I have been treated for COPD for about 8 years. Over the past few years my diagnoses are changing and went from chronic bronchitis to COPD, to chronic respiratory failure and lastly PAH and CHF. I haven't been able to find much information on PAH and have no idea how it is treated or how it progresses; however, I am discouraged as my pulmonary doctor simply told me my diagnosis after my CTScan of the chest and the echocardiogram and then said "see you in six months." Now I am completely confused as the materials I have read say this is a serious disorder that needs immediate attention and treatment. If anyone is able to guide me to a forum about PAH, what it is and treatments and prognosis, I would greatly appreciate it!
Pulmonary Arterial Hypertension Diagn... - British Lung Foun...
British Lung Foundation
An accurate diagnosis of PAH can’t be made unless you have a right Heart catheter. An echo can indicate concerns but you will need a RHC to be sure. There is no cure but there is medication to help. I was diagnosed 2 years ago with high pressure after being on medication my pressures are now that of a ‘normal ‘ person. You really need to be seen by a dedicated PH centre to get more help.
The interpretation made stated the pressure was 42 which was abnormal and the thickening of the heart wall coupled with slowed ventricular regurgitation indicated PAH. There is also Atherosclerosis that appeared in the veins and capillaries of the lungs which further supported that finding. I am really nervous about receiving a heart cath.
RHC can be daunting but honestly they are ok and will give you more accurate assessment of your condition.
I was told after an echo I had PAH and it was moderate, I was 42 at the time and was absolutely devastated. I waited 3 months to have a RHC done and thankfully was then told I didn't have it! The worst thing about the procedure for me was that I was frozen, I have Raynaunds and operating theatre's are very cold places!!
phauk.org/ Great site and they do a great newsletter every now and then.
I have been shown to by on the high end now but with my Iodine allergy it has messed it up a bit. One of the worse things when you look on the www that some of the info is old news! It i now been recognized by more doctors. My lung Specialist team did admit that I may know more about it than them? I will be seeing them soon to see if I will be going to a specialist center. Some of the medicine they now use are used for other conditions and I take one of them already.
Hello and welcome. You must be very troubled since you can't seem to get any information.
If you go to the BLF website and follow the links you'll find very good information about PH. There are two sorts, and I think you probably have PH and not PAH. (So do I). I'm not a doctor and I can't give you a diagnosis, but would urge you to back to speak to your doctor.
There is a Pulmonary Hypertension website - you'll easily find it on Google. And if you click on the Related Posts in the column on the right you'll find lots of previous posts very similar to your own.
I hope you get some answers, and do keep asking your questions. Let us know how it goes, Sue x
Apparently my pulmonologist knows nothing about it as she said "see you in 6 months." I said "wait...do I need to see a cardiologist?" Her answer was "Yes, you may want to do that." I was left standing with my mouth open.
You live in the United States? - I've no idea how things are done there. You'd have to see a cardiologist to have a RHC, and by the way they are not a problem with a little sedation to help. When I had mine it was not because of my PH.
You do need some more tests to give you more information about what's going on with you and if you have PH or PAH. In other words to find out if further treatment would help. Sue x
I am off to the cardiologist today and hope i get some answers. Thanks for your help.
Well, saw the cardiologist today and I am so glad I did. She is determined to get to the bottom of all the issues. The diagnosis of PAH was confirmed. I also have severe emphysema. I have been passing out for some time now and she wants to schedule a right side and left side heart cath and referred me to another pulmonologist. She also set me up with a vascular specialist to help with the Raynauds. She has another name for it, Burgess disease I think. I also am to wear a heart monitor to wear for a month. Anyway, I am so happy to have found someone who will finally listen to me! The PAH is very mild right now at 40 pressure but she said it definitely needs to be monitored.
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