Just wondering this after filling in a form which asked “do you have a heart condition?” Because I don’t technically have MVP anymore?
If it’s just a tick box between yes and no with no space for further comments, what do you tick?
I just wanted to share with everyone something that really surprised me. I am a little over a week out from mitral valve repair via sternotomy.
The surgeon found that my heart was more enlarged than the echo indicated. He feels I should have been getting echos much more frequently than I was given that I had never had regard with my MVP for 35 years then had an echo that showed mild regurgitation and did not have another one for almost 3 years, that one showing severe regurgitation.
Also, I had a lot of calcium buildup on the annuals as well as the leaflets and a torn chordae. The calcium buildup is due to the mechanical wear and tear on the valve over time.
He said I could’ve benefited from having had this surgery earlier because now I have to be on meds for six months to a year to help remodel the heart. All of this despite barely having any symptoms other than a little bit of increased shortness of breath with exercise.
So just really advocate for yourselves and make sure your cardiologist is on top of frequent enough echocardiograms and realize that sometimes we really don’t know what’s going on until they’re actually in there.
The good news is he said everything should be fine and that my heart will eventually get back to the size it should be. I’m doing extremely well for only a little over a week out. Take care everyone!
Hello.I just wanted some information.Im set to get my mitral valve replaced with a mechanical one this year.How was the recovery? How long did it take? Was minimally invasive possible in your case? My doctor said my valve should he replaced rather than repaired so I’m pretty scared as I’m only 21.
Hi everyone,
I (28F) was diagnosed with MVP with mild regurgitation and been taking a beta blocker, very low dose (1.25mg). My cardiologist advised me to go back to the gym and live my life as before the diagnosis.
However, it is very hard for me to workout. After 15 minutes my legs get shaky. I also get really dizzy after the treadmill.
I gave birth around 11 months ago and haven’t been exercising since pregnancy because of multiple complications I had during pregnancy.
It is understandable to need some time to adjust to the new routine, but I haven’t been a pro before and have been starting and quitting the gym multiple times in my life but never felt this weak and dizzy and not being able to complete even simple workouts.
All of my blood tests and echo came back normal without anything suggesting this kind of issue.
Would really appreciate hearing from anyone who went through something similar. Do you have any advice on how to ease back into the workouts without feeling so awful.
I am seriously thinking about quitting the gym because I am afraid of passing out and stressing myself and everyone around me.
It was helpful for me to read other people's experiences before surgery so I want to share mine in case it helps anyone else, because some things are the same as other's experiences and some things kind of surprised me.
I am a 68 yo F who had severe mitral regurgitation and had full sternotomy OHS at the University of Michigan last week Tuesday for mitral valve repair. My surgeon came highly recommended and is one of the best in the country. I live about 4 hours from the hospital so my husband, daughter and I traveled to the Med Inn on Monday, which is right inside the hospital, so tremendously convenient.
I was the first case in the am so I checked in at 5:30 am. All of the pre-op things were done (get into gown, VS, weight, IV, a skin prep and nose swabs) then my family could be with me while the anesthesia team and surgical team members came in to talk to me. Finally it was time to go back and I was brought into a frigid OR suite packed with people and equipment. They got me over to the table and gave me a warm blanket and some nice drugs through my IV. I was still awake and still remember all of the team members saying their names and what their role was, not to me but more of a formal "roll call". They numbed my wrist and started the arterial line while I was still awake but I didn't mind. I heard someone say "Dr. Bolling is here" and the next thing I knew surgery was done and I was in CICU.
Yes, I did wake up still intubated. It was very uncomfortable, but my family was there and I knew that and it helped. I was able to write "take it out" on a piece of paper and after about 15 minutes they did. Apparently the first thing I said was "baby zebra.. no no- baby giraffe". I guess I was having some happy dreams anyway. The first day in the ICU is pretty much a blur and I don't remember much. Anesthesia is still in the body at that time plus powerful pain meds. My son was there and I really don't remember it.
Things started getting rougher the first night in the ICU. I wasn't in tremendous pain but I was having wild images before my eyes whenever I closed them (not scary just psychedelic), I was supremely uncomfortable and felt crummy. I had a true ANGEL of MERCY as my nighttime nurse and I could cry right now for how grateful I am that she was there. If you do not have that kind of nurse I would recommend asking a very caring family member or friend to be by your side that first and second night. Really just someone to hold your hand and help psychologically is a huge deal. Sleep was not good.
The next day lots of lines and tubes came out and I was moved to the step down unit. My husband and daughter were with me all day and I still did not feel right and was uncomfortable. I was taking oxy for pain along with lidocaine patches, Tylenol and muscle relaxers, plus a boatload of new meds and I had no appetite. Everything tasted like glue and I couldn't get enough water. Another rough night in the step down unit and I finally broke down and cried and I think that was good for me. All of this time, medically I was doing great. My VS were stable, labs where they expected them, etc. PT had started and I was up walking the halls.
Thursday things stared to turn around in terms of feeling like myself again. I think it had a lot to do with getting off the oxy. I have had surgery before and know that oxy is not my friend. I get nauseated and it messes with my mood and emotions. The pain was mild and occasionally more if I moved wrong or strained. Get your legs strong before surgery if you have the time! I had months to prepare so I had been doing squats, etc and it really paid off for getting in and out of bed and chair, toilet etc. I have not had any trouble with taking care of my bathroom needs as I have seen some other people mention so I'm grateful for that!
By Thursday night I knew discharge was planned for the am and I was able to eat a bit of food. I slept pretty well on and off Thursday but the visual strangeness continued. I knew it was harmless and I didn't let it scare me. Friday am the final IV's were removed and after talking with lots of folks we were finally discharged. I had to sit in the back seat because we can't disable the air bag but the 4 hours went by pretty easily and my appetite really woke up! For some reason I was craving a Burger King original chicken sandwich, something I haven't had in probably 20 years, so my husband obliged and I ate the whole thing.
Some things that have been surprising or challenging:
My surgeon said my heart was more enlarged than the echos reflected, and because of that I will have to be on a few meds for 6 months to a year to help with remodeling the heart. Also, I am on warfarin for 4- 6 weeks which I hadn't anticipated and it involves all the blood draws and coagulation clinic visits (virtual).
Speaking of my surgeon- he visited me a total of SIX times while I was hospitalized, just checking in and giving words of encouragement. STELLAR.
The scar is quite something. There is a significant bump at the top where the muscle is sutured back together under the skin, but I am told this will go down to some degree over time. The sternal pain is less than I anticipated and the upper back pain is there but not terrible.
Sleep has been my biggest challenge at home. I have a power recliner and it is very comfortable, but I'm not used to sleeping in it. I am one who is curled up on my side ordinarily. There was no restriction about sleeping on my side but that really hurts so I can't yet.
I'm hungry and eating but losing weight. My body is still adjusting I am sure.
Final thoughts: During the challenging times I tried to repeat the mantra "this too shall pass" in my mind. There is no getting around that this is tough BUT it wasn't as bad as I had feared and now at 6 days I am home, relaxing with my dogs with the windows open to a magnificent spring breeze.
My 80 year old dad has all the pre-op tests through his cardiologist, his first consult with the surgeon is June 8th and they already have him scheduled for mitral valve surgery on June 10th (unless something comes up on the consult that delays the surgery) . It seems odd to me to schedule the surgery 2 days after the consult? Is this normal? His surgery is not urgent but he does want to get it done sooner than later.
So my dad have mitralvalveprolapse since he is 14 years old. He also have high blood pressure. He is taking penidure injection for every 21days for all of his life. Now he is 50, he is bit overweight and trying to loose weight. Btw we are vegetarians. So my question is can he take protein powder?? If so, any recommendations for it?
I need a mitral valve replacement. At this time, I am planning to travel to a specialized heart institute in a major city about four hours from home because I feel very confident in the surgeon and facility there. At the same time, I wonder whether my local surgeons and hospital systems may be capable of handling the surgery as well.
I’m concerned about the recovery logistics — specifically, how soon after MVR people were able to tolerate travel such as a 4+ hour car ride home.
For those who chose a hospital outside their own city, how did you decide, and how difficult was the travel after surgery?
Hi, I'm a 39 year old woman with mitral valve prolapse and mild to moderate regurgitation that was diagnosed just a couple of months ago. My BMI, blood pressure, and cholesterol levels have always been excellent. There was recently an open enrollment period at work, and I decided to apply for long term disability insurance. I work for a state agency, and there was a questionnaire to qualify since I'm a late applicant, and it asked it I had heart disease. I wasn't sure but marked yes, then the next screen said I wasn't eligible.
Just wondering if anyone else has had this experience. I applied because I am, legitimately, feeling like crap most of the time and can't imagine continuing my stressful full time job until retirement. So I get why they wouldn't want to cover me.
But at the same time, does this really count as heart disease? My ef is good. I'm frustrated that there was no opportunity to give additional information about my "heart disease," because, as I understand it, many people have valve issues that never cause symptoms and never progress.
And I'm frustrated because, if I had applied just a couple months ago, I would have qualified. Or if I hadn't gone to the doctor. The lesson learned, which is too late for me, is, if you're feeling bad and suspect chronic illness, to apply for long term disability insurance first, and THEN go to doctors and seek diagnoses. Damn.
This could have potentially paid 60% of my income in the event of disability, so I just really wish I'd applied earlier.
Anyway, now I'm wondering - has anyone else with this condition qualified for long term disability coverage? Has anyone had to use it and successfully been able to? I would love to hear your experiences. I'm single and truly scared that I won't be able to continue supporting myself.
Hi everyone, I was diagnosed with mvp last 2021 after having covid twice (37 at that time). My cardiologist prescribed me with carvedilol beta blocker 6.25mg taken twice a day (before breakfast and before dinner). So I've been taking this maintenance since then.
I'm 42 now, I wanted to get back in shape cause I'm underweight at my size. Is it possible to lift weights even the lightest like 5-10 kg dumbbells or even 50 ml water bottles? My only exercise is cardio, I walk a lot and have never run in 5 years.
2 years ago I was active, lifting water bottle weights around 2L, but due to priorities and busy schedules along with multiple occasions with flu I slowly fell off the routine. Now every time I want to get back with small weights like 50ml water and see my heart rate go up in my smartwatch I hesitate to continue cause fear and anxiety with breathlessness kicks in.
I have no problem walking and carrying my bag or groceries that are even heavier than the weights I mentioned, do you think I should do heart rehab with doctors starting with small weights?
I have had two 2D echos and my cardiologist said my heart muscle thickened a little, she asked me if I was athletic in my younger days and I said I was and she assured me nothing to worry about. But now I'm afraid to lift weights. Do you think this is just anxiety or should I do a cardiac rehab supervised program?
I’ve got to have a cardiac MRI soon to check for MAD and fibrosis… just wondering how many of you have all these features and what your next steps with your cardiologist? Mine mentioned a loop recorder as I also have NSVT and a ton of ectopics.
Bonjour,
Je suis un homme de bientôt 40 ans.
On m’a diagnostiqué un prolapsus de la valve mitrale il y a maintenant 12 ans. Aujourd’hui, je suis passé au grade 3 et les médecins commencent à me parler d’une éventuelle opération.
Honnêtement, ça m’inquiète beaucoup et ça m’angoisse.
J’ai vu qu’il existait des opérations mini-invasives, mais la plupart des chirurgiens semblent plutôt proposer une sternotomie complète.
Y a-t-il ici des personnes qui ont subi cette opération ?
Quelle méthode avez-vous choisie entre la mini-invasive et la sternotomie ?
Comment s’est passée votre récupération et comment vous sentez-vous aujourd’hui ?
J’aimerais vraiment avoir des témoignages honnêtes pour m’aider à y voir plus clair, car une partie de moi se demande encore s’il ne vaudrait pas mieux continuer à vivre comme ça malgré mes petits essoufflements.
My friend has mild MVP, and lately she’s been experiencing shortness of breath that sometimes continues even after her swimming lessons. I’m a bit worried and wondering if this could be dangerous in any way.
She’s planning to see a doctor/hospital soon to get checked properly, but until then I wanted to ask if swimming lessons are generally considered safe with mild MVP, especially when symptoms like this are happening.
I honestly don’t want her pushing herself too hard, but she really enjoys swimming and doesn’t want to stop. Any insight or similar experiences would be really appreciated.
I’m currently 28 weeks pregnant and I just had my cardio check-up today. I asked my cardiologist since I’m already in my 3rd trimester if there’s anything I should know or prepare for on the day I give birth, and what I should inform my OB about since I have mild MVP.
He said he can’t really predict what might happen during labor or how epidural might affect me whether I end up having a normal delivery or a C-section. But he did mention that he would prefer me not to push too much during labor because straining can also affect the heart, so there’s a possibility that I might need a C-section.
I still haven’t talked to my OB about this yet, but I just wanted to ask if anyone here had a similar experience where their cardiologist suggested a C-section because of a heart condition. Did you follow the advice? What did you end up doing?
Also for moms who experienced a C-section, how was it? Was it scary? Sorry for the many questions, this is my first pregnancy and I’m honestly just trying to prepare myself.
Hi everyone,
I’m 30 years old and recently got evaluated for mitral valve prolapse with severe mitral regurgitation.
My echo findings:
- Severe MR
- Flail posterior mitral leaflet (possible chordal rupture)
- EF around 55–65%
- Heart chambers still normal size
- No pulmonary hypertension
Symptoms are mild right now. Mostly fatigue occasionally, but I can still do normal day to day activities.
What I’m struggling with is timing.
Since I’m still functioning normally and my heart function is preserved, I’m wondering:
- Is early surgery usually the better option in cases like this?
- Can someone safely monitor this for 1–2 years?
- Has anyone here had successful mitral valve repair for flail PML at a young age?
- Any recommendations for surgeons/hospitals in India especially for valve repair?
Honestly just trying to understand whether I should proactively get this fixed now or if I’m overreacting.
Would appreciate any advice or personal experiences.
First off, hello!
I’m a 44F, in otherwise decent health other than being overweight and some knee issues due to an injury and failed repair surgery 3 years ago.
I went to a new PCP (4th one over a year while I was searching for one) who actually LISTENED to me and didn’t just say “lose weight and drink more water,” and in addition to prescribing me miracle migraine meds (I haven’t had one in 6 months!) she heard something off when listening to my heart.
Sent me for echocardiogram, referred me to a cardiologist, got a TEE done, cardiologist referred me to a surgeon…annnnd here I am. Surgery is not scheduled yet, but going to be in the next 1-2 months. Surgeon recommended doing it now as my leak is pretty severe, but I have no major symptoms, as I’m young and have no major health issues - other than weight.
With all that said - I’m FREAKING OUT! I’m seriously a wreck since I got this news last week. I have two young kids, an amazing husband, and a great support system (my parents) - and I am so so scared. I’d love some positive stories, please! That I’m doing the right thing in getting it done, and it’ll all be good. And, yes, my dr will be doing OHS…which again scares me so much. Oh! And I go for a catheterization in a few weeks too - what’s that like?
Thank you so much for helping to put this worried Mom at ease…❤️
After surgery I was in complete heart block, I got a pacemaker. Later went into afib, cardioverted twice, and then cardio ablation surgery.
HI....hoping this is the right board as I don't have MVP, but I was just diagnosed this week with Mild/Moderate MR (50 y/o F).
Really just looking for others experience with this type of new diagnosis, I'm really stressed and scared. My dr did go over the results with me, and was extremely patient and kind, and of course told me not to worry, but I feel like a ticking time bomb.
The reading Dr actually rated me as Moderate MR, but my cardiologist said had he read and recorded the report, he would have classified me as Mild-Moderate. He thinks the other dr classified me higher because they have no baseline to compare anything else to, but that the rest of my numbers were good.
He said they will be monitoring me closely to establish a baseline, so I go for another ECHO in 6 months, and a follow up appt in July beforehand. He said if everything remains the same in October, then I can be considered stable, but if it progresses, then of course we have to eventually discuss valve replacement. The thought of that surgery makes me sick.
Just looking for some hope and a way to deal and accept this new diagnosis
I need a repair done to fix my Severe Mitral Valve prolapse. I have a meeting with the surgical team next week to discuss next steps (they dont have robotics as an option in the public route). Alternatively I do have private cover to do robotic. Any recommendations on this?