I'm feeling scared

[Nupur]

Hi Laura,

I wanted to say Hi to you on the forum as well. What a coincidence that we
are practically neighbors and have the same problem. I would love to help
you in this process in any way I can! Let's hope we can meet soon as well.

Hang in there!

Nupur

 

[vkernus]

Laura,

Hi and welcome. I am schedules for AVR and an acending aorta bypass wednesday am. Let me tell you, I am scared. I have faced many challenges in my life including combat and this is perhaps the most scared I have been. I am told that the fear is natural. My best advise to you is to ask questions, read and educate yourself as much as possible. The more you know, the less there is to fear.

Best wishes,

Victor

 

[bvdr]

Laura, welcome to our online valve family. I'm another who had rheumatic fever and was not diagnosed with it at the time. I am pretty sure though that I had it when I was 14. It doesn't really matter though since we have to handle the damage it caused. I had my mitral valve replaced a little over 5 years ago and the new valve is working very well.

I couldn't help but notice you list of medications. I'm assuming you have had rhythm (atrial fib?) problems because you are taking flecainide. I was on it for several years without any real side effects but then I began having really strange neuro side effects including double vision, blurred vision, dizziness, distortion of images and streaks of light...particularily in low light situations. I was researching the medications I was on and I was convinced that flecainide was causing me problems. My doctors worked with me to get off of it and sure enough, the symptoms lessened and are gone. You may want to look into it too. It is just an idea.

Anyway, I'm glad you are here. There are a number of us who have rheumatic heart disease here on VR.com so you are certainly not alone.

 

[Praline]

Hello Laura,
Nobody could have been as scared as I was when I found out I needed OHS. I was still reeling from Katrina, went to my Primary Care Physician for a yearly checkup and when I walked out of there, I had mitral valve regurgitation and needed open heart surgery.
Luckily I found this site and these wonderful people saved my sanity, literally. You will get through this and , just like me, you will say afterwards, "The worse part was the waiting and worrying".
I am 67 years old and still teaching first grade. So OHS is NOT the end of the world.

 

[davidpa28140]

Hello Laura, I just wanted to welcome you to the site. I had ohs for my aortic valve 15 days ago, I just wanted to say that the time leading up to the surgery was the worst. My doctors did a pretty good job to keep the pain at a minimum, it really wasn't anywhere near as bad as I allowed myself to think it would be. I was impressed with the on-x valve myself but as others have said knowledge is power and you are your own best advocate.

Best wishes,
Dave

 

[Freddie]

Hi there Laura, and I must admit that I was a little hesitant to post.
Your second sentence sounds like me.
I too was told that I must of had rheumatic fever or strep throat untreated when I was younger to cause my mitral valve to 'go'. But trust me, if you had rheumatic fever you'd remember it and family members would remember you having it.
I never had rheumatic fever nor have any cases of strep throat untreated. But after doing some research, I strongly believe now, that Phen-Pen was the cause. Have you ever used a dietary supplement that may have contained Phen-Pen?
I was put on the "on call list" on a Monday and had OHS the following Friday. My only concern was to prove the doctors they were wrong in their diagnoses. Yes I was in denial. It didn't even crossed my mind to do a search on Google.
It took me 3 months to even focus on the computer after OHS. And let me tell you, you have found the best web site. These people will become your cyber family.
Don't you fret, we're here to help and guide you when we can.
BTW, you'll do just fine. Try to relax and breath.
The force is with you

 

[Laura R]

Thank you so much, everybody, for answering me and making me feel like part of your kind, caring, upbeat community! I'm not very clear on using this site, so I'm going to try to respond in this reply post (Is there a better way to do this?): Al, thank you for the link. Dr. Miller does look good. I'll find out more after I get an appointment with him, which I'm expecting after my confirmation echo on Oct. 21; Zipper2 (Deb), good luck! Let us know as soon as you know on Tuesday. Also, your furry friends are adorable; Cooker, thank you for the animal-related smiles I got from your post; Jacqui, yes (aye! Is that Irish-sounding?) I developed afib in 8/05 as my mitral valve narrowed, and have been taking flecainide since and it works for me; Nupur, we'll be in touch. It is lucky we live so close; Victor, best of luck! Let us know how it goes; Betty, I developed an eye muscle side effect and also get those streaks of light, but I'm living with it because it's not bad enough to do anything about and the flecainide is helping, but I will keep your info in mind (in fact I cut and pasted it into my afib info sheet, so thank you); 15 days ago, Dave? How are you doing?
Thank you all again. I feel better now!
Laura

 

[dcat96]

Hi
I understand too how you are feeling. I had AVR a week and 1/2 ago, and let me telll you thee few weeks leading up to the surgery were hard...I read post after post and cooked cleaned and keept myself so busy. The first two days after surgery were no picnic, but things are looking up and I am feeling good. I ended up with the On x valve. Sounds like you have a great surgeon. you will be Fine!! stay positive it is half the battle!!!

 

[Laura R]

No, Freddie, I never took Phen-Pen, or any dietary supplement. I guess it's sometimes hard to be sure what causes this. Thanks for "the force is with you!"
dcat, you sound wonderful for only a week and a half post-op. Continued speedy recovery.
Staying positive makes so much sense, but it's hard!
Laura

 

[escargome]

Hi Laura,
I too wanted to say "Hang In There" I'm down in Southern Cali and had AVR on May 19th. I didn't find these wonderful people until after I had returned to work, but I check in everyday and have also learned so much, so I'm not in a panic as I get back on my feet. Please keep us posted as you begin your journey.

 

[CJoelHenry]

Hi Laura,

It is very natural to be scared, I was trembling when I checked into the hospital, you have many friends here to "hold your hand", Stanford is a great place, you will be fine, you will need to trust in the pros, that should release some anxieties.

I found that keeping a bright outlook and making plans for the "future" helped, and of course visit this board and voice any concerns, there is great strength to be found here .....

Most importantly:

Keep smiling,

CJ

 

[ctyguy]

Hi Laura...welcome

I had my surgery 7 months ago, a mechanical valve, On-X to be specific. I remember the panic that set in when I was told I needed OHS, it was like getting hit by a truck. And then of couse leading up to the surgery every little sensation I had I was sure that it was SOMETHING. Your mind can play tricks on you and I certainly think things are pronounced in our minds because we are facing something that seems pretty intimidating. At least it was to me ! I had several meltdowns prior to the surgery but you will find that this part you are in is the worst. I remember going downstairs for the post-surgical echo two days after my surgery. They did their business and then told me that the gradient was now normal, the valve was working perfectly and all looked good. The weight that was lifted off of me that day has stayed with me since. I still felt like I had hit by a truck but I KNEW I was gonna be better than I was. Im fully recovered now, back to doing everything I love, and can do alot more physically than I could pre-surgery. You will end up in the same boat, I think most can attest to the same type of results.

Hang in there and ask every question that comes to mind. Lots of good experience and support around here.

 

[TammyM]

Hi Laura,

I just wanted to welcome you and assure you that any and all feelings are normal!
For me, knowledge was a "control" that I needed in a very out-of-my-control time and I learned more from this site than I did from my doctors about what what to expect from surgery.
So, ask questions and let yourself feel whatever you need to! You are not alone.

Tammy

 

[Laura R]

Thank you for all the warm welcomes and words of wisdom and encouragement. You've made me feel lighter and less panicked.
Laura

 

[njean]

Just wanted to say Hello Laura & welcome to this site. I am glad you found us & hopefully by reading our posts & getting some "hands on information" from us, your fears and anxieties will be lessened.

As Cooker said, "we are not replacements for medical professionals" but we've all got something in common --- we've all traversed the same path, had the same fears & wondered if we'd make it back to talk about! And guess what, we did & so will you!

I too had rheumatic fever but I got it when I was 21 years old! And to think it all came about through a "strep throat infection" that was not taken care of immediately. Consequently I had my first 2 OHS in 1975 for double-valve implants (mitral & aortic) & then another OHS in 2006 to swap out the old aortic valve w/a new St. Jude.

Hang in & keep reading & asking questions, we're here to listen to you & offer what we can to help you through this difficult time.

 

[geckley]

Hey Laura
The waiting is the orst part. Once you get there when you wake up you probably won't remember anything. For me that was great. It gives your loved ones something to talk to you about when you start your recovery. My wife and I still talk about it cos I don't remember anything after I changed into my gown. After the surgery the only thing to be scared of is weather you have your pillow close enough in case you have to sneeze.
Hang in there everyone is scared it's human nature. You'll be fine.

 

[HeartDawg]

Hey, Laura!

Feeling scared? Of course you are! Geez, I was so glad my surgery happened a couple short weeks after the decision was made to cut me open, because those two weeks were darn crummy. Really ... much, much, much worse than the weeks after the surgery!

And ... I remember when the morning finally came ... yikes ... walking from the waiting room into the unknown! But, I asked 'em to give me lots of drugs, I got loopy very fast and woke up in no time giving my wife and family the "peace sign."

It's great to be alive, and really great to be alive in at a time when we got the know-how to fix the things that ail most of us on the site!

Go in there. Do what you need to do, and come back here and post. I don't spend much time here now, but greatly appreciated the community when I needed them.

 

[Laura R]

Thanks, Norma Jean (Wasn't that Marilyn Monroe's real name? ), geckley (I see that you're new. What's your story?), and Tom (I got a very friendly, upbeat vibe from your post. Thanks for the good vibes!).
I guess the positive side of this nerve-wracking waiting is that it's giving me time to learn as much as I can, and to get these caring posts (although I don't know how to answer posts individually and I still can't seem to get notified through my email).
I'm so grateful for all the kind words!
Laura

 

[The English Patient]

Hi Laura, I think I was most scared when I first found out four years ago. At that time I would have said that if there was one thing about me that was in great shape it would have been my heart?

I don't know about you, but the more I read about the great comebacks people have made the better I feel. This site is so full of great positive stories that mirror your situation and mine and that reassures me (and I hope you) no end.

Go and have a look at the sunshine...enjoy it. This is the best time there has ever been to be ill?

 

[Laura R]

Thanks, 'English'

Thanks, 'English'

It is encouraging to see that all the people here have survived, and it's also good that there are ways to help us!
Laura