Help? Cxl'd Cardiologist Appt. My Bad!

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karen14

Well-known member
Joined
Jan 25, 2010
Messages
151
Location
Southern Oregon United States
I chickened out! ... Didn't go to my cardio appt. I'm feeling SO bad about this. I couldn't sleep ALL night, worrying about it. I did reschedule for April 20th though. But here I did all the tests he asked me to do, then can't find the nerve to go and hear the results! Geez, me!

I guess this whole heart surgery thing was more traumatic for me than I even realized. First needing it within two weeks of seeing my cardiologist; then, to have the wrong valve put in and still be sick!

Sorry, I'm just venting. But I'm so sick and tired of being sick and tired. Know what I mean? Plus, I don't know if I can survive another surgery, eke. The 1st surgeon told me I was "lucky to be alive," since I have a high tolerance to anesthesia, and them having to give me more. They thought I was in a medical coma and wouldn't wake up! Hear my fears running here? LOL. OMG. This sucks.
 
Well, canceling your appt. will not help at all. You have to go and get the results and find out what needs to be done. But you already know that and I am sure you will keep the new appt. Wishing you all the best.
 
I hear you my friend; I've been there and done that, so I can totally relate to what you're saying. That said however, you still need to get the results of your tests & see what the course of action will be. Perhaps by some miracle, surgery is not necessary right now, but you won't know that unless you keep your cardio's appt.

Keep the faith & keep your appt with the cardio on the 20th. I'll be praying for you! :)
 
You can't be any worse then I am about it. Ask anyone of the older members here. You can't get me in there until I'm ICU ready. Don't do that to yourself. Get to the next appt.
 
my heart goes out to you. best of luck, i hope everything is fine
 
Karen, you aren't the first to do this and you won't be the last. I know for me, the not knowing would be worse than the knowing. You've already rescheduled so stop kicking yourself. I'm sure he's not going to tell you you need surgery tomorrow (or he would have called you!), so you'll have some time to digest what's going on.


Kim
 
I'm exactly the opposite. I insist when they schedule any test for me, including echo, that I have a cardio appointment very soon after to get the results. I can't sleep waiting to hear the results. I want them NOW>

But, of course, I understand. This is such a nerve wracking experience and we all 'do it' the best we can.

You know what you have to do. Keep the next appointment and march forward. There really is no choice..... sadly.
 
Karen,

I agree with the others. You need to see your (new?) cardiologist to know where you stand and what you need to do.

I did a Google Search for your Surgeon's Name and found an interesting FREE Link to www.vitals.com/doctors/(name).html
I was also able to find a link to info on your hospital. Unfortunately, the categories weren't broken down to your specific issues (congenital BAV and CTD).

It would be interesting (but probably not very productive) to know how much experience he has doing Surgery of the Aorta and dealing with BAV and Connective Tissue Disorders.

I'm thinking if you need to have your valve replaced, you need to find a Surgeon Highly Experienced in Re-do's on patients with BAV and CTD. Dr. Craig Miller at Stanford University in San Francisco is one option that comes to mind.

'AL C'
 
Many Thanks

Many Thanks

Hi everyone!
Many thanks to all of you for encouraging me, for suggestions, and everything! You know what I realized? I realized that I had never cried about my situation. I mean to feel the feelings behind the fact of getting the wrong size valve, then possibly needing another surgery now (which wasn't supposed to happen). I'm a bit calmer about it all today, and fully plan to keep my appt. on the 20th. And it's true, who knows, perhaps I won't need this for a long time, if at all. I am losing weight, so this may help as well.

I did switch my cardiologists a few months ago. My first one actually went "closed-mouthed" on me! Anything about facts, he would not answer and was evasive. I think he felt as bad about this situation as I, as I know he's a good man. Who knows. I now have a new cardiologist who seems much more honest with me about everything.

In fact, the new cardiologist did call me after I missed my appt.! I found this odd. No doctor has called me personally, for several years, lol. But it wasn't bad (as my mind was telling me); he simply stated the fact that I missed my appt., and he wants to go over tests with me.

I'm still scared though. And I never thought of to think about surgeons who specialize in Re-Do's. Very good info. I wonder if my medical insurance would pay for that. Oh, psh, here I go again! I just need to stop worrying about all this, take action where I can, and give the rest to God. But the taking action part is important for me, as I can no longer just sit back and let things just happen.

I'm SO glad I found you guys here, this forum. No one understands this but one's who've been there! Please be patient with me, as I am prone to denial, lol. But this situation is so hard! I'm just grateful that you're all here to bounce this stuff off of. Thank you all again, and for listening to me.
God bless,
~Karen
 
I hope you will report back to us on the results of the appointment coming up. I agree with the others, denial is not a good thing, in fact maybe you can psych yourself out of it by the affirmation 'denial could deny me an improved life' or 'denial will not change the facts'?

I am sorry I do not know the whole background on the 'wrong size' valve you mentioned, but I cannot help wondering if there was some change after valve implantation? In other words, what if the valve was OK at the time it was implanted, but since you mentioned connective tissue disorder, perhaps there was further deterioration of structures near the valve that changed the fit?
 
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Hi Karen,
I think you will feel better when you know what's what and what you're dealing with. As for what your first surgeon said about the anesthesia, sounds like a very poor choice of words on his part. If you do need another surgery, plan to meet with the anesthesiologist before the day of the surgery; you could probably do this when you do the pre-op stuff at the hospital; tell them when you're scheduling the appt you want to meet with anesthesiologist.

Luana
 
Hi Everyone!

Hi Everyone!

Jeanie said:
I hope you will report back to us on the results of the appointment coming up. I agree with the others, denial is not a good thing, in fact maybe you can psych yourself out of it by the affirmation 'denial could deny me an improved life' or 'denial will not change the facts'?
I am sorry I do not know the whole background on the 'wrong size' valve you mentioned, but I cannot help wondering if there was some change after valve implantation? In other words, what if the valve was OK at the time it was implanted, but since you mentioned connective tissue disorder, perhaps there was further deterioration of structures near the valve that changed the fit?
Click to expand...

Interesting thought Jeanie, I shall ask about that at my next appt. As a matter of fact, CTD was never even mentioned by my cardiologist or surgeon, ever. Hm. And thanks for the positive affirmations as well. Thanks to everyone for support! Means SO much right now, as this is a tough time for me.

I don't know if size and weight of a person are a factor in valve sizing, but I know a woman on this board :)p), who has the same exact St. Jude sized valve as I do, and she's 5'2". Whereas I'm 5'9". So I am a tall, big-boned woman (& 50Lbs overweight at time of surgery; having lost 30Lbs since). My valve is St. Jude model #: 21AJ-501. I believe that's a 21mm size? My 1st cardiologist thought (after surgery), that if I lost weight, perhaps the valve would improve. So far it hasn't except minorly.

[The new mechanical valve tested putting out over 4.0 pressure gradient of blood after surgery. And it stayed the same until my last echo (a year & 1/2 post-surgery), where it corrected itself only to approx. 3.9 velocity (not sure of correct measurement term).]

I'm going to get my last echo on cd soon and may post it on here for viewing as well. And I will let you all know what my cardio appt. on the 20th reveals. If nothing else, I'm an interesting case study! LOL. Just kidding. But seriously, I will keep posting on this, as I believe those who've been there and KNOW info on this are my best source (you guys)!
Respectfully,
~Karen
 
First, Karen-- I want to send you a big hug 'cause you need it. You have been through a lot of stuff that would overwhelm anyone.
Second, I want to echo what friends here have said. One of my favorite quotes: "Monsters live in the dark." Often the facts are much less terrifying than what we imagine them to be. Go get the results, and may they be much more managable than you expect.
 
no help for it but to go. I am sorry that you've had such a bad time and can't blame you for your fear. I saw a comedian on Dancing with the Stars one season and at the end of his stay he said "I was so scared coming here but decided to face my fear and you all should, too. Just try it". I tried it and made it through and will always remember what he said. Remembering that made a difference in lots of things for me. Yours is quite a serious matter and going won't mean that you have to take further steps. Just one step at a time should get you there. Blessins.......
 
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