Pulmonary hypertension

[jules]

PDA does occur and isn't always treated. Somehow I thought dllfo's condition was more complicated than PDA but then I didn't know.

The treatment for PDA about 50 years ago was a nice incision around the chest to the back (12 inches on a kid - me). I was discovered on a school physical and it was a couple years before the surgery was done. I understand now they put in a plug using the same procedure as cardiac catheterization. Oh, that sounds so much easier and less invasive.

But back to PH, I was told mild based on calculations on echocardiograms. I was told "secondary to OSA" after the sleep study but don't know if something came up during it that added that to the diagnosis. I had what they thought was asthma but unrelieved with inhalers when walking uphill. I got a lot of that under control by dropping the sodium in my diet to around 800 mg a day and upping the potassium as the same time. Weight loss was needed.

There are PH forums online. PH isn't anything to play around with.

[krousseau]

I don't know your situation re insurance & finances; or your personal health history/risk factors. In Salt Lake there are good physicians connected to the universities. What about your sleep physician? Hopefully you went to a lab that monitored UARS. Look at the report of your sleep study. If UARS are in the report and you went to a sleep physician go back to see him/her. If UARS isn't in the report get a new sleep doc and/or sleep lab-look for one by clicking on Area Sleep Labs in the left upper corner of this page. Make sure anyone you see looks at UARS. Check out Dr Barry Krakow's posts on UARS if you have not already done so. It is your number one lead to finding out what the residual problem is. Don't chase "unicorns" like pulmonary hypertension-until you look for the most likely causes. Don't assume you have adequate XPAP treatment on the basis of good numbers that do not include UARS. If you are still fatigued/sleepy there may still be some sleep problem not addressed.

[Pilot_Ron]

Dr. Krakow has a very interesting post (see attached) that may be an answer to your question. It may be worth looking into UARS as a potential possibility to your therapy not working as well as it should.

viewtopic/t26622/UARS--A-Critical-Link- ... sults.html

[Baitman]

Amandalee,

I have pulmonary hypertension, OSA, diabetes, coronary artery disease and am considered morbidly obese. As far as the PH goes, i do get winded pretty easily, usually a few minute sit is all i need to recover. My PH was diagnosed during my sleep study. Before CPAP therapy, I would fall asleep anytime anywhere, at work, at home, in the car, in the middle of a conversation. Since my CPAP therapy has started, i still get winded easily but I am awake all day, I feel crappy when I wake up but that passes in about 30 minutes and I feel ok. I am on strait cpap, pressure 20, with 2 liters of Oxygen. I cant imagine ever going back to life before CPAP.
Hope this is some help.

[amandalee]

Thanks for the replies, this is helpful information.

I hadn't heard of UARS before--it sounds like something I will need to look into further. Dr. Krakow's post said that UARS and flow limitation are used interchangably, and my software does give information about flow limitation. In the most recent data from it, it said I had a flow limitation of 0.9, IIRC.

Maybe I will have to get an appointment with a pulmonologist. My sleep doctor is primarily a pulmonologist, but he is only at the sleep lab on Wednesdays; otherwise his practice is in a city about 30 minutes north of where I live.

I have had pretty good experiences with the doctors at the University of Utah hospital--maybe I should get an appointment with someone there. That's probably something I'd need a referal for though, isn't it?

[socknitster]

Whether you need a referral is up to your insurance. Some still require it as a formality. I have had my doctor tell me that I didn't need to see a specialist and I disagreed and made the appt anyway and the specialist disagreed with him too--so I was lucky that my insurance does not require a referral.

Hope that helps. Sounds like you have a lot to think about. Make a long list of questions to take to the docs.

Jen

[krousseau]

According to the docs at Stanford the Respironics machines under report UARS-don't have a clue about whether that is true for other PAPs too.
Some insurance co's require referrals.
Some specialist require referrals-it is a way for them to sort out patients that don't really have the condition/disease that is their primary interest-that is especially true in university settings where they are trying to educate specialists. They are trying to make a name for themselves in a narrow subspecialty-it is how they get research grants.
You can only try-you do need someone you trust-universities also train primary care doctors, internists; I'd recommend a university primary care clinic-all the specialties are close by and often provide in the hall "consultations" for each other.

[socknitster]

A teaching hospital is a good choice as Krouseau mentions. Ostensibly, they want to TEACH doctors to be thorough there and their facilities should be excellent. If you have to start over with a new doctor choose an internist with interests in an area that is beneficial to you, rather than a family practice physician. My internist specializes in gut stuff, for example. Hope that helps.

Jen

[krousseau]

Forgot my biggest caution/forewarning.
University hospitals attract big names who in turn attract people who may be desperate for some good medical care and advice--the person you have initial contact with may be an intern, resident or fellow, or even a nurse practitioner. The Big Name is the Attending and the one teaching them. The chief resident or Big Name provide direct supervision in each department so they are generally nearby. Depending on the experience of the person who sees you initially you may or may not see the chief resident or attending-but they are available for consultations and do review each person they see with their supervising physician.
This is fine with me until it is time for surgery. I don't want a resident performing brain surgery on me even if the Big Name is at his/her elbow--so when I did have to have brain surgery that was only being provided in university settings-I looked for a university attending who also had a private practice.
A couple other tips-a like a physician who does his/her own history and physical. The H&P seems to be going by the wayside--it should give direction to the tests the doctor orders rather than a fishing approach to lab tests.