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K

Kerriberri

I wanna start off by saying God Bless to each and everyone of you. This is an amazing and very supportive group here. I have been searching all over for a site like this one. I found out over a year ago that I have MVP with regurgitation, and the thought of being 29 and having heart problems left me feeling sorry for myself, Till i realized i wasn't the only one going through it. No one around me knew what i was going through, or how i felt from day to day. I have been in and out of this site for a while now, it has helped me in so many ways, I have been trying to decide what type of valve i want, and reading alot of your comments have really helped me decide. I have no set date for mine, but i wanna be prepared when the time comes. I do have one question. I'm not looking forward to having the operation. But i wanna do it when the time is right. So my question is this, Is it better to have it done early before you or it gets any worse, or is it better to wait till it gets worse and have it fixed? My doctor, husband and myself have gone in circles on this one, I have 2 young kids and I haven't been able to run and play with them like i used to do, There are so many thing's i have had to learn to say no to b/c i can't do it anymore. This has been a life style change for me. In one way I wanna go ahead and get it done so I can get on with my life and family, on the other hand I don't wanna go through it till i really really have to. Again i wanna thank you all for making this such a great site.
 
Hi Kerri

Welcome to the family. There is a wealth of information here for you. Just ask away.

In answer to your question about proceeding with the surgery. I was in almost the exact same position as yourself. 29 with a baby, deciding when would be a good time. Based my decision on heart enlargement. My mitral valve was regurgitation to at 4+, yet.....I was virtually asymptotic. We opted to have the surgery.

If my heart was compensating and there was no enlargement......, and I could handle the symptoms....would have waited. It a very personal decision. As is the type of valve you chose to fit your lifestyle.

I went with the mechanical for longevity. At my age it should last 25-30 years. Vrs. a pigs valve at 10 years or less. The mechanicals do require blood thinning medication that entails frequent laboratory testing to make sure you are within your range. It is really not a big deal. Home testing makes it a breeze. I am happy with my decision and would do the same give the opportunity.

Have you decided on a valve?
Wishing you all the best.
 
Thank you Gina, I have decided to go with a mechanical valve. And tho i'm not looking forward to it I am leaning more to having it done now. Not ever going through this before it helps in making up my mind hearing from others that have been through it already. Best wishes to you and your family Gina.
 
Hi Kerri-

Welcome to this fantastic website. As you know from previous silent visits, there's information galore and just about any type of useful suggestion. We're a really nice supportive group and will be very pleased to guide you through this difficult period. The best part is that everyone here understands the problem very well.

You're young and relatively healthy so it will help you enormously in your recovery. Going with a mechanical is a good thing. My husband has had three valve surgeries, and it gets harder and harder with each one because of scar tissue and adhesions. He's been on Coumadin for 25 years so considers it just another part of the day.

This surgery is a real lifesaver and will give you back your life and health so you can enjoy your little ones.

Best wishes to you. Hope to see you here often.
 
Hi Kerri,
Welcome to the family!

About when to have the surgery.... I would follow your cardio's advice on this one... he is the one with the degree, etc. Waiting is fine as long as you keep up your appts. with your cardio. I didn't see mine for four years.... my heart didn't bother me and I was extremely busy with work/family/life. BAD IDEA!!! My conditioned worsened quickly and now I have more damage to my heart.

Take care,
Zazzy
 
I'm a little confused by your posting. Are you not running and playing with your kids because you are afraid to or does it cause discomfort to do it? If it's discomfort, then you have symptoms of valve failure. I was monitored for 17 years before having my aortic valve replaced with a St. Jude mechanical valve. I had no symptoms but the test taken 2 1/2 years ago showed that the heart was no longer compensating. My doctors recommended replacement at that time to avoid heart damage. They told me that when the heart begins to decompensate, it can go very quickly. I can't tell you when the time is right for you but if you have symptoms or your numbers indicated a failure to compensate, it might be the right time. You don't want to do it prematurely nor do you want to wait until damage is done to the heart. Good luck with your decision.
 
I wanna thank you all for the warm welcome!!

KIRSONRON I wanna run and play with my kids. I love to walk but it's gotten to the point that i can't walk and talk at the same time. I get winded so easy. I have a hard time breathing just walking up a flight of stairs. I've not seen my cardio in over 5 months. My PC provider thinks she should be the one treating me for this, so I don't get to see the cardio often. She keeps switching my meds thinking that that's what's causing my problems. It may be the meds, I don't know. Doctors only tell you what they want you to know, not everything that you need to know. I thank you all for your help and reply's. God Bless!!
 
KB-

Before my surgery my major symptom was fatigue. While I don't have any kids I always enjoyed playing with our dog. I couldn't keep up any longer. Carrying a full basket of laundry from the basement upstairs made me more winded than I wanted to admit. I gave up bicycle riding because I got too tired and couldn't ride up the hill on our street.
I think it's better to get it done sooner rather than later. I think if I had tried to wait another year i would have been in really bad shape. I want to echo what KIRSONRON said about decompensation. I was fatigued, but no one knew how bad my valve was until they took it out during surgery. My valve was very bad and the surgeon was surprised I felt as good as I did. So, the valves and heart can go bad very quickly.
If you are tired and out of breath going upstairs you really need to go to the cardio. Tell your PCP you are tired of messing around. You have young kids to think about and want to get back to being the super-cool mom they deserve. My brother, who is a physican, told me the best advice..."The doctors work for you, you don't work for them!" Stand up and tell the PCP what you want. Personally, it sound to me like your PCP is just fooling around and has no clue. You need a specialist!

I know you will make the right choice.

Are you planning on more kids? That is something to consider when choosing a vavle. Sometimes the medicines associated with mechanical valves can mean pregnancy is out.
Good luck and keep us posted!
 
Hi Kerri-

I want to echo what Mara said about your PCP. Please put your foot down and make an issue of seeing a cardiologist, you really need to do that. The symptoms you are describing need to be seen and evaluated by a cardiologist, especially since what your PCP is doing doesn't seem to be helping. Heart problems are nothing to fool around with. This is your life.

Take care and be well.
 
Hello KerriBerri,

The symptoms you describe are serious and need PROMPT attention. I would insist on at least an ECHOgram ASAP, preferably a TransEsophagael Echo (TEE) which gives higher resolution pictures.

They may also want to do a heart catheterization, which sounds pretty scary the first time, but is NO BIG DEAL (I've have several). Go for it ! These tests will tell the Doctors exactly what is going on with your heart. IMHO, your PCP is stabbing in the dark and endangering your life. Can you contact your cardiologist directly? That's what I would do. With my history, my PCP tells me to just set up my own appointments with the specialists whenever I feel it is needed.

'AL'
 
Welcome to the family and sorry I'm late on this thread Kerriberri

AL just wrapped the whole thing up in a nutshell.

Don't let the PCP make these decisions.

I think you can see what we are all saying and I think you know it too, in the bottom of your heart. Get a new doctor if need be, but get to a Cardiologist soon.
 
Your letter scared me. You haven't seen a cardiologist in 5 months? Your regular doctor is making medication changes - based on what information? I don't want to alarm you but I would run, not walk to a specialist - even if you have to lay out the money. You can fight with the insurance company later. I had no symptoms before my surgery. After the valve was removed, my cardiologist told me that had I waited one more year, my heart would be so severely damaged that there would be nothing they could do. Please act now!
 
Now that everyone else has been forceful, in my first post I was trying not to be alarmist...

Kerri you describe all the symptoms my cadio said needed to be present to warrant surgery. Get to the cardiologist, girl.

I am with Al, run to the nearest cardiologist and get checked out. I think your PCP is endangering your life.
you don't want your kids to be there without you and having only the money from the medical malpractice suit, you want to be there with them for all the good times to come. (sorry that's my attorney speech).

Nancy is right. THIS IS YOUR LIFE!
 
GET THEE TO YOUR CARDIO!

GET THEE TO YOUR CARDIO!

No, no, no...you must see your cardio. My PCP kept doctoring me for my asthma until I demanded to see a cardio because I thought it was my valve giving out...it was and I am very lucky not to have had permanent damage. Do not delay. For most of us the surgery is not near as bad as we had feared and the benefits are like being given a new life. I opted for a homograft valve and am still glad I did. If and when I need a second surgery, I'll deal with that then...I think new developments will make it even easier than the first and in the meantime...no blood thinners. It is a personal choice though. Study up and talk to your doctors and make your own decisions. Good luck and God bless.
 
Kerriberri

Kerriberri

Welcome to the site. We are pros as you can see. I will relate my story as short as I can. I was born with a congental heart defect, a heart murmur. Had first surgery eight years old, repair job on the aortic valve. Years later, at age 36, had sortic valve replacement and am doing very well. I am walking everyday and feel better than I did this time last year. The younger you are, the better, but everyone will agree it matter not but the benefits are great at any age. I have a St. Jude's valve because I am single and no children. If you plan to have children, get the other valves offered. I take coumadin everyday. It can cause birth defects, so I made the hard choice. But you are young and may want children. I am doing better everyday now that the weather is better for walking. You get all the information you can get and ask all the questions to make the choice yours. You take are and talke later.

Caroline
Aortic valve replacement
09-13-01
St judes valve
 
Again thank you all!! I have talked to my cardio, and i am seeing my doc on the 20th. I will let you all know how that goes. This site is great, but the people here make it awesome. God Bless you all!!
 
I just want to reinforce all the good advice about getting to see your cardiologist asap. I almost waited too long and as a result have have some minor enlargement problems that I may have to deal with for several years.
My cardiologist ususally recommends AVR within six months of the onset of symptoms in order to prevent any permanent damage to the heart.
Thinking back, I had been noticing (and ignoring) my symptoms for over nine months.
At first I attributed my fatigue and shortness of breath to overwork and travel, but finally realiszed that something else was up. Fortunately my PCP sent me straight to the cardiologist.
I was really lucky as they found my aortic valve was in terrible shape and my symptoms were not indicative how bad of shape I was really in.
Seeing a cardiologist is where you need to be!
Good luck,
mark
 
If I had not changed insurance plans and PCP's. I would'nt even know how bad my regurg is. My last PCP, despite all of my complaints about breathlessness and fatigue, simply dismissed these symptoms. She was one of those that don't test for anything unless your in the hospital types.

Immediately, when I saw my new PCP, the wheels started spinning and I'm up for Aortic Valve Replacement next month!
What a difference a Doctor makes!!!
 
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