How Did You React When (S)He Told You?

[bookjp]

Went for a routine physical to pacify my wife.My GP sent me for an echo and five days later they called and said I was diagnosed with severe aorta stenosis.Sent me up with an a appointment with a cardiologist.I thought he would prescribe something to take care of the problem but no he tells me the only cure is surgery.Since then after 3 weeks of every test imaginable things have only gotten worst.I guess you could say I'm still somewhat in shock.Because I always thought if your sick you have symptoms and damn it I have none whatsoever!!!!!!!!!

 

[Ross]

Ross--eeek, I didn't realize you had TWO aneurysms. Yuck. At least this one's in your abdomen...has your doc given you any idea if it can be done via stent? Sure wish mine could. Not crazy about the whole cracking me open thing.

I've already alerted and lined up the surgeon I want to do the stenting. If I had my way, they'd be doing it today, but here I sit, waiting for the magic number 5 to come up again. I told my Cardio that I want it done at 4 because my ascending never made it to 5 before rupturing.

 

[Eva]

Wow, mine is so fresh that I am crying right now reading this and remembering. Found out last Monday. I have had a bicuspid valve since birth that has never caused me any issues. I got echos every 2 years and that was that. About 2 years ago they discovered that my aorta was enlarged. They said I needed to have it monitored more regularly because if it increased I would need surgery. Well I am so used to going to the cardio and just having him say "your doing great just check in again in 6 months". I should have known when the fellow came in and explained that things had increased a bit. Then another 30 minutes before they both came in. They just laid it out and I started bawlling. They walked me right over tot he nurse who makes appointments with the surgeon. They did not explain at all what the surgery what entail which makes me so mad right now. They sort of made it seem like "hey, we just go in and replace the aorta and you'll be good to go". No idea of the huge deal OHS is or that they are probably going to replace my valve while they are in there, Or mechanica versus tissue ... or heart lunch machine. If it weren't for this sight I would be going into the surgeon absolutely clueless. I have to say that he did say to call with any further questions whcih I have not done. My cardio only spends a few hours a week on office visits so I almost feel like I am in the way. I have hardly stopped crying since. I called all my good friends and family that day so that I wouldn't have to rehash it many times.

CCummins,

Sometimes it might be better to go to the operating room not knowing much of what will happen exactly there...lung machine, etc.......leave everything that happens in that room to all those professionals invovled in the operating room and you KEEP FAITH AND TRUST they will handle everything well. Only think of the parts you have control over and leave the rest...this same thing almost drove me nuts until this was mentioned over and over to me! Good luck.

 

[Cooker]

I was in the waiting room for a few years ? when I was first told that I would need it I went numb ?. Then I found this place, this wonderful place ? I know I would have made it through without vr.com but the people here made it so much easier ? they became my family and I theirs (like it or not) ?. I was tolerated, chastised, loved, whatever was needed at the time ? the day of surgery I was relatively calm ? I became more reflective and did some things that I had been putting off (will, living will etc) ?.

The range of emotions runs from one extreme to the other ?. IMHO, there is not ?wrong or right? way to react?.. I don?t say it often enough, thanks for being here and allowing me to be a part.

 

[Eva]

I was in the waiting room for a few years ? when I was first told that I would need it I went numb ?. Then I found this place, this wonderful place ? I know I would have made it through without vr.com but the people here made it so much easier ? they became my family and I theirs (like it or not) ?. I was tolerated, chastised, loved, whatever was needed at the time ? the day of surgery I was relatively calm ? I became more reflective and did some things that I had been putting off (will, living will etc) ?.

The range of emotions runs from one extreme to the other ?. IMHO, there is not ?wrong or right? way to react?.. I don?t say it often enough, thanks for being here and allowing me to be a part.

I am so glad you were already a part of this, Cooker, as you were the first person I chatted with and calmed me down at the time I was going 'nuts' just a few days before my surgery...and thanks to Norma and Bina. You three will remain my angels!
Like you said above...I walked to the operating room very calm and looking forward to the healthier me.
God bless all the members of this forum and the founder Hanks for starting it.

 

[Johnny Stephens]

Anger. I thought I was done with severe health problems, having beaten Hodgkin's 25 yrs prior.

My GP had done some investigation when he heard the heart murmur, but nothing was ever mentioned about surgery. He called me and said he was referring me to a cardiologist - me? I'm 42!

After a brief intro, my cardio explained that I had aortic stenosis, and would need an operation within a year to replace the valve (wound up with 2).

My reaction was numbness in his office, but I'd been through life-threatening illness before, and had enough presence of mind to ask a few semi-intelligent questions. I left repeating "Wow" to myself. As the day wore on, I fell into a pit of anger and self-pity - "Why me?" I'm still embarassed about how I carried on about the injustice of it all.

 

[Guest]

How did you react if you don't mind sharing?

Well, the first 2 surgeries, didn't have much reaction at all. I didn't know what was going on in 1977 and, in 1987, I didn't feel much about it ... I just knew it was something I had to endure ... and I would be out of school for a while.

But, in 2003, it was almost as if a lightbulb went off. At the time, my grandmother had died that previous October (2002), so when I was told 2 months later (December 2002) I needed more surgery, I realized that my fatigue wasn't all because of sadness.....

Then, of course, it hit ... hard. I realized that you had to find ways to be happy in life ... tomorrow is never guaranteed, no matter how much we plan as if it is......

*shrugs*



Cort | 35swm | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker ...W Grill meal = 02/28/09
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"Everything is temporary anyway" ... Edie Brickell and the New Bohemians ... 'Circle'

 

[DavesMom]

I was 19 when I had my first surgery and actually took the news pretty well. In fact, I was the one who comforted my very upset parents when the doctor told us. Of course when you're that age you think you're invincible so it never occurred to me that this was a serious situation.

My second surgery was twenty-three years later, so there'd been plenty of time to forget the bad parts of number one. (ummm...can you say "breathing tube?") I was a bit upset when I first found out but then started to think positively. The only symptom I'd had was fatigue, so in a weird way I began to look forward to the surgery as a new start and a way to get back my normally high energy level.

Now I'm being watched due to a 4.5 cm ascending aortic aneurysm. I'll tell you what - if and when I'm told I need surgery number three I will be PETRIFIED and probably get a look on my face either like Janet Leigh in "Psycho" or Macaulay Culkin on the cover of the "Home Alone" DVD. In any case, it won't be pretty.

Take care everyone.

Cheers,
Michelle

 

[Christina]

My surgery happened quite a few years ago now but it's still fresh in my mind. I had no idea I was in such bad shape and had gone to a Homeopath to ask her help in losing some weight. I felt I was getting weaker, not stronger and wasn't able to maintain the weight lifting/exercise regiment I was used to. Well, she told me not to worry about my weight but to make an appointment with a heart center asap and have my heart checked out because she heard the profound heart murmur. I told her I had had that all my adult life and no other doctor made me go check it out further. That little voice in the back of my head told me to listen to her. When that appointment date finally came around (I had to wait 6 weeks) the cardiologist gave me the shock of my life. I remember being in a daze (I was alone) and thinking:"This can't be true?" The appointment for the cath was made that very same day, and I remember wanting to stop it all because it was all going too fast to my liking. In my mind I wanted to postpone this for as long as possible. This couldn't be happening to me. But I was told I needed OHS asap and that I didn't have the luxory of negociating and postponing. Afraid of the unknown I cried my eyes out before the cath, but the cath was not bad at all. Surgery 3 weeks later. Not terrible and I did okay. Little did I know that less than 2 weeks later I had to go through another OHS because what was not known to the medical team was that I am a fast metabolizer of Coumadin and vitamin K, and the little Coumadin they start you out on was far from sufficient for me. When I came home they had me supplement with Lovenox injections (fun ) but we ran out of Lovenox. Called the Cardio office numerous times, left message after message but no return call until after I had missed 5 injections. In the mean time I was only getting maybe 2-3mg of Coumadin per day. I woke up feeling absolutely horrible Thursday morning (I had come home Saturday) and we decided I should go back to the hospital. They did the necessary tests and the surgeon came to tell me that afternoon I had a blood clot lodged underneath the new mechanical valve and that he had to redo the surgery the next morning at 8AM. I did well the second time around and something good came out of it though. I received a different mechanical valve (St. Judes) and this one seats better and I can almost hear it. YEAH!!!
I will celebrate my 9th anniversary in August

 

[KAJ]

I cried even though I was expecting the news.

Karl

 

[BDMc]

We certainly have a special brother/sisterhood thing going here! I went to my PC thinking I had mono. He was very considerate, asking me if I knew I had a murmur. I said I'd been told that after my last physical about a year before. That doc had said many people have murmurs, and many never need attention, but to monitor it. The new doc then told me that the murmur was going to require OHS, and sooner rather than later. I would have been less shocked if he told me I had cancer. He gave me the name and number of a cardio to call for tests (stress,cath, + echo). I had been working two full time jobs, and was tired, and run down. I had had sharp chest pains off and on for 9 months. He said he didn't think the pain was related, and said all my symptoms were a result of my schedule, but that aortic valve would need replacement, probably within the next year. I was terrified, and scared out of my mind. I went into denial, and didn't call. A week or two later my PC called me at work (we're not allowed calls) and said he had to talk to me. He made me promise to call the cardio the next day. That was how it started for me. Brian

 

[Gail in Ca]

Reactions X3

Reactions X3

In 89, my 1st reaction was to think to myself, holy sh*t, I'm going to have a scar! (I was only 34 and liked my bikini's). I didn't know what to expect from AVR and aortic aneurysm repair.
In 00, I burst into tears when my cardio told me my porcine valve was going to need replacing. I just was sooo sure it would last 15+ yrs..
In 09, I was just shocked to be told my mechanical valve needed replacing, and I took it well at first. I said to my cardio, well, at least they won't have to saw thru wires this time. ( I had my sternum wires removed in 01). But on my way to the lab for yet more blood tests, I began to cry, but I sucked it up. So, it's been about 3 wks and I am so wanting tissue valves, but I am pretty sure it's going to be mechanical for both. I waver on knowing mechanical will be a lifetime thing vs the ease of tissue.
I stopped coumadin tonight, surgery in 4 days.....
Gail

 

[pnwcoast]

My PCP told me I had a significant heart murmur and that I should see a Cardiologist. He knew of one he wanted me to see.
The Cardioligist monitored me for several years and then said "no body would argue if you wanted to have this fixed today."
Several years after that I asked my Cardio if there was a pill I could take or some other way to fix this, and if i did'nt have it fixed, what would happen?? He flat stated I would die............. and he told me how it would happen.

I asked him if he knew of a good surgeon.

The rest is proof that a good cardio looks out for the patient!

 

[DeWayne]

The first one I don't remember, it was a few years ago lol
The last one in 2006 when I went to see the cardiologist it was because I had told my wife it was time and I needed to see one and not to let her talk me out of it. I always knew that one day I would have to have another operation. The aneurysm was a bit of a shock, but I knew surgery was coming (they told me probably by the time I was 30 or so and here I was 52) and I was really prepared for it in my mind. So when she told me I needed an operation and it needed to happen in the next 6 months I was ok with it.
The hardest part was deciding the valve type, once I made that decision I got my affairs in order and relaxed till surgery day.

 

[jwendlandt]

I know what you mean. I went in for a sore throat and was told I had a aortic valve leaking. I am moderate to severe and will be checked in another 6 months. I do not have any symptoms and range anywhere from being very emotional to thinking there is not way this is happening to me.

 

[lcwhitney]

The first time I r told him to go to hell ! that I was not going to have the surgery. The second time I was just relieved to know that he found the source of my problem.I had spent 10 months in constant pain. I would have agreed to anything.

Lettitia