I Don't Know If I Have Enough Information........

[Jkm7]

Hi:

Please bear with me as I only have scant information but am confused and hope someone can help me understand.

As a consequence of my heart attack (2 1/2 years ago), I have had some heart enlargement. My cardio switched me from toprol xl to coreg at the time this was discovered about a year after my heart attack/bypass surgery.

An echo showed mild to moderate leak at Mitral Valve but I had no symptoms. The coreg seemed to work well as the enlargement decreased and, when the heart shrunk, so did the amount of leak at MV.

He put me on echos once a year and continued coreg. A subsequent echo showed less lealk at the MV and the coreg seemed to be working well. (I am not overweight, walk everyday, don't smoke and only drink a little wine a few times a week. I eat a very heart healthy diet.)

October, my exam was great and he was ready to put me on once a year checkup but said, let's do one more at six months to be sure.

When I went in May, I had shortness of breath, fatigue and he ordered an echo and nuclear stress. The enlargement thankfully, did not increase but the leak is of more concern. I do not have specific numbers as, in truth, all the numbers get me dizzy. I trust my cardio (he's the one who saved my life during my heart attack) and at this point, I am asking many more questions.

He is clearly concerned. He said my EJ decreased slightly but thinks the small difference can just be personal interpretation. (52 to 47)

I asked many questions yesterday and he patiently and clearly answered all of them. I had so much information swimming in my head when we got to this next part.

He spoke of Pulmonary ??Hypertension??? I don't know if that is what he called it but think he was referring to how much of the leaking blood from MV is going back to the lungs and causing the shortness of breath. He said they look for a number of 30 or below but mine is above that.

Please, please I hope someone knows what I'm babbling about and can explain. If 30 and below is a good number, what is a number they start to worry about? If it isn't called Pulmonary 'Hypertension", any idea what the proper term is? My brain was on overload by the time we got to this and that was a question I failed to ask.

You are all so supportive and helpful here and I treasure the help you have provided.

Thank you in advance for any additional help you can offer me.

 

[geebee]

The blood backup to which you are referring is caused (in your case) by Mitral Valve Regurgitation. The backup of blood into the lungs is usually called Pulmonary Edema (which causes SOB) and I believe that can lead to PH.
Did the doctor talk about treating the new issues?

 

[Nancy]

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

That's the right link, I hope, the other was obviously wrong.

You can ask your question on the Pulmonary Hypertension Assoc. website, forum above.

There are very specific numbers for the different categories of PH, and there are also confusing numbers based on either echocardiograms or right heart caths.

They will give you the numbers.

My husband has PH. His started out in the severe category at around 75 and he was put on Tracleer for several years. this brought his numbers down to a much lower category, in the low 40s. This is still not a normal reading, but he had to stop Tracleer due to liver problems which it can cause.

They will be watching his numbers for any increases.

There are several new medications coming out possibly this summer which are better in the liver problem category.

But at any rate, there are now many treatments for PH. Years ago, there were none.

Many times when the numbers are in the mild category, there are heart meds that can help with PH.

 

[Jkm7]

Nancy.....You are an angel.

You have answered what I was looking to learn. My 'number' was derived from the echo and not a cath. He has not yet ordered a cath but we did talk about it.

The 'number' I was looking for was Pulmonary Hypertension as you discussed. When he told me the normal number being 30 or below, I did not hear (or he did not say) what numbers above that level get them nervous. Is 40 not normal but not dangerous? What about 50? I understand from your response that 40 is not normal but is not outrageously alarming as was the 75 you mention.

Thank you. I feel I have a better grasp now.
I also will make good use of your link.

What a relief to learn there are some good pharmeceuticals ready for market. Timing couldn't be better!!!

 

[Nancy]

When I get a moment, I'll get together the numbers for you. They are different depending on what is read during the echo or cath. The right heart cath is the gold standard test for PH, not an echo.

 

[Nancy]

Here are some links with good information on PH.

http://www.phassociation.org/Learn/FAQs/General_FAQ.asp

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

http://www.aafp.org/afp/20010501/1789.html
Is quite out of date re: treatments, There are many more now. But the basics are there.

See first paragraph on pressures. The pulmonary systolic pressure from the echo is probably what your doctor was talking about.

Joe's pressure of 75 was the MEAN pressure from his right heart cath.

 

[Nancy]

Here are some numbers re: Ph pressures. This is from a discussion on the PHA website.

If you think they are confusing, you are right. It is very easy to get everything confused. You really have to know which pressure the reports are talking about.

And to make matters worse, some doctors have their own criteria for classification and treatments.

Basically it is like everything else, it is a combination of how you are feeling along with the actual numbers that make the most difference.

Some people are very symptomatic at mild pressures, some don't have symptoms at high numbers.

Read as much as you can so you can have an intelligent discussion with your doctor about it. And also know that most doctors never see a case of PH in their careers. So it is not a common disease. And the best treatments you will get for it will usualy come from a specialist who sees PH cases exclusively. They are not in every city, so people travel for help with PH.

_________________________________________________________________



SPAP
Systolic Pulmonary Artery Pressure - pressure in the pulmonary artery when the RV pushes blood through it into the lungs
Directly monitored during pulmonary cath
Normal range = 17 to 28 mmHg

MPAP (also called MAP)
Mean (average) Pulmonary Artery Pressure - average pressure in the pulmonary artery. In the formula, diastole (heart's relaxation phase) counts twice as much as systole (heart's contraction phase) because 2/3 of the heart's cycle is spent in diastole
Formula: [(2 times DPAP) plus SPAP] divided by 3
Normal range = 10 to 16 mmHg

PH
Pulmonary Hypertension - state of high pressure in your lungs' blood vessels. An average pulmonary artery pressure (MPAP) higher than 25 mmHg at rest or a PVR higher than 3 Wood's units is considered PH. An MPAP of 26 to 35 mmHg is considered mild PH; 36 to 45 mmHg moderate PH; and over 45 mmHg severe

The definition of mild pulmonary hypertension, which was made in Venice last summer at the Third World Symposium on PAH, was stated as a tricuspid regurgitant velocity on Doppler echocardiography of 2.8-3.4 m/sec. This corresponds (assuming right arterial pressure of 5 mm Hg) to a systolic pulmonary arterial pressure of 36-50 mm Hg.


Pulmonary Hypertension - state of high pressure in your lungs' blood vessels. An average pulmonary artery pressure (MPAP) higher than 25 mmHg at rest or a PVR higher than 3 Wood's units is considered PH. An MPAP of 26 to 35 mmHg is considered mild PH; 36 to 45 mmHg moderate PH; and over 45 mmHg severe.

 

[Jkm7]

Nancy.......Thank you so very much. You are such an immense help here I can't imagine what so many of us would do without you.

Seems my '40' falls in the moderate range when measured by echo. My cardio and I discussed cath yesterday and he feels we can wait a little bit until we go to that next step. This PH issue has just been discovered/discussed for the first time this week.

I am fortunate that he and his group/local hospital are all associated with Massachusetts General Hospital (where I had my bypass surgery). I am sure if it becomes advisable for me to see a pulmonary expert, MGH most probably will have one/some on board. If not, I am near Boston and Brigham and Women's, New England Deaconess etc

Your advice for me to do a lot of reading is excellent and what I plan to do. I don't wish to kid myself into thinking that 'things' will freeze in place and I will remain stable at the level I am at but have not yet totally given up hope that could happen. The power of positive thinking and all that.

Seems I am teetering on the edge of problems. I'm sort of in the holding pattern at the moment and the longer I stay there the better as far as I am concerned. I feel reasonably good and keep very active.

My cardio is permitting me to continue my usual and regular activities including travel but trusts I will use common sense and good judgement. That I shall do....besides our next trip, which is coming up soon, will be with our closest friends and of this couple, he is a very respected MD in our area. I told my cardio we were traveling with him (he knows him well) and he just smiled. Does give me a little more 'security' about leaving home.

The more information we have, the better position we are in. I am grateful my cardio respects that I 'read what I can/learn what I can' and is outstanding about patiently answering all my questions.....even the ones that might be a bit less than brilliant.

Nancy.....Bless you for sharing your knowledge and experience. For those of us just starting to learn, you are godsent.

 

[Mary]

Jim,
I second all the wonderful, true things you posted about Nancy. She's worth her weight in gold.

 

[Barbara Stewart]

Enough information

Enough information

J

There are two types of pulmonary hypertension, Secondary PH and Primary PH. If that is what the doctor was talking about, you would have secondary. That means there is an identifiable cause, but primary has no cause and is much more serious.

I developed the secondary kind before my last surgery. Just recently I went to a pulmonologist because, like you, I wanted more information. I was scared and had done a lot of research on the subject. This pulmonologist told me not to worry, but my pressure would probably not ever go down into the 30's, but I would know if I have PH. He said it is NOT a subtle thing. I felt much better.

Do research the subject so you'll have some questions for your doc. You might want to see a pulmonologist to get his take on the subject. From what I've read on this site, some cardiologists don't really know much about PH, so make sure he's knowledgeable.

Good luck,
Barbara

 

[Nancy]

Thanks for your nice words. I wish I didn't have all these links to such kinds of things. They all represent so many difficult problems that Joe has had. I sometimes think he came from outer space, he has so many unusual medical problems. But I know he is not alone. Thank God for this site, we are all in sort of the same boat here, the person with the problems and those who love them.

I just came across this really nice site for PH from the UK.

http://www.pha-uk.com/whatisit.asp#3

There are actually many more diagnostic classifications for PH than simply primary or secondary. this site lists 5 categories, each with sub categories. I have been looking for a while for a better explanation of the different categories.

Joe does not fit exactly into either primary or secondary. I have often thought he had some elements of pulmonary venous hypertension, along with a not as yet diagnosed autoimmune problem. And I believe that some of his doctors were heading in that direction as well.

It gets more and more complicated.

And by the way, after a certain level of pressure, both primary and secondary are treated much the same, so the lines blur.