A little aggravated

[Duffey]

Just returned from the cardiologist. I had a series of tests back in May that I had never heard the results from. Of course, I had obtained the results myself and have just been waiting to hear the cardio's thoughts. Unfortunately, I think the cardio was on autopilot today. A member of the medical group died last night from complications of valve surgery last week, so things were chaotic.

The echo from May indicates both my left and right atrium are enlarged, the inferior vena cava is markedly enlarged, and I have moderate pulmonary hypertension. I felt pretty good when the tests were run in May, but I have felt not-so-hot the last month or so. I'm experiencing a sensation of significant pressure in my chest, many, many pvc's, a cough that worsens as the day passes or upon exertion, and SOB. My EF is noted to be "well above 75%" but I think that percentage might actually indicate all is not well.

The cardiologist sent me home with a Holter monitor, first one I've ever worn, but dismissed the pulmonary hypertension as something that nothing could be done about. He said my blood pressure was good, no irregularities on the EKG, yada yada yada. Same results as before I had valve replacement, so I don't view his criteria as necessarily valid. Six months until my next appointment.

I'm not sure why I'm aggravated except that's my perogative! Seriously, the more I think about it, the less confident I am that he even realized I was one of his valve replacement patients. There was no discussion of last May's test results until I asked him point blank about the pulmonary hypertension. I know he hadn't reviewed them, and I'm positive his answer was off the cuff.

I'm a little concerned as to why both atriums are enlarging, but even if the cause could be pinpointed, I don't know that I would want to pursue any action or take any meds.

Think I should just wait until after the next 6 month echo and decide then if I want a second opinion on what's going on?

 

[Bina]

Me thinks that you may want to enroll in the "Freddie and Bina" Jump club.
Sorry to hear about your odd echo results and out of touch cardio visit, my cardio really tunes me out alot, he has the perpetual "you are fixed" attitude.
Put on that dang Holter monitor and let's get something solid to chew on.

 

[Danny]

Sorry you aggrivated, I hope your day gets better!

 

[Lynlw]

I think you should get a 2nd opinion now, why wait, you have had more questions than answers from the last few appt and I don't think the EF i s good at all. Heck you could even get an appt with a PH specialist to find out if they think the PH is primary or secondary, like your card seems to think it is, given his answer that nothing could be done about it

 

[Mentu]

Getting the brush off by a Doctor is unacceptible and besides it leaves you feeling anxious and you do not need that stress. If your Cardio has done this to you more than once, it is time to find another one. We pay them; they work for us. There is a doctor out there who wll listen to you and answer your questions rather than leave you in limbo.

 

[Duffey]

I think you should get a 2nd opinion now, why wait, you have had more questions than answers from the last few appt and I don't think the EF i s good at all. Heck you could even get an appt with a PH specialist to find out if they think the PH is primary or secondary, like your card seems to think it is, given his answer that nothing could be done about it

Wonder where I could find one of them? Got one up your sleeve? If so, please share!

 

[ShezaGirlie]

Oh so sorry Mary...

Oh so sorry Mary...

Make that the "Freddie, Bina & Janie Jump Club"..! I loved my San Antonio cardiologist, but he was getting up there in years and I felt he was becoming more and more aloof, so he got the boot.. I hooked up with a great young (around 50yrs) female cardiologist right around the corner in my little town and just love her MO.

I hope you get a second opinion Mary and get rid of this added stress..!

 

[ALCapshaw2]

I concur with getting a second opinion. At best, it sounds like your Cardio was 'not prepared' for your visit.

For starters, you might want to contact your surgeon, Dr. Kowchoukas' and see if he would give you a recommendation for a Cardio and a Pulmonary Hypertension Specialist. He may even offer to give you a second opinion.

'AL Capshaw'

 

[Superbob]

Damn right, Duffster, be aggravated! You have a right. We all have a right. Distracted cardiologists are reason enough. Quirky echo results are added reason. As for atriums (artria?), my left one is "markedly dilated," and right one is "mildly" so, and no one has ever said a word about that. Guess it doesn't matter -- huh? Got other stuff going on --- aorta ballooning -- see me in a year; oh wait, see me in six months. Your cough and SOB would seem to me to be conditions that ought to be explored further right now. Need a new cardio, perhaps? Or do you have a GP you trust? I have one now from moving here in spring who quarterbacks every thing. Calls my other doctors, calls me at home, and gets things done if they don't. Just a thought.

Hope it all gets better for you.

 

[Freddie]

I really wish I could I could recommend my Cardio to you Mary (& Bina) he takes his time to listen and to answer. Heck he'll even answer questions in a book store or at a concert - two places I have seen him.

But if I were you, I'd get on the band wagon and get a second opinion and/or make another appointment with this regular cardio doc, he might be more in touch after things calm down.

Your SOB and other things need to be address with real answers.

Wishing you the best.

 

[tobagotwo]

The cause could be the issue with your pericardium restricting the whole heart. That could cause the hypertrophies and atrial enlargements. But I seem to recall that issue mysteriously dissipated some time ago.

Otherwise, my understanding is that it's not true that nothing can be done about Pulmonary Hypertension. Right-sided hypertrophy is associated with PH, and it can also cause left-sided enlargement. Same for enlarged atria, which collect the overpressured blood (he's sure there are no issues with the tricuspid or pulmonary valves?). I'm sure Nancy will chime in, postwise or PMwise with better info.

An EF of greater than 75% is a warning sign of heart enlargement headed for CHF. If they see nothing wrong with the valves or pericardium, and you don't have uncontrollable blood pressure, then the pressure that's causing these changes has to be coming from somewhere else. The only other elses around I can think of are the lungs: PPH.

Please visit a lung specialist. Maybe also get a different test that shows your pericardium as clearly as possible. There's a limited number of things that can cause this. I wouldn't wait six months unless I was sure of the cause.

Best wishes,

 

[Lynlw]

Wonder where I could find one of them? Got one up your sleeve? If so, please share!

I would check the PH orgs site, if I was looking, see who is on their board, write their articles, check the forum ect.,
I don't have the link, but I know nancy posts it from time to time found it http://www.phassociation.org/

 

[Nancy]

"but dismissed the pulmonary hypertension as something that nothing could be done about"

I am flabbergasted!!! That doctor should hang his head in shame. There most certainly are things that can be done about PH! You need a PH specialist. This is why regular cards and other regular doctors shouldn't be taking care of patients with PH. They see so few cases that they don't bother to keep up with what is going on in that field.

Don't even go to your local pulmonary specialist unless they are PH specialists too. They will be just as ignorant.

Here are some sites for you.

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

Please join this forum and post your PH questions here. They are very helpful people, and contrary to your doctor, know what is going on.
http://www.phassociation.org/Message_Boards/main.asp?board=1

Here is the main page for the PH Assoc.
http://www.phassociation.org/
Go over to Medical Resources on the right and see if there is a specialist fairly close to you.

My husband had PH, and found a specialist after his local cards ignored it until he was almost dead. The specialist saved his life and he survived for many years because he got proper treatment for it.

 

[tobagotwo]

I told you Nancy would pipe up with some good info...

 

[Duffey]

And Nancy did!

Thanks, everyone. I've been messing with this issue for a long time now, and I've about lost all motivation to get to the bottom of it. You've put a bee in my bonnet, so I guess I'll get back at it.

 

[marie]

I do think you need a second opinion. I'm sorry to hear you're going through this. You're in my thoughts and prayers. Please keep us posted.

 

[Nancy]

Look, PH is nothing to fool around with. It has to be dealt with. It was a fatal diagnosis only a few years back, and now there are treatments that can give people back their lives.

This is why I am so darned angry at your doctor for his incredible lack of up to date knowledge. There are no excuses for his laziness.

In the early stages, and if your numbers are not too bad, there are some fairly common meds that will help. When the numbers get higher, there are other less common meds, and when the numbers are sky high, there are some pretty heavy duty and not well known meds that can help.

Joe was on Tracleer, and several other things.

Please, people, do not allow your doctor to ignore a diagnosis of PH. It can get worse and worse, as I said before, Joe was very near death when I found a specialist for him, and got him into treatment. He spent a month in the hospital straightening everything out.

And as I also said, his cardiologist at that time just totally ignored the diagnosis. We trusted him, and we didn't have a clue what PH was. We thought he had it all covered. We were so-so wrong. Joe ended up in the ER one evening, and as luck had it, he got a substitute cardiologist. It was the most fortunate thing. This man told us in no uncertain terms just what Joe had and how dire the prognosis was. Joe had severe PH. As it turned out, this young doctor had just come out of a rotation with the specialist in PH, and gave us the name and how to get ahold of him. I contacted the specialist online, and Joe was in to see him in less than a week, and was admitted to the Heart Transplant unit immediately right from that appt. The Transplant unit was where they evaluated their severe PH patients, and that is where he spent the month.

I don't mean to scare you, but this is something you should not ignore.

 

[Cooker]

Sorry you are upset ... I suggest, well, you know

 

[njean]

Aye, ya ya! I'll tell you, some of these drs seem to be cut out from the same pattern!!!

I think you need to get another opinion & soon.....not six months from now, ASAP.

And as for there being nothing he can do regarding the PH, that's a bunch of bunk! There are a lot of medications out there that will help PH --- I know, I'm taking 'revatio' remember?? And my PH dropped from 88mm to 65mm -- a considerable difference & I have been feeling a lot better. And I too have heard the words heart/lung transplant before, & that scares the begishers out of me!!!

Find a PH specialist & make an appt. I now have a PH specialist keeping an eye over me too.

Good luck to you Mary & please follow up on this --- don't wait until things get worse or out of hand!

 

[Lily]

Had no idea you were dealing with all of this! I'm very sorry to hear it. But when I read PH, I hoped Nancy would see it and encourage you with her experienced wisdom and wit.

Keep us posted, Mary, and best wishes .