Livid

[MichyB]

Hi. I've read enough posts on here to know that lots of people have trouble with varying echo results, but this is ridiculous. I have scheduled an appt. with a new doc this October, and sent away for the echo's taken last year from a cardiologist I saw for a third opinion in as many years to clarify different results from echos. I did not get the results last year because I was told that I was fine, and that there was nothing to worry about, and to come back in a year.

Well, in obtaining the reports, I find out that I was diagnosed as having pulmonary hypertension, with a 43 mmHg systolic pressure (normal is below 25, mild is 25-35, mod is 35-45) and NOBODY BOTHERED TO TELL ME.

The past few years, I've been trying to obtain clarification of my condition. I was diagnosed as having tricuspid regurgitation and mitral valve regugitation that was said to be the result of a "physiological phenomenon", then as having a thickened aorta and "possible" bicuspid valve, then as a bicuspid valve with mild insufficiency, and now as a "possible" bicuspid valve with no insufficiency but with "moderate" pulmonary hypertension.

Is it too much to think that this doctor, who had all three of my prior echo's would have told me about this condition that nobody else even mentioned? How about the fact that I take the birth control pill, which is probably idiotic to use if I do have pulmonary hypertension?

I am sorry for venting. But I am livid at the thought that I was never informed of these results until now, and only because I asked for the report. Why go to the doctor if you have to get the reports yourself and do research in order to find out what you have?

Irritated,
Mich

 

[tobagotwo]

Dang.

Where are you located? We might want to steer clear. I think it's where all the Cardiologists went who graduated with a "C" average (oh, yes, they can and do...). And all the echo techs who got their certificates by sending away to an address on the back of a matchbook.

You have every right to be mad, it seems to me. It's a lot of work finding and going to new cardiologists, and you've done it three times.

Best wishes,

 

[Nancy]

I am so sorry that you find yourself in this terrible circumstance. My husband has PH also, and his is in the severe category, although it has been greatly reduced with the medication Tracleer, which can only be prescribed by a specialist in PH.

My husband also was not told of his PH, and it was severe for several years, and he was very, very symptomatic. We also discovered this when requesting his echo results. I can't tell you the anguish we felt when I started reading about PH online. I do all the medical research for my husband. The various websites gave me much more information than anything that we had been told, and neither of was told anything about the condition.

My husband came very close to death. I was lucky enough to find a specialist close to where we live, and made an immediate appointment for my husband. He was in such bad shape that he was immediately admitted to the hospital where he stayed for a month, while his specialist treated every aspect of his medical problems and did extensive testing. He stayed in the cardiac ICU section of the hospital for about a week and a half, and then the rest of the time in the cardiac critical care section.

This specialist saved his life.

Although you may read some pretty discouraging things about PH, that it is progressive and even fatal, much of what is written is only if one doesn't get proper care for it.

There are now wonderful medications which can stop the progression of PH, and even reverse some of the symptoms.

It does require the intervention of a PH specialist, not just someone who "knows" about PH.

Below is a link to the Pulmonary Hypertension Association website. It is an all too common thread that many patients are not informed of their PH. I have no answers for why this is so, perhaps it is because PH is such a rare disease that most doctors never see a case of it in their lifetimes, perhaps it is because they are not aware of the new treatments that are available, which are life-saving. For whatever reason, many patients find out about it in a roundabout way.

My husband still has tricuspid regurgitation, which has been extensively tested, and found to be an "innocent bystander" to his PH. No surgery has been suggested for his tricuspid regurg.

He does, however, have two mechanical valve replacements for his aortic valve, and mitral valve, the result of having had rheumatic fever as a child.

In the many posts on this forum throughout the years, I have seen quite a few who have discovered that they have PH. I have to conclude that within this population of valve replacement people, there is a larger than normal number of them who have PH in addition to, or as a result of, their valve problems.

For this reason, I feel that ALL valve people should request copies of ALL their echo results and examine them for possible PH. If it exists, it is usually mentioned at the point where the pulmonary artery pressures are mentioned.

I would advise you to do your research on the PHA website, and to seek the help of a PH specialist. PH in the moderate range needs to be looked at and evaluated.

I wish you all the best. You will have to advocate for yourself on this issue, I am afraid.

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

 

[Harrybaby666]

Hi Michy B, Morning Nancy

Hi Michy B, Morning Nancy

You know, its funny that you mention this Michy, because I just found out that I have it as well (Pressure of 43....) and you know, I would have loved to choke both the Cardio in the hospital and my own cardio for 2 reasons: 1. Dr. Shin (the hospital cardio) told me that I was "perfectly healthy and there was nothing wrong with my heart--WROONNNGGG), and that I was having trouble with my heart because of the carbonation in a lousy 20 oz soda pop!!! THEN, my regular Cardio, told me that he has patients who walk around perfectly fine with pressures double that of mine!!!!! I Totally sympathize with you on the rotten treatment that you have received, and I would certainly remind your cardio of the fact that HE IS NOT THE ONE WHO HAS TO DEAL WITH ALL OF THIS WHEN IT COMES TO HAVING THE ILLNESSES...Let me tell you, Dr. Shin WILL NEVER OVER SEE MY TREATMENT IN THE HOSPITAL OR OUT OF THE HOSPITAL AGAIN...I hope that everything will be working out fine for you...As Nancy has indicated by her links...PHAssociation is an excellent site..I have signed up and it's been very informative...

Nancy, Thank you ever so much for turning us all on to PHAssociation.org..I love the website, and I will be seeing my Pulmonologist This Friday about the PH...Gosh, I just can't take another illness.....Thanks Again...Harrybaby666

 

[MichyB]

Thank you.

Nancy I live in NYC now ... I used to live upstate. Perhaps if I had stayed up there, I could have used a referral for your husband's doc.

Harry ... I was actually lurking on the pha website and saw your posts, recognizing your name from here. I haven't had too much time to search on there but it looks like a great site.

Thanks to both of you for the info ... and to all of you for the support.

I am supposed to go see Dr. Marlon Rosenbaum at Columbia's Adult Congenital heart center next month. The staff there supposedly consults with other docs. If anyone has had any feedback about them, I'd appreciate hearing about it.

My plan is to go there with all of the echos and basically ask what the deal is. At this point, I have a smorgasboard (sp?) of possible diagnoses, some of which have never been confirmed more than once. One of my biggest concerns is birth control (now) and pregnancy (later). It would be nice to find someone who I can trust to help guide me through these issues.

 

[Nancy]

Preganancy with PH is dicey at best. Before becoming pregnant, please, please consult with a PH specialist.

This is not a condition that you should enter into without a PH specialist.

There are several wonderful specialists in the NYC area. Dr. Poon at My Sinai Medical Center is one that many people have used. Joe's specialist has gone on to other things, unfortunately. He has another. But if he were to worsen, we wouldn't hesitate to seek out the care of Dr. Poon. Go to the main PHA page and look up the specialists in your area. You are lucky that there are a few to choose from. There are not too many in the US and they are scattered far and wide.

You can also do a search on the site about pregancy. It's an important read for you.

 

[MichyB]

Ok, then here's my next question. In order to confirm a diagnosis of PH, must you do a catheterization?

I'm asking because I confronted the cardiologist who did my most recent echo today. To his credit, he returned my call same day. He said that he did not mention pulmonary hypertension to me because he did not think, based upon the other readings (including stress and nuclear stress test), that the reading on the pulmonary artery pressure was accurate. (I can tell you that the same echo's reading on my LV ejection was totally off ... it said 43. The nuclear test said 77). His plan was and is to redo the echo in one year and if it came up again, send for further testing and take it from there.

Was I a bit too hasty in getting "livid" about him not telling me about the possibility of PH? I'm debating going back to him and having him redo the echo before I go to someone else. The one year is up anyway, I'd like to establish some consistency with someone and he does a significant amount of catheterizations so if it came to needed one, I'd be in good hands.

I don't like the fact that he didn't tell me up front. And I hear your concerns about pregnancy ... I've looked at the website and it's quite scary. I'd need to find a very reliable doc and opinion before going there (there's no rush as I'm a newlywed ... I'm not even planning on getting a dog for at least a year).

Do you think that he should have sent me to have the echo redone last year? Would you switch docs on principle? Do I need to see a PH specialist with just a "possible" diagnosis of PH? And why didn't my other echo's even mention pulmonary artery pressure as being a mild concern?

I'm confused.

 

[Harrybaby666]

Hi Michy...

Hi Michy...

Hi Michy,

You know, one of the first things I learned when I first got sick (with my other illnesses) was that if I were not satisfied with the results or attitude of the doctor, I would get a second opinion, because it's YOUR body and not theirs, and truthfully, with as cavalier as my doctors have been, IT DOES ANGER ME AND MAKE ME WANT TO FIGHT EVEN MORE..I don't mean to preach, but I have found that the more demanding you are with the docs (even if it angers them) the real truth comes out instead of them trying to " brush you off or brush your illnesses off". Please don't feel as though you have been too hasty, because then it will keep your docs on his or her toes...which is one thing we need...I hope things go better for you and that you stay well...Take Care, Harrybaby666 P.S.. I think I have covered every emotion in the book...LOL

 

[Bunny_Rabbit]

My doctors don't seem to be concerned about my being on the pill and my PH.

However, I have a question...what pressure is it that you're talking about? Is it the "right ventricular systolic pressure"? 'cause my numbers seem to be a tad higher than you and harry have mentioned.

 

[MichyB]

Hi Bunny. Nice to meet you. The pressure that I am referring to is for the pulmonary artery ... measuring the pressure of that. I don't know if that's the same thing as "right ventricular systolic pressure". I'm pretty new at this condition, having only learned about it as of yesterday. Some of the others on here may know better if they are the same. How much higher?

I did a search on the phassociation website on the birth control earlier and some of the people on there were suggesting that their docs think the pill is safer than the chance of getting pregnant. (That doesn't make me happy.) I assume you're on a low dose pill?

 

[Debrinha GT]

Echo results

Echo results

Hello everybody, some of you might already have seen this post , but I thought it'd also be good to put it in here. As well as that, I've made a few changes to the tranlation which I think is better now, and added a few more details that are concerning me a bit.

This is what I heard from my doctor, now into English. Can anyone tell me what ithis means in practical terms, what does it all boil down to: The valve I have now had for nearly nine years is a Pericardium bovine bioprosthetic cardioprothesis valve #29

February14th, 03 Biological prosthesis with satisfactory cusps, sufficient and competent opening ,Maximum GRAD =16mmhg; medium grad med=08mmhg; valvular area (doppler)=4.09cm2. Enlarged Left Atrium.

January29th, 04 Biological prosthesis with slightly thickened cusps, sufficient and competent opening, max GRAD 14mmhg; Medium GRAD =08mmhg; valvular area (Doppler)= 2.99cm2. Enlarged left atrium

July22nd 2004, biological prosthesis with slightly thickened cusps, sufficient and competent opening, maximum GRAD = 14mmhg;Medium GRAD =7mmhg; valvular area (Doppler) = 2.68cm2. Increased left atrium.
Tricuspid valve, normal opening with mild regurgitation.
Sistolic pressure in the pulmonary artery estimated at 30mmhg

When I asked my cardio about this last result, he said that nothing much had changed, but when I got home and took a closer look at the exam, I noticed that he'd added two things that weren't there before as you can see. I recall my mum saying that during my first surgery the doctor had to touch up my tricuspid valve, but that was all and I'd never heard any mention of it until now. Could this mild regurgitation have something to do with that procedure done nearly 30 years ago? And what about the pulmonary artery, any connection there? I've had this same cardio for 10 years now, and although he usually answers my questions, he doesn't really say more than what he judges necessary. I've tried to get some information from my former cardio, but she totally refuses to comment on anything regarding my first two surgeries. She's in her 70s now so, there's no use trying to convince her that it's important for me to understand more about my past heart history. I'm considering getting in touch with the hospital in São Paulo, but I doubt they'll still have any records on something that happened such a long time ago. But if they do, can they simply refuse to help me? Any advice there too? I know that a couple of you have already replied to my questions, but any aditional information and opinion will be most welcome. Thank you all.

Débora from Brazil

 

[Nancy]

Echocardiograms are not considered accurate enough for PH to be anything but an estimate which can vary either way by 20 percent or so. And that can be significant for a proper classification.

The gold standard for PH is a right heart catheterization, not a left heart catheterization. Most PH specialists will do that to get the most accurate numbers. Some specialists, if they find PH, will also do a drug challenge while doing this procedure, to evaluate just which drugs the PH will respond to. Not every person responds exactly the same way.

A specialist is the VERY best way to go, no ifs ands or buts.

I would suggest that you pose your questions on PHA message board. There are people there who are MUCH more knowledgeable on all of your questions than I. My husband has been treated for this condition for only a year and a half. Many have been treated for many years and can give you the numbers and all of the technical data.