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michellep

I am 38 year old woman and have 2 children. I am trying to accept my new diagnosis (1 week). I had been having chest pains and a murmur was discovered 6 months ago. My doctor ordered an echo which revealed a bicuspid aortic valve with severe regurgitation. My tricuspid and mitral valves also have leakage. My cardiologist has told me that I will need a valve replacement, but doesn't know the timeline yet. I'm scheduled for a stress echo this week and then possible a cardio-cath.
I am having a difficult time accepting that I have gone from a healthy, active person to a sick person with a possibly life-threatening condition. I am stressed not knowing when I will have the surgery and feel tired and winded from my symptons.
How did you all handle the wait?
Michelle
 
Michelle,

First, welcome, you have come to a wonderful place with a wealth of information and a group of terrific people.

Second, I'm sorry to hear of your surprise diagnosis, I've known my whole life that I have damaged valves from rheumatic fever as a child. I never expected surgery, was always told it was benign, and was quite shocked when the cardio said 'surgery' back in Nov. The Cardiologist after reading my echo said surgery in 4-6 months the surgeon said 4-6 weeks! All I could think was "whoooooaaaaa, slow down, lemme catch up here and process all this!" At least I had *some* warning, I'll defer to the bicuspid folk here to address how the discovery of a congenital defect later in life feels.

For me I had to visit the range of emotions of loss, but after that I try every day to focus on the positives. We are very very lucky to live in a time & place where these disorders ARE treatable. I am really looking forward to feeling better after the surgery, I haven't been able to feel great in a long time and I'm looking forward to living with my newly repaired heart. I have 2 sons, even as teens they are still a handful, how old are yours? I would encourage you to focus on the positives as much as you can. I would bet that you've been tired lately, fatigued, etc., I sure was and now, finally, I know why! And it's treatable!

Time, knowledge and support will all help. We've all been there, it is quite an adjustment to hear the news. Give yourself a little while to adjust and then proactively move on and advocate for your own health.

Wishing you a peaceful and healthy future.

Ruth
 
Welcome, Michelle. The shock of the first diagnoses is the hardest and waiting for surgery even harder, but you have found a great forum where you will fine much support and hopefully many answers. Things are slower here over the holidays, but take a deep breath and know that many who have shared your exact situation will be along soon to help. In the meantime, educate yourself by reading through the pre-surgery, valve choice, and post surgery threads. I think you will find them informative and calming. Best wishes,
Phyllis
 
My two children are 13 and 16 (I also have a lovely step-daughter who is 8). I teach first grade. It's a busy life but I am definately feeling tired and the chest pains come more often. I am grateful that I found this site. My husband is trying to understand but this is all very scary for him so he is keeping his head buried for the time being.
 
Michelle, your husband's response is normal and maybe as you educate yourself here, he will come to understand as well. The success rates for this surgery are VERY good and you will go back to a healthy and normal life style. The important thing is to do all the research you can (here and elsewhere) and become an educated patient so that you can ask all the right questions of the doctors and get all the right answers. Again, welcome and best wishes!:D
 
Welcome, Michelle.

I second all that's been said. In addition, I lived in the Northern Virginia/DC/MD area when time finally came for my surgery to correct congenital defects that doctors had long watched. There are great surgeons and cardiac care in that area. That is another big plus in your favor if you have access to medical facilities in that area.

Welcome to the Forum and all best wishes,
 
Welcome Michelle!

Believe it or not, there IS some GOOD NEWS here.

First, your condition was found in time to allow you to get FIXED before more severe damage was done, and

Second, First Time Surgeries in patients under age 60 who are otherwise healthy are 98% SUCCESSFUL.

To continue your education in Valve Disease, and particularly your BAV, look at the top of the page, on the blue line, Click on SEARCH, and type in BAV. Also do a Search for CHD (Congenital Heart Disease).

It would be helpful to find a Cardiologist who is experienced in these two areas and especially helpful to find a SURGEON who is experienced in those areas. You may have better success finding such Physicians at larger Heart Hospitals that do surgery on a large scale. Typically, the more they do, the better they are, and that also translates down to the Nursing care in the ICU and on the Recovery Floor.

It's not too early to start Surgeon Shopping. Most of us find the Surgeons have a better feel for the timing of your surgery. Being symptomatic leads me to think "Sooner is Better" to avoid reaching the point where PERMANENT DAMAGE is done to your Heart Muscles and Walls. Enlargement of the Heart is a common 'trigger' for an invitation to surgery.

We have MANY BAV and CHD patients amongst us so I'm sure you will find lots of kindred souls with considerable knowledge and experience to share.

For today, try to pace yourself, enjoy the holidays with your family, and then get serious about getting fixed.

Best Wishes,

'AL Capshaw' (in the waiting room for OHS #3 from radiation damage to my heart)
 
Thanks to everyone. My cardiologist and surgeon are based at Inova Fairfax Hospital which is a very large hospital. The surgeon is the one requesting additional testing including a cardio-cath (ugh). It's great to know that so many people know what I am going through. The loved ones around me (family and friends) don't know how to react and each have their own opinions, as limited as they are.
I am glad that you are here for support and resource.
 
Hi Michelle,

Welcome to a wealth of info!

I know exactly how you feel about the disappointment of your good health going away. Almost four years ago I felt the same when I was dx'd with breast cancer, that was a huge shock and I was so upset that my health would never be the same. I've known for 12 years that someday I would need heart surgery, but again I was shocked this fall when it was NOW and not in my 60's.

Although you are younger than me :D we have some things in common. I had a bicuspid valve (surgery done 11/29) and was floored when they told me after surgery that it was pretty well closed up. I'm glad I had surgery when I did!

I also have 16 year old and 13 year old boys and work in a school...not a teacher though!

Don't stress too much today and tomorrow, enjoy your holiday and do your research after. PM me if you want to talk!

Merry Christmas!
 
Michelle,

I UNDERSTAND how you feel about getting a cardiac-catheterization.

Before my first one, I was SCARED OUT OF MY MIND!
(I've lost count but it's in the teens)

I watched the video three times. When it was over, I had one of those "Is that all there is" kinds of reactions. It was NO BIG DEAL and I found that I actually ENJOYED watching the catheter being moved around my coronary arteries. YES, unless you are simply terrified, the cardiologist prefers that you be awake to follow some simple instructions at various times. I felt absolutely NO pain or discomfort. The Cardiologist will numb your groin with something similar to Novacaine etc used by dentists. You will have an IV and most likely be administered Demerol for 'discomfort' and Versed to relax you. They can quickly control your level of 'awareness' by increasing the dose of Versed, anywhere from "I don't care and I wanna watch" to "I don't want to remember ANYTHING".

Before the procedure, your groin will be shaved. In the Cath Lab, a towel will be folded over your 'privates' and a large sterile paper blanket with a circular hole will be placed over you. I always ask for a hand towel to be folded lengthwise and pulled under the small of my back and for a pillow to be placed under my knees. (My BACK was killing me during a longer procedure - angioplasty). The heated blanket is a Godsend in the cool cath lab!

The 'incident rate' for Cath's is extremely low, especially in hospitals where they do them in assembly line fashion. Practice makes Perfect!

Oh yes, (almost) EVERYONE has NO sensation of the catheter in their heart (only one VR.com member has reported being able to tell the cardio where the cath was).

It sounds like your Physicians are doing all the right things. Be sure to ask the surgeon(s) you see about their experience with BAV and CHD. There can be related issues that should be addressed / watched for 'while they are in there' and there can be 'tissue related issues with sewing in the valve that the surgeon needs to be aware of to prevent 'leakage' around the valve afterwards. (I learned all these things reading posts on VR.com).

'AL Capshaw'
 
Did any of you ever wake up, gasping for breath? That happened to me 2 nights ago. I had to get out of bed and move around to get my breath back. Is it significant, or just nerves?
so I seem a little obsessed about this? Maybe I am, or maybe I am just trying to learn as much as I can to understand what it is I am dealing with. Did you all go through this same feeling?
 
Hey, I have a 13 and a 16 year old too! :) I think we have a quorum!

I'm a computer engineer, I really feel for you being a teacher. Please try to pace yourself to the extent possible. Do some research on the various alternative ways that us females feel heart troubles. For me it is a tightness in my left shoulder blade and sometimes in my neck. I was expecting the standard 'chest pain' but we females don't always have the same symptoms as the guys do.

I don't know about you but I got real used to strange aches/pains after carrying two babies (9 and 10 lbs each) and running after them day in & day out. I trained myself to ignore myself and push as hard as I could to do and be everything I could. I didn't stop and listen to my own body. I didn't follow up with the cardiologist like I should have. I can't get sick, I'm the mom.

I'm scheduled for a cardiac cath on 1/8 after I check into Washington Hospital Center here in D.C. with surgery set for 1/9 (at 5am, geez that's early). I've never done the cath thing and I'm not looking forward to it. Thanks for the details, Al, those are the things nobody involved in the process ever tells you, that's why this board and the people on it are great.

Listen to Al, it's important to get your heart fixed before anything really bad happens. Let your loved ones go through their own adjustment, they need to adjust just like you do. Take care. Ruth
 
Yeah, gasping for breath at night, yes, about 3 or 4 nights ago. Startled me awake. I sat up & tried to relax. It can be a symptom of valve troubles. The Dr.'s say the nighttime gasping can be sleep apnea as well. I am sooo looking forward to having my surgery and being done with breathing troubles, I'm short of breath pretty often these days, especially when I don't get enough sleep or walk too many stairs.
 
Hi Michelle and welcome.

To answer your most immediate question, I woke up out of breath or breathing strangely several times before my surgery. At the time I didn't think it was related to anything, but now I think it was related to my heart getting more stressed.

I also sometimes had irregular heartbeats and chest pain before my operation. My cardiologist told me that my left ventrical (LV) measurements were close to where he would recommend surgery, but not quite there. But since I was symptomatic, he recommended surgery. It sounds like you may end up in the same boat. My cardiologist's philsophy was to operate sooner rather than later in younger people, since the surgery is very safe, and the sooner you have a normal-working valve, the better for the rest of your heart.

The worst part of the cath for me was the anxiety of anticipation. In hindsight, it was a little unpleasant (again mostly due to anxiety) but really not that bad.

Good luck as you go forward. The people on this site will give you lots of support.

-Alon
 
Michelle,

I found it useful to sleep propped up with several pillows in my pre-surgery days. That seemed to help.

Inova Fairfax's heart unit is top-rate! I have only good things to say about my experience there, starting of course with my surgeon (Dr. Alan Speir), and then also the nurses and the whole team.
 
Michelle,

Welcome to VR.COM! Sorry you're here but glad you found us!

This is a surreal time (at least it was for me). I hadn't been to a doctor in 21 years (since I was 16). Since I was nearing forty and my dad just had double bypass, I decided to go in for general checkup. My GP heard a murmur and said, "Well lots of people have murmurs and it is usually nothing, but just to be sure, let's get you to a cardio". Sonogram diagnosed mild/moderate regurg from congenital BAV. Cardio said probably years for surgery but need to check it regularly. Fast forward 18 months (my next doctor visit after my GP sent a hand written letter asking me to come back in and get it checked) with sonogram cardio says surgery within 3 months.

I FREAKED! I think all I said was "Damn". Anyway 2nd and 3rd opinions postponed surgery until June cardio visit this year said "Your left ventricle is starting to enlarge to the point we need to do this sometime this fall.

I FREAKED AGAIN! This can't be happening to ME!!! I'M HEALTHY. I don't smoke (never have), drink one glass of red wine each night (never drank to excess even in college), I eat decent, I exercise some (ok not as much as I should and I have a few extra pounds but not fate. I have never done any illegal drug. I've lived my life Clean!!! I CAN"T HAVE HEART PROBLEMS at 41 years old!!!!!

This isn't fair. What is God thinking?? I mean c'mon .... This is ME!

So then my analytical nature kicked back in and I started to research. I learned that the most important decision I could make in this process is who my surgeon is. I want the best. I want a "Type A", perfectionist that is never satisfied. I want someone driven to be perfect. I don't care if he is a nice guy - I'm not going drinking with him. He is going to cut open my chest and replace my heart valve. I want a perfectionist with the PROVEN skill to back it up. So my message to you is find the most elite surgeon that you can get to for your surgery. Research him (don't just take your cardio's suggestion carte blanche). Search him online, ask opinions here and in your community. Talk to him. Ask him his numbers - he'll tell you.

So I did learn during this process that I have PSM ("Pre-Surgery Moodiness"). I would get sad, mad, scared, irritated, peaceful, depressed... all within the course of a day sometimes. In talking with others I learned that these feelings are all normal. Realize you are FREAKING OUT and/or have PSM. Your stress/emotionalism may amplify symptoms in the time leading up to your surgery. Some nights I found it hard to sleep. I felt every heartbeat. I felt "twinges" in my chest. Was that pain or stress or imagination?

I learned to talk to myself and realize I was freaking out. I learned to remind myself that I had PSM and to monitor my responses to my own thoughts, to my loved ones, to my friends, to normal frustrations in life. Once in a while I just wanted to yell at my employees "All of you get over your petty little life dramas because I have a heart problem and I'll trade your broken car for a damaged heart!" (I never did that of course...)

Realize that your husband is probably REALLY FREAKING OUT at this situation. Yet he doesn't want to show you that he is FREAKING OUT. He probably wants to appear strong and confident that this is going to work out fine. He doesn't want to show you his fear because that might cause you doubt or fear or sadness that he is afraid. He wants to believe that this is the imminently "fixable" problem that the docs say it is - but he doesn't have enough knowledge to know that to be true. So, he is scared spitless but doesn't want you to see that. So - he stays busy, doesn't want to let his emotions break through.

How do you want him to react? I couldn't answer that question for myself. Did I want my wife to be sad? Did I want her to be confident? Did I want her to listen to all the details of my 100's of hours of research? Did I want her to want just the cliff notes version on my research? Did I want her confident? Did I want her peaceful?

The answer to all those questions was "Yes". I wanted all of them at different times and sometimes at the same time. How could I tell her what I wanted her to feel/say/think? Especially when I didn't always know myself.

Spend some time here. Talk with others that have been through this and with others who are waiting. Look at the valve-selection forum and check out the sticky thread regarding valve type selection.

Know that elite surgeons at top facilities have tremendous success. Know that this is a mechanical problem that can only be fixed by a surgeon. Know that the timing is critical (when you start experiencing symptoms or you see a trend of enlargement in heart dimensions). Fixing the problem at this point prevents permanent, irreversible damage to the heart which can occur by waiting too long and letting the symptoms/dimensions get worse.

Take the time to learn as much as you need to know to satisfy your own quest for knowledge/peace. Make your 1st decision (surgeon) and then your second (valve type) based on your learning and surgeon recommendations.

Good luck,

Have a Merry Christmas,

David
 
Welcome, Michelle. Sorry to hear the diagnosis but you've come to the right place for information and support.

Like you, I thought I was perfectly healthy, but I didn't even have any symptoms I was aware of, when my GP noticed a loud murmur during my annual check-up. Within 24 months I had OHS for a mitral valve repair. It was scary but in reality it was not nearly as bad as I expected. I am very grateful they caught it in time before any permanent damage was done.

The cath sounds worse than it is. I didn't feel any discomfort during the procedure at all. I did get a large bruise in the insertion area on my leg so I was limping a bit for a few weeks. Otherwise, it wasn't too bad at all. One thing I learned during all of this is that OHS, and procedures like the cath, are very routine these days. I was really impressed with all the medical staff who looked after me.

Best wishes and good luck.
 
michellep said:
Did any of you ever wake up, gasping for breath? That happened to me 2 nights ago. I had to get out of bed and move around to get my breath back. Is it significant, or just nerves?
so I seem a little obsessed about this?

By all means, tell ALL of your Doctors about this "gasping for breath" incident waking you up at night. It needs to be checked out as it can be a significant symptom of Valve Disease.

To answer your question about waiting,

W A I T I N G is ranked as the #1 WORST PART of having Valve Replacement Surgery amongst our members.

With your symptoms, I'm inclined to recommend finding a Surgeon you are comfortable with ASAP and see how soon he recommends "getting you FIXED". Waiting for your symptoms to worsen only guarantees more damage to your heart.

'AL Capshaw'
 
Wow! Thank you to everyone who has responded. I have an appointment on 12/26 and now I know that I need to stand up for myself. I am not over reacting.
I have been referred to Dr. Speir as well, so hopefully I will have as positive an outcome as you did. :eek:
I think the big hurtles to face now are helping my teens through this and choosing the valve.
I hope everyone has a joyful Christmas and relaxing holidays!
 
See the Valve Selection Forum for LOTS of information on Tissue vs. Mechanical Valves.

I've been VERY impressed with the third generation On-X Mechanical Valve which was introduced to the rest of the world in 1996 (50K implanted now) and USA in 2001 (5K implanted now). See www.onxvalves.com for considerable information.

Contact their Manager of Education and Promotion, Catheran Burnett RN BSN (former heart surgery nurse at Baylor) at 888 339 8000 x265. I believe she is off until after New Years, then will be going to Hong Kong in early January so call early. She sent me a VERY informative package of information on valves in general and theirs in particular, including charts showing their Morbid Incident rates to be 1/3 to 1/2 of the rates for other mechanical valves which certainly got my attention.

Several of our members have On-X valves. You can find considerable discussion of these valves by doing a VR.com SEARCH for On-X.

There are several improved versions of Tissue Valves available now as well (Bovine Pericardial Valve, Procine Stentless, etc) but remember that ALL Tissue Valves WILL wear out eventually (hopefully 10 to 20 years for newer ones), and wear out more rapidly in younger patients (under age 60).

Mechanical Valves require Life-Time Anticoagulation which is not as bad as many doctors and patients fear. It just requires education. See the Anti-Coagulation Forum and AL Lodwick's very informitive website www.warfarinfo.com AL Lodwick monitors our A-C Forum and answers questions either through the forum, through VR.com Private Mail, or e-mail. He is a certified Anti-Coagulation Provider and A-C Clinic Director in Pueblo, CO and a valueable resourse to VR.com

'AL Capshaw'
 

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