So what the heck is going on with me??

[Der Biermeister]

All tests point to mild to moderate AI. Also mild PH.
LVEF =65%. No indication of CHF, even though he expected to find some. I do have some LVH but the ventrical itself is normal. Rest of my heart is A-OK
No enlargement of the Aortic Root.
Cat Scan shows no blockage and no lung cancer.
Catherterization of left side was normal (two stents put in last Nov., but are not blocked)
I've lost 30 lbs since a year ago. Down 14 lbs since I was hospitalized a month ago. I still need to lose another 50 lbs.

I am following strict low sodium diet (and low fat also).

I am on 2 mg of Bumex
40 mg of Lisinopril
Plus Norvasc and Vytorin for BP and cholestoral.

I have my company doc listen to my lungs every week -- totally clear.


AND YET I CAN HARDLY BREATH! If I walk 50 yards, I have to stop for a minute or two to get my breath back.
I am no better than the day I left the hospital.
My cardiologist wants another echocardiogram, but NOT until November.

I simply can't figure out why my symptoms are much worse than the diagnosis?
Thanks
DB

 

[Nancy]

Pulmonary Hypertension, even in its mild form can cause shortness of breath. There is also a connection between PH and sleep apnea. I saw your other post. Sleep apnea was one of the things that was looked at when Joe was hospitalized for a month with PH. They did try a cpap machine on him in the hospital. He couldn't get used to it.

His PH was severe. And he was put on Tracleer which brought his pressures down from 75 to 44, still moderately elevated, but much, much better. He uses no oxygen. So that was a miracle drug for him.

The gold standard for testing of PH is not an echo. It is a right heart cath.

Bring it up with your doctor and get his/her take on it. If your doctor seems to be ignoring your PH, it might be wise to at least get in touch with a specialist in PH. They are scattered over the country. Since it is a rare disease, they are not in every community. AND, ordinary cardiologists and pulmonologists don't see enough cases to understand about it, and to know what new treatments there are.

There are some doctors who choose to not treat PH in the mild form.

But it is important to get it looked at early. If it progresses, some of the changes are permanent.

Do you know what your PH pressures are?

Here is a link which discusses it in understandable terms. You will note the mention of CPAP down lower on the page.

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

 

[geebee]

Are you sure your SOB is due to your heart? I started having SOB earlier this summer when the weather got so very hot and humid. Turns out I have "exercise induced asthma". Now, when I am active and have SOB, a short shot (minimal because it can affect heartrate) of Primatene solves the problem immediately.

With EIA, if you go to the doctor when you are not having SOB, your lungs will sound clear and everything will look fine. It's only during an "attack" that the diagnosis will come about.

I thought my SOB was heart related because of my history. I usually think any similar problems that come up are heart related. Not always the case.

 

[Der Biermeister]

The gold standard for testing of PH is not an echo. It is a right heart cath.

Bring it up with your doctor and get his/her take on it. If your doctor seems to be ignoring your PH, it might be wise to at least get in touch with a specialist in PH. They are scattered over the country. Since it is a rare disease, they are not in every community. AND, ordinary cardiologists and pulmonologists don't see enough cases to understand about it, and to know what new treatments there are.

There are some doctors who choose to not treat PH in the mild form.

But it is important to get it looked at early. If it progresses, some of the changes are permanent.

Do you know what your PH pressures are?

Here is a link which discusses it in understandable terms. You will note the mention of CPAP down lower on the page.

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

Nancy -- I remember your advice on the right heart cath and I will certainly bring this up. I also had a pulmonary specialist while in the hospital, but unfortunately he's not covered under my insurance. (They paid his bills though -- so maybe they will allow a followup. I will check that out also).

The estimated PA pressure is 40 mmHg. Can you lend some explanation on that?

Listen, I really appreciate your inputs on this stuff. Definitely going to help.
Thanks
DB

 

[tobagotwo]

You have some LVH and your ejection fraction is 65%, which probably means your heart is working very hard - that's at the very top of normal. Are they sure it's mild-to-moderate? This can be complicating the PH, and they can play off each other. Nancy has some excellent links for PH, but don't let them get you discouraged, as they can sound grim.

Heat and humidity can also lay you low, As Geebee pointed out, even if your heart issues are not that bad.

You also have other heart issues, based on your meds and prior stents. I am glad to hear they are not blocking up.

Best wishes,

 

[Nancy]

Go to the link I gave you. At the bottom of the page there are some acronyms for terms used in tests, etc. Look at PH and it gives the pressures and categories. It appears that 40 is in the moderate range. With 26-35 mild.

Many of the specialists use the MPAP, which is the mean pulmonary artery pressure. That uses a formula, which is also explained on that page.

The acronyms can help you understand your echo results.

Your current pulmonologist may or may not be an expert in PH. Most of them are not. If you are getting ambiguous answers, then perhaps get your records and test results together and see if a specialist will at least look at them and direct you further.

There are some meds that are used that can only be prescribed by a specialist. And there are some others that any doctor can prescribe.

It might be good to investigate a CPAP. Many of the people on the PHA website use them. And they have helped a great deal.

Here's a link for the forum there

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

 

[Nancy]

One other thought, if a right heart cath is suggested to diagnose the PH further, then definitely seek out advice from a specialist. If they are interested in your situation, they may want to do it themselves. They can do a drug challenge while doing the cath that can tell what meds will work for your problems.

But always keep in mind that PH may or may not be the problem.

Right now, it seems suspicious, but you need more answers.

 

[Der Biermeister]

Go to the link I gave you. At the bottom of the page there are some acronyms for terms used in tests, etc. Look at PH and it gives the pressures and categories. It appears that 40 is in the moderate range. With 26-35 mild.

Many of the specialists use the MPAP, which is the mean pulmonary artery pressure. That uses a formula, which is also explained on that page.

The acronyms can help you understand your echo results.

Your current pulmonologist may or may not be an expert in PH. Most of them are not. If you are getting ambiguous answers, then perhaps get your records and test results together and see if a specialist will at least look at them and direct you further.

There are some meds that are used that can only be prescribed by a specialist. And there are some others that any doctor can prescribe.

It might be good to investigate a CPAP. Many of the people on the PHA website use them. And they have helped a great deal.

Here's a link for the forum there

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

Nancy - I went and thoroughly read the link you gave me -- and also printed it out for my records, thanks. Yes - the 40 is moderate by the article and yet called mild by the echo report and my own cardiologist. I will get this straightened out! Basically, my doc thinks my symptoms are a combination of the AI, the PH, and my excessive weight.

Your article makes no bones about getting the weight off, and that is what I've been focusing on for the last month.

Also -- I've been on and off CPAP for almost 15 years now. Actually cured my OSA 13 years ago through a walking program and diet -- lost 65 lbs. All that came back about 5 years ago when I blew my knee out and ended up having a total knee replacement - and then got lazy. Been back on CPAP for two years -- probably should have started 4 years ago. Oh well.

I am going to get a Pulmonary specialist who is on top of this stuff. Will have to do some research obviously to line up the right person that qualifies with my insurance (United Health Care).

Thanks again for the great help!
DB

 

[Der Biermeister]

You have some LVH and your ejection fraction is 65%, which probably means your heart is working very hard - that's at the very top of normal. Are they sure it's mild-to-moderate? This can be complicating the PH, and they can play off each other. Nancy has some excellent links for PH, but don't let them get you discouraged, as they can sound grim.

Heat and humidity can also lay you low, As Geebee pointed out, even if your heart issues are not that bad.

You also have other heart issues, based on your meds and prior stents. I am glad to hear they are not blocking up.

Best wishes,

Thanks Bob - your points are excellent. I really do think they are playing off each other. Plus the weight. I guess no one will even consider an operation until I get the weight off -- and who knows, maybe they will be right.

But I am going to pursue the right heart cath that Nancy suggested as well as linking up with a good Pulmonary specialist.
DB

 

[Abbanabba]

Hi DB, I can really relate to what you are going through. I've got a range of cardiac issues which my cardiologist(s) seem to think are OK given my cardiac history (I have a congenital heart defect). Anyhoo, I too have been struggling with SOB - which on some days is very bad - and am always fighting fatigue. My cardio has told me my heart is not the cause of these ongoing symptoms, but all other avenues of investigation have come back A-OK.

I have also been given a report of mild PH by one cardio, but then was told by another that that reading was not correct. All of my echos show that my right atrial and ventricular pressures are elevated above normal (not massively, but elevated just the same), yet still my cardios have been determined PH is not an issue.

I have fought for 2 years to get an appointment with a pulmonologist and will get to see him in November. I'm really hoping that he will be able to find something in the readings that the cardiologists have been overlooking, or just ignoring.

Anyway, I know how frustrating it is to be told you are "OK" when you struggle each day to just breath easily! I hope you can get the follow up with the pulmonologist and even more that you can get some answers. In the meantime, congratulations on losing the weight and I hope you are able to lose the rest you want to. It's not easy when you can't even walk around the block without stopping to regain your breath, so kudos to you.

All the best
Anna : )

 

[Der Biermeister]

Hi DB, I can really relate to what you are going through. I've got a range of cardiac issues which my cardiologist(s) seem to think are OK given my cardiac history (I have a congenital heart defect). Anyhoo, I too have been struggling with SOB - which on some days is very bad - and am always fighting fatigue. My cardio has told me my heart is not the cause of these ongoing symptoms, but all other avenues of investigation have come back A-OK.

I have also been given a report of mild PH by one cardio, but then was told by another that that reading was not correct. All of my echos show that my right atrial and ventricular pressures are elevated above normal (not massively, but elevated just the same), yet still my cardios have been determined PH is not an issue.

I have fought for 2 years to get an appointment with a pulmonologist and will get to see him in November. I'm really hoping that he will be able to find something in the readings that the cardiologists have been overlooking, or just ignoring.

Anyway, I know how frustrating it is to be told you are "OK" when you struggle each day to just breath easily! I hope you can get the follow up with the pulmonologist and even more that you can get some answers. In the meantime, congratulations on losing the weight and I hope you are able to lose the rest you want to. It's not easy when you can't even walk around the block without stopping to regain your breath, so kudos to you.

All the best
Anna : )

Anna - thanks for sharing your story. Yes - lots of parallels. I just wrote in another thread about how I think I am taking too much diuretics based on an article I read last night. Going to cut back for at least a week and see if that helps.
DB

 

[tobagotwo]

Just to clarify - my post didn't mean that I disagree with Nancy, or that I don't think you have PH. The appearance is that you do have it, at least to some extent, based on the less-than-stellar accuracy of the echo report. I apologize if my wording was too vague.

What I meant by that post is that the descriptions of PH, its severity, where it leads, and its outcomes can be a bit unnerving when you read the links. I meant not to get discouraged by the somberness of what you may read on the linked sites about PH. With proper treatment, outcomes are probably generally better than you might think from reading the websites in the links.

I agree that if the pulmonologist is interested in a right cath, it may be the best option for you to know what's actually going on. I wonder when the 3-D echoes will make interventions like catheterization less common for this and other issues.

Best wishes,

 

[strawberry]

Hey DB, I have been reading your posts and feel I am in a similar boat! I have mild AI, yet my ankles and feet have been swollen for a year. I've been on 1 mg of bumex for nine months. They say swollen ankles "sometimes just happen to women." You're a guy, right? AND my echo also shows mild TR so I wonder about PH. I have periodic SOB and wheezing. I'm trying to hold out til my annual in Dec. but your posts make me wonder. I to have supposedly mild disease with unexplained symptoms. Swollen ankles are a symptom of PH, and I have TR, so why wouldn't they check that further?

I'm right there with you in frustration. My feet hurt so bad by the end of the day even with the bumex.

 

[catwoman]

DB:

Congratulations on your weight loss. And good luck with your continued loss.
I've lost 50 pounds in the last 2 years, mostly since June 2004. I feel terrific now -- I speed-walk instead of merely walking. I have kept the weight off since last December, when I became a lifetime member of Weight Watchers. I've startled a few friends who haven't seen me in a while -- they don't recognize me and have to ask others if it's me.
Now that I'm at maintenance, I weigh myself every morning. It's easier to whittle away a pound or two instead of after it's built up to pounds and pounds.

It was my MVR that prompted me to lose my weight -- and keep it off. Better to keep my health risks to a minimum.

Hope you find out what's causing your SOB.

 

[Abbanabba]

...my echo also shows mild TR so I wonder about PH.

My echos show severe pulmonary regurg, mild tricuspid regurg, and trivial aortic and mitral regurg. I asked my cardio about this and she told me I was worrying about nothing since it's apparently "normal" for there to be trivial-mild regurg through all the valves. It's supposed to help stop clots forming..!!

Since previous echos had never mentioned the trivial/mild regurg, I tried to get her to qualify if this was just the difference between tech evaluations, or if this was "above and beyond" so called "normal" regurg. My thinking is any "normal" trivial regurg wouldn't be mentioned - unless it was "more" than "normal"..... if that makes sense.

We almost got into a fight about it because she seemed to think I was just finding things to stress about and "grasping at straws" as to why I feel so bad. I was only trying to determine how they quantified their measurements.

It will be interesting to see if the pulmonologist has a different take on things or not.

A : )