Pulmonary Hypertension?

[briansmom]

This is probably a stupid question, but is pulmonary hypertension the same as having high pulmonary pressure? I know Brian's pulmonary pressure has been high since he was in the hospital and he is complaining of more shortness of breath since he got out.

Nancy, can you give me some insight?

 

[njean]

Hi Deanne,
I struggle with HP too. Mine was measured between 82 & 88 on an Echo done back in Dec/08 but on the most recent Echo in May/09, the pressure was at 60 which is much, much better.

I was put on "Revatio" but I'm only able to tolerate 20mg per day instead of the 60mg that the dr wanted me to take.

What was Brian's pressure at??

 

[njean]

I can tell you this, I have been feeling much, much better since I started the revatio --- My energy levels have gone considerably higher, I've lost weight.

You may want to mention this drug to your cardio & see if Brian may be a candidate for it.

 

[briansmom]

I'm not sure what Brian's pressure was. I know it was high enough that the nurse practitioner didn't want to tell me and I was stressed enough at the time that I didn't push it. I am going to email her tomorrow and ask.

 

[Nancy]

Here is a good explanation of PH in layman's terms.

http://www.chfpatients.com/ph.htm

In particular, look at the bottom of the page where it has acronyms and abbreviations.

And look at PH and MPAP. Those are the measurements for PH pressures. The MPAP or Mean Pulmonary Artery Pressure is actually a formula that is used to determine PH.

And also, if you want to take a look at the PHA website forum, here is the link.

http://www.phassociation.org/Message_Boards/main.asp?board=1

The site itself has good information.

http://www.phassociation.org/

Joe's MPAP was severe at 75

He took Tracleer (Bosentan) and Isosorbide which reduced it over time to the mild to moderate range, but he did have to stop taking it due to liver problems which Tracleer can cause.

Revatio (Sildenafil citrate), that Norma is on, seems to work well for many w/o the liver toxicity.

There are other drugs used and the PH specialist is the one to determine which one or combination is the right one.

It is a sad fact that most doctors know little about PH, and they don't treat it, because they don't know what to do for it.

Seeing a PH specialist is highly recommended!

They are the only ones who deal with it on a regular basis.

You should find out what all of Brian's pressure are.

 

[Mary]

Deanne,
I hope you don't mind my asking a question on your thread, but here goes.
I underwent a pretty fair barrage of tests six weeks ago, because I've felt so lousy. The echo showed PH of 55, along with enlargement of both atriums. Nothing said by the cardio about starting medication, so I assumed he wasn't concerned.
Can I lower the pressure by losing weight and getting more exercise? I guess I'd have to undergo a cath to get a more accurate reading, but I can tell from the way I feel, something is going on.
When you find out Brian's numbers, will you share?

 

[Nancy]

You cannot lower PH with exercise or losing weight, although being way overweight is not a good thing with this disease.

It is a vascular problem involving the lining of the pulmonary vascular system.

As I said before, most doctors don't know enough about PH to treat it, thus they choose to ignore it. A right cath will give the most improtant numbers. Echoes are not accurate enough.

If you can get your doctor to do a right cath, and you get a copy of the report, and it still is showing high numbers, then you really should seek out someone who is well versed in PH.

Here is a list of symptoms:

shortness of breath (dyspnea)
fatigue
leg edema
general weakness (asthenia)
palpitations
feeling of fullness in abdomen (from enlarged liver)
chest pain (angina)
coughing
lightheadedness, dizziness
fainting (syncope) or near-fainting (presyncope)
bluish fingertips or lips
nausea
loss of appetite
hoarse voice

add ascites to that list.

 

[Mary]

You cannot lower PH with exercise or losing weight, although being way overweight is not a good thing with this disease.

It is a vascular problem involving the lining of the pulmonary vascular system.

As I said before, most doctors don't know enough about PH to treat it, thus they choose to ignore it. A right cath will give the most improtant numbers. Echoes are not accurate enough.

If you can get your doctor to do a right cath, and you get a copy of the report, and it still is showing high numbers, then you really should seek out someone who is well versed in PH.

Here is a list of symptoms:

shortness of breath (dyspnea)
fatigue
leg edema
general weakness (asthenia)
palpitations
feeling of fullness in abdomen (from enlarged liver)
chest pain (angina)
coughing
lightheadedness, dizziness
fainting (syncope) or near-fainting (presyncope)
bluish fingertips or lips
nausea
loss of appetite
hoarse voice

add ascites to that list.

I have had five of the first five listed. I was also low on my potassium, so I attributed some of the fatigue and SOB to that. I do feel somewhat better, but my energy and ability to breath leaves much to be desired.
I guess I'll call the cardio.

 

[njean]

As Nancy mentioned in her previous posts, the ONLY accurate way to know for sure your true Pulmonary Pressure is by having a right heart cath.

I have a severly enlarged left atrium due to the mitral valve not functioning at it's full capacity which therefore increases the workload on my poor heart.

In Jun/08 an Echo performed measured my PH at 82mm. This is alarmingly high but I've seen other patients in the 100's so..... So, that being said, the dr then decided to do the right heart cath & it measured my PH at 55mm. Still a bit high but nowhere near what it was in the Echo. Then again, in Dec/08, the Echo revealved my PH in the 80's again & that's when my dr consulted with a PH specialist & the specialist recommended the revatio for me.

Getting used to the revatio was NOT easy & I have to be on a considerably low dosage but it is helping & more importantly, I feel that it is helping. I don't feel SOB, fatigued or full in my tummy like I've eaten an elephant. I was also having a lot of trouble losing the weight before due to more water retention --- all that has minimized considerably.

Mary & Deanne ---- ask your cardios to refer you to a PH specialist or suggest PH medications such as revatio which is a lot kinder to your liver.

Good luck to all of you!

 

[briansmom]

Ok, from my reading it seems that there is primary and secondary PH. Obviously, Brian would have secondary PH. Does that change anything? Is a PH specialist a cardiologist? I don't have his numbers yet but I will post them as soon as I get them. Also, please note that Brian was on IV fluids to get his kidney function back to normal when they did the echo and found his high PH. They gave him Lasix and he peed out 3 liters!! BTW, his blood work this week showed normal kidney function, but showed his hemoglobin to only be about 11.5. I'm sure many of you know what it's like to balance heart issues with other problems.

 

[Nancy]

It really doesn't mean much, primary or secondary. Secondary implies that once the underlying problem is addressed the PH will go away. Many people here seem to develop this after they have their surgery. So I wouldn't know how the doctors would categorize that.

They thought that Joe had secondary, but when the specialist worked him up, he felt it was primary.

The high pressure has to be treated because it causes severe problems if it isn 't.

A PH specialist is a doctor who specializes in PH, it could be a cardiologist or a pulmonologist, but they should have treated many, many people with PH, not just one or two in their medical career.

The PHA website has lists of specialists.

The folks on the PHA website forum are really good about answering PH technical questions. Might also be a good resource for you.