I'm new to this Forum and have some questions...

[AJC62]

Hi,

I am new to this site and wanted to find out some information regarding mitral valve prolapse. My boyfriend discovered at the beginning of December that he has this condition. He has been on two types of beta blockers since and is still having side effects, nausea, stomach pains, forgetfullness, and sometimes chest pains....Is this normal? He has become very withdrawn and depressed and used to be in touch with me just about every day or every few days and he hasn't been calling or getting in touch as he used to. I think he isn't getting in touch with others either. He is only in his thirties. It is a life-changing situation for him. He will need surgery! I want to know if this is a normal thing for someone his age to go through as far as becoming withdrawn, scared, and depressed. Has anyone else experienced this? And once he has the surgery do you think he will become himself again? Anything else you can inform me with would be very helpful!

Thanks,
AJC62

 

[dick0236]

Looking back, this was a very traumatic event in my life and caused all kinds of problems, such as those you have outlined. No young man, or woman, is expecting this kind of news when they are in the prime of their life. Fortunately, there is a lot of good suport and informaton now available that will help. Knowledge is the most powerful support for him and I would encurage him, and you, to read and ask questions. There is something weird and frightening about operating on the "heart", even tho it is not nearly as dangerous as many other surgeries, and the prognosis after surgery is "great". Help him not to isolate and to educate himself thru forums like this one.

 

[escargome]

Hi Mackie57,
Don't know much about mitral valve prolapse cause I had aortic valve replacement. But yes withdrawal, depression and being scared outta your mind do happen to many people. It is after all a big shock to our minds. As for the side effects you mentioned, your boyfriend might want to revisit his medications with the doctor that prescribed them. Has his cardiologist ordered any type of testing? Echo, TEE, etc.? My suggestion to you would be to just try and be there for him. Give him a little time to wrap his head around what he has been told. Yes, 36 is young, but there are many people on this forum who had the same type of diagnosis and were several years younger, it is possible to resume a normal life after open heart surgery.
You ask about what his outcome will be after his surgery? Has he been given a date?
Please keep us updated. Oh yea and welcome to this great forum. It is a wonderful place to ask questions, rant, and just get yourself more informed.

 

[Ovie]

When I found out that I needed surgery, I became very withdrawn and depressed. I'm 25 and have my first OHS tomorrow morning. However as Dick said above, knowledge can make all the difference, I'm still not excited to have surgery, but I'm a completely different person than I was before I started reading and asking questions. Really encourage him to do so, I think he'll find himself surprised on the situation and how many people are already on the other side of it living their life.

 

[ejc61]

Hello mackie. Has he been told his level of regurgitation? For example, moderate or severe? I probably had regurg for a long time before it became severe and thus surgery. I was given a few beta blockers post surgery which made very extremely difficult to live with according to my wife so I suppose that's possible. I was taken off them about 6-8 weeks post surgery. I'm not a doctor but I don't think beta blockers are needed long term for a typical MV issue. I was pretty scared when surgery was decided. It worked out well and I have no complaints. Prior to surgery, I did have a few panic attacks and was asked by my wife to keep a brown paper bag in my briefcase. Talking with his cardiologist will help with the nerves.

 

[Glen Swan]

I don't know much about that condition, but I can say they surgery in general is pretty normal, or close to being normal. OHS is pretty common too, I mean I just had a baby and we had surgery within 10 days of his birth. It wasn't open heart, but we were in a top Children's hospital for our area. It's amazing how many people have surgery every day, especially for babies where heart and valve defects on our floor that seem to happen every day. As someone said in a previous thread, it's just another day at the office for the doctors and they can work miracles in most all cases. For example, our nurse had a son that had multiple heart defects at birth as well valve issues. Most all of them have been fixed and her son is pushing 5 years old today. It's not the same as a 30-year old, but you have to remember that babies are still developing, still very fragile in terms of getting sick and all that stuff. So, to be patched up and fixed that early in life when the heart, valves and everything else is so tiny compared to those of adult age is simply amazing. I'm sure you are in good hands and everything will return to normal after.

 

[ejc61]

Good luck Ovie!

 

[AJC62]

Hi Dick,
Thank you for responding. I don't know if he will seek the support of these types of forums but I will inform him of such. I also sent him some information on testimonials of people who have gone through this and hopefully it will help him....
I guess I will just be there for him even though it is me getting in touch - I just don't want him to think I'm bugging him.
Thanks,
AJC62

 

[AJC62]

Hi Chris,
Thank you. And he did go back to his cardiologist and was put on another set of meds but the side effects are the same as the first meds he was on. I don't think his doctor is the best. I sent him some information on Mass General in Boston - where the best doctors are - but he said he doesn't want to go to yet another doctor. I'm sure he is afraid to have to start all over again with a new doctor. He hasn't gotten a surgery date yet -he sees his doctor next week.
Thanks again!
AJC62

 

[AJC62]

Hi Ovie,
I'm sure you did especially being as young as you are!! I agree with you as far as reading up on things and interacting with these types of forums...No, I know it isn't exciting to have surgery but knowing that the outcome will be good, I'm sure it is easier to have to go through it...
Thanks!
AJC62

 

[AJC62]

Hi ejc61,
His level of regurgitation is severe - I'm pretty sure... How were you different being on the beta blockers? I'm hoping once he has the surgery he doesn't have to go back on the beta blockers. I'm happy that you are feeling better after your surgery.
Thanks,
AJC62

 

[AJC62]

Hi Glen,

Thank you for your input and I can't imagine a baby having to go through that. It really is unbelievable what doctors can do nowadays.

AJC62

 

[AgilityDog]

Mackie,
I had severe SEVERE MVP. As in the valve was "blowing in the breeze."

I was put on beta blockers before surgery and am still on them 6 years later.

When I first took them, I had problems with dizziness (to the point of black-out), and vision problems (glowing sensitivity to light). It took a year to adjust. Taking them with food helps tremendously.

Oh, and folks, please, paragraphs help. My middle age eyes cross trying to read some of these posts!

 

[TenPly]

When I found out that I needed surgery, I became very withdrawn and depressed. I'm 25 and have my first OHS tomorrow morning. However as Dick said above, knowledge can make all the difference, I'm still not excited to have surgery, but I'm a completely different person than I was before I started reading and asking questions. Really encourage him to do so, I think he'll find himself surprised on the situation and how many people are already on the other side of it living their life.

Hey Ovie – best wishes to you on your surgery tomorrow. I'll be praying that everything goes well for you!

 

[AJC62]

Hi Laurie,
I'm new to these forums so don't know how to respond directly to one person.....He has had problems since he has been on the beta blockers and he has been on two different types and his doc said he will probably need surgery....
He does take them with food but he gets stomach cramps and nausea - just is feeling lousy.
Thanks,
AJC62

 

[Greg a]

Carolyn you may want to look at the thread on MVP I just started http://www.valvereplacement.org/forums/showthread.php?39739-New-in-the-field-of-mitral-valve-prolapse

 

[AJC62]

Thank you Greg!

 

[ejc61]

Hi ejc61,
His level of regurgitation is severe - I'm pretty sure... How were you different being on the beta blockers? I'm hoping once he has the surgery he doesn't have to go back on the beta blockers. I'm happy that you are feeling better after your surgery. I think he should still go to Boston to see the best there is as far as heart surgeons but I can only suggest it.
Thanks,
Mackie57

I think my level of regurg hit the severe category, called 4+ on the scale, about 6 month's prior to surgery. However, I was not sympthomatic. So it would be good to ask the cardiologist what his regurg is. Also, the size of the atrium will be a trigger point. If it enlarges to 6 (cm or mm) I'm not sure which, surgery is discussed. Lastly, is he sympthomatic? Does he huff and puff walking to the mailbox? This is basic layman's terms mind you.
I would definitely be going to Boston for that surgery either Mass General or Brigham & Women's. I believe almost all heart surgery patients go on a few beta blockers post surgery until the body gets back to normal. I don't believe this can be avoided. But I was told that I would be off beta blockers as soon as the surgeon thought it was ok. I never saw it as long term and it wasn't. I had a bit of plueral effusion which occurs sometimes after heart surgeries and that was really on and off painful but my surgeon said it will eventually go away within a month. Again, it did. Please keep in mind that I'm not a doctor. I'll be happy to share my experiences however.

 

[AJC62]

Thanks for this information. I'm not sure what his category number is. He doesn't get into it much and I asked about the surgery and he said he would discuss it further with his doc on 2/28. I think he is just so scared that he didn't want to hear anything the doc had to say - he would probably rather wait til he sees him. I agree - I would be going into Boston too - he probably feels if he sees another doctor they will make him go through the angiograph again and put him on yet another med and I'm sure he doesn't want that. Hopefully he won't have to take the BB's after surgery. I'm glad you are feeling better and thank you for sharing...
AJC62

 

[sarahsunshine]

Hi Mackie,

My brother was diagnosed with Mitral Valve Prolapse at a very early age (5 years?). They gave him all sorts of beta-blockers that made him feel so terrible and act so completely different from himself that my parents decided to take him off them and have him deal with his behaviour instead to deal with the symptoms (moderate exercise so he didn't turn blue and pass out - which he did on a frequent basis). He did great but didn't do that much extreme exercise. In the meantime he found out that he was misdiagnosed, and actually has a version of Wolff-Parkinsons-White that can be controlled with medication (he refuses surgery as he has controlled the symptoms for 3.5 decades through behaviour).

I say this simply because medications can definitely affect people in great extremes and each person has to determine the costs and benefits of medication.