adhipanyo
  • 8 replies
  • 378 views
  • 6 followings
adhipanyo, January 15,  2020  11:46am EST

MVP and Mitral Regurgitation at 29

Greetings,

My heart story starts 4 years ago, when I was just 25.

A certain morning I woke up and was doing my daily morning routine and started to feel uncomfortable chest pain, dizziness and shortness of breath. I felt really bad and went to lie down to see if the symptoms would improve... the heart rate was going very high, palpitations, shaking and cold on extremities... scary for someone of that age and who always ate healthy, had proper weight and exercise regularly. It was one of the first times I really thought to be close to death.

Fortunately it was just a tachicardia and passed after some time. Even after the scary symptoms subside there was still this chest pain when exerting and scary palpitations every now and again I decided to go see a doctor.

I was probably unlucky... when I go in the doctors office he looks scary at me saying that I probably should not be there... "So young and skinny, there is probably nothing wrong with you". He asked if I had history of heart disease on my family (not that I know... maybe they died before diagnosis), high blood pressure or other risk factors... my answers were all no. He did not do much physical examination and just said I should be fine and that the chest pain was just muscular or something and there was no need to do other exams. I felt really not listened about the reality of the symptoms. He just said I was probably just ill nourished or dehydrated. It did not feel right inside me... so I requested to do an echocardiogram anyway. He insisted saying probably nothing will be found and that I am just too worried. Anyway he accepted.

From 100% skeptical about my symptoms reality he turned to terror mode after finding my Mitral Valve Prolapse (but not leaky yet) in a scary tone "Your valve is prolapsed... we will have to fix on the future"... as if it was just like changing a light bulb. He then decides to do a tilt table test and after I faint during the test he surprisedly also finds out that I have Autonomic Dysfunction. So actually there was something wrong in my body... I felt good about finding it and knowing I was not having some imaginary symptoms....

He precribes me a beta blocker to take when have the symptoms.

In the beginning most of the times I had symptoms, just a few minutes of rest would recover me. Gradually it progressed to the point that after rest the symptoms would continue on... so started to take the medicine when having symptoms. I had another check up last year and the valve was still not leaking.

That worked well until a few weeks ago, when the symptoms would not even get better with the medicine being taken continuously because I had symptoms often and was unable to follow my daily schedule.... I decided it was time to check with doctor again. 

Listening to the heart he found a murmur... so the valve started to actually leak. During the exam I did not have symptoms but the result was still mild leakage.

He changes my medicine to another long effect betablocker... that seems to keep the scary palpitations with dizziness and shortness of breath in long debilitating episodes away for now.

The symptoms now seem to have changed... not sure if it is side effect of the medicine... with not so big exertion like walking in quicker pace or going upstairs or uphill sometimes I feel short of breath and about to faint... this makes me feel debilitated like on the 80s... while still being only 29... waiting for my next appointment in a week.

Adapting mentally and physically to the new reality as it seems that with Mild Mitral Regurgitation surgery is not on the table yet... the medicine helps but my strength is not the same as before.

8 Replies
  • AHAASAKatie
    AHAASAKatie, January 17,  2020  10:33am EST

    Thank you so much for sharing your world with us! I agree it is hard to have a medical condition at 29. It will take a certain about of adjustment. However, please know that we are here for you to support and to listen every step of the way. Best Katie

  • AmbassadorB
    AmbassadorB, January 17,  2020  2:43pm EST

    Hi Adhipanyo,

    If I have your name right, I should get a gold star!    I played the "wait and see" game just like you.   In fact, I chose to go on a vacation to Yellowstone Park and wait until I got back to have the corrective procedure done (Aortic Heart Valve Replacement)    We got to the Park and on the first night there, I passed out and luckily was transported to a clinic and told that I would be given a helicopter ride to Idaho Falls where I would receive the critical surgical procedure.  Again, I ignored the professional guidance, but came back home to Michigan for a TAVR procedure (Transcatheter Aortic Valve Replacement)   I totally Blew the Yellowstone Park Tour.  Not good.   So why do I tell you this?    The flags are flying!   Do something!    Your health must take top priority.   You're treating the signs and waltzing around the problem.  Get the  cause of the problems fixed!   Today, Medical Science is way beyond where it was a decade ago.   Experimental procedures are everyday  happenings now!   The leaking valve is a "Don't wait any longer" condition!    Be confident - do it now!

    All the best!

    Ambassador B

  • AmbassadorMR
    AmbassadorMR, January 18,  2020  9:16am EST

    Hello and welcome to the heart valve support site. As Ambassador B has stated, your symptoms suggest that your heart valve leakage is progressing and needs prompt attention by your cardiologist to determine the cause and the next steps in your treatment. This could involve a medication change or adjustment or it may suggest that it is time to repair or replace the leaky mitral valve. While surgical procedures are never fun, they are both necessary and highly effective in treating heart valve disease for the long term.

    There are several options when treating mitral valve prolapse so it is essential that you see your cardiologist promptly. This is not something that can wait or be "worked through". Let us know what your cardiologist finds in your exam and we will be here to support and encourage you through your treatment journey. We've been there and are much the better for our treatment so all the best to you as you move to next steps.

    In Heart Health,

    AmbassadorMR

  • JudyKol
    JudyKol, January 18,  2020  2:15pm EST

    Interesting reading the posts. I was just diagnosed on Tuesday with Moderate Mitral Valve Regurgitation 3+. I am in Canada not sure sure if the grades are the same as in the US. My cardiologust recieved the report the same day I did, and has not called me. I am wondering if it is because the treament plan (for the AFib that I was diagnosed with the week before) remains the same: Beta Blocker and Blood Thinners, and Flecainaide next week.

  • AmbassadorC
    AmbassadorC, January 19,  2020  8:02am EST

    Welcome to the Support Network!  You have found a great community of heart warriors who will be your strength for the journey ahead.  My fellow ambassadors have provided you with great encouragment and direction, that I too echo as a mitral valve patient.  My diagnosis was found at a routine physical, when my primary care Dr. asked if anyone ever told me that i had a heart murmer?  I was not told this, and like, you, was in great shape with no other issues such a diabetes, non smoker, perfect blood pressure and chlosterol within limits. In an abundance of caution, she sent me to a cardiologist and it was confirmed that I had mitral valve prolapse.  The cardio wanted to give me beta blockers as well, to ameliorate the palps that I was experiencing, but did not attribute it to the MVP as I am a highly active kind of gal.  I did not feel comfortable with this generalize prescription, and sought a second opinion.  I too then play the watchful waiting game for some years before I became even more symptomatic with fatigue, shortness of breath and lightheadness.  The key for me was staying in touch with my cardiologist and ahearing to the prescribed course of echos and stress tests, as that will be very important in determining when you will need a repair or replacement, in combination with your symptoms.  As a result, it is IMPARITIVE that you communicate with your team.  What I have taken away from this journey, is that you MUST be your own advocate when it comes to matters of the heart.  Do NOT let your symptoms go and Do NOT delay in seeking a second opinion if you are not happy with your current team.  

    I invite you to research the Heart Valve Education center, if you have not already.  There are some great downloadable PDF's that you can use to track your symptoms.  What I have also found is that the more data you provide to your team, the more beneficial the conversation will be with your team.  Keeping a log of your symptoms and the activities surrounding it, will be super helpful to keep that dialog going.  

    As for your feelings of the unknown, it is perfectly normal. I, like you was very young when recieving my diagnosis.  What I can tell you is that I am coming up on my 7 year anniverary from open heart surgery, and I am so much stronger than I was before.  While scary, and perfectly normal, open heart surgery has become so advanced, that might be what your cardio was referring to when he/she made it seem like it 'was no big deal".  While it is a HUGE deal, sometimes Drs or surgeons don't have the best in bedside manners.  What you need to find, is someone that you feel 1001 percent comfortable with your heart being in the hands of.  Upon researching the HV education center, you will also find that there might be other treatments such as a mitral clip or transcather options that you might be qualified for.  The key here is to discuss your options with your team.  Don't be afraid to speak up. 

    We welcome you with heart and please do let us know what your team has recommended for you, as we are hear for you. 

    With heart, 

    Ambassador C 

  • adhipanyo
    adhipanyo, January 19,  2020  10:40am EST

    Thanks for the support and advise :)

    Now stable and back home, but two nights ago ended up needing to go to emergency room... serious difficulties of breathing that got worse liying down... I immediately suspected the new betablocker (atenolol) since last week...

    At the hospital the diagnosis was accumulation of liquids on lungs due to left side heart failure (probably worsened by side effect of the medicine I was taking)... they gave me diuretics and after eliminating the fluids I got better after 2 hours and could get out of the hospital walking by myself :)

    The emergency doctor changed my medication and asked me to see my cardiologist on Monday for double check.

    I think the part that felt the worst was not the scary situation itself... but the other person who accompanied me to the hospital (from midnight and waited until 3 am), saying that I did not look like have anything so urgent because I could walk out of the hospital myself (even after hearing the doctor feedback)... that really hurt... if they were feeling serious breathing difficulties I doubt they would just wait patiently until next day... people who do not have heart or other chronic conditions do not understand how you can be 100% fine at one time and 100% destroyed to bed just five minutes later if symptoms arise :(

    Stable and ok for now... heading to expert doctor tomorrow (just emergency doctor on weekends) 

     

  • adhipanyo
    adhipanyo, January 21,  2020  7:13am EST

    On Monday managed to see a different heart doctor in a better private hospital... he also suspected highly that the symptoms that send me to the emergency room 4 days ago were probably related to side effects of atenolol...

    As my mitral regurgitation is still mild level for doctors (at time of exam I did not have symptoms), although I am experiencing a lot of symptoms daily that, mess up with my daily routine, he said to try some more adjustments on medical therapy, and if the condition progresses than consider surgery.

    He added an ACE inhibitor medicine to take together with a new betablocker.

    Is anyone there that had mild valve regurgitation and had a lot of symptoms like me? If so how did you manage than? Did you anyone here got surgery even with mild regurgitation levels?

dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active