Update

[KimC]

Hi,

First, I have a date for my ergonovine cath: June 28-29 in Cleveland.

Making the decision to move forward was not an easy one. In fact, it was excruciatingly difficult, as I went against the advice of my brother and father. But I'm confident I'm making the right decision: I sought three cardio opinions, including one from the CC.

I feel like I have a lot to lose either way: the upside is having a definitive diagnosis and treatment plan or course of action. The downside is obvious, and also that my brother and father have lost respect: they think I'm being too agressive. (They're conservative surgeons).

Oh, well. I'm an adult.

I'm still experiencing recurring chest pain since last April, the fifth month of my pregnancy. The pattern has definitely worsened over the past few months, but it hasn't sent me to the ER again. The Imdur definitely keeps it in check, but I hate taking any drug without a definitive cause.

I used to deny the chest pain because I didn't want to seem like a hysterical female, as vain or stupid as that may sound. But now I really don't care what anyone thinks. What I'm experiencing is real and fits the classic pattern of vasospastic angina that could be related to a malfunctioning aortic valve, CAD (least likely) or something seemingly more benign, like a hormonal imbalance. I'm praying for the latter.


Best,

 

[McCln]

Kim c

Kim c

You have every right to be agressive in your health care. Perhaps your father and brother are in denial that you would have health problems. My brother was in denial that our mother would ever pass on to the hereafter. When she did, he was in complete denial of her found health problemsn. She had an undiagnosed brain tumor. So, it is good to find out for sure from as many sources of what the problems are and take it care of. You are a good person to take such good of yourself. I always made sure I was on top of my heart murmur the bet I could. I was glad when i was told of surgery, it had answered so many questiona and not unexpected. So keep doing what you feel you have to, to keep yourself healthy and strong. Keep us updated on your progress. Take care.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Nancy]

Kim-

I'm very glad to hear that you are going ahead with the diagnostic process. You are going to the best and will be in very good hands. I hope that this will reveal what the problems are. There must be something. What you are experiencing is not a normal situation. I hope it is an easy fix, whatever it is.

Wishing you all the best.

 

[tobagotwo]

I agree. You live with it, not your male family members.

While they likely mean well for you, that doesn't mean their lack of acknowledgement and support is appropriate. All too often, patients (I hate that term) become isolated by their physicians, and are often subjected to mild insinuations and patronizing gestures that lead them to even doubt the very things they feel. Probably worse in a family situation, where they can play off of each other.

Besides, being men of medicine and science, why on earth wouldn't they be interested to find out what might be wrong? At worst, being human, they should at least see the gleaming possibility of a good, "I told you so."

Go. Do what you would have done long ago, if you didn't live in a family of surgeons. You're plainly not going to be able to move on until you do.

My suggestion is that you don't spend the effort trying to square it with the family medicine men, as it doesn't look like there's a good percentage in it. Just tell them you won't discuss it, if they won't support it. It's hard enough to do these things when people are actually helping you. Hopefully, they'll catch on eventually.

If not, a good, ash baseball bat applied firmly between the eyes frequently accellerates understanding in these cases...(joking, just joking)

I wish you best results with your chosen course of action. May it be the hormones after all.

 

[Glenda]

Kim, I agree with all that Bob said. He's got such a way with words and says it so much better. I am so glad that you are going to get to the bottom of this problem. You will be in my prayers.

 

[Harpoon]

You know, when it comes to heart conditions at least, I don't really think there is such a thing as being "too aggressive"...


All evidence points to a problem right? That problem is treatable right? The treatment isn't extreme or experimental right? Treatment isn't likely to cause greater problems than it solves right?


What's the hang up?


It's YOUR body, your heart, and you know what's best for you and your peace of mind. You've carefully considered all the options, all the pros and cons and you've made a decision.


Pardon me for saying this, but shame on them for not supporting you and your choice.

It's not THEIR heart, it's YOURS. 'Nuff said.

 

[Bryan B]

Kim,

I have to agree with everyone else. My PCP didn't even feel the need for a cardio follow up after my bout of endocarditis cleared up (even with my history of VSD and AI). Three months later I had surgery to repair my VSD and had my Ross Procedure. No one knows your body better than you. If you feel that something's not right you need to get it checked out. Better to have it checked and find it's nothing than to do nothing and pay the consequences later.

 

[Abbanabba]

Good for you Kim! You are the one living in your body and living your life 24/7. You have to follow you heart (..no pun intended!..) and do what you feel is right for you!! I hope your brother and father can come to appreciate that and offer their support - even if they don't agree.

Good luck with your chosen path.

All the best
Anna : )

 

[KimC]

Bowing in Gratitude

Bowing in Gratitude

"Thanks" seems like a lame expression: I'm bowing in gratitude.

Caroline, I do wonder if my brother and father are in denial. They also live far away, and don't know me as well as my mother and spouse who are my closest witnesses and strongly support me.

Bob, WHO ARE YOU ... ? You have great instincts and the ability to speak straight to my heart. I agree, I can't move on without an answer, and I need to stop discussing my health with the family medicine men. If I develop a brain tumor, then I'll consult them. Thank you.

My brother and father actually call my cardio without my consent. Initially, I liked the idea of them "checking up on me" when I was newly diagnosed with AI. But when I was hospitalized last December, my dad called the cardio on call and told him to release me, that my AI wasn't severe enough to warrant action, and that I didn't have risk factors for CAD. He even told the cardio that heart disease wasn't in his gene pool. (My family has aortic defects on my MOTHER'S side).

The hospital cardio, (a much older gentleman who referred to himself as Charleston's "Heart Man") met with me in my hospital room and joked that I should be talking to a neurosurgeon, (a patronizing reference to my father). Then he came over to my hospital bed and listened to my heart. All at once he changed his tune, ordered a thallium stress test, and prescribed nitro and aspirin. The next AM, I failed the stress test and here I am today, six months later without a definitive diagnosis.

Do you see how potentially dangerous my family politics are? I agree, I need to respectfully drop this subject and move on.

Harpoon, yes ... shame on them. They're trying in their own way to protect me, a glaringly obvious flaw, full of irony. Thank you for acknowledging this. Neurosurgeons are a special breed of egoists. Oh, I could write a book. (And maybe I will).

Nancy and Glenda, thanks for your encouragement.

Bryan, is that a standard poodle in your photo? My mom has one, too -- Luke!

All the best,

 

[tommy]

Kim,

My heart goes out to you (pun intended). You are in a very difficult situation. In your own words, you refer to the family politics as "dangerous". I'm sure that your family loves you very much and want the best for you. But is it up to them to ensure that this happens? They need boundaries. (Ooops. I think I just exceeded mine ).

My wife and I are learning to "let go" with medical issues of our college age son. It can be gut-wrenching at times. I'm sure that your family knows the feeling.

I hope and pray that you have a successful outcome, both in your physical healing and in your family relationships (in that order ).

 

[Bryan B]

Kim,

Yep, her name is Abby (Abigail) and she is 6 going on 2! That picture was taken a day or two before I came back to Nashville.

My sister gave her to me as a surprise Christmas present (she has 2 black standards including Abby's sister Gabby, short for Gabriel), but since I now travel so much she lives with my parents. They are retired, so you can imagine how spoiled she is. I got to spend 6 weeks with her (minus 4 days in hospital) and I'm already missing her badly!

 

[Karlynn]

Kim
You are a courageous woman. Towards the beginning of the year, you stepped back from VR because you wanted to live a normal life, not dwelling on your heart issue. I applauded you for that at the time. You knew what your spirit was in need of. Seeing your posts again, after your little abscense, made me wonder whether you had gotten to the point that, no matter how much you wanted to "live a normal life", your body wasn't letting you do that. It must have been time to take the proverbial bull by the horns and you grabbed ahold with both hands (I pitty the bull!)

Reading this thread, the phrase "The devil you know is better than the devil you don't know." came to mind. It's usually used when referring to people who are sticking with a bad situation because the unknown is too scary. In your case - your devil now is somewhat "unknown" and you are seeking to know it. Once you get specific information on what your issues are, I have no doubt what so ever that you will aggressively seek out the best course of action for you.

I agree with the others. It seems that for some reason, love most likely, your father and brother are in denial over your heart problem. They want to believe that this is not an issue for you because that would mean your life wasn't as carefree as they would like it to be for you. Also they are men, men are problem solvers. Since they can't fix you themselves, it's probably easier for them to believe that you don't need fixing.

God bless!