress with the new path you're taking.

Carry on, we're with you.

[StuUnderPressure]

We knew there were some good ones out there. Were just having trouble finding them.

Looks like you found one!

[n0hardmask]

Hi, Maddy............that's one cute puppy!

I'm real happy for you and quite glad you posted. You've been through the wringer and we want to HORRAY with and for you.
My only problem is- would you be willing to share the sleep doc with others? I'm jelous Please keep us posted
>the puppy looks a bit like our Beagle we had from '75 till about '97

[ems]

On the new doctor... I'm so happy for you. It has to be such a relief to find a doctor who actually CARES about your health! Would you kindly PM me where you live... seriously considering moving.

Also, you were well prepared for your appointment. I doubt many of his patients would take the time to do what you did. It obviously paid off for you in so many ways.

As far as the gentleman named in your first sentence - who cares... type away!

[Madalot]

You all are very kind, but that doesn't surprise me as most of the people on this forum are just fabulous.

The funny thing about this appointment is I wasn't complaining about the fatigue. They asked why I was there (what could they do for me) and I explained that being on the Trilogy, I have to be under the regular care of a Pulmonologist for insurance to keep paying for it. I had a couple forms I needed (the Power Company & the DME Order) but beyond that, I was really okay.

This doctor obviously looked over the documentation and saw the report and was concerned about it. He said he didn't like it. It's what most of my reports have looked like over the last couple years. I was surprised.

I will start the IPAP increases tonight and we will see what happens.

[Drowsy Dancer]

The Fellow took my entire packet (obviously impressed that I had it) and took it to the Resident (Dr. C) and they spent a good 15-20 minutes going over it. <snip>
He said that he is very impressed with what I am doing and am obviously taking EXCELLENT care of myself. He said I make his job A LOT easier and THANKED ME for all that *I* do.

These are the two parts that impressed me the most. Keep us posted about your work with your new team.

[porete]

A very big CONGRATULATIONS!! It is so wonderful to find an MD that really cares about you and your problems, and is not in such a hurry to really stop pay attention and see what kind of progress you've made and how best to help you. I am amazed he took the time to look through your whole report AND to suggest changes based on what he read. Let us know how it goes with the IPAP increases.

[Madalot]

The Fellow took my entire packet (obviously impressed that I had it) and took it to the Resident (Dr. C) and they spent a good 15-20 minutes going over it. <snip>
He said that he is very impressed with what I am doing and am obviously taking EXCELLENT care of myself. He said I make his job A LOT easier and THANKED ME for all that *I* do.

These are the two parts that impressed me the most. Keep us posted about your work with your new team.

After the Fellow left with my package (he even took my picture of my cart setup, which did surprise me), my husband and I were sitting there for quite a while, even commenting that it was taking an awful long time for Dr. C to come in. Obviously he was going through my documentation!

The look on his face when he started writing an order for a DME to do the Overnight Pulse Ox testing and I stopped him saying that the report he was looking at was from MY monitor. I that we had done a comparison between a DME monitor & mine and the results were consistent.

He looked at me like I was from another planet (but in a good way) then made his comment about how what I was doing made his job easier.

A very big CONGRATULATIONS!! It is so wonderful to find an MD that really cares about you and your problems, and is not in such a hurry to really stop pay attention and see what kind of progress you've made and how best to help you. I am amazed he took the time to look through your whole report AND to suggest changes based on what he read. Let us know how it goes with the IPAP increases.

I will. For the first time in a LONG time, I actually have hope that I might get some improvement. I'm not expecting it (don't want to be too disappointed if it doesn't solve anything) but it's nice to have something new to try.

[NateS]

You are very, very fortunate to have found a doctor like this, and he/she is very lucky to have you as a patient!

Regards, Nate