This site, feel good/ bad

[kevin21]

Everytime I read posts i either feel good, when it is a good story or article, or I feel like I'm (choose one or more) light headed, short of breath, palpitations, fluttering, weak, "water hammer" pulse, etc...

Must be me empathisizing with the person...

Does anyone else get that way?

Your mind can do great and terrible things, if you let it.

 

[Ross]

Nope, it must be the monitor trying to suck your brain out. Happens to me alot lately.

 

[fyrfytr]

Kevin,
I am the same way. I feel happy when things are going right and I feel sad when things are going bad.

Dave
______________________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical 27mm

 

[LUVMyBirman]

Kevin,

I think your having a natural reaction. Still in your recovery period. At that point..... every little thing bothered me because it was so fresh.

It will pass in time. Going on 5 years here and still ticking if that is any consolation. Sticking close to the group here will help. I am more on the supportive end at this point. Though, I do learn a thing or two on occasion.

It's a beautiful thing!

 

[Nancy]

You're having a pretty normal reaction. Just about everyone feels that way at first. The more you read, the more accustomed you will become to reading about these kinds of things. Eventually, you will not have this reaction.

There's a learning curve at first. Stick to it, it will get better.

 

[ALCapshaw2]

Heart Surgery Survivors sometimes (often?) develop
a 'cavalier' attitude about what we go through
and what is done to our bodies.

We can accept a "No Big Deal" attitude from a fellow survivor,
but NOT from someone who doesn't 'get it'.

It IS a BIG DEAL, but we tend to 'shrug it off'
after we successfully 'cross the mountain'.

A friend recently sent me a message:

He had had a heart attack after mowing his lawn,
called 911, was in an ambulance 10 minutes later,
had an emergency cath where they found an artery
with 100% blockage, had angioplasty to open it up,
and placed a stent (his 4th).

Three days later he was released from the hospital
with NO permanent damage, feeling GREAT!
(and presumably THANKFUL

'NO BIG DEAL' (Yeah, right!)

I guess it's kinda like 'gallows humor'.

'AL'

 

[carlapv]

That's what is so remarkable about this site. There is a real magnetism . You visit and you suddenly you are drawn in and become involved with these wonderful people. You automatically trust these folks with some of your most personal thoughts.You are "UP" when they are and you are "DOWN" when things aren't going so well. You worry when they head off for their surgery or have had disappointing news from their docs. It is truly a "family". I don't think it really has anything to do with feelings after surgery, I think it is the nature of the people who frequent this site. You begin to know who will comfort, who will give it to you straight and who will make you laugh and lighten up your mood.

What a great place!

Carla

 

[Peggy in Alaska]

Kevin:

I know exactly what you are saying about reading posts on this site. The first couple of times I was on here, I felt like I had found a great group of people, and yet at the same time, what I had read in some posts made me want to go home and drink a bottle of wine, all by myself.

 

[Georgia]

Another 2 cents

Another 2 cents

Peggy - have the wine. Actually, around here we specialize in whine and cheese.

Be glad you're hearing this stuff before surgery; it beats "you're going to do WHAT to me?????" as they prep you. There's nothing much more scarey than the unknown.

 

[Ross]

No matter what, you have NO better group of people to stand beside you, support you, worry with you, and look after you anywhere else. All the experience here is what makes us all so special. We tell no lies. We may not sugar coat answers but they are truthful answers.

 

[Peggy in Alaska]

OK, Georgia, I'll have that wine [maybe not the entire bottle though].

I know I am grateful that I have a substantial amount of time to prepare for my surgery. I know I am lucky to have this website to view before the surgery. I can't imagine getting told you need a new valve and oh by the way, can we do it this week?!

I'll know more when I've had my check-up in Minnesota which will be next summer.

 

[Georgia]

Whoa, look out

Whoa, look out

Steve'll be making YOU redecorate the waiting room. He thought Betty would be there for a while, and here she's bugging out fast.

Save those old magazines, and figure out some heart-healthy snacks.

 

[Mark Wagner]

I feel the same way sometimes, but I am learning (especially from Ross) that we all have different perspectives and come from different experiences and walks. That is what makes this web site so remarkable and informative. For me, I am learning to sit back and respect everyones different angles in which they approach this site. The biggest blessing for me, is too know I am not alone, and there are people whom sincerly care and will listen, along with keeping me updated on what is new.

 

[ALCapshaw2]

Peggy,

You asked about who will do your followup once you leave Mayo / Minnesota. You and your cardiologist and your surgeon need to develop a CLEAR PLAN ahead of time about how long you will remain in MN and exactly who will be responsible for what once you leave.

My surgery was also away from home and I had some breathing / lung problems after I returned which my Cardiologist eventually resolved after several trips to the ER. Believe me, it is better to have ONE concerned and competent physician overseeing your recovery. It may be best if you can spend the first two weeks in MN and have the Surgeon / Mayo staff follow your immediate care. I suspect the cardiologists don't relish taking responsibility for surgical 'difficulties' early in the recovery. Some major hospitals have separate 'recovery centers' for just that purpose.
Check it out beforehand. Your surgeon's office should be able to assist you with that information.

'AL'

 

[Nancy]

Al is right on. There are times right after surgery when no one is in charge. Getting a plan together now is the best idea, and making sure everyone is aware of what is going on, so they are all on the same page.

 

[bvdr]

I think we just form a bond to each other. A year ago if someone would have suggested that I would be planning to fly to Chicago a few weejs after surgery to spend some time with people I have never met I would have thought them daft. Now however, it certainly is exactly what I plan to do.

 

[Peggy in Alaska]

Al and Nancy:

You brought up some concerns I hadn't really thought about. If I go home to Alaska, who is going to "look" after me, after the Mayo is done with surgery? Can't buzz off to Rochester for every little ache or pain post-surgery, now can I!
Yet, that is where my cardiologist is located. I don't have one in Alaska. They referred me out.

Maybe the cardiac group here in town ould have one guy who would agree to work with the Mayo cardiologist on the follow-ups? He could do the tests my Mayo cardio. doc wants and then send them to her, maybe. I know that with my 1st Echo done here and sent to the Mayo, the Mayo wanted to do their own on their equipment. Got the feeling the Echo I got here wasn't good enough!

Oh, Boy, so much to think about.

 

[Ross]

I think we just form a bond to each other. A year ago if someone would have suggested that I would be planning to fly to Chicago a few weejs after surgery to spend some time with people I have never met I would have thought them daft. Now however, it certainly is exactly what I plan to do.

Again,

 

[Susan Allen]

I know what you mean Kevin - when I found this site it really saved me. At first I thought I was crazy (was I scarying myself?) - now I am addicted. What to know all - good and bad. When my time does come - I will be prepared. This coming from a crazed maniac only a week ago.
I went right to the valve choice forum and I didn't even have results from my latest echo. Talk about mind racing and anxiety. I have since got the echo results and as suspected I go for a heart cath. next Wed. Had one of those 2 years ago - actually didn't mind it - best relaxation I'd had in a long time - first and only time I'd ever had Valium.
But the greatest thing I have observed is total strangers who really care about one another - especially to talk openly and share extremely personal experiences.
Although I've read some pretty scary stuff I'm glad I can - helps the mind and body prepare for whatever may be next.
And darn I'm not the only one in the world with this conditon - had to stop feeling sorry for poor ol' me and realize I have it made compared to some of the amazing stories I've read here.
Makes me thankful I have time and choices.
Thank you - thank you - thank you
Susan Allen
P.S - Thanks Ross and all others who advised on starting from the beginning

 

[ALCapshaw2]

Peggy,

Here's another suggestion that you can start working on right away and that is to find a Good Internist near where you live to be your Primary Care Physician. Some internists even specialize in Cardiology and could do many of the tests your Mayo Cardiologist might want performed.

The first 2 weeks of recovery are the most critical because you will be so weak after surgery and your body is adjusting to the major invasion you just underwent and to a long list of new medications. My surgeon kept me in the hospital for 8 days because I live 100 miles away and he wanted me to be able to get along with only family support when discharged. As it turned out, I had several visits to the ER for breathing / lung issues after I got home.

If the hospital will agree, tell them you do NOT want any residents performing any part of your surgery. That may not be an option at a teaching facility but it wouldn't hurt to ask.

In selecting a surgeon, you will want someone with a LOT of experience using your Valve of Choice. Personally, I would NOT
recommend using a surgeon who does heart transplants because a transplant operation will take precedence over any lesser surgery whenever a donor heart becomes available.

Also, if at all possible, try to be placed for an early surgery time.

That should keep you busy while you wait for your 'date' !

'AL'