11 months post op, And questions

[SarahL]

Hello everyone.
I had my valve replacement 11months ago, and it has been a struggle for me. Lots of ups and downs. I had to get a copy of my medical records from my cardiologist, and i sat down and read the whole record today. I read the part about my surgery and everything they did to me. At the end of it, it said that they found out that i had mitral valve prolapse that was not found before the surgery. It was not fixed. . It also stated that I still have some reguritation and stenosis with the the new valve. and the 2 echos i have had since the surgery stated i had some stenosis and regurgitation with the new valve. Not once in the last 11 months has my cardiologist mentioned this to me. I am still have shortness of breath with exertion and heart racing and dizzy spells. I have been to the er a couple of times. Why did the surgeon not fix the mitral valve while he had me open is what i dont understand. and why didnt anyone tell me all of this.
On dec 20th i started feeling bad. I had chest pains and my right side wentnumb. I was in bed for 2 days, on the 3rd day i felt so bad my daughter took me to the Er. My blood pressure was 230/110. They did a cat scan and the doctor came back and told me that the cat scan showed that i had had a mini stroke. and it probaby happend about 2 days before i came into the Er.
Over these past 11months they cant seem to get my blood pressure under control, it either goes to low, and lately it becomes very high and i get severe head aches. I can tell when my blood pressure is up and take my blood pressure a few times a day everyday.
Im thinking i need to get a new cardiologist. any advice would be greatly appreciated.
sarah

 

[Lisa in Katy]

Lots of people with MVP never require surgery, so unless it was serious they probably figured it was better to leave you with your natural valve.

I would definitely talk to the Cardiologist about the stenosis and regurgitation. It is apparently not that unusual for people to have this problem after surgery, although the severity could make a difference in your recovery. I'm not sure of your history and what type of valve you have. If you are on Warfarin, have your INRs been in range? People can have TIAs with in range INRs, but they are usually not bad enough to cause the problems you are talking about. Also, are you on medicine for your blood pressure? If not, it sounds like you need to be. Spikes can cause real problems.

I'm pretty laid back about various symptoms and don't believe in running to the doctor for everything. However, in the future, I wouldn't recommend waiting 3 days before going to the doctor. Chest pains and arm numbness aren't anything to mess with.

 

[Gail in Ca]

I remember being upset with my surgeon after my 1st valve replacement surgery, too. He just addressed the aortic valve and my aneurism, not my mitral valve which was leaking. My cardiologist said to me, that it isn't like a car, that you just don't replace everything that's wrong all at once. I was under a long time and the surgeon had to make the call to leave my mitral alone. But, I didn't have symptoms afterward like you are having. You must be assertive with your cardiologist. Try another one. The cardiologist I have now is much better at talking to me, so much more forthcoming with info, and such a better bedside manner, I wish I had switched to him yrs before.
Even during my 2nd surgery to replace my aortic with mechanical, my surgeon couldn't repair or replace my mitral, again!! Different surgeon, one of the best in the country. He said I was in too bad of shape going into the surgery and he found that my mitral was not prolapsed as was thought before, but it was congenitally deformed and couldn't be repaired, which is what he had planned to do. He didn't want to leave me on the table to address it, and knew it could be replaced , hopefully years later or not at all.
I take blood pressure lowering drugs so the stress is off that mitral valve, but it is leaking mod to severe. I just keep hoping it lasts a long time.
Talk to your doctor about your worries and your symptoms!
Gail

 

[Bina]

I don't know what it is with some of these cardios.....I went through life thinking I had only MVP. When things got bad, they said: nope, you have AS and need surgery. Then AFTER surgery I asked about a BAV and my cardio flips through some papers and says, "oh ya, you had a BAV".
Don't you just want to slap some of these guys?

 

[ponygirlmom]

I asked my surgeon if he could fix the teeny mitral valve leak I have while he was replacing my aortic valve, and he said that the leak that I have is actually the result they AIM for when they repair the mitral valve of someone who has a bad problem. In other words, I'm not perfect, but I'm better than a surgeon could make me!

 

[hall]

I don't know what it is with some of these cardios.....I went through life thinking I had only MVP. When things got bad, they said: nope, you have AS and need surgery. Then AFTER surgery I asked about a BAV and my cardio flips through some papers and says, "oh ya, you had a BAV".
Don't you just want to slap some of these guys?

Same thing happened to me. I knew about the MPV and that was it. AS??? Aortic valve???? I went to my cardio last week and he said they would never (famous last words) have to do anything w/the MPV. Whatever.......

I sure would get another cardio if I were you. They need to get you medically straightened out. Yep......lets line em up and give em one swift kick! I sure hope you feel better and they get everything figured out .

 

[SarahL]

Well today i go another migrain., felt dizzy etc. I went to see my family physican today and my blood pressure was again high 185/105. She said your blood pressure it terrible. I told her it had been that way for awhile. SO she is doing alot of blood work on me tomorrow and i see a different cardiologist on Feb 9th. and she recommended that i have and echo which hasnt been done on me since feb. She said she is going to get me feeling better. She increased one of my blood pressure pills and gave me a muscle relaxant to help my headaches and my backache. She looked at my triglycerides from ammonth ago and my tryglycerides were 1100 and she said it should be in the 400s, this is the first i have heart about it. she said my potassuim was low, due to the lasix i have to take. she increased my metopropolol also.and gave me some potassium to take.

she said if ididnt get the blood pressure undercontrol , instead of having a mini stroke like i had on dec 20th i could have a major stroke. My cardiologist just wasnt doing muich to help my blood pressure and everytime i have gone to see him i feel like he is rushing me throught the visit.
so i will see what the new cardiologist says. I have to see so many doctors with all my other medical problems i feel like i live at the doctors office. and i have to take so many pills my cabinet looks like a pharmacists. LOL

sarah

 

[DebbyA]

Sarah,

I'm so glad to hear you have a doctor who is going to follow up on your problems! It sounds possible that she will get your chemicals straightened out, and find out that your heart in in pretty good shape! I hope so.
From your post above, it looks like you are worried about your heart because of stenosis and regurgitation with the new valve. I was told that all new valves have some degree of murmur, so that may not be a problem. It would be a good thing to ask your new cardiologist.

Keep us posted!

 

[escargome]

Sarah,
Glad to know that your doctor is trying to get your BP under control as well as your other medical problems. My only suggestion is that when you see your new cardiologist, make sure you take a list of every pill you are taking and make sure he wants you to continue with each medication. Could be you will be able to drop some pills or change to different ones. Then you medicine cabinet won't look like a pharmacy In any case, take care of yourself. You definately don't need to have a major stroke..

 

[VikiVix]

Hi Sarah

Hi Sarah

I most definitely would get another doctor real soon and I also would ask the existing doc all your why questions.
Viki