Difference Between PH and PAH

[jen-cueva]

Hi @wheeldog, excellent question. Although I’ve heard these two used interchangeably within my 17 years of diagnosis, including from medical providers. But literature continues to separate the two.

Here is some information that may be helpful.

I would love to hear what others have heard from their medical teams through the years. Plus, what your new PH doc at UCSD says. How did you like her, BTW? She is newer, correct? I know they have added several who are new to me.

I’ll be having some of these same tests next month, uncertain of what date yet. I’ve had both before, have you?

I’m sure that others will share their feedback, too.

[Roger Bliss]

I liked her. Very knowledgeable. Don’t know how long she has been there……didn’t ask. I “think” I have had an Echo cardiogram, but not sure. Never had VQ scan.

[jen-cueva]

Great to hear that you liked her. I’m sure that all who work there in the PH clinic are excellent. Most of us have had multiple, Echos. That is where they have you lie on the table as they do an ultrasound of your heart. This usually takes about 30 minutes or less.

The VQ scan is a scan of your lungs. I’ll see if we have anything about these tests already. If not, I will create a new topic and tag you.

Thanks, @colleensteele; that article was also informative on this topic. Although, as I mentioned, many healthcare providers use PH as a broader term, it seems. Have you noticed this, too?

[Colleen]

@wheeldog good question! My son had idiopathic PAH. Super rare for an 8 year old boy to be diagnosed with it and not attributed to anything. We even did genetic testing. Since PAH is a type of PH I usually just say he had PH but sometimes I get specific.

@jenc article is informative. Here is another one that might help.

Click on Link: PAH vs PH: What’s the Difference

[Clyde]

PAH is not just for women 30 – 60. I’m a 66 year old male with PAH. I believe I have had every test known to man in the last year and a half.

[jen-cueva]

Hi @clydedodge, nice to see you pop in. How are you doing?

Yes, you are correct; in my experience, women aren’t the only ones who get PAH. In many areas, this seems to be a “grey” area.

[Debbie Moore]

I’ve been doing new doctors recently as well.  My cardiologist informed me that I have PH with some PAH.  Speaking of tests what do you have to have annually?  I have to have another heart cath (only right side this time) but through my neck – not looking forward to it.  I also have to get another echo not sure if it’s with bubbles or not.  Echos aren’t bad at all.  The doctor says she’s looking to see if there are any changes.  I think they will be changing my medication.

I guess no matter what the diagnosis, a lot of tests are required.

[jen-cueva]

Hi @debbie, I’m sorry to hear that you’ve had so many doctor appointments lately. You are right; PH or PAH both have all of the usual tests or similar.

If I can’t locate one already, I will create a new topic about usual tests, etc., unless I find one. Either way, I will tag you.

RHC through the neck or groin is how I’ve had all of mine. Some PH centers now use the wrist from what I’ve read and heard from other PHriends.

Have your symptoms or pressures been increased lately? Is that why you think they may switch your treatments? When are your RHC and Echo scheduled?

[Alicia Burleson]

My six year old grandson has PAH and was diagnose when he was two years old. He had TGA at birth. His arteries were switched when he was five days old. Through doing our own research,  we have found many develop PAH after heart surgery. Has anyone else in this group with PAH heard or experienced this as well?

[jen-cueva]

Hi @aburle, I’m sorry that your grandson was diagnosed so young. That must have been difficult and frightening. How old is he now?

Because TGA is a congenital heart defect, this may be under that group of pulmonary hypertension. Did the PH team not mention that? Or is that the cause on his chart? I have heard that different surgeries can lead to things such as PH. But more common is PH from congenital heart defects.

How are you and your family managing?

[Alicia Burleson]

My grandson is six years old now and such a sweet boy.  The right side of his heart has always been an issue since birth where it is not rounded like the left side. It was not until he was two years old and passing out that the doctors confirmed he had PAH.
But, from doing our own research, some children who had the switch or heart surgery have a chance of getting PH or PAH.

Understandably, it has been a rough road managing his condition. He has recently been taken off the pump and onto inhaling one of his medications. He does not have to wear the back pack anymore and feels like a normal child. But, all the medications he is taking have not been approved for children which is a worry.

[Colleen]

@aburle that is a big part of awareness that pediatric PH brings to the table – the treatments haven’t been approved for children.

Congratulations to your grandson for losing the backpack! I know all too well what a big deal that is. My son was on Flolan throughout his entire 6 years with PH and a milrinone pump was added a year before his transplant.

I’ll keep your grandson in my prayers that the inhaled treatment works well for him with only minor side-effects.

[jen-cueva]

Hi @aburle, I can only imagine how challenging this has been for you and your family as your young grandson seals with PH. But, I’m happy to hear about getting rid of his backpack and pump for an inhaled medication.

Unfortunately, our young children with PH don’t have approved options like the adults with PH. But keeping you and your family in my thoughts as he transitions to inhaled treatment and all goes well.

Thanks for sharing such personal details about your family with us. Do you live near your grandson so you can visit him often?