So scared and feel so alone

[Deanuk1982]

I'm new to this site after reading (when I dare pluck up the courage to do so).

Lived with Airtic Stenosis from an early age but now 34 and have critical aortic stenosis. If I'm honest I'm starting to feel mild symptoms of tiredness when I never did before. I can currently live a normal life I.e play with my kids, work etc but have notice a difference in normal life.

I have young children and I'm so scared that they will not remember me if it doesn't go well when I go under the knife so would like to put it off for as long as possible. But I don't want to run the gauntlet to the point where I die. I have an appointment with the cardiologist in two weeks and I'm genuinely scared to give him an honest answer on my symptoms. Is this normal? Should I be honest or carry on until I cant carry out my normal daily tasks?

 

[dick0236]

..........I have young children and I'm so scared that they will not remember me if it doesn't go well when I go under the knife so would like to put it off for as long as possible. But I don't want to run the gauntlet to the point where I die. I have an appointment with the cardiologist in two weeks and I'm genuinely scared to give him an honest answer on my symptoms. Is this normal? Should I be honest or carry on until I cant carry out my normal daily tasks?

When I had the surgery at age 31 I also had two small sons (6 & 8 yrs). Not only will they remember me, but their kits, my grandkids and their kids, my great grandkids will......altho I probably had thoughts like yours prior to my surgery. It is wise to wait until the surgery becomes necessary....but my philosophy is "get it done a little too soon rather than a little too late". OHS is normally not life altering and will give you the opportunity to enjoy life.....and your kids for a long time.

Don't try to con the docs. They are gonna see the test results and will know if you are not truthful.....and being untruthful will only confuse the situation and possibly lead to medical errors.

 

[DachsieMom]

I had young children as well - 6 and 8. I was more fearful of what could happen if I didn't do anything. My surgeon was very confident, so that helped.

 

[AZ Don]

Generally surgery is advised when the risks of the surgery are less than the risks of the condition. If you lie to your Dr, then you could be increasing your risk. If you don't trust your Dr. you can always get a 2nd opinion, but putting off needed surgery only adds to your risks.

I agree with this response completely: "I was more fearful of what could happen if I didn't do anything."

 

[LondonAndy]

I don't have children but I certainly considered the worst case scenario prior to surgery, and made some minor preparations in case I didn't survive, so seeing other people's comments here I certainly think those feelings are pretty normal and natural. In the event, surgery was much less traumatic than I had feared, there was very little pain, and the benefit of the surgery very apparent soon after.

So be honest with your cardiologist - if you delay the surgery not only are you at risk of heart attack, but also your heart will enlarge and that leads to poor heart function, which will adversely affect your life afterwards. The person you would be lying to would be yourself.

 

[ashadds]

I'm new to this site after reading (when I dare pluck up the courage to do so).

Lived with Airtic Stenosis from an early age but now 34 and have critical aortic stenosis. If I'm honest I'm starting to feel mild symptoms of tiredness when I never did before. I can currently live a normal life I.e play with my kids, work etc but have notice a difference in normal life.

I have young children and I'm so scared that they will not remember me if it doesn't go well when I go under the knife so would like to put it off for as long as possible. But I don't want to run the gauntlet to the point where I die. I have an appointment with the cardiologist in two weeks and I'm genuinely scared to give him an honest answer on my symptoms. Is this normal? Should I be honest or carry on until I cant carry out my normal daily tasks?

I have at this point moderate stenosis ..age 26...Think for a moment if you dont intervene you have a 100% mortality risk depending on symptoms, usually severe symptoms take time to appear...but with critical stenosis you can expect it within or at 5 years

The outcome of anything in life is not predictable...but modern medicine has a definitive cure and for a young person the absolute risk is lesser than a older person.... so from 100% risk modern medicine has reduced the risk to an STS score risk of 2.7% with remember majority in 80s getting the intervention .

My story well I am getting married next year and going to start a family definitively before 30....A wise man told me to start a family quickly..so I am

 

[Nocturne]

You can hope that you don't need the surgery for a long time, but lying to yourself (and others) about it is a very bad idea. People believe a lot of things to make themselves feel better, but at the end of the day there is such a thing as reality, and a dangerously stenotic valve doesn't care about our fears and philosophies.

Our illusions can keep us warm on cold nights, but bad things happen when we try to use them as load-bearing columns.

 

[honeybunny]

The title of your post says you feel "so alone". Do you have family and friends to support you? Are you a single parent? What is it that makes you feel you are dealing with this by yourself? At the very least, you have us, who get it. You've gotten excellent feedback here and will get more going forward. So please don't think you are alone in this.

 

[Sheffy1124]

Hang in there, your feelings are completely natural. When it comes to the heart it's extremely important to be transparent with you Cardiologist. I had all of the same thoughts and feelings you have, and now, for the most part, I feel great. I play catch with my kids, do waterslides, and live life to the fullest. These surgeries are so common these days. I believe you have a lot of support on this site, stay strong, we're here for you.

 

[Kyyoungfarmer35]

I am too the same age had OHS when i was 35 to correct a lifelong issue. Have two kids who were 4 and 7 at the time. I had the same fears but had confidence and faith. Now 8 months after surgery I have been putting in long 60 hour plus weeks to plant a crop and am so glad I have the energy and stamina back. Last year I was having so many issues I would come home from church on Sunday after a long week and sleep all afternoon. Today after church I went with my family to an amusement park and spent 6 hours riding rides and playing. You're kids will appreciate that you will really be able to live again!!! Good luck!! We are here for you.

 

[jcgtok17]

Some great posts here. You are never alone in this connected world. My little ones were 12 and 9 when I had my AVR 6 weeks back, May 1st (at 50) and getting on the right side of it allows me to enjoy them more every day. JCG