Anyone feel misunderstood?

[BDMc]

Welcome aboard! I had limited short term memory for about 10 days post op, and do not remember a lot of it. I attribute that to the heart lung machine ("pump head") and the anesthesia. I think they both effected me for a much longer time, but I wasn't aware of my own limitations. I'm almost 24 years post op, and still treasure these forums. Others generally can't understand our heart related issues! You can vent here anytime, and likely get some real understanding too! All the best, Brian Mc

 

[Gail K]

Man, I'm really surprised by some of the reactions people here are getting from others. I watched both of my parents go through open heart surgery and it looked absolutely horrible to me. I can't imagine anyone thinking this is a simple surgery or saying such insensitive things.

I went through cancer when I was 35 and your comments remind me so much of what I went through then. No one my age had any clue as to what I was going through and even people who were older and should have known better said things that I thought were insensitive. I don't understand it. Maybe going through things like this will make us better people because we can be more compassionate when others have serious health problems.

I haven't had much of the same problem with insensitivity about my valve problem, but maybe my expectations have adjusted. I did have one aunt keep telling me how heart surgeries are so much easier now and it's only a small cut they make. I had to keep telling her I'll be having full open heart surgery, but she never seemed to hear it and I got tired of it after a while and just stopped saying anything. That seemed pretty insensitive to me - but I'm sure people don't realize what they are saying. Maybe she thought she was making me less worried.

The one thing I do have trouble with is I have to keep explaining to people that I don't want to do certain things with them because I get too tired. I hate having to do that and worry they think I'm just making excuses or trying to elicit sympathy.

I have to laugh at someone's comment about loving their dog. They sure are the best comforters!

 

[Ross]

Maybe we need to carry around blackberries or something that can play youtube videos and let them see an open heart surgery, then they can decide if it's such an easy thing? Imagine the look on someones face when they start cranking the rib splitters or when the surgeon lifts the heart out of is habitus and lays it aside to work on it?

 

[Bina]

Right, get rid of those useless coffee table decorations.....put a rib spreader on display!
Keep your old valve in a jar......That will shut up 99% of the morons. Ha Ha

 

[njean]

Speaking of Valves in a Jar......

Speaking of Valves in a Jar......

Don't want to freak anyone out but...........

speakin' of valves in a jar............ (sorry for the blurriness of pic!)

View attachment 6097


Imagine taking this to show & tell!!

 

[DebbyA]

Katherine,
How are you doing now? (Sorry to get here so late.)

A lot of people are afflicted by the popular culture reaction that positive thinking cures all, and their version of positive thinking is to minimize the unpleasant or uncomfortable--they want to guide you to do the same. Some folks do have medical problems, and it's not because we didn't smile enough.

I was in a yoga class before AVR. At the end of the closing rest period, the instructor had us fold our hands before our hearts and thank them, and I always thought "YOU TRAITOR". Yeah, heart surgery is different...

 

[SHEEPDOG]

It is not just HEART stuff either.

It is not just HEART stuff either.

My dad has an infection that went from his knee (post surg) to his spine. This all hit on the 4th of july. After almost 2 weeks of misdiagnosis, (oh it's muscle spasms) we found he has (some big $23.00 word that I can't remember) (osteo-something) which is an infection in the bone.This is causing MASSIVE pain and spasms due to actual damage to the muscle. He will be on IV antibiotics for 6-8 weeks with a port in his arm to his heart. Others at work say, "Oh yea, I have back problems too" NOT THE SAME FOLKS!!! People out there think that ALL medical problems are the same. hey can't accept that others may be MUCH worse because then they look like big babies and no one will feel sorry for them.
osteo mylitis?

 

[Dawn-Marie]

Hi Katherine and welcome to the VR family...it's nice to have you here!

Yes, i've had many people who have made stupid statements that shows their insensitivity to what i'm going through. Both my aides say they would rather be me than them, since they have both been having major car problems. Now, i understand what it is like for them, since they both needed major, expensive car repairs, but i have major health issues and i could lose my life. When i've tried to tell them, they just brush me off and start talking about something else.

I have to go to Cleveland Clinic or Columbia-Presbyterian in NYC for a Food and Drug Administration Partner Study of the fairly new percutaneous aortic valve. I don't even know if i'll qualify yet as they won't be getting back to me for several weeks. Most of my friends tell me right out it's to risky and i'm stupid to have it done. What i can't seem to make them realize that without this i'm a goner, for sure. It's risky, but life is a risk, and when you're fighting for your life, sometimes you will do anything.

The most stupid thing that my one aide keeps saying is that it won't hurt me that much if i need surgery to have my "scrotum" broken during the surgery. I keep trying to tell her it's my "sternum". Good grief, i'm a woman. It takes all kinds, hehe!

 

[R&N Brown]

Hello and welcome to the board. You may be fighting a losing battle!

I quit trying to explain how I was having a birth defect repaired at age 48, people tend to look at you funny! What I have found is that most folk only understand vaguely, bypass surgery, or the term "heart attack".

I would like a nickel for every time I have been asked "Aren't you a little young for a heart attack?" I have found myself answering (in a nice manner of course) "First, thank you for referring to me as young, and second, I was driven to it by having to put up with people like you!" It tends to be a good ice breaker!

I have not been the best poster boy for a rough landing after OHS here in my neighborhood. Two days out of the hospital I was standing on the sideline of my oldest boys summer football camp. Post surgery, a few friends asked when I was going in for my repair. I've been real mobile within reason.
I am right now 4 weeks to the day off the table and I feel better then when I went in. I have been very fortunate with my recovery.

I have found that simply saying that I had 25% of my heart replaced gets the point close to understandable, and I follow up with, "It's amazing what they can do now-a-days with a few stitches and some super-glue!" (I was glued, it works!)

I find that like most on this board, unless folks have had OHS they cannot comprehend what it really involves and what it does to your system.

Rob

 

[CThrock]

Hey, I'm still trying to calm myself from Norma's "valve in the jar".
Do you have that on display in your home Norma as part of the decoration!! (would be a good Halloween decoration...Still trying not to freak out to bad!!!

 

[skeptic49]

My significant other seems to think that if I get a "cow valve" I'll be fine and that everything's a cinch. Meanwhile I'm worried about "sudden death" and typing up a letter to him to be opened in the event of my demise.

Misundersood? Who me?

Jim

 

[Bina]

I think our spouses really want to believe that we will be "fine" and "everything's a cinch", when really they are just as scared as we are.

 

[njean]

Hey, I'm still trying to calm myself from Norma's "valve in the jar".
Do you have that on display in your home Norma as part of the decoration!! (would be a good Halloween decoration...Still trying not to freak out to bad!!!

I warned you it might freak you out!!

Actually my husband was the one that asked my cardiologist in Houston if we could have the valve. (I was sooooo out of it at the time, that I really didn't care one way or the other!) But the cardio very graciously said, "sure, let pathology do whatever they have to do with it & then I'll request it back for you".

And that's the story of my 33-year old Aortic valve in a jar!

P.S. I keep it stored away in a cabinet. (maybe I could try selling it on Ebay! )
Heck, if a "cornflake" in the shape of Illinois sold for $1500 imagine what my valve might go for!

 

[Bina]

Norma, I'll start the bidding with my usual 5 bucks.

 

[njean]

Norma, I'll start the bidding with my usual 5 bucks.

Come on Bina --- don't be cheap! Even your little nubians would nab more than that!!!

 

[Bina]

There just ain't enough money to buy my darling Nubians....OK.....$20.00

 

[Duff Man]

My significant other seems to think that if I get a "cow valve" I'll be fine and that everything's a cinch. Meanwhile I'm worried about "sudden death" and typing up a letter to him to be opened in the event of my demise.

Misundersood? Who me?

Jim

I thought about getting a camcorder or something like that. I don't think I could do that without crying though... Now that I think about it, there's some people I'd actually like to tell off after I die.

The movie "PS I love you" totally made these ideas obsolete anyway. How are we supposed to top that guy??

 

[KatherineK.]

Maybe we need to carry around blackberries or something that can play youtube videos and let them see an open heart surgery, then they can decide if it's such an easy thing? Imagine the look on someones face when they start cranking the rib splitters or when the surgeon lifts the heart out of is habitus and lays it aside to work on it?

Haha Ross! I actually DO have my gory before and after pictures on my iPhone. I almost thought about making a t-shirt too.

 

[alpha 1]

being misunderstood

being misunderstood

hi, i always feel misunderstood, my son had the surgery, and ive been going crazy ever since, we are 4 1/2 months out now and still worry about everything, my brother had surgery on an ingrown toenail and my mom was going nuts (i think that is where i get my worrying from, my whole family is very high strung, i think it is an italian thing) any way i said mom it is only a toe, it isnt heart surgery. anyway i know how you feel in a way because of what i have been through with adam, i still havent left him, not even for a nite. and no one can really understand, unless they have gone through it or if they have a child that has gone through it, which is worse than if it were me. people can be supportive, but one doesnt know what it is like unless you have been there. good luck to you.
alpha 1

 

[Duff Man]

It's all relative to prior experience, I think. The only couple guys I know that can identify are ones that had a 50/50 chance of dying on the table. One guy had his ascending, arch and descending aorta replaced, all of his valves, etc, and the other guy had a bone marrow transplant and for some reason had very bad chances of surviving and experienced cardiac arrest.

My mom went in for surgery on her finger and she had major anxiety about it. I tried to explain to her that the risks of the surgery were so small that it was basically impossible for something to go catastrophically wrong, although weird mistakes have happened.

If you've ever watched a "Montel show", you might've seen where a lady was accidentally injected with an antiseptic agent and subsequently died. There were several horror stories on the show.