numbers vs symptoms

[pharmwoman]

My hubby, who is an RT, cannot get over the fact that people download info from their c-paps--he firmly beleives its a disease treated by symptoms, nit by #'s. I cant argue with him, I have not had the benefit of the downloading but have been able to get to a good place thru trial and error, etc. he feels the data is a reason for the dr to bill more for a visit. Im not so sure I agree with that!!!

[Goofproof]

My hubby, who is an RT, cannot get over the fact that people download info from their c-paps--he firmly beleives its a disease treated by symptoms, nit by #'s. I cant argue with him, I have not had the benefit of the downloading but have been able to get to a good place thru trial and error, etc. he feels the data is a reason for the dr to bill more for a visit. Im not so sure I agree with that!!!

I don't believe that. My Dr and DME neither one can read the data. I'm sure if they thought they could squeeze another dollar out of their rackets, they would have asked me to show them how, they show no interest in knowing how the patient is doing. That is why we chase the numbers ourselves. Jim

[Handgunner45]

To a large extent, it can be treated by symptoms, but the numbers tell the real story. When I first started treatment I was one of the lucky ones that felt better right off the bat. When I got my software and was able to look at the numbers, I discovered that I still had an AHI of over 15. I started to slowly increase my pressure and not average <2. Obviously my initial treatment was doing me some good, but if I had not looked at my numbers, my health would still be at risk due to the OSA.

[WillCunningham]

I have been going by the symptoms for a long time now and am anxiously awaiting delivery of a machine that will let me track the numbers. I try to be very aware of my sleep and how I feel, mostly because I am paranoid about backsliding and ending up like I was pre-cpap. I have discovered my ability to notice the gradual degredation of my therapy is seriously flawwed.

I would get a new mask and suddenly feel great. I would slowly feel more negative symptoms but not even realize it. Then my mask would break or I would tighten the headgear for some other reason and suddenly I would feel great again. I never noticed it getting worse, only the huge leaps in how good I felt when I managed to correct a problem I didn't even know I had.

I am really hoping that the numbers will help me detect those problems before the effects pile up enough for me to notice them. I will have to see how that works out. That is the main reason I am so interested in the numbers.

[birdiebaby]

I think largely numbers are simply a quantification of symptoms. My numbers tell me when my stuffy nose is causing my pressure to go up... my numbers tell me that my yawning today is because my pressures and AHI were higher than normal.

The most important use of the number is that it tells aids us in knowing that the change we made to alleviate the symptom had a dramatic effect... either positively or negatively.

Some people like to know that they have a fever, and for others, it's important to know that it went from 99.5 to 101 overnight. Here's a question for your hubby to ponder. I'm an asthmatic. Some days I feel fine. I went through much of my life feeling 'fine', until my doctor listened to my lungs and told me that I wasn't 'fine'. She put a peak flow meter in my hands and told me to track my numbers every morning. When I went above a certain number, I have to take certain meds. And if I'm below a certain number, I know that I'm truly 'fine'. From my perspective, the numbers are far more valuable to me in participating in my own care. I see no difference with my APAP numbers. Why is that so wrong??

Shelley

[Linda3032]

pharmwoman,

I agree with you that I think your hubby is wrong.

If I didn't feel quite right, but not bad enough to go see the Pulmonologist, or if I had to wait 2 or 3 weeks for an appointment, what should I do?

Without numbers, I can disregard how I feel and live (or die) with it. Or, I can wait the 2 or 3 weeks and go to the doctor for him to try to "guess" at what might make me feel better.

With numbers, I can try a few things. If I can find a solution, so much the better. If I can't find a solution, then I can make a doctors appointment and drive 150 miles round trip for him to take an educated "guess".

Also, if we don't care about our conditions, how can we expect anyone else to?

If every cpap patient had software, there wouldn't be so many drop-outs.

[Darth Vader Look]

I think the general consensus on this site will be to work with the numbers. Symptoms are the things that drive us to find out what we have but the numbers provide a much more accurate baseline in determining the level of therapy needed. Maybe your husband should read up on people like Jerry69's data reports and how well he has done following the numbers. Even Bill (NightHawkeye) has some very interesting posts with his data.

[Snoredog]

it doesn't matter if the data is accurate or not, if there are fewer events the numbers will show a decrease.

[Offerocker]

...Also, if we don't care about our conditions, how can we expect anyone else to?

RIGHT ON !!
Imho, I also think that the better docs appreciates one's hands-on approach, which also provides valuable information to them.

[Goofproof]

...Also, if we don't care about our conditions, how can we expect anyone else to?

RIGHT ON !!
Imho, I also think that the better docs appreciates one's hands-on approach, which also provides valuable information to them.

It makes the Dr's job easier, and they even get a chance to learn a little, about what happens in the treatment of Apnea, and the cause and effect of close monitoring. Maybe when they realoze we the patient care, they will too. Jim

[Offerocker]

...Also, if we don't care about our conditions, how can we expect anyone else to?

RIGHT ON !!
Imho, I also think that the better docs appreciates one's hands-on approach, which also provides valuable information to them.

It makes the Dr's job easier, and they even get a chance to learn a little, about what happens in the treatment of Apnea, and the cause and effect of close monitoring. Maybe when they realoze we the patient care, they will too. Jim

Let's see how far we can imbed these quotes...

I agree, and my family doctor agrees!

How else can they learn the details of so many maladies that their patients have, and this in turn helps them help the next guy! My doctor told me that she's learned to ask someone about their sleep when they report tiredness, lethargy, etc. Just one of the things they need to add to their list of questions. She also advised me to:
1) ask every other doctor: "What is your plan for my treatment?"
2) keep a notebook, and let the docs see that I'm taking notes

This is not meant to intimidate the physicians, but to let them know that I am taking an active part in my treatments, and ensuring that everyone involved "Talks to each other". Besides, I need to keep track of what the heck is going on also!

[Goofproof]

I always take a clipboard with me to the Dr's Office, It so happens it's from a Brand of Drug company, Once a Dr. Questioned me about taking his clipboard, but his was on his desk. If all you info is on the clipboard you can answer his questions, and when he says something tyou can write it down to digest later, less chance of remembering it wrong. Jim

[Offerocker]

Jim,

I find it also helps me to remember that "List of Questions" I had for the doctor! Or to jot down new ones during the conversation.
You're so right about its being more reliable than (my) memory! It's also a good "History Book" for later reference. I've been surprised at the info I needed to look up, and found in the notebook.

Funny story about your clipboard!

[OwlCreekObserver]

My hubby, who is an RT, cannot get over the fact that people download info from their c-paps--he firmly beleives its a disease treated by symptoms, nit by #'s. I cant argue with him, I have not had the benefit of the downloading but have been able to get to a good place thru trial and error, etc. he feels the data is a reason for the dr to bill more for a visit. Im not so sure I agree with that!!!

Based on my recent experience, I certainly agree with you. If I had not taken the initiative to track my CPAP numbers a few days ago, I would have assumed that everything was fine and that -- even though I didn't feel any better -- the treatment was working. As it turned out, that wasn't true at all and my OSA would likely have continued on untreated for months or even years.

Like some others who have posted here, I try to be very proactive in my dealings with medical professionals. Because I have a history of borderline high blood pressure, I record my weight, BP, and resting pulse every morning. When I go to see my primary care guy, I print out a summary of the previous 30 days because I don't want him making decisions on medications based on one in-office check. I also take along a list of whatever vitamins and supplements that I'm taking at the time. I'm not obsessive, just...thorough .

[snoozie_suzy]

Because I have a history of borderline high blood pressure, I record my weight, BP, and resting pulse every morning. When I go to see my primary care guy, I print out a summary of the previous 30 days because I don't want him making decisions on medications based on one in-office check.

OCO~
I am pre-hypertensive and am on atenelol for my arrythmia, and I am currently on a medicine that slightly elevates my BP, so I also check my BP daily. Many people have false indicators of what their true BP is in the doctors office due to the "white coat" syndrome (a.k.a. being nervous in the medical setting) I think taking it at home is a more true reflection of a person's pressure.

Congrats on lowering your numbers and feeling better!

Suzy