Semi OT - What this Forum Has Done

[Madalot]

Those that know me from here know that I traveled a long road towards my therapy and had/still have challenges above and beyond OSA.

I had my 6-month checkup last week (I have to see a Pulmonary Specialist on a regular basis or insurance won't pay for the Trilogy). I had done my overnight pulse ox (my own monitor) and downloaded my treatment reports from Direct View and printed them out for Dr. C.

He came in and brought his new PA, nice young man. As we were talking and going over my settings (they print at the end of the report) and my doctor asked me about the secondary settings, which are the AVAPS-AE. I explained what those settings were and how we had tried them, but I was having issues with the FOTs and due to personal reasons, decided to bag that experiment and go back to basic AVAPS, with a set EPAP of 10, which is where I am now. The new PA kept raising his eyebrows and said many times "Wow, you know more about this than I do!" When I mentioned that I set my husband up by borrowing an S9 Auto and titrating him at home, the PA asked me if I was a Respiratory Therapist!!! I laughed and said, no, I'm not and he said "You should be!!"

My doctor turned to his new PA and said "Of all my patients, this one is the most educated and takes the best care of herself. She's a great patient to have!!" And to that I added "Thank you. But I know my limits and would never make any changes without discussing them with you first. If a problem arises, I'll let you know immediately so we can figure out what to do." He said "Perfect."

And the PA looked at me with admiration and said "She knows more than I do! I could learn a lot from her!!" Awww...

Thanks to cpaptalk. Wouldn't be where I am without you and all the wonderful people that have helped me over the last 4+ years.

[Bama Rambler]

That's a great story. I hope my sleep doc is half as understanding and competent as yours is. I have my first follow up in two weeks and I plan on taking plenty of print outs for him to see.

[49er]

I love it Madalot. That is what true medical care is, a partnership between you and your doctor based on mutual respect and not a patriarchal relationship.

I am so happy you found a great doctor and kudos to him for his attitude.

49er

Those that know me from here know that I traveled a long road towards my therapy and had/still have challenges above and beyond OSA.

I had my 6-month checkup last week (I have to see a Pulmonary Specialist on a regular basis or insurance won't pay for the Trilogy). I had done my overnight pulse ox (my own monitor) and downloaded my treatment reports from Direct View and printed them out for Dr. C.

He came in and brought his new PA, nice young man. As we were talking and going over my settings (they print at the end of the report) and my doctor asked me about the secondary settings, which are the AVAPS-AE. I explained what those settings were and how we had tried them, but I was having issues with the FOTs and due to personal reasons, decided to bag that experiment and go back to basic AVAPS, with a set EPAP of 10, which is where I am now. The new PA kept raising his eyebrows and said many times "Wow, you know more about this than I do!" When I mentioned that I set my husband up by borrowing an S9 Auto and titrating him at home, the PA asked me if I was a Respiratory Therapist!!! I laughed and said, no, I'm not and he said "You should be!!"

My doctor turned to his new PA and said "Of all my patients, this one is the most educated and takes the best care of herself. She's a great patient to have!!" And to that I added "Thank you. But I know my limits and would never make any changes without discussing them with you first. If a problem arises, I'll let you know immediately so we can figure out what to do." He said "Perfect."

And the PA looked at me with admiration and said "She knows more than I do! I could learn a lot from her!!" Awww...

Thanks to cpaptalk. Wouldn't be where I am without you and all the wonderful people that have helped me over the last 4+ years.

[Madalot]

Can you imagine how my doctor would feeling have someone like Pugsy (and many others here) as a patient? Their level of knowledge/experience with this stuff makes me look like an idiot!!!

I really just wanted to share this, especially for those just starting out and/or struggling. If I can get to a point where I am with my doctor, you all can make it. When I first came to this forum, I knew next to nothing other than the difference between cpap & bipap. That was the extent of my knowledge base!

[echo]

Way to go Madalot!

49er said it best. Your doc sounds like a gem. And the PA may have learnt a good life lesson too.

[Julie]

1+ !!

[Madalot]

Your doc sounds like a gem. And the PA may have learnt a good life lesson too.

I hope so. Perhaps having an educated patient during his learning process will teach him things to make him a good PA. The fact that he admitted so easily that he still had a lot to learn gives me hope he'll be good.

By the time I got to this doctor, all I really needed was someone to see me twice a year and do the paperwork for insurance to keep paying for the Trilogy. However, during my first appointment, he was concerned about the oxygen line on the overnight pulse ox (not even enough for his liking) and DID raise my minimum IPAP. While I struggled going from 15 to 18 and it took me a while to get there, now that I'm there and settled, I do sleep better overall. And he is satisfied with the line on the overnight report.

For now and until another change gets forced upon me, I think it's about as good as it can get. I still struggle with daytime fatigue, but I think Robysue is probably right. It may be another factor and have nothing to do with my sleep quality.

Again -- this thread is to share with those that have helped me and those that are just starting out -- take the knowledge and experience of others from this forum and use it to help yourself.

[kteague]

It does feel good when our efforts are recognized and not disregarded. When I came here I remember asking what AHI means. I have nowhere near the knowledge of those of you who deal with more sophisticated machines, but it's good to not be in the dark when I interact with medical professionals. Glad you've found a doctor who appreciates you.

[jencat824]

Madalot,

This is wonderful to hear, glad your Dr. appreciates you, hopefully that PA will strive to learn more about treatment methods. You are right, this forum is THE greatest resource I've found for PAP information & support. I've been on CPAP 14 years, wish I had found this forum sooner.

Great job Madalot!

Jen

[Scootergirl]

Your doc sounds like a gem. And the PA may have learnt a good life lesson too.

I hope so. Perhaps having an educated patient during his learning process will teach him things to make him a good PA. The fact that he admitted so easily that he still had a lot to learn gives me hope he'll be good.

By the time I got to this doctor, all I really needed was someone to see me twice a year and do the paperwork for insurance to keep paying for the Trilogy. However, during my first appointment, he was concerned about the oxygen line on the overnight pulse ox (not even enough for his liking) and DID raise my minimum IPAP. While I struggled going from 15 to 18 and it took me a while to get there, now that I'm there and settled, I do sleep better overall. And he is satisfied with the line on the overnight report.

For now and until another change gets forced upon me, I think it's about as good as it can get. I still struggle with daytime fatigue, but I think Robysue is probably right. It may be another factor and have nothing to do with my sleep quality.

Again -- this thread is to share with those that have helped me and those that are just starting out -- take the knowledge and experience of others from this forum and use it to help yourself.

What a wonderful relationship you have with your doctor - and what respect he has shown you. That is so encouraging to hear. This forum has taught me so much in such a short amount of time - I'm so glad to have found it.

[HoseCrusher]

That's the way it should be.

[zoocrewphoto]

I love it Madalot. That is what true medical care is, a partnership between you and your doctor based on mutual respect and not a patriarchal relationship.

I am so happy you found a great doctor and kudos to him for his attitude.

49er

So true.

When I went to my sleep doctor for my followup, he was really surprised when I pulled out the summary chart and a detailed graph. He was pleased though and asked more as he was happy to see that patients could be more active in their treatment. Shortly after that, I let my mom use my machine for 2 partial nights and found that her current settings were not working well. She made an appointment with my doctor, and I went with her. The doctor came in, shook my hand, and checked out my printouts along with her old sleep study to prescribe a new machine with better settings.

Just recently, I tried a new primary doctor, and I am very happy with her. I took a printed list of my medications since I knew I would need to fill that out on the new patient form. She went through it with me, took notes, and made a few changes (good changes, I might add). I also had a printout of my blood pressure readings at home for the previous week (I had just started up doing those again), and she kept a copy. When I went back a couple days ago, I brought an updated copy of the chart which she looked at and added to the file. She also went over my bloodwork results and gave me a copy for my file. She also sends me home with a paper listing any changes we are making with medications, activity, etc. At my second appointment, we reviewed the previous paper to see how things were going. Breathing better (asthma medication good), blood pressure much better, so that was working, but could be a little bit better. I am really happy with her. She is very happy to get feedback to see how things are working. And willing to make adjustments to get it even better.

I had told her at the first appointment that I wasn't sleeping well, and I believed it was from being off the blood pressure medications (I had quit the old doctor and run out of medication before going to her). So, She worked on those items first and waited to see results before messing with my cpap. I had told her that it works well for me, just that have been taking the mask off and probably over sensitive in my sleep. AT the second appointment, she asked me how my cpap was going. More than double the usage, so improving. My old doctor never once asked how my cpap was going. In fact, I would complain that I was having trouble sleeping due to the chronic cough that was so bad it was almost whooping cough. She never solved the cough, just gave me cough syrup. Then later, I couldn't sleep because my hip hurt every time I moved. She told me to stretch. I was begging for help to sleep, and that is why I decided to quit going to her. The new doctor is so much better. Let's stop treating the symptoms and work on the cause. Yes, that sounds great!

[deerslayer]

Hi Five Madalot
I got that response also. Really a good feeling to be appreciated for our efforts --->Whatever they may be

[Sir NoddinOff]

Wow, if only my sleep doc was like that. One in a million, as they say.

[djhall]

A close friend of mine is very knowledgeable about medical issues and has a fantastic doctor like that. When I went to an appointment with her the doctor presented her opinion, then asked my friend's for her thoughts and reasoning, and responded with, "I'm okay with you trying this, this, and this, but I'm not comfortable going with that quite yet until after we try this." They agreed, took care of the paperwork, set up a follow up appointment, and off we went. It was the best Dr / patient interaction I've ever seen.