Pulmonary hypertension

[Barbara Stewart]

Some of you may remember that I was diagnosed with secondary pulmonary hypertension last November. The mitral valve that was replaced last May had come loose and I had severe regurgitation which led to a second surgery in January, 06.

I also have lupus so I have my blood monitored regularly and I have had low sodium in the last few tests. I have been taking Maxide since forever, but my PCP suggested I stop taking the diuretic. I have and I'm feeling the results. My question is: should I be seeing a pulmonologist in addition to my cardiologist? The echo I just had shows that the PH is better, but not gone. This is one problem that I don't feel I have a handle on. I don't really understand how severe mine is. This morning my walk was very hard. There is a pollution alert and it is very hot. Was it the PH that caused me to have such a hard time? The last two mornings it has hurt to breathe deeply. Is that PH? I also had pleural effusion after my first surgery, last May and had to have it drained 3 times.

Sorry if this isn't very well written. I hope it is understandable. I used to teach writing and I worry about such things.

Barbara

 

[Nancy]

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

Above is the website for the Pulmonary Hypertension Assoc. forum. Ask your questions there too.

You really should find a doctor who understands about PH. There are specialists and that is what you should be looking for. Many areas don't have specialists. If you don't want to travel, you should find out with some very blunt questions just how much your doctor knows about PH and how many people he/she has treated for it. If you don't feel he/she has a good handle on it, then you should seek out someone who does. Joe almost died because his former cardiologist ignored his increasing PH until it got to the severe level, and he was slipping into a coma. I don't recommend that at all!!!

Yes, all of your symptoms could be from PH, but if you have other lung problems they could be contributing. And high ozone and other pollution things can make people with PH and other lung problems have a difficult time breathing.

People with PH have a more difficult time with fluid retention. That is why so many of them are on high doses of diuretics. When their conditions advance, they develop severe congestive heart failure.

Be proactive with this problem. Don't be whimpy. Ask your questions on the PHA website too and get the answers you need to query your doctor about how much he/she knows. Then make your decisions.

A local "specialist" has only treated 5-6 people with PH. So what does that tell you? It tells me that not all "specialists" are created equal. Joe's former specialist, who was absolutely brilliant, has gone into straight research. We were very sorry to lose him.

I make sure that every doctor that treats Joe knows that I will be checking into his PH and will be asking a LOT of questions.

By the way, it doesn't make much difference whether you have primary or secondary PH, they both have to be treated once they progress to a certain point, and the treatments for both are similar.

 

[RCB]

Same boat

Same boat

I was in the same condition as you before my mitral valve replacement.
It seemed to have cleared up nicely after surgery, even though I still have enlargement of the atria. I would see a doctor if you are still having problems.

In my opinion, there is no finer advice than you have gotten from the
Irish lass above! Good Luck.

 

[jax3172]

Ph

Ph

I have been diagnosed with mild PH (artery pressure at 38). I am pushing the exercise and don't feel the effects all that much right now. There are doctors who specialize in PH. I have an appointment with one on June 20th. I suggest you find a doctor who specializes in PH and get an appointment asap. By the way, the gold standard for figuring out the cause is a right heart cath. The treatment depends on the cause, but find that specialist!!!

Jack

 

[Barbara Stewart]

Thanks

Thanks

Thanks everyone. The PH aspect of this whole unpleasant ordeal is the one thing I'm not real clear on. Sometimes I think I'm completely free it and then I have some new symptom, like a dry cough, or the weather gets to me. I never had any of these before.

So....acting on the advice you all gave me I'm seeing a pulmonologist on June 27th. I will feel much better once I have a conversation with him.

Thanks again, and have a great weekend.

Barbara

 

[Nancy]

BTW--

Trying to exercise through PH symptoms is NOT a good idea. You have to get it diagnosed first re: its severity. Some forms of exercise can cause harm, i.e. weight lifting or any valsalva movements. And also doing aerobic exercise which causes extreme breathing symptoms should be avoided until you know what you are dealing with. Get exercise advice from a doctor who knows about PH.

This is a VERY quirky disease and does not react like other things.

And not every pulmonologist knows a great deal about it. Remeber that it is a RARE disease and you would be hard put to find any doctors other than specialists who treat a lot of patients with the problem. They might not even know what is now available to treat people. There are several newer treatents which have made this disease a chronic disease instead of a fatal disease that it once was.

Do everything you can do to educate yourself about PH. Do not rely only on your doctor. Know the right questions to ask, and that only comes with appropriate knowledge. That way you will know when what they are telling you is not the right thing.

 

[Christina L]

I have read that "PH

I have read that "PH

is PH" (secondary versus primary PH) per a quote on a web site I happened upon, but I also know there is supposed to be a big difference between primary and secondary PH - primary is usually found in mostly young women and is very, very rare and lethal over time. Secondary PH is caused from hypothyroidism, sleep apnea, and valve and heart disease and lung diseases such as COPD, etc.

From what I have read (and I am holding onto) secondary PH is highly treatable if the underlying cause is found and that is treated also, along with the PH.

I do agree that a person should see a specialist regarding their PH.

My cardiologist also told me of this - that primary PH is extremely rare and secondary PH is very common among his heart patients - at least 40% of them get PH at some point. I am not sure if this is before or after valve/heart surgery or both.

Christina L

 

[Nancy]

Barbara-

Here are a couple of articles which might get you started in your study of PH.

http://www.emedicine.com/med/topic1962.htm

http://www.emedicine.com/MED/topic2946.htm