Hello

[swim mom]

Hello,
I am sort of new here. I have been reading posts but never posted myself. My story is not as dramatic as many. For many years doctors have asked me if I had a murmur but I always said no. Finally about two years ago when we lived in England a doctor heard it and I saw a cardiologist for the first time. At that time the cardiologist said I had trivial to mild mitral regurgitation, normal sized ventricles, basically normal except for the mitral valve and I shouldn't have any problems. I was refered to a cardiologist after we moved to Maryland last year and as she was walking with me to the waiting room she said the regurgitation was moderate to severe, she was going to schedule a couple of tests and she would see me again in 6 months! No opportunity for questions, nothing! After the tests I was told she would get the results to me after a few weeks I started e-mailing her. Never any response, never any response by phone or computer to my questions and in fact she always says "I gave you your test results". She did two echos at 6 mo and now I have a usless appointment every 6 months and an echo every 12 months. My echos have been essentially the same with moderate to severe regurgitation and slight dialation of the left ventricle. She seldom writes down any of my complaints or just says "it is to be expected". This week she said "Your valve will not be able to be repaired and you will need a mechanical valve so expect your condition to get much worse before anything is done." I wasn't complaining about anything major except that I am starting to get VERY tired after my morning walk. My new PCP says I need a second opinion but he has to request it as I am seen at a Military hospital. I have also had a problem with asking for a new Cardiologist partly because by total coincidence my cardiologist is good friends with my next door neighbor (we live 40 miles from the hospital). It would be a lot easier if I wasn't going to see her again anyway! It can't be easy... I am sorry if I rambled but in a nutshell that is my story.

 

[Lotti]

Hi back!!

Hi back!!

Hello from England!
Sorry to hear you haven't been getting very much support from your team.
Good decision to join here - I'm new too and everyone is really nice.
I have spent many years being very tired, and like you, the five minute appointment with a cardiologist and annual echos. But as soon as my sympoms started getting worse everyone sprang into action. Stress tests, 24 hour ecgs, angiogram and soon surgery. My regurgitation was moderate, with a bicuspid aortic valve, very heavily calcified and dilated ortic root.
I can only hope that like me, nothing was done for years because nothing needed to be done. It wasn't till I started fainting and getting very breathless that they considered me symptomatic.
Please take heart from the people on this site. I have, as they have all been there and DONE IT!
(sorry no pun intended)

 

[Curtsmum]

Welcome swim mom, your story sounds pretty drastic to me, so sorry to hear that your valve can't be repaired, i would be asking for a new cardioligist because she sounds pretty rude and insensaitve, think about yourself not your neighbour, you need the best possible care, take care of yourself and best of luck

 

[Nancy]

Get yourself a doctor you can have confidence in. It's obvious that you have many legitimate questions and this person is not willing to answer anything. Maybe she doesn't know, and is covering up. Not everyone graduated at the top of their class.

I wonder about a doctor like that. How in heaven do they expect to have any patients after a few years. Word gets around about their lousy attitude. Who cares if your neighbor is best friends with her? As the old saying goes, "keep her as a friend", but seek out someone else to take care of your medical problems.

I am sure you can find a way within your particular medical system to get the care that you deserve. But you'll have to be very proactive.

Good luck!

 

[Georgia]

Hi, Swim mom! Welcome to the site.

Ditto to all of the above.

Take it from all of us: at this point, your health should be your primary concern. You don't want to end up with an enlarged ventricle and congestive heart failure (that's my story), it makes everything much worse.

This is when you bite the bullet and request a new physician. If your pcp doesn't cooperate, get a new pcp. You have to become your own best and strongest advocate.

Go get 'em, girl. Your life literally depends on it.


btw - get copies of your tests etc. You should begin to maintain a file for your own information.

 

[susieq14]

Hello Swim Mom!
I'm so sorry that you are feeling so overwhelmed. It is not a wonder however, from the sound of your post your cardiologist needs to be fired! Please think about your health both the physical and the mental & emotional side of things. You need to have a doctor that listens to you and that you feel confident with. Don't worry if she is your neighbor's best friend - she sounds like the kind of person that wouldn't even notice if you changed doctors and who cares if she does. Your well-being is what is important.

I would also echo the recommendation to request in writing copies of all your echos and tests etc. You are entitiled to them.

Finally don't apologize for rambling or venting - I'm kind of new here myself but I think that is what this board is all about. (Actually we have a lot in common - w eboth have MVR and joined the board in March 05. when were you originally diagnosed?) Anyway there seem to be many caring souls here!

Take care of yourself!

 

[joanne6]

Welcome

Welcome

I am also from in Maryland-nice to see another Marylander joining in but sorry you need the site. I had Mitral valve prolapse most of my life. Was always told it was mild to moderate regurg. This past summer it changed on ECHO to severe and I was told I needed surgery before I got symptomatic. You sound like you are just about where I was in July. I saw a surgeon at the Univ of MD. and also changed cardiologists to one there who I had heard was very good (he is). I had my mitral valve repaired on 8/15. It sounds like you cardiologist has been waiting for something to go wrong. Current thinking is to get it fixed or replaced before things go wrong. I would suggest you see another doc-probably a surgeon at this point, to see if you are now a candidate for surgery.
Just a suggestion but it can't hurt to be safe.
Joanne

 

[gadgetman]

Swim Mom,

Sounds like your PCP can be your best advocate. As retired Military, I had to fight through the "red tape" of the military system to get where I needed to be. My condition went from bad to worse in less than a month. When my civilian Cardio STRONGLY recommended I go to UAB for the surgery I immediately contacted TRICARE to get referrals started. Talk about that BRICK WALL. I was told it would take 3 to 6 months to get all the referral papers done and if a "Military" Hospital was available that could "DO" the surgery I needed I would probably have to go there. It took a letter from my Cardio and intervention by my PCP stating the "condition my condition was in" to get things moving. I got tentative approval within 24 hours and TRICARE has not blinked (well, maybe a few irate phone calls were necessary--more than a few) about paying their share.

As most have already said and based on first hand (OR HEART) experience with the military system, you have to step up and FIGHT. Be warned that the "paper shifters" will try to start building those walls immediately.

Another thing, I suggest you now by-pass a Cardio and go directly to a Surgeon. As most here have found, Cardios want to take a "wait and see" where Surgeons want to get in there and fix things BEFORE they get worse. Walter Reed or Bethesta might be the best place to start. Both of those are top rated Military Hospitals for heart issues. Just don't accept NO or WE WILL SEE for an answer.

Please feel free to PM me if you need further personal guidance through the quicksand of the military system. It can be a learning experience.

Good Luck and,

May God Bless,

Danny

 

[hensylee]

Welcome to VR. You have found a good spot for any complaints you have and you can voice them all right here and receive much support. Ditto, too, of the above.

Sounds like you need a new cardio - sticky about your neighbor thing, tho. As was said, however, your life may depend upon you finding out more. I wish you courage to switch.

 

[Marguerite53]

Hello!

Hello!

Hi Swim Mom. Glad you decided to let us in on your predicament. Please, please go find yourself another doctor. Remember, YOU are the most important thing here. Would you stand by for a second with a situation like that regarding your children?? Never!! Your whole family needs you!! You owe it to them AND yourself. You must take some action. You cannot let a distant friendship enter into something so incredibly important. A good doctor would feel that you are entitled to a second opinion. Do not be bullied!

I have a top notch cardio. She frustrates the heck out of me with short answers and "less is more" informational exchanges. But, I've learned her style and have so much wonderful information from this site to confront her with that it's working well. Fortunatley she did graduate at the top of her class, ( Nancy) and at Stanford, so I'm keeping her. She was my second opinion. My first cardio (once the stenosis was identified as moderate) was very nice, but there was a language and age barrier which I could not bridge successfully, so I found my current cardio. When I spoke to my insurance about getting a second opinion they said I could get as many opinions as I wanted!! I'm sure if your PCP is willing to get you another opinion you should do it. PLEASE.

And please keep us posted as now you are a part of this community and we need to know that you are feeling good about your level of care.

(from another Marylander -- I grew up in Silver Spring. Moved to Oregon in 1974)

Marguerite

 

[Mary]

Swim Mom,
You have your answer with Gadgetman's post. He's been there, done that!

Don't forget, your PCP said you needed a second opinion. Please get one, and then decide what to do. If the second cardiologist indicates you will need surgery in the near future, then try to get an appointment with a surgeon.

Good luck,
Mary

 

[geebee]

Swim Mom,

Welcome. I don't have much to add but I will echo the others just for emphasis. Fire your cardiologist and, if your neighbor objects, too bad. Your quality of life has to be your primary focus.

Your cardio sounds like one of those arogant, never been sick doctors who got an A+ in the "how to be removed from emotion" class in medical school. There is absolutely no need for that kind of doctor in the world today. Find one (perhaps with your PCP's guidance) that is willing to talk to you and do not stop until you find one. THEY DO EXIST!!

Many MVRs have been done on "moderate to severe" classifications. If you wait until you are "severe" there can be permanent damage done to your heart in the interim. Since you are symptomatic, the time for action is now.

Best of luck.

 

[BDMc]

Welcome Aboard!

Welcome Aboard!

Your post is a good one! Get the second opinion! I'd say get another cardiologist anyway. Who wants someone with such a lack of sensitivity dealing with such a sensitive issue? My first cardiologist had no bedside manner, and I was happy when he left town. He was supposed to be a real "Talent", and apparently knew what he was doing. Ironically my surgeon Wilford Neptune, is a woderful easy to talk to person who welcomed questions. Best of luck, Brian

 

[ALCapshaw2]

Welcome Swim Mom,

As you have read, the 'traditional' approach for Cardiologists is to "Wait and See" what happens. As more and more physicians are beginning to recognize, this merely allows the heart to deteriorate which can result in a poorer surgical outcome.

SURGEONS like to operate BEFORE PERMANENT DAMAGE is done to the Heart Muscles and Walls. It sounds like your PCP is willing to advocate for you so I suggest he refer you to a SURGEON and let the surgeon decide on the best time to repair your heart.

Johns Hopkins is one of the BEST Heart Hospitals in the country if you can get approval to go there.

It's time to 'get the ball rolling' and get some better answers to your very legitimate questions. While you are waiting, ask your cardiologists office for a release to get copies of ALL of your Test Results, especially the Echo's.

'AL Capshaw'

 

[Marty]

See a good surgeon soon!

See a good surgeon soon!

Welcome Swim Mom,

As you have read, the 'traditional' approach for Cardiologists is to "Wait and See" what happens. As more and more physicians are beginning to recognize, this merely allows the heart to deteriorate which can result in a poorer surgical outcome.

SURGEONS like to operate BEFORE PERMANENT DAMAGE is done to the Heart Muscles and Walls. It sounds like your PCP is willing to advocate for you so I suggest he refer you to a SURGEON and let the surgeon decide on the best time to repair your heart.

Johns Hopkins is one of the BEST Heart Hospitals in the country if you can get approval to go there.

It's time to 'get the ball rolling' and get some better answers to your very legitimate questions. While you are waiting, ask your cardiologists office for a release to get copies of ALL of your Test Results, especially the Echo's.

'AL Capshaw'

As usual Al is right on the mark. I too had MVP for 40-50 years. Then I went into severe regurg. My cardiologist was not too excited about it. He said I would go down slow and maybe last another ten years. However I was feeling bad ;chronic fatigue, short of breath climbing stairs, waking up at night gasping, etc.I saw a surgeon on my own. He reviewed my records, listened to my heart, and said immediate surgery was indicated. Best advice I ever had.Now at age 79 I can do everything. I'm back at work. I probably waited a little too long. My valve was so beat up that a repair was not possible. However my mechanical St.Jude is performing perfectly after 7 years and should work till its time to check out. Coumadin has been only a mild annoyance. I self test and self dose and would recommend this for almost all patients.

 

[swim mom]

Thank You

Thank You

Thank you to all of you who responded. I appreciate all of your support and advice. I have been frustrated for awhile and took the first step by changing my PCP. I think he will become my best advocate. All of your responses have helped me realize I really do need a second opinion. Sometimes I doubt my own decisions.

Gadgetman, Thank You for your advice on tricare... we love that we have insurace but we hate the headaches it involves. I currently go to Bethesda and try to stay as far away from Walter Reed as possible!

Marguerite53, I actually claim to be an Oregonian. I was born and raised in The Dalles but married a Navy man and we haven't lived closer than Seattle since!

 

[aussigal]

Hi and welcome back .

I am fairly new here myself too...
and these lovely caring people urged me and gave me the strength and courage to seek out a second opinion .

I am very grateful to have had the guts to do it..I didnt want to offend my original "nice cardio" but it was MY life on the line not his and I wanted more info than he was willing to give me. I switched and now have all the info I ever wanted . The 1st guy didnt even think my kids needed screening for this and yet 2 of them have it . so go for it...

A said before Gadget-man has been there and done that thru thesame system you will be dealing with ...thats the beauty of this place someonelse has done it before you and survived to tell the tale...makes it so much easier...