More FROM NEW PROBLEMS.....

[NEWHEARTPT]

I posted "New problems, Big Decisions". Some people asked me about my history, etc. Last June I went to the ER because I was having SOB and very weak. I was in the hospital for 1 month. I was diagnosed on admission with mital and tricuspid valve regurgitation, my EF was <24, and they stated I had cardiomyopathy. At that point I was in Heart Failure. They did a repair on my 2 valves, but for some reason they didn't replace them as they had said they were going to. I don't know why. I have a new doctor since 3 months post op. I had no insurance when I went intto the hospital and thats a whole story in itself. Anyways, I guess I was doing ok at 3 months post op. Still had an enlarged heart - the result of my valve problems. In Jan of this year I was still doing ok. Then I went back in April and I was sent for a TEE and my mitral valve regurgitation is moderate. My heart is still enlarged. I am having a heart cath on Monday and the doctor said that he would talk to me after that as to what the plan will be. He said he will be consulting with a cardiac surgeon in the area. He said that he would like to keep me from 'getting any worse" and I will have "intense follow up" . I don't know if he will or will not recommend surgery. He says that the transplant would be something that may happen in the future.
Here is my feeling-- I want the mitral valve replacement -- in the hopes of stopping my heart from getting worse. But it is risky. If surgery is suggested, I am definitely going to tell him I am going to UCLA. This town doesn't have the capabilities for a high risk heart surgery. Other than that, I feel like I think many of you do -- I have to advocate for myself, I have to learn everything I can about my disease and I have to speak up for what I want. Is this what most of you have found, You really need to be your own advocate? I really thrive on any suggestions or help anyone can give. I really appreciate hearing from all. I would especially like to hear from anyone in Las Vegas or who has dealt with any LA hospitals. Thanks for being there for me -- It really means alot. Angela

 

[labguides]

Ucla

Ucla

Angela,
Dr. Laks (surgeon) and Dr. Michelle Hamilton (Cardio) at UCLA are part of the heart transplant team. They are both wonderful. Dr. Hamilton is our daughter's cardio and Dr. Laks did her mitral valve repair. I would be glad to share our experience with UCLA -- all positive comments at all levels of care. If you want appt with Dr. Laks or Dr. Hamilton, you might have your MD call them -- that might get you in sooner. Feel free to contact me
[email protected] or via private message on valvereplacement.

Mindy

 

[hensylee]

Angela - I am a STRONG believer in being your own advocate. In the past few years, my brother and I have had health problems crop up. I believed everything the doctors told me til one day my brother was in big trouble so I began searching the net for every single one of his medicines and 'conditions' and it just amazed me what is available to us.

VR is one of the greatest places to find information about hearts. There are other sites if you just search. You can even check out doctors. Read up on your meds. It is important to your life.

 

[Karlynn]

Angela,
I've found through some bad experiences, that I just can't take a doctor's word as "gospel". It doesn't mean they don't care, or want to do you harm, it's just that sometimes they make mistakes, or can't think outside of the box, or just aren't seeing things from all sides.

I'm not saying your doctors are these types, but as the others have said, you need to be on top of your own condition. Learn everything you can find about what they say is going on with you. And you may find that they are correct, or that you have questions that, once you ask them, gets them to think differently.

We have one member who just had surgery at Mayo. She was very sick with heart and lung problems. The cardiologists were saying they couldn't operate because of the lung problem, the pulmonologists were saying they couldn't operate because of the heart problem. No one wanted to do anything and she was just constantly getting worse. It took her a long time to get seen by someone who wasn't going to dismiss her issues by following the party line.

It sounds like you've already begun your Self-advocacy journey. Hang in there and don't get discouraged.

 

[KimC]

Angela,

I second Karlynn ... you have to be your own best advocate. Have courage, be assertive and always seek the best care that you can afford. Thiat is my advice anyway.

Welcome to VR.com and please keep us posted.

Best,