New & Terrified!

[KristiinSD]

I have had mvr since I was pregnant with my son 8 years ago. I had mvp, but I think fen-phen excerbated my problem. At any rate, in the last 6 months I have noticed that I am tired all the time, have shortness of breath when I move my body and sweat profusely. After a visit to my cardiologist it seems that I have severe regurg and my left ventricle is enlarged to the point where surgery is needed. I have hundreds of questions, but mostly I want to know am I going to die?

I can't seem to find any good stats on the web and I am a single parent of a young child. His father left me about 15 months ago and I have been struggling with depression and fatigue ever since then...I thought it was my reaction to the separation, but now I wonder if it was the beginning of my mitral valve going south...I also thought that since I am morbidly obese and out of shape that was the reason I was so short of breath and sweating like a pig with minimal exertion. I am so afraid...Gastric bypass for weight loss is definately not an option anymore.

Since the cardio appointment, I feel like my heart aches all the time...I don't know if its actually worse or if I am just freaked out. I spent 5 hours in the ER Thursday because of chest pain and shortness of breath.

Kristi in San Diego

 

[geebee]

Kristi,

A few things come to mind as I read your post. First off, no one knows when they are going to die. That being said, we can be as proactive and involved in our methods to try and stick around a bit longer.

Depression is not at all uncommon when faced with heart surgery. Compounded with the weight issue, being a single mom, still suffering from a break-up and you have a recipe for depression that may be profound indeed.

You need to follow the recommendations of your cardio. Has he suggested seeing a surgeon? Does he (or your GP) know about the depression? If not, they should. You will need some assistance in overcoming the things you are facing. We can help some here but we are limited. Medical help is something you need to do for yourself and your son.

The fatigue is most likely due to your heart condition. I am sure the depression might contribute to it but probably only a little. Medication might help but, ulitmately, you will have to come to grips with the fact that surgery will be in your future.

Take care and stay in touch.

 

[ALCapshaw2]

Welcome to our world Kristi !

"Freaking out" after being told you need Open Heart Surgery (OHS) to replace your valve is a pretty "normal" response.

That said, be THANKFUL that you live in a time and age when such problems can be diagnosed and REPAIRED.

YES, enlargement is one of the 'triggers' that says "it is time to have surgery to FIX your problem" and yes, fen-phen *can* damage heart valves.

The GOOD NEWS is that first time surgeries in patients under age 60 have a VERY HIGH SUCCESS RATE (98-99%). Valve problems are plumbing problems. Call the plumber (surgeon) and get it fixed. We've ALL "Been There, Done That" and are here to talk about it!

Look through some of the FORUMS of interest such as Pre-surgery, Post-surgery, Valve Selection, etc. and you will have a much better 'feel' for how we deal with the problem and move on with our lives. Feel free to ask any questions as they arise. We'll be here for support and information.

'AL Capshaw'

 

[Big-Chuck]

surgery

surgery

hi there Kristi, my name is Big-Chuck and on June 6 th I had my Mitral Valve repaired at the La Jolla VA Hospital when going in there was only a 50/50 chance it could be repaired. So yes it can be done and should be as soon as possible. I also am 56 and survived surgery. Did I have doubts before surgery? You bet ya I did. To help myself I gathered as much info as I could and surrounded myself with my friends from all over the world who prayed for me as I will be doing for you. Being informed and asking questions is the best thing you can do.

 

[Karlynn]

Welcome Kristi!
You have a lot on your plate. I know that you're scared about the surgery. We all were. The good news is, you will feel much better once it's been done and you've recovered. The road is not an easy one, but from what you report, it's an easier one that the road you've already been on.

Our little site here, and the members on it, will be such a help to you now. Don't hesitate to ask any questions or voice any concerns.

I had my valve replaced with a St. Jude mechanical when my children were in Kindergarten and 2nd grade. They are now both in college and life has been great! The old saying "If you have your health, you have everything." is a good one. Most of the other "stuff" can be overcome.

 

[Ross]

Boy oh boy do I remember the question and feeling "Am I gonna die?"

98% chance that you won't! Those a pretty favorable odds. The road is not an easy one and it may be a little tougher for you with the weight issue, but it certainly can be done and overcome. In fact, you'll lose some weight during the process too, which may be a good thing.

We were all terrified, even those of us that have done this more then once now. You wouldn't be human if you weren't and I don't care who it is, if they say they aren't afraid, they are lying!

Read as much as you can tolerate and absorb all the information you can on this site. Ask questions, vent frustrations, whatever it takes, but rest knowing that many have gone before you and are here today because they did. Without the surgery, the answer to the big question is "Yes, you will if your don't do something about it".

 

[Nancy]

There is an anxiety component to mitral valve problems. It is a PHYSICAL problem and is caused by the mitral valve deterioration.

In addition to that, many people find that heart surgery itself causes depression, and it is a medical fact mentioned in many articles.

That combined with normal fear of heart problems can be very overwhelming.

If you feel that depression is taking over your life and you want it to be better, please see your doctor and get on some anti-depressents asap. They help tremendously.

Shortness of breath and excessive sweating are also symptoms of heart problems. My husband has had those many times prior to valve surgery. He used to wake up drenched in sweat.

You are in very difficult circumstances right now with all of your responsibilities and medical problems as well. Stay with us here and we will help you through the process.

 

[hensylee]

We had another member who had damage because of fen-phen - some years ago. I don't remember who it was, tho. Anyone remember? Might be some info there.

I am sorry to hear of your distress. As others have said, depression and heart issues go hand in hand, often. It's not unusual. Have you discussed this with your cardio?

Stay with us for information and support. It's important for you to know and read as much as possible and you can find so much here. Blessins....

 

[twinmaker]

Hi Kristi, First thing to remember is that it is NORMAL to be scared. That being said, you've done the next right thing by just getting on-line to find information. I can remember my cardiologist telling me that I needed OHS back in 1974... I rushed home and drug out all my nursing books from college and started trying to read everything possible about mitral stenosis. Then it was off to the library. Those were the days before the internet! As far as your question about dying...that's normal too, but like everyone else said, you will come to accept the fact that you have to have something done so you can have a better quality of life and be here for your son. Having children can be a great motivator. I was anxious to have my first OHS done so I could have children. Then we had a daughter and twin sons and when the twins were 3 years old and our daughter was 5, I went in to have my second OHS. I was motivated at that time to feel better and be able to keep up with the kids. After dealing with heart issues since 1974, I can testify that the advancements in this area are tremendous. I feel blessed that we have come so far in this field. This site is wonderful! I only found it last week and in this short time I have found some answers to some questions and most of all SUPPORT. There's nothing quite like having people who are in the same boat with you. You will be in my thoughts and prayers as you move forward to feeling better! Linda

 

[Debrinha GT]

Overseas member

Overseas member

Hi Kristin, I'm Débora from Brazil, and I'll be having surgery for the fourth time in a couple of years. I've already had three mitral valve replacements(all with tissue) and I can tell you one thing:I don't feel half as scared as I did before finding and joining this site over a year ago. I was only ten when I had my first replacement as a result of rheumatic fever, then again at fifteen and the last one was nearly ten years ago at the age of thirty. I've been gathering so much information that sometimes I feel as if I was actually talking about someone else's problem, and not my own. Strange feeling!! I still feel scared when I stop to think of it, but I do my best to lead a normal life for as long as I can, and I suppose I'll deal with the surgery itself when the time comes. You said you're alone in this, but do any of your family members live near you? I'm sorounded by them and I do get the odd bit of help here and there, but hardly any emotional support. They get this idea that once you've had surgery you have to feel as good as new, which's true up to a certain extent, but specially after having had my third and then a child just over a year later, my energy level has never been the same again. Now that I'm getting ready for another one, they act as if nothing was happening and I don't even remember when one of them asked how I was feeling, it's been so long. To them seeing me go through this has become something so normal! Just a fact of life, if you get what I mean, no big deal!! . Just one of those things, as long as you're not talking about it, the problem doesn't exist. That's my mum's way of facing it, I suppose!! My husband's quite caring, but the biggest support I get comes from this wonderful site and its members. We also discuss many other things on the SMALL TALK section which can be very helpfull and relaxing at the same time. I've had a lot of help here with a few problem that had nothing to do with my heart issues, so if you feel like talking about anything at all, feel free and we'll try and help you as much as we can. When we get to the point where surgery's required, it's not an option, and each one of us has his own ways of coming to terms with it. I'm sure you'll find yours and when we come to think of it, being here on VR is something everyone has agreed to be the best source of information and emotional support available. I hope you can also benefit from it! Hope to see you around.
Take care,
Débora

 

[KristiinSD]

Many thanks for the kind words and warm welcome.

Many thanks for the kind words and warm welcome.

I'm feeling a bit better, although at night I often cry. Its just all too much with the pending divorce and pending surgery...My plate is definately full. i spent 5 hours in the ER last Thursday and my cardiologist's nurse said that if they had any serious concerns they would have contacted my cardio. So i guess that's good news, kind of

I am taking an antidepressant and seeing a therapist 2 x a month, so I am getting some help with my depression.

The next move with my heart is the TEE which is scheduled for the 28th. My cardiologist is going on vacation Thursday for 2 weeks, so I have to wait for his return. Apparently, he doesn't think 2 weeks is too long to wait and I had a CT scan, chest x-ray, and some other tests in the ER which have ruled out anything immediately life-threatening, I guess.

Anybody think 2 weeks is two long to wait? Also, I am suprised that in 15 mos. I went from mild regurg to severe. Any thoughts?

Thanks,

Kristi

 

[Ross]

2 weels should be fine. Things will work out in the end. Just hang in there. I know it's tough and you do have some extra baggage not helping you any. Try to let it go and concentrate on YOUR well being.

 

[ALCapshaw2]

One of our members (Bob H?) coined a phrase that seems to apply to valve deterioration -

"The worse it gets, the faster it gets worse"

Makes sense since the narrower the valve opening becomes, the harder the heart has to work to pump out the blood.

Bottom Line: watch valve opening size AND chamber dimensions. When the aortic valve area is down to 0.8 cm sq OR the heart shows signs of enlargement, that is usually a sign that it's time to have surgery. I don't know if there is a Mitral Valve Area 'trigger' but I've been told if the Mitral Valve area gets down to 1.0 cm sq I would be "very symptomatic".

'AL'

 

[Georgia]

Hi, Kristi!

Ditto to all that everyone else has told you.

When you have the surgery, you'll be pleasantly surprised how much better you feel. Once you get through the immediate recovery period (3 or 4 months), you'll have much more energy that'll let you keep up with that little guy. And given your age, my guess is that you'll come through well.

This is major major surgery; but if you go to a surgeon and hospital that are experienced, the odds are GREATLY in your favor.

And the added benefit of feeling better and having much more energy is that you'll be able to get some of that weight off.

Hang in there, read a lot of posts (even if the additional knowledge sometimes makes you uncomfortable) and ask any questions you might have.

 

[Debrinha GT]

That's right Al!!

That's right Al!!

When I went to have a word with my surgeon last October, one of the questions I asked him was that, and he said that unless something else went wrong before then he would operate on me once my mitral valve opening got to 1.0cm2. Last time I did an echo back in March of this year, it was still 2.80cm2 so, according to him it should still take a couple of years to get to that. My cardio said that the decision to operate on a patient is also based on his heart history and health condition in general, and the exams are also very important to give them a good idea of the picture.
Débora

 

[CCRN]

Surgeon?

Surgeon?

I have had mvr since I was pregnant with my son 8 years ago. I had mvp, but I think fen-phen excerbated my problem. At any rate, in the last 6 months I have noticed that I am tired all the time, have shortness of breath when I move my body and sweat profusely. After a visit to my cardiologist it seems that I have severe regurg and my left ventricle is enlarged to the point where surgery is needed. I have hundreds of questions, but mostly I want to know am I going to die?

I can't seem to find any good stats on the web and I am a single parent of a young child. His father left me about 15 months ago and I have been struggling with depression and fatigue ever since then...I thought it was my reaction to the separation, but now I wonder if it was the beginning of my mitral valve going south...I also thought that since I am morbidly obese and out of shape that was the reason I was so short of breath and sweating like a pig with minimal exertion. I am so afraid...Gastric bypass for weight loss is definately not an option anymore.

Since the cardio appointment, I feel like my heart aches all the time...I don't know if its actually worse or if I am just freaked out. I spent 5 hours in the ER Thursday because of chest pain and shortness of breath.

Kristi in San Diego

Hi,

I recently went through a similar stressful situation like yours. I think you should insist on getting a surgical consult as soon as possible. Really push the issue. If your cardio says you need surgery ask him why he hasn't set you up with a consult already. A Surgeon will make you feel as if you have more of a handle on things. God bless you. I know where you're coming from and you are in my prayers for your comfort and release from anxiety. You may find this hard to believe, but the anxiety is far worse than any treatment regarding this.

 

[Barry]

What they said, and...

1. If valve replacement was as life-threatening as you fear, none of those folks would have been here to say it; and

2. Is it too late to get in on the class-action settlement for folks who were harmed by Phen-Phen?

 

[danielgilboa]

Yeah, realizing you REALY need MVR is a big hit over the head. We probably all panic, each in their own way, all stressed, I had much more arythmias which is not unusual. I think mentaly, the period up to surgery is much more difficult than after.

Your valve could have gone from mild to severe in even less tahn 15 months. Each if the 2 cuspids is supported by about 10 cords. In a regurgitating valve they are constantly under higher stress. At a point, some start giving in. Once one or two strech out or break the others are under more stress and they start giving in rapidly. Then the rim of the cuspid is no longer supported, it sort of shrivels up and so on. So once this process has begun you should get it repaired or replaced. It wont just go away.

before and after surgery you will need lots and lots of support. People here are realy good at that, but - they can not take care of your 6 yearold, we can not cook for you, we can not fix your pillows in bed 75 times each night (the nights are the worst...) and so on. For just a few days you will be focused only on yourself, you can not be responcible for your child. So what I would do now, is let the docs do their tests and plans, and go out seeking a support network. Close family? far family? friends? community? church? volunteer organizations close by? parents of kids in your boy's class? can you afford to hire long term assistance like an opere?

I found that support was one of the very important components of my success in surgery and recovery. I would not under estimate it. The people on this forum are very informative and supportive, so stick around in good times and bad.
Good luck with surgery, you are on your way to buy yourself a new life!

 

[doberman]

Hi Kristiin, You are going to be alright, at any rate you need to be there for your child, we all feel exactly what you are feeling (well I did any ways), although open heart surgery is serious, if you look after yourself before and after the operation you will be fine. Try and be positive (yeah it is hard!) and take your inspiration from all of us who not only survived but prospered from having surgery.
j