New Member MVR

[Trinalovescats]

Hi everyone,

My name is Trina,I am 31.I had MVR on May 3rd.

A little about me,I started having shortness of breath back in 2013.I went to a concert where it's located up a hill and couldn't keep up with parents.They were a bit concerned that I couldn't keep up with them but thought it's because I became lazy working out...but as time went on I started coughing a lot and my teeth were bleeding daily.Then in November 2015,I went to the mall to do holiday shopping I was so out of breath that my mom dragged me across the parking lot,then my dad noticed I was pale and said I need to go to the doctor.
So,I spent my birthday at the doctors office and told him my symptons,they heard the murmur but said I believe have asthma,so they gave me an inhaler where I have to use every 4-6 hours which I used.As the holidays arrived relatives started getting concerned asking if I really has asthma since looked pale.They even noticed had a grocery bag where I would throw up from just walking.The months leading to my surgery got worse and worse I couldn't go anywhere and I couldn't even stay on the treadmill longer than 5 minutes.My teeth were bleeding more and more.I coughed so much that I would have to pull over for an hour before I got driving again.
Then BAM!!!I was driving home from work and my chest tightened and I got the sense of doom came over me,then I felt my mouth was wet and I looked in the mirror and my mouth was filling up with blood it was PURPLE.
I called 911,they met me at the house and took me to the hospital.
Later,that evening they said we are keeping you over the weekend because we saw something in your xray and want to do more testing.Tha next day I had an echo and then the following day the cardiologist told my parents,I need OHS and they cried because I'm an only child.
I had surgery May 3,and the doctor who operated me on me said I am lucky,my mitral valve was closed and said I was the real life WALKING DEAD,they are stunned the I even made it this far and that I'm glad that I didn't ignore as heartburn.
My mom even told me recently that if my heart didn't accept the valve,that I would have been put on a backpack with oxygen and be sent to die at home.

I'm getting use to my new mechanical valve and I can walk everywhere without stopping or throwing up,

I AM LUCKY.

 

[dornole]

Wow I am so glad that you have made it through surgery. I also had completely unsuspected mitral stenosis. Similar experience with the "asthma" and inhaler that didn't work, the horrible unstoppable dry hacking, especially any time I tried to lie down - I had to sleep in a chair - and coughing up blood (though not as severe as you have described - good Lord almighty). Finally doc at the urgent care sent me for an echo that sent me straight to the hospital. 12 hours later I had a caesarean to deliver preemie twins at 27 weeks and after I recovered from that (which did help reduce the stenosis symptoms) I was lucky to have a successful balloon procedure to open the narrowed mitral valve. That did give me mitral regurgitation and the stenosis is also coming back some (I have rheumatic heart disease) but working on 14 years of keeping my valve - they said it'd last 10-15 years before needing OHS replacement so I do feel lucky also.

So relieved you made it through and I'm sure your parents are too! Thanks for sharing your story and I wish you many years of health and happiness!

 

[Agian]

My mom even told me recently that if my heart didn't accept the valve,that I would have been put on a backpack with oxygen and be sent to die at home.
I'm getting use to my new mechanical valve and I can walk everywhere without stopping or throwing up,
I AM LUCKY.

I've never heard of that happening, but what would I know?
I would be terrified if I was in either of your shoes.
I'm an only child too Trina. Your parents must have been so scared.

 

[Agian]

Hey Trina, welcome to the forum.

 

[pellicle]

Hi and welcome Trina

That is quite a compelling tale and is probably more upsetting than some of the endo tales I've read here. Anyway, I'm glad you're not throwing up all over the place anymore

Getting used to a mechanical valve is indeed something. Its the correct view to have, as it is a change, and it is an internal change and you do notice it. However with time you notice it less and less. When I got mine its sound loomed clear in my conscious ... now I only observe it occasionally. I also use it to my advantage as I now have a much clearer indication of my heart beat, so I can tell (for instance) when I'm getting worked up about something by the beat change ... its better than having a robot reminder ;-)

You're in a good place for people who understand the issues (and with so many of us, from entirely different slants) ... I am not so good with psychology, but as a mech valver you'll probably be asking questions about INR and warfarin doses soon enough. Hopefully you'll find the answers you need on those questions too

PS: we've had a few threads on "getting the feelings out" of how you felt about this ... not that you need to but if you find yourself somehow bottling things up (emotions) then by all means talk about it here.

 

[pellicle]

I'm an only child too Trina. Your parents must have been so scared.

I had to read this twice, because I was going to say "I"m just a big kid too"

Trinalovescats When I was a 28 year old I never thought about my mum's perspective of having her baby go through this ... because ... well it was ME going through this. Later I came across some images of Mum in ICU and she looked worried. So like Agian says ... they may have been terrorfied and said "stupid ****" cos of that.

 

[dick0236]

Hi Trina. Glad you found this forum. You will find a lot of support and info here. BTW, we have a little something in common.....I got my valve when I was 31 also.

 

[Mellyouttaphase]

Hello Trina

I am also 31 and had my surgery recently. Your journey is terrifying but ultimately AWESOME that you are here to tell the tale. I hope your recovery continues on the up and up!

 

[Agian]

Hello Trina

I am also 31 and had my surgery recently. Your journey is terrifying but ultimately AWESOME that you are here to tell the tale. I hope your recovery continues on the up and up!

I have no idea why, but that comment really moved me.

 

[dornole]

Me too, Agian, I loved Melly's comment because it's a feeling I had after my heart crisis that I try to keep hold of, that feeling of awesome dodging the bullet and gratitude for life. Given that it was about 12 hours from dx to being on the "other side" for me - that's really how it felt, a fast progression from incredulous "I have what?" to "woohoo I'm still alive! Thanks, science!" I was only 34 when that all went down.

For a long time I had a little round scar on my neck where the Swann Ganz catheter was put in while I was in ICU (I looked like a Borg let me tell ya). I called it the "gratitude button" and I'd press on it with my finger and remember that feeling of wonder and happiness to still be around to see my kids grow up. I hope everyone who got their second chance is able to hold onto that.

 

[Trinalovescats]

Thank you so much!

Coming to this forum has helped a lot.

The company also sent me a ring to remind me of what it looks like,so it definitely helps when explaining to people what I went through.I always get hilarious reactions when I tell them it ticks!

Just like you,I'm on Coumadin and I was at a family get together and my cousin was upset why I couldn't eat the food with green.So my parents explained..she still didn't get it but that's ok.

This little girl at church calls me a transformer now!

 

[Trinalovescats]

Dick0236-

Thank you,knowing that you had this done at my age and your now in your 80s is a testimony that everyone should choose the mechanical!

 

[Trinalovescats]

If anyone is interested there is a song by former American Idol Danny Gokey called "Tell Your Heart To Beat Again" it's about his wife who died during Open Heart Surgery.
Its currently playing on gospel stations,but still if you get a chance...let me know!

 

[Trinalovescats]

Mellyouttaphase-

Yeah for being 31! I walked the mall for the first time in two years,so happy!

I still laugh when I look back at being in the hospital for two weeks,because I hallucinated that one of the nurses was alligator typing on the computer.

Good luck with your recovery as well.

 

[dick0236]

..............why I couldn't eat the food with green.

The don't eat greens is very old school. Those of us on warfarin long term enjoy greens like everyone else. The only caution would be to NOT PIG OUT on Kale, Spinache, etc. Normal consumption of vit K vegs is good for us and I wouldn't consider any diet that didn't include vit K several times each week.

 

[pellicle]

Trinalovescats

The don't eat greens is very old school. Those of us on warfarin long term enjoy greens like everyone else. The only caution would be to NOT PIG OUT on Kale, Spinache, etc. Normal consumption of vit K vegs is good for us and I wouldn't consider any diet that didn't include vit K several times each week.

I agree with Dick 100% on the above (all points in fact). I eat spinach often during the week. Last night for instance I cooked a south indian style chicken curry with spinach. The worst advice you will get in the USA about warfarin management is often enough from the clinics.

One of the good things about this forum is that we have a number of really experienced warfarin users who over time have taught themselves how to handle it properly.

Older posts by Ross and a older US doctor who ran a site once called warfarin info are the folks who know what they are on about.
For example
http://www.valvereplacement.org/foru...-coumadin-info

The clinics are a bunch of fools, set up to make money, and usually don't know much.

A blog post of mine which may be helpful

http://cjeastwd.blogspot.com.au/2015...r-example.html

 

[Trinalovescats]

Thank you guys for being helpful.

I'm still learning what I can and can't eat regarding Comadin.But it will find its way back u just have to balance it out.

 

[pellicle]

Hi

I'm still learning what I can and can't eat regarding Comadin.But it will find its way back u just have to balance it out.

pretty much you can eat foods as you like as long as you're not being weird about it (like by weird I mean juice 9lbs of Kale and have it in one sitting with youghurt and 6 grapefruit)

I'm cautious about your "it will find its way back" view without a bit more qualification. It may, but it may just result in you coming to harm. Do not play fast and loose with this.

I urge you to do weekly testing (and the finger prick machines are quite good) and I strongly recommend you be aware of any medications (even stuff like voltaren which you may not think of as a medication) or you can come to harm.

None of us want to see you come to harm.

Strokes may lead to permananet damage and GI bleeds can put you in hospital.

Keep your INR around 2.5 and you'll be fine (yes, even with a mitral mechanical)

 

[Trinalovescats]

I'm not a big fruit and vegetable eater,I have salad once in a blue moon.

My INR is usually between 2.5-3.5.It was 3.3 two weeks ago.Which is good.

I know I'll be fine I can walk EVERYWHERE now!

 

[Catie]

Oh my. What an ordeal you had, Trina. I'm so glad you made it through.

Tell Your Heart to Beat Again is a lovely and encouraging song, and I did not know the background and that he is singing about the physical heart! Very cool.

I will only be able to get a tissue valve, so I can't help about the warfarin, but I wish you well as you find your way, with help from our buddies here.