EireCara

[EireCara]

Hi, Im 47 years old and I have had heart problems since I was about 12 years old. I had an echo a couple of weeks ago and it seems I have moderate mv regurgation. There are 3 clefts on the anterior mv leaflet. I am very sob, have no energy, cant work or walk very far and also have an irr heartbeat. Im not sure where to go from here. Iv been on Dilzem and emcor for about 10 years. My cardio wants to do an ablation ??? I dont know what to do !!!! My gut tells me its the mv causing me to feel sooo unwell.

 

[marky]

Welcome

I don't know anything about ablation..but am wondering if you have had a TEE? or cath done yet?
What is your relationship with your cardio? A second opinion may be in order.
You will surely get lots of good opinions and advice here..

 

[Adrienne]

A pulmonary vein ablation is a procedure done for atrial fibrillation which is probably what you have since you say you have an irregular heartbeat. It is often caused by the left atrium becoming more and more dilated since it is working so hard to help pump the blood in the right direction. You say you have moderate regurgitation. Do you know what the measurements are of your left atrium and your left ventricle. Do you know what your ejection fraction is? Maybe your cardiologist thinks all of the above are not so bad as to send you for a repair or replacement of your mitral valve. I don't know. If you were having an operation, they would probably do a maze procedure at the same time which is supposed to be the best method for stopping atrial fibrillation, but they will not usually cut a person open if it is only for the maze. The pulmonary vein ablation is done with a catheter, so it is not surgery. It is very possible that your SOB is being caused from the irregular heartbeat, but I don't know. I would try to get as many details as you can from your cardiologist, and also I would get a copy of your echo.

 

[Karlynn]

Welcome!
Mitral valves tend to be rather infamous for arrhythmia (irregular heart beats). Whether or not an ablation will work depends on the type of arrhythmia you have. I had an EPS (electrophysiological study) done to find the source of my arrhythmias and none one found. So I just had to put up with them until my valve replacement and most didn't come back after my VR.

My question in your circumstances is whether the arrhythmia is the sole cause of your other symptoms. It could be the mitral valve itself, the arrhythmia, your medications or a combo of all 3.

I'm glad you found us. I hope you are able to learn some things here!

 

[EireCara]

Hi, Well its Monday morning here in Irelalnd and when I woke up feeling the usual 'hopelessness' I usually have, I remembered I found this site last night and my spirit lifted (even a bit is good). Thank you for your replies...I dont have anyone to discuss my health problems or any other problems with so I look forward to learning lots and becoming part of the ''family'' here.

 

[EireCara]

Hi Marky, I had a cath done about 4 years ago and it was ok. I havnt had a TEE done. Havnt ever heard of that being done here??? I had an echo about 15 years ago which said I had mild mv regurgation, then another about 3 years ago in a different hospital (my local hsptl) which they said was 'fine'. As my relationship with my cardio is NOT good (at my last app with him, he told me to go home and 'soldier on') I asked to be referred to someone in a larger hospital in Dublin. He sent me to a EP doc who suggested the ablation. At the same app he ordered an echo which showed moderate mv regurgation. The technician doing the echo sounded very surprised that they had told me my last echo was 'fine', he mentioned it 3 times and told me not to leave until I had a stress test done. I managed 7 minutes on the stress test (i was having a good day) as some days are better than other. Sometimes if I go for a gentle walk I will get chest pain after about 4 minutes and have to use nitro spray. One cardio said it may be arterial spasm, but my new cardio ''doesnt believe in it''. Im soooo confused Im thinking about moving to England as at least I would have my sister there and a fresh start ''medically''.

 

[EireCara]

Also back in August 05 I wore a holter monitor for 24 hours which showed ..57 ATRIAL ECTOPIC BEATS ...1296 VENTRICULAR ECTOPIC BEATS....10 MULTIFOCAL ECTOPIC BEATS and 2 significant events of WIDE COMPLEX TACHY (VT) at a rate of 206 beats per minute, so I was given Amiadrone which is a very powerful anti arr drug. It helped with the irr stuff but the side effects were so bad that I stopped taking it. Since taking it my 'general' health has definitely gone down hill. Have any of you guys experienced 'pressure' in your heart, (its definitely in my heart as apposed to my chest) as if your heart is filling up with pressure. This happens to me if I step up a gear or rush to do something. (Im a single parent with 2 children)

 

[EireCara]

Hi, Well its Monday morning here in Irelalnd and when I woke up feeling the usual 'hopelessness' I usually have, I remembered I found this site last night and my spirit lifted (even a bit is good). Thank you for your replies...I dont have anyone to discuss my health problems or any other problems with so I look forward to learning lots and becoming part of the ''family'' here.

 

[marky]

Wow EireCara.. sounds like you have a few things going on, and a cardio who isn't on top of it.
NOt sure what your health care options are in Ireland? but a second opinion, or a new cardio would be at the top of my list if at all possible.

I only had A-fib after my surgery and only for a few weeks, so I don't know a lot about it, however there are many here who live with it and are better able to answer your questions.

Moderate regurg, isn;t a stage for replacement, it is typically a watch and wait point, however with all the other symptoms you are having It may be related to the valve.

It must be a bit concerning being single with the 2 children and facing health issues. Do you have a support team close by that you can call upon?
Sending you the best.. and please keep asking us, someone will have better advice. And Yes at the very least you will get lots of support!!
How old are your children?

 

[bvdr]

http://content.onlinejacc.org/cgi/content/full/48/3/e1?ct

Welcome to our on-line family! If you must "soldier-up" then you better become a very well educated "General"! You need to have every past medical record that is in any way heart-related and keep them together and learn as much about your condition as possible. I have posted a link above that will bring you to an area on our Reference Sources forum here on this site. It will give you indications for surgery. Also be aware if you have several things going on at once such as a-fib and moderate regurgitation the net result is actually more like moderate/severe regurg. I had my mitral valve replaced due to a-fib, a very enlarged left atrium, moderate stenosis, and moderate regurgitation. The end result was a "severe" cumulative dysfunction.

Sometimes a physician will dismiss a woman's complaints when the same complaints by a man would be taken more seriously. We have seen it happen many times on this forum and fortunately it is beginning to change here in the US but I have no idea if the same is true in Ireland. Listen to your body though and start documenting events so when you get to see another cardiologist you will have something concrete to discuss with him.

Hang around with us. It is amazing what it does to a person to find other people who have been there and/or are going through issues similar to your own. No cause for hopelessness anymore!

 

[sue943]

EireCara, it isn't a TEE on this side of the Atlantic, it is a TOE. I had one in my local hospital but it was the first one performed there in four years as they had been without a cardiologist for some time. During that time people had to travel to London or Southampton for it to be done.

I am not too familiar with the Irish medical system, is it a little like the NHS, more or less having to go where you are told and not where you choose?

If you were able to travel to the UK as a private patient I can recommend a superb cardiologist in Birmingham.

 

[Granbonny]

Hi EireCara

Hi EireCara

We enjoyed chatting with you last night. Glad you found us..and did what we said about joining.(Sunday Night chat)..Welcome and ask away..Bonnie

 

[EireCara]

Thank you Bonnie....its great to be here. 8)

 

[EireCara]

Sue943

Sue943

Hi Sue, Yes our health sevice is much like the NHS....in my experience so far, not very good unless one has private health ins. Unfortunately I dont, so I have waited for 11 months, and have been treated like a second class citizen, to get an echo and stress test done. This last year has been hell. Im seriously thinking of moving to England, to Somerset, where I have some family, but to be honest I dont know if I have the energy.

 

[EireCara]

bvdr

bvdr

HI Betty, Thank you for your thoughts. I forgot (i think) to mention that I have 3 clefts on the mv anterior leaflets...did you have that? Iv read that it is congenital and usually the hole in the heart condition accompanies it. If it has, nobody has told me, but that doesnt surprise me !! Im having a barium x-ray in the morning at 10 oclock because I havent been able to swallow properly since last February. Seems theres a possibility i might have had a mini stroke.I decided a couple of weeks ago to take a quarter of an asprin tablet....does this sound like a good idea? It just lucky Im a calm person because if I stop to think about all of this I think I will loose control and have a major panic of some sort. Im just so used to pretending everything is fine for my kids, I keep it all contained. (years of practice) Im sorry, I know Im blurting out tons of stuff all at once...its like the flood gates have opened.

 

[EireCara]

Marky

Marky

HI, Thanks for taking the time to reply. No, unfortunately I dont have a support unit. Have always managed on my own...until now!!! My children are 15 and 16 years old. We have been a happy little unit for 10 years, just the three of us, so being in a single parent family is normal to us!!

 

[Superbob]

Hi Cara,

Just wanted to add my welcome to this family. You will get voices of experience here in response to any questions you have.

All best wishes,

 

[EireCara]

Hi Rob, Thanks you for the warm welcome. Im absolutely delighted to have found you all. 8)

 

[bvdr]

HI Betty, Thank you for your thoughts. I forgot (i think) to mention that I have 3 clefts on the mv anterior leaflets...did you have that? Iv read that it is congenital and usually the hole in the heart condition accompanies it. If it has, nobody has told me, but that doesnt surprise me !! Im having a barium x-ray in the morning at 10 oclock because I havent been able to swallow properly since last February. Seems theres a possibility i might have had a mini stroke.I decided a couple of weeks ago to take a quarter of an asprin tablet....does this sound like a good idea? It just lucky Im a calm person because if I stop to think about all of this I think I will loose control and have a major panic of some sort. Im just so used to pretending everything is fine for my kids, I keep it all contained. (years of practice) Im sorry, I know Im blurting out tons of stuff all at once...its like the flood gates have opened.

I didn't have any malformation of the leaflets except that which was done by rheumatic heart disease. At the time of my MVR my aortic valve was also leaking moderately but that issue was not addressed during that surgery. I think taking low-dose aspirin is a good idea but it needs to be cleared by your doctor. You don't have to keep emotions at bay here on this site. They are part of what you are going through and everyone here understands that.
Mitral valve problems frequently cause the left atrium to enlarge and sometimes to the point that hoarseness can occur and even some difficulty swallowing. It is just something that could be considered other than a stroke. Has anyone every broached the idea of you going on warfarin?

 

[debster913]

Hi, there---

Obviously others on this thread have illuminated your question about an ablation. I had an EP study in February after my cardio discovered ventricular tachycardia on my event monitor recordings. I'm assuming you had an event monitor, and that's why the ablation is possible? In my case, I ended up not needing an ablation after all since I have non-sustained V-Tach, but the EP study in itself really wasn't that bad; I was nicely sedated during the procedure, and very sore in my groin for a few days.

Like you, I'm also a pediatric mitral valve case, though my valve problems have been known since birth (I was a very sick newborn, having had a heart attack). My valve was repaired this summer, shortly before I turned 31. I'd also had awful symptoms with my valve for years. I couldn'r run anymore at age 15 since running on my high school's track team was making my valve worse; and I'd been tired for years. It wasn't until this past April when my valve finally gave me the loud message, "It's time!"

Don't think that this EP study/ablation you're about to have will result in immediate valve surgery, although, to me, it seems like you'll likely need surgery soon. The symptoms you've described are exactly what I had in April. The study/ablation is for your irregular heartbeat to see what's causing it, and the valve is another story. I do hope you get the answers you need regarding your valve and any other heart-related issues you have. You have lots of support here!

Debi (debster913)