New here...confused & frustrated...Mitral Regurgitation & Hypertension

[deek]

First and foremost, thank GOD I found this forum! I don't feel so alone after all. I've been lurking for quite some time but THIS will be my first post.

My name is D and I'm 34 (almost 35) yrs old. From a cardiac standpoint, I've been told many things over the years; such as, I have several different murmurs to no murmur, mitral valve prolapse to no prolapse, mild MR to severe MR, mild to moderate AR, mild to moderate PH, severe hypotension to severe hypertension and last but not least Sinus Node Dysfunction for which I had a dual-chamber pm implanted last year.

Over a yr ago severe hypertension was discovered after the birth of my first child. ECHO at this time indicated only mild regurg of the mitral, aortic and tricuspid valves. DR said this would go away once BP was controlled. Since then, despite seeing a hypertension specialist & numerous meds BP remains high (ranging from 150/90 to 200/120). Severe symptoms of fatigue, dyspena, SOB, palpatations, peripheral edema, pulmonary congestion, chest pain prompted an ECHO in July which reads: Severe MR w/ moderate pulmonary hypertension (59mmHg/10mmHg), moderate AR and mild TR.

Measurements: EF:60%, LVIDd: 52mm, LVIDs: 11mm, LA: 38mm

Repeat ECHO in August reads: Moderately severe MR (3++) caused by anterior mitral leaflet override. One regurgitant jet is eccentric & posteriorly-directed, 2+ AR, 1++ TR, regurg velocity is 282.0 cm/s & est. RV systolic pressure is 39mmHg consistent w/ mild pulmonary hypertension. Mild left atrial enlargement.
Measurements: EF: 50-55%, LA: 3.5cm, LVIDd: 4.8, LVIDs: 3.4, ROA(PA) 0.38cm?

DR recommends just monitoring this every 6 mos while continuing to control BP w/ the opinion that controlled BP will lessen regurg and pulmonary pressures. The problem is it's been well over a year and BP STILL remains high, regurg went from mild to severe to moderate under the same pressures. I'm confused & frustrated beyond belief and wonder...should I have/demand further testing (stress echo, TEE or cath)? Should I consult w/ a surgeon at this point? I don't know what's WHAT anymore and I'm very symptomatic (DR attributes some of this to all the meds I'm on). My husband and I would also like to have another child in the very near future as he is 42 and I am 35 but at present THIS is completely out of the ? based on symptoms, bp and all the medications I'm on. Please, ANYONE/EVERYONE, I welcome any thoughts, opinions, suggestions you may have and I thank you in advance.
Sincerely,D

 

[Phyllis]

Welcome, I'm so glad you decided to post although I am sorry for your problems. Many will be along to help you with your echo results. I think you should seriously consider getting the opinion of a surgeon who will order any other tests he or she deems necessary and that will help put your mind at ease and give you a better idea if you are ready for surgery or will remain in the waiting room for a while. Best wishes to you.

 

[Cooker]

Welcome D!! ... I have no answers to your medical questions but I would seek a second, third .... opinion if I were you ... I was sent to surgery at the first sign of SOB after being monitored about two years ... Good luck and again. welcome

 

[JimL]

Welcome fellow Michigander!
You need to be seeing a cardiologist you trust, one who takes the time to listen to you and to explain what he/she thinks is going on.
Many of us have experienced a difference in treatment between cardiologists and surgeons, namely that cardiologists tend to postpone surgery, while surgeons tend to push up the date of surgery. I guess that just makes sense.

 

[kfay]

Welcome D. I, too, think it is time for you to seek second opinions. I was told most of my life that my heart condition was "moderate". It wasn't until I finally went to Mayo that I was told that I had the most severe anatomical form of my anomaly and if I waited much longer to have it fixed I would need a new heart. Needless to say I was shocked. However, no one else had ever done the extensive testing that was done there (I had a 3+ hour echo and a cardiac MRI in addition to others).

If you want to have another child, I would seek out not only another cardiologist's opinion, but I would send my info to a couple of surgeon's as well. I found that all of the surgeon's I contacted by e-mail were more than happy to review my echo's and other info. that I had sent to them and then they all called me and spoke to me about their opinion. I then travelled to meet with two of them in person. Many of us have had successful pregnancies with our heart problems, you just need to have great medical support behind you.

Kim

 

[deek]

Thank you Phyllis, Cooker, Jim and Kim. I'm in the process of compiling records to send out to surgeons at the University of Michigan (where I'm currently doctoring) and Cleveland Clinic. I feel funny doing this behind my DR's back but his approach just doesn't feel right to me. He thinks given my numbers I have time to wait but if I see a surgeon they'll operate given the level of regurg. Is this so bad? I'm young and hardly functioning with these symptoms and won't the regurg worsen the longer I have these high pressures? He claims it won't impact it much but obviously it has since I've gone from mild to severe under the same pressures.

 

[AgilityDog]

If you want another child, unless you can be controlled medically with Rx that won't affect the fetus/pregnancy, you're going to have to go for a tissue valve or a repair. If you want a repair, that may have to be done sooner rather than later. So def. get some second opinions, including those of surgeons.

You are your best advocate, and if you are suffering symptoms which adversely impact your quality of life, then you should take matters into your own hands and seek other options and/or other opinions. Then make your decision on how to treat. You and your family deserve you to have the best quality of life possible.

Best of luck.

 

[Nupur]

Welcome D

Welcome D

This place is great. I just joined it a month ago and I feel so much better. I am sorry you are going through this. It must be hard with a small child. I think you should absolutely seek a second opinion. I think different cardiologists may give you different grades of MR, at least that has been my experience (and in my case exact measurements have been difficult). The first cardio labeled me severe MR and the second one downgraded it somewhat to moderate-severe.

I never had a heart murmur until after the birth of my child, and it went from nothing to severe in a few years. Pregnancies are apparently very hard on your heart, so my advice is you should have this under control, or at least have all the answers before you think about getting pregnant. Especially when some of the problems or symptoms started after your first pregnancy. You are still young, you have time

Hope you find a good doctor and answers and once again welcome!

Nupur

 

[escargome]

Welcome D,
I can only echo the suggestions for getting several opinions. I apparently had a bicuspid aortic valve my entire life. Kept getting reassured by several doctor's that it was mitral valve prolapse and I was quite mild (even through 2pregnancies) Anyway, contracted bacterial meningites Jan 2008 and suddenly they are doing tests and telling me to have my aortic valve replaced because I had severe stenosis. Suffice to say May 2008 I received a bovine percaridal valve and until then didn't have a clue that I had only been living on 7 cylinders, now four months after surgery I feel great! Never had one symptom. Talk to as many doctor's as possible until all your questions are answered. Good Luck to you in the future...

 

[MikeHeim]

The most clear advice that I can give at this point is to get a 2nd opinion. ANYTIME you are not comfortable with the diagnosis and treatment plan from your doctor/cardiologist, it is not only your right, but also your duty to ask someone else. From the description of your symptoms above and what I understand reading your echo report, it would seem like the time to act would be sooner rather than later. There is no advantage to waiting while things get worse and worse when you have a condition that can be corrected.

 

[Lisa in Katy]

Welcome! I echo what the others have told you. It sounds like your doctor might be under the older way of thinking, which was wait until the patient is "half dead" before doing anything. Most cardiologists have now figured out that healthier patients have a better recovery. I waited a long time for my surgery (22 years), but that was under the old way of thinking. I went through 2 pregnancies with few problems related to my heart. However, I think I was lucky. As someone else mentioned, your best chance for a repair, which would be optimal at your age, is before things get too bad.

High blood pressure is a Catch-22. Your heart problems could be causing stress. Your stress could be causing high blood pressure. Your high blood pressure could be causing more stress. Your stress could be causing more heart problems.

 

[Marguerite53]

Welcome! I echo the notion to get another opinion. I don't really think you need to have done this behind your cardio's back tho. Most professionals are very comfortable about obtaining second opinions.

When you do see a surgeon, yes, they almost always want to get going. And yes, cardios tend to drag things on. They tend to want all the new advances and valve-types to be ready for you when it is your time. Honestly, I think that is some of it since there are so many wonderful new things happening for valve patients.

This surgery is generally not too difficult. Many of us are dumbstruck by how relatively easy it really is. Okay, not a picnic, but not insurmountable. But you are young and so you really need to educate yourself about your choices with valves. Getting thru the surgery is not the tough part for you. Living with your valve choice is, since you will have it a long time and there really are many differences. That should be a huge topic with Cleveland Clinic.

I am an only child. I think wanting a sibling for your current child is wonderful. I wish I had had one! But I'm 54 with a long marriage and 3 incredible children of my own now and I do not feel even remotely alone. If you end up just having your "lonely only" she/he will be fine. It is a wonderful life when you don't have to share your parents!!! The key here is to keep both the parents around. Take care of YOU!! And is sounds like you are doing just that.

You will enjoy our community. Come here often and ask us anything...there probably isn't much we haven't heard!

Best wishes

Marguerite

 

[WayneGM]

Welcome to VR. Sorry for the circumstances but glad you found us. I echo the advice given about getting opinions. OHS isn't nearly as bad as it sounds. I'm two and half years out and feeling fine. Best wishes and good luck.

 

[deek]

Thank you so much to you ALL. As I mentioned before, I don't feel so alone anymore. I've sent all my records to Cleveland Clinic to be evaluated for surgical consult and I plan to ask my Hypertension Specialist to refer me for surgical consult at the University of Michigan. As much as I like him, he should not be managing my valve problems.

Kfay - thank you for suggesting that I make contact via email. I did so yesterday and got an immediate response from Duke Cameron MD, Surgeon from Johns Hopkins. He said he'd be more than happy to set up a consult with not only himself but the cardiologist in which he works most with. I have a brother who's a fellow oncologist at Hopkins so that would be great. Again, many thanks for this suggestion.

As ALL of you know, it's so easy to get swallowed up in all this and to not KNOW what IS what. I'm passive by nature and am easily led. I can see just from lurking here that I MUST take the lead.

 

[Dawn-Marie]

Hi D ~ I don't have a lot of advice for you, but i wanted to welcome you to the VR site. I'm glad you're getting more opinions from other doctors. I hope you find a good doctor and get answers as to when the very best time to have surgery is.

Best wishes,

Dawn-Marie

 

[Susan BAV]

...As ALL of you know, it's so easy to get swallowed up in all this and to not KNOW what IS what. I'm passive by nature and am easily led. I can see just from lurking here that I MUST take the lead.

Hi D - You've received some excellent replies I think. For some reason when it comes to my personal medical issues, I'm a bit timid or something also. So I wasn't sure what to do when my (former) cardio brushed everything off, my tests and symptoms, etc. I eventually realized getting another opinion wouldn't hurt but didn't know where to go at first. I spent a few months in bewilderment, searching the internet for valve information on my worse health days. I can really identify with your frustration and confusion. Hoping all goes well for you; take care .

 

[The English Patient]

Hi Di...and welcome. New here myself and really value the insight on offer. The only advice I could offer is to recommend that you take the advice of the more experienced people on the site. Like you I am being monitored but havn't experienced the big shifts in readings. I just want to wish you all the best and to let you know that you will find lots of support here.

 

[ALCapshaw2]

Thank you so much to you ALL. As I mentioned before, I don't feel so alone anymore. I've sent all my records to Cleveland Clinic to be evaluated for surgical consult and I plan to ask my Hypertension Specialist to refer me for surgical consult at the University of Michigan. As much as I like him, he should not be managing my valve problems.

Kfay - thank you for suggesting that I make contact via email. I did so yesterday and got an immediate response from Duke Cameron MD, Surgeon from Johns Hopkins. He said he'd be more than happy to set up a consult with not only himself but the cardiologist in which he works most with. I have a brother who's a fellow oncologist at Hopkins so that would be great. Again, many thanks for this suggestion.

As ALL of you know, it's so easy to get swallowed up in all this and to not KNOW what IS what. I'm passive by nature and am easily led. I can see just from lurking here that I MUST take the lead.

Right On Deek !

I'm a Big Believer in getting multiple opinions for complex situations, especially from Surgeons, since they are the only ones who can actually FIX the problem.

You have picked some very good sources. If you would like another close-by source, Beaumont Hospital in Royal Oak, MI is a high volume Heart Surgery Center (and has been rated higher than UofM).

'AL Capshaw' (a former Michigander)

 

[Smiley2000]

You are not alone!

You are not alone!

Hi there! Glad you found us pre-op and while your in waiting room... I am about your age (32) and had my mitral valve fixed 6 months ago. I only discovered I had MVP in Dec. 2006 and 2007 I was VERY symptomatic, but all the echo's said it was 2-3 leak and not to worry.

I stayed very symptomatic and Surgeon was called in and they "said while you're still young and healthy, let's fix or replace it". Post-op report said: atrial enlargement, pulmonary hypertension and CHF. Severe MVRegurg. So, what I am trying to tell you: get a TEE done and even a Cath if you have to, but if you are very symptomatic, there is a reason for it and don't make the mistake I made by waiting to long.

I now struggle with Pulmonary hypertension (which is as a result from waiting so long to get my valve fixed) and I don't feel this "whoopy feeling" post-op that I am suppose to be feeling - well, not yet anyway.

Please insisit on a TEE (echo's can be misleading) and go for 3rd, 4th opinions if you have to, but listen to your body: it is telling you something.

Keep us posted

 

[Nancy]

You need to get a right heart catheterization to determine the exact pressure of your PH. If this hasn't been done, and your doctor is relying on echoes or TEEs for diagnosis of status of the PH, it is not exact enough. The gold standard for PH is the right heart cath and the 6 minute walking test.

If you haven't been to this site below, you should go there and join and get into the General Discussion forum. The people there are wonderful and supportive about PH and will help you.

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

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

http://www.phassociation.org/

Another good info. site.

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

Merely controlling your BP, will not necessarily have any effect on your PH. It is a different animal.

But there are other meds that can help, one of which is Revatio, for the less severe forms of PH.

And most doctors do not have enough expertise in PH to do much about it, no matter what they say. You need to get in to see a specialist in PH.

My husband had severe PH and was treated with Tracleer which reduced his pressures considerably.

PH can cause a host of problems, one of which is terrible problems with CHF, especially ascites (abdominal CHF). Fainting can also happen, along with difficulty breathing.