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Re: New Doctor - New Thoughts & Ideas

Posted: Tue Apr 16, 2013 8:41 pm
by DJD52
Happy you have found a doctor like that one!! Great doctors do seem to be a rare species.
Sincerely glad to see you state you have hope for some improvement since seeing him. Hope really helps each day. and I hope you do start seeing the improvement and feeling better!

Re: New Doctor - New Thoughts & Ideas

Posted: Tue Apr 16, 2013 10:05 pm
by DoriC
Maddy, I can picture the whole visit! I'd like to be a fly on the wall when he talks about his new "case" with the guys in the Doctors Lounge! Since you mentioned that he was a Resident I gather that he's young, energetic, and very enthusiastic about his chosen field. He may have some good new ideas that will help you. Good for you!

Re: New Doctor - New Thoughts & Ideas

Posted: Wed Apr 17, 2013 5:20 am
by Madalot
DoriC wrote:Maddy, I can picture the whole visit! I'd like to be a fly on the wall when he talks about his new "case" with the guys in the Doctors Lounge! Since you mentioned that he was a Resident I gather that he's young, energetic, and very enthusiastic about his chosen field. He may have some good new ideas that will help you. Good for you!
I did say "Resident" but I meant "Attending" -- he's a little older but he seems very okay with an involved patient! But I have to remind myself that I had a good feeling after my first visit with the guy last year. Second visit - not so much.

But I DO think this guy is more in line with what I need and really seems okay, or more than okay, with a patient like me.

Re: New Doctor - New Thoughts & Ideas

Posted: Wed Apr 17, 2013 8:45 am
by snuginarug
Mad, I am thrilled you finally have someone who cares about improving your quality of life. This whole time your docs have been shrugging their shoulders and saying "Oh well," really bothered me. I hate when medical professionals do that!

Here's hoping your doctor/patient relationship continues to be positive and that the outcome of your combined work will bear fruit.

((( hugs )))

Re: New Doctor - New Thoughts & Ideas

Posted: Wed Apr 17, 2013 8:56 am
by Madalot
I appreciate all the kindness and support!

Not blaming it on the higher pressure (yet) but I'm trying to get the number of the truck that ran over me sometime last night!!! I was very tired after a trip to the doctor, but I slept HARD. I don't think I moved, AT ALL, from 11:30 - 6:15 when the alarm went off. I woke up, SO tired, but stiff as a board and I still hurt!

The higher pressure (16) was a little difficult starting out, but I fell asleep almost immediately.

I am going to keep going with this. Hopefully last night was just being over tired.

Re: New Doctor - New Thoughts & Ideas

Posted: Wed Apr 17, 2013 9:23 am
by DoriC
Going by the recommendations of the forum, should you give each pressure increase a few nights to establish a trend rather than change pressure every night. That's what always get me in trouble but of course you're following Dr's orders so it's your call. Keep us posted please!

Re: New Doctor - New Thoughts & Ideas

Posted: Wed Apr 17, 2013 9:34 am
by Madalot
DoriC wrote:Going by the recommendations of the forum, should you give each pressure increase a few nights to establish a trend rather than change pressure every night. That's what always get me in trouble but of course you're following Dr's orders so it's your call. Keep us posted please!
I'm giving each increase SEVERAL nights, then do an overnight. He wants me to increase, adjust for a night or two, do a test and depending on the result, increase again and keep doing this until I get to 18. It will take more than a week I'm sure.

He is letting me set the pace.

Re: New Doctor - New Thoughts & Ideas

Posted: Wed Apr 17, 2013 9:37 am
by johnthomasmacdonald
sounds like you got a great doctor that you can work with - I'm envious. As to complaints from forum members about your posting. Ignore it. If you have issues you'd like to raise or discuss, always do so. If some people don't like it, I don't see the part where anyone is forced to read or comment on your thread.

Re: New Doctor - New Thoughts & Ideas

Posted: Wed Apr 17, 2013 9:50 am
by khauser
I'm a little late to this thread. It really sounds like you got the best doc possible. He's a lot like my doctor (listens, understands YOU are a critical part of your medical team, doesn't treat you like you just graduated third grade, etc), but he's also in the two most important fields for your specific needs!

It would be easy money for him to just deal with the insurance needs you have, but he's obviously truly caring about his patients.

If I were you I'd chain him to his desk right now. These are the ones we don't want to let slip away!

Happy to hear this ... I know it'll help you a LOT!

Re: New Doctor - New Thoughts & Ideas

Posted: Wed Apr 17, 2013 9:59 am
by Madalot
We'll see how he responds when I fax him my information in a few weeks AND at my next appointment.

I thought the first Pulmonologist was going to be GREAT -- my first appointment. It went to crap at my second appointment and I had to pull a lot of strings to get him to release me so I could see this doctor.

BUT -- this doctor APPEARS to be more like my original one - deals with issues from diseases but is also a SLEEP specialist.

I thought his comment about the breathing issues from the Muscular disease being under control but the OSA was not. Very astute in my opinion, something I've been saying for quite a while. I'm crossing my fingers that he really "gets" it - it seems so at this point.

Re: New Doctor - New Thoughts & Ideas

Posted: Wed Apr 17, 2013 5:35 pm
by DoriC
Madalot wrote:We'll see how he responds when I fax him my information in a few weeks AND at my next appointment.

I thought his comment about the breathing issues from the Muscular disease being under control but the OSA was not. Very astute in my opinion, something I've been saying for quite a while. I'm crossing my fingers that he really "gets" it - it seems so at this point.
Yes, I remember you were saying that all along but seemed to give up because it wasn't being addressed. The patient usually knows his own body and you may find your answers now. I understand your "cautious optimism" though.

Re: New Doctor - New Thoughts & Ideas

Posted: Wed Apr 17, 2013 7:45 pm
by JohnBFisher
Great news about your new doctor. Here's hoping he can even improve things for you a bit. And if not, you will at least know that he *tried*. And often that's all that matters. Sure, we would like things to be better, but that's not always in the cards. But knowing that the doctor cares enough to *really* look at the information and be willing to work with you... Wow!

Glad for this wonderful news for you.

Re: New Doctor - New Thoughts & Ideas

Posted: Wed Apr 17, 2013 8:54 pm
by Nooblakahn
Hey. Im late to this thread too. Glad it worked well and hope to hear of continued success! As others have said you could not ask for a much better start.

Glad to see you posting. I was just thinking of you the other day... actually probably the same day you posted this now that I think of it.

Re: New Doctor - New Thoughts & Ideas

Posted: Thu Apr 18, 2013 5:11 am
by Madalot
I am very grateful for the interest and how much you all care & support.

I don't know what happened, but last night was a bit rough. I fell asleep fine, but "something" woke me up 30 minutes in. I thought I heard a strange noise on my cart, thinking it was the oxygen concentrator. Everything seemed fine so I laid back down to sleep again, but the air coming through the mask smelled funky. It was really weird.

Then my husband started his kicking nonsense and when *I* got restless because of it, he asked me if I was okay. I told him he wouldn't stop moving and he said "I'm NOT moving!!" Uh yeah, you are!!

I really think he has RLS. Getting him evaluated for it is going to be a monumental task, if even possible.

The good news seems that at 16, I don't feel like I'm waking up as much and I feel like I'm sleeping much more soundly. Since my average IPAP tends to be close to that, perhaps the changing pressures were causing more disturbances that we thought.

I think I'm going to remember what Dori reminded me of and NOT move to 17 too quickly. Give myself several days (not just 2 or 3) to adjust before increasing again.

Re: New Doctor - New Thoughts & Ideas

Posted: Thu Apr 18, 2013 5:33 am
by Nooblakahn
Good idea. It would stink for 16 to be your magical number to make you feel great, but then not know it because you moved on to the next number to soon.