The importance of being informed

[Abbanabba]

I had a call from my dad last night and I was telling him how frustrated I am with the response I've been getting from my cardios and how I've just written a 2 1/2 page typed letter to my cardio asking her to justify her apparent lack of concern about my latest tests and symptoms (..and a whole lot of other stuff as well!..). Anyway, dad informs me that when I had my surgery in 1977, the doctors told my parents that my valve should last about 25 years before re-intervention was needed.

HUH..?!!!!!!!!

All my life I've been told by my parents and my doctors that I was "fixed" and aside from keeping an eye on my murmur, there wasn't really anything else they could do for me. I can appreciate they may have been trying to "protect" me, but frankly I can't help feeling a little P*SSED!!

When I left home at 15 I stopped having my bi-annual check-ups because I couldn't see the point of wasting my time and money on something that seemed pretty pointless. Had I have known that the reason they wanted to keep an eye on the murmur was because they needed to know when I would need a PVR, then I would have kept seeing them and would have at least tried to stay with the same cardio so they could get a good overall picture of how things were developing over the years.

Now I have no picture of how my heart was when I was feeling "healthy" and because I've travelled and moved so many times, I don't even have a regular history with any of the cardiologists I HAVE seen in the last 5 years.

Still, it's quite interesting that considering it's 28 years since my corrective surgery and I started getting symptoms 3 years ago, the original cardio was pretty well on the money with his 25yr prediction. I have to wonder if I HAD known about this, if my cardios now would be telling me I've been giving myself psychosomatic symptoms because this was when I would have "expected" them and therefore "made" them happen.

Hmmmmmmm......


A : )

 

[tobagotwo]

Why are we always the last to know about ourselves? And why does everyone else who did know always seem to act surprised that we did not?

At least it's more straightforward for you now. Any chance for records from that first cardio?

Besy wishes,

 

[Abbanabba]

Bob -
The first guy I was seeing retired many years ago. I've managed to get hold of my records from all those years ago, but much of it is pretty obsolete now. I did ring one of the cardios I saw about 5 years ago (the first time in 15 or so years) when I was heading overseas to live. I had a letter saying things were hunky-dory, but I've requested a copy of the actual results to see if there is much of a difference between then and now. Hopefully I'll get those this week.

I just wish people would give their kids a little more credit for being able to handle things instead of trying to "protect" them from the truth. It might not be fun, but at the end of the day it really is in their best interests.


.....jumping off my soapbox now


A : )

 

[gijanet]

POed right there with you............

POed right there with you............

ONe of my former students with TOF dropped by earlier this year to talk to me. I don't have her in class anymore as she is a senior this year, but she had just received a blow at her annual heart checkup and was upset. She had been experiencing arrythmia problems and was shocked to say the least. She, too, thought she was fully repaired as that is what everyone has always told her. She never even knew that she was at risk of developing arrythmia problems...........and now she suddenly finds herself on medication to control them. I spoke with her mom and, unfortunately, mom is not much more in the know than this young lady, so I hollered at Niki and Niki gave me some links to pass on to her for adults with CHD. Hopefully, L. will check them out and become more informed about her condition. I think she will as she appears eager to learn more.

Sorry I took the scenic route to explain why I am POed with you. Kids have a right to know and a need to know as well. Between your experience and L's, I am adamant that Katie is going to know as much as humanly possible about her condition when she is old enough to understand it all.

I'm sorry about the "surprise" and good luck on the inquisition of your card. I do hope he coughs up some good responses. Much love and hugs. J.

 

[Abbanabba]

Hi Gina, I'm sure as a parent you know all too well how heartbreaking it is to have to tell Katie she'll be going through all of this again one day, but I'm so glad you also understand that by letting her know, she will be able to mentally prepare herself. I guess it's similar to trying to judge the best time to tell a child they're adopted, for instance. If they're given little clues when they're younger, it's not such a surprise when they're old enough to fully understand.

I don't think I would have lived my life any differently had I of known about everything when I was younger, but I definitely would have been more dilligent in following up my cardio appointments.

Ah..... the beauty of hindsight.

Meanwhile, how is Katie going? I've not really had much of a chance to get on here much lately to keep track of everyone.


A : )

 

[Gemma]

Hi Anna,
I think you're rightly justified in being annoyed. I can't stand not knowing what's going on in any given situation, but when it's your health that's at stake you certainly should've been told a lot more!!!
Just wondering though - in light of this new (to you) information, do you think your new cardio might take you a bit more seriously now? If your original surgeon put a 25 year estimate on needing a re-op, surely at 28 years it's feasible this is what's causing all your problems???
Take care, and good luck in getting some proper answers.
Gemma.

 

[MichyB]

That's shocking Anna. I'm glad you finally got the truth. Was the letter sent? Let us know the response.

 

[Turkey Hunter]

As a parent..........

As a parent..........

You know, I have very early memories of the docs telling my mother ( at my annual check-ups) that I would never be a very big person.....that I should do nothing physical.....that my parents should keep me away from all physical stress. I recall hearing them say that I should have OHS by the time I was 10....12.....15.....18.....21, hell they had ZERO clue as to what they were talking about !! It didn't happen until God inter veined at age 27 !!

My point is simply that you can not judge your parents for not telling you !!
Mine told me everything and I still was the bull headed S O B that quit going to the cardio at age 15. That was when I decided the docs were clueless.

Not going to be very big..... at 15 I was 6' 4" and 225 lbs.
Not going to do anything physical.....A varsity Wrestler for a large school in Ohio as a freshman.

Enough said....my parents tried to keep me "in the loop" of everything. But you can not state how you would have handled that information. Remember, you would have been just a kid !!

Parents will always do what they deem best for the situation they are in, with the experience they have. PERIOD

Anna, By no means am I trying to take away from what you are feeling, yet I found it necessary to respond to this post. I just felt like I needed to defend parents....all of us who are parents, are just doing the best we can with whatever is handed to us on our plates.

My parents, for example, did what they felt was best. Allowing me to be active and participate in any and every sport I wished. Their attitude was simply that if I enjoyed it than I should be able to participate. (Not knowing what result would come) Imagine how nervous or even scared they were each time I donned a football uniform or a wrestling singlet, knowing that I had an aortic valve that was not performing as it should.

I owe my parents everything for allowing me to be a KID ! Thank you Mom & Dad !!

Those are many of the experiences that have made me who I am today !

You seem to be a very insightfully young lady concerning your physical well-being, and again, I mean no unthoughtful words regarding your feelings toward your situation.

My largest point is that none of us can even begin to know how we would have handled any situation that we have not gone through.

This site is a place to "vent" as much as it is a place to learn and help. I have done my fair share of venting here to this group, and they have overwhelmingly supported me......and yet have corrected me in my wayward ideals or thoughts.

OK, sorry.....I'll step down from my soapbox now.

Forgive me if I have rubbed anyone in the wrong direction.

Let's all take a moment tonight to bow a knee to the love and life our parents have given us.

God Bless,

Ben

 

[McCln]

Things were different for you, your parents were doing what they thought was best at the time. Children have been known to dwell on the worse case scenario when tolde certain things. Some can't handle certain things. Do not be mad at your parents. They did not know how you would react if you knew. Just let that go. Just be mad at yourself for not keeping up with the checkups. I did when I was younger. Just be glad that things have been caught now and being taken care of and you are doing for yourself to get healthy. I hope you will feel bette soon. Hang in there. Some doctors are crapy anyway, the worst bedside manners, nurses also.

 

[Guest]

*tilts head*

Anna, I'm sorry that you find yourself frustrated right now with not knowing....

*pauses*

I guess I'm one of the odd ones then, since I've always known that I'll never be completely "fixed". True, however, that I don't know _everything_ about my condition. I probably should, but for whatever reason, I probaby don't.

From my perspective, it is a bit shocking to me that parents/doctors are letting the kids think that they are "fixed"...and don't need any more treatment....

*shrugs*

Thinking more about it...I'm not sure really which is worse...or better. It really is a toss up. Not know...and go about your life enjoying it and doing whatever you want (almost, within reason, of course)...or knowing...and holding yourself back (let alone your parents "protecting" you) from doing things you want to do because of the chance something bad might happen....

Food for thought, I suppose....


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72/'6/'9/'81/'7, train/models = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html

 

[Abbanabba]

Gemma -
I'd like to think they might take me more seriously, but then I'd probably get the "our tests show this and that and this isn't an exact science, so regardless of what your doctor said 28 yeas ago, he couldn't know for sure". Anyway, I've still got a couple of cards to play so I'll just have to see how it all pans out.


Michy -
Am holding off on sending the letter until I can get these results from before I was feeling symptomatic (they should arrive this week). I'd like to see if there's any significant changes (or not) from then before I email the cardio. Will keep y'all posted on what happens from there.


Ben -
I can appreciate what a precarious situation it is for parents to be in, but I think in my circumstances I should have been told at least in my late teens or 20's. I come from a very dysfunctional family... I haven't had much to do with my dad since I was about 7 (until fairly recently) and I made the decision at 10yrs old to leave my mother to live her own life as soon as I could (since she made it apparent that's what she wanted), so I left home at 15 and have looked after myself ever since.

I travelled quite extensively and given my nomadic existence I think it was important to know further surgery was a possibility - especially before I moved overseas to a non-english speaking country. If nothing else, I could have kept in touch with a regular cardio so if something DID happen while I was travelling, someone would know who to contact in that regard.

I do agree that it's impossible to judge how we might react to a situation we've never been in. Sure, it might have had an affect on my life, but then I've always been very determined and self-assured (even when I was going through all of this as a kid), so I'm confident I would have been able to deal with the truth. When you're a kid 20-30 years down the track seems like an impossibly long time anyway, so I don't think it's something I really would have dwelt on. But then....... you never do know.

I guess for me honesty has become such an important issue because of all the lies, omissions and delusions I've dealt with from my family over the years on so many levels. I'd rather know the truth, no matter how hard it might be, than to hear more lies, or to have things kept from me for my "own best interests".

Don't worry - you haven't rubbed me the wrong way.... we all have our own point of view and I love that we can use this forum to share them. I guess everyone has to judge circumstances for themselves given their own situation and I certainly appreciate your input.

..... and now I'll jump off my soapbox (again!)


McCln & Cort -
I think I pretty much just said it all to Ben , but again, I really do appreciate your thoughts. I guess there's pros & cons to whichever way you choose to do something.


Sorry to prattle on (and on ).

A : )