Pulmonary hypertension?

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realkarl

realkarl

Radiation survivor
Supporting Member
Joined
Jun 3, 2009
Messages
187
Location
Seattle, WA, US
Before my surgery I had mildly elevated pulmonary (artery) hypertension (PH or PAH) at 30-35 mmHg, but it has made a jump after, and my last echo showed another increase. In Sept it was 42-47 mmHg, and now in Nov 47-52 mmHg. My cardiologist never mentioned this to me, I just noticed from the echo printouts I requested. My right ventricle is normal, but there is a 1+ pulmonary valve insufficiency and a 1-2 tricuspid insufficiency. These inefficiencies existed before my surgery, except a small worsening for the tricuspid valve.

I sent him a question, but it will probably take a while to get an answer. Is there anyone else here with a pulmonary hypertension problem, before or after your valve surgery? I read a couple of articles on PH, and I am somewhat worried now. I have no symptoms though.

Wrt to the left side of the heart: after my surgery, my left ventricle has shrunk to almost normal, but with a lower than normal EF. I also have a Left Bundle Branch Block (LBBB), which was diagnosed along with the severe aortic and mitral leaks 1 1/2 years ago. This causes a dyssynchronous contractile pattern, which means that the left ventricle contracts too late relative to the right side. The current plan of record is to have a biventricular pacemaker implanted in January. This will sync up the two ventricles to my natural sinus node beats, and hopefully increase my EF which is stuck at 43%. I have no idea if this could be related. The articles on PH mention this as a lung problem. Maybe it's also a radiation aftereffect, damage to the lungs, and the dramatically changed working conditions of the heart after surgery made the condition somewhat worse.

Karl.
 
Karl, there are several (including me) on this board who have Pulmonary Hypertension to some degree. I think your situation is unique enough that your answers need to come from someone who is expert about PH.

Your pressures have risen pretty fast and to a degree that definitely cannot be ignored. Insist on having the issue addressed and ask about a referral to a PH specialist.

My pressures at their highest were about what yours are now. They have come down slowly to the low 40's. Keeping my blood pressure LOW and adding an ACE inhibitor and Beta Blocker has been beneficial to me. Please let us know what you find out. I'm very interested since I too had radiation therapy to my chest long ago about 1962 or 1963.
 
Thanks, Betty. I figured I would have to ask for a referral to a PH specialist. I am already on a max dose of Beta-blocker, but 1/2 dose of ACE ihibitor, relative to pre-surgery. My BP is nice and low, but I noticed the pulse pressure (difference between systolic and diastolic) is higher than before.
 
Karl,

Nancy is our resident PH expert. You may want to do a Search for "Pulmonary Hypertension" with Nancy as the poster and "Any Date" selected (lower left box) to find some of her posts on the subject. (The search feature does not work for only 2 characters so you won't be able to find posts that only contain PH as a reference).

The Right Heart Cath is the "Gold Standard" for PH.
Echo's are not very accurate or reliable other than to indicate there 'may be a problem'.

And YES, Nancy would recommend that you find a PH specialist as most Doc's, including Cardio's, don't see PH very often and typically don't have a lot of experience managing PH patients.

'AL Capshaw'
 
I am presently seeing a PH specialist for my high pulmonary pressures. My pressures at their highest have been between 82-88mm.

In May of this year, I started taking an Rx called 'revatio'. It is just another name for viagra but when taken by patients who have high pulmonary pressures, it helps relax & open blood vessels thus alleviating pressures in the lungs.

I had an echo just last month & the PH had dropped to 46mm which for me is phenominal as my cardiologist put it!

I may also add that my cardio was the one that recommended this drug to me on the recommendation of the PH spec that I'm seeing now. And, I was started at 60mg a day but I couldn't tolerate that dose at all. It was reduced to 40mg & I still couldn't tolerate it. So, I'm down to taking 20mg now & slowly trying to increase the dose to 30mg.

I agree with the others, that you should be referred to a good PH specialist to address these pressures as soon as possible. If left untreated, it can be deadly.

Best of luck to you.
 
Joe had severe PH. His old cardiologist never told him, and it was finally revealed to us when he was admitted to the ER for about the umpteenth time As luck would have it a young cardioligist was on duty who had just had a rotation with a PH specialist. He told us about PH, how severe it was and just about blew us both away with the severity of Joe's situation. I emailed a PH specialist fairly close to us, and Joe was seen within the week and admitted to the Cardiac ICU at a different hospital for a whole month to get it under control. He was put on Tracleer and some other meds, and all of his medications were reviewed and changed around.

It took several months, but his PH went from severe to mild to moderate.

It really requires the assistance of a specialist--why? For the reasons you mentioned about your cardiologist ignoring it and for Joe's cardiologist ignoring it. They just don't see enough cases to feel they have to keep up with what is going on with this problem, so they just ignore it. Bad idea!!! The same thing goes for pulmonary specialists who do not specialize in PH. They are clueless too. There are many drugs that can help the milder cases, and also now, the more severe cases. It used to be fatal. But that is no longer the case. But it can be progressive. So you have to seek out help for it. It affects other organs (liver, spleen), can cause esophageal varices, jugular venous distention and can cause big time problems with fluid retention, especially ascites, not to mention what it does to your heart and lungs.

Here are a couple of sites to help you understand. The last one is a forum similar to this one for PH people, and it is very helpful. The PHA Association has a list by state of specialists.

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

http://www.phassociation.org/

http://www.phassociation.org/Medical/Advances_in_PH/Winter_2005/manage.asp

http://www.phassociation.org/Message_Boards/main.asp?board=1
 
Nancy: Thanks for the information and links. It's somewhat scary reading, but reassuring to know there are treatment options. Primary PH is so rare, and since this is happening after my surgery, if I do have a serious PH problem, it's probably secondary and caused by something else, but who knows what.. At least it's caught early, and before it has affected my right ventricle and before any symptoms. Hopefully, the echo measurements are at least somewhat inaccurate, but I will definitely follow up with my cardiologist and ask for a referral. He hasn't answered my initial question yet.

Karl.
 
primary or secondary, it makes no difference. It's the pressures that do all the damage. If it is secondary to something else, then that thing has to be corrected. If is it primary, it also has to be corrected. Consult with a specialist and get a proper workup and proper diagnosis. Right heart cath is the true measurement of PH, that along with the 6 minute walking test.

Please don't take no or ignorance for an answer from your current doctor.
 
* I do not have PH, I do not have PH, I do not have PH*

Arterial blood gas
blood is drawn from an artery instead of from a vein to check the amount of oxygen in your blood. Arteries are much deeper under the skin so this one can hurt
Click to expand...

Thank you sir please do it again. I like it! Poke me, Poke me.
 
Still waiting for my cardiologist to email me back. My HMO's email system is convenient and secure, but my cardio is sometimes slow to respond.

I also asked my PCP, mostly to find out if my HMO has a specialist. She was out today, but her "partner-in-crime" replied that my cardiologist would be the best to answer my questions and the following: "One note - most of the online forums are likely talking about idiopathic (which means unknown cause) pulmonary hypertension, rather than pulmonary hypertension associated with cardiac issues. The pulmonary hypertension specialists largely treat the idiopathic variety."

Karl.
 
Joe's specialist treated him even though his PH was likely caused by his underlying cardiac issues Jean's has as well. The pressures have to be reduced, period. They are very damaging. If you have cardiac issues that are causing PH and they can be treated to eliminate the PH, then that has to be done. The continual pounding of high pressures within your heart and lung vascular system is bad and should not be allowed to go on-.
 
Indeed, I agree, I will not let them wave this away. X-rays have for years shown scarring in my lungs, and something called "hyperinflation", which I have Google'd and still don't know what really means. My lungs are likely to have some form of pulmonary fibrosis from the same radiation treatment that caused the valve damage fixed by my recent surgery.
Karl.
 
realkarl said:
Indeed, I agree, I will not let them wave this away. X-rays have for years shown scarring in my lungs, and something called "hyperinflation", which I have Google'd and still don't know what really means. My lungs are likely to have some form of pulmonary fibrosis from the same radiation treatment that caused the valve damage fixed by my recent surgery.
Karl.
Click to expand...

I too have the "scarring" in my lungs...mostly the right. Scarring IS fibrotic tissue. We can't change what caused it and can't write off the need to have the resulting condition treated. As you can gather, you will most likely have to push to get a referral to the PH specialist. If the PH can't be improved, let the specialist be the one to tell you. Be nice but firm. If that doesn't work then drop the nice part.
 
I finally received some replies here and there...

I learned from the PHA message board, that the real pulmonary pressure as measured by a right heart cath is usually around 20 lower than echo. One women mentioned her son with 64mmHg on echo, and considered moderate PH. I take this to mean that I should probably have a right heart cath done sometime in the reasonably near future.

I emailed an expert in PH at the University in Washington. He wrote back that his patients usually had much higher numbers, and that my level was not that high a level. He also wrote that with my numbers, and complicated history, that he was sure my cardiologist would be best suited to answer my concerns.

Finally, my cardio wrote back, saying, "The difference between the 2 [last] echocardiograms is not signficant. That you have pulmonary hypertension, is not good and is probably from a multitude of factors (scarring, valve disease, left ventricular weakness). However, this is another thing that a biventricular pacemaker would likely help."

So, I am reassured I don't need treatment to start right away. I will discuss treatment options when I speak with my cardiologist next time, and I am looking forward to hopefully have my left heart function significantly improve with the bivent pacemaker to be implanted in January, and that this will affect the right side and pulmonary hypertension as well.

Karl.
 
You got some good answers, and I feel confident that your cardiologist won't just slough it off. So that's a very good thing.
 
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