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?

dean 34 uk

 

[epstns]

Dean - I think your reluctance to fully answer the doc's questions is pretty normal. We often try to "tough it out" but in this case I advise you not to do so. Your doctor needs to know exactly what you are feeling. You can also share your thoughts about wanting to delay surgery, but the doc needs to know what your symptoms are (and fatigue is a symptom) in order to properly stage your treatment. Remember, if you wait too long and your hear becomes damaged, then even if you did have surgery you might not have a full recovery.

The other thing to keep in mind is that in today's operating rooms, the survival rate for heart valve surgery is somewhere around 98-99%. Unless something goes really badly, and it vary rarely does, you will come through this just fine. Just think of how much time you will have and how great that time will be after you get the valve replaced.

 

[ottagal]

Dean,
Welcome. You have found the right place. When we get this news, we are all scared. This is normal. You received some wonderful advice from epstns. You will get through this. Look at all of us who have survived and are thriving. You will too.

 

[ClickityClack]

epstns is right - better to get the valve replaced before there is irreparable damage to the heart. The smaller your valve gets, the more you heart has to work to get adequate blood through it.

I'm a bit over three weeks out from ascending aorta and aortic valve replacement and I'm 38. I had the same fear as you. Granted my kids are old enough to remember something (5 and 7) but I had the idea to record videos for them. I ended up not following through on it. I got through one for my wife and I just felt like it came out too morbid. It wasn't the type of thing I wanted to leave my kids. Then I got to thinking - they'll go on fine without me if need be. I realized it was just the way I tried to handle my fear of it. Anyway, it's an option if you want.

You're young - you'll make it through surgery just fine. I had mine done on a Monday and was discharged that Thursday. It's normal to be scared but being on the other side, I have to say a huge portion of my fear was misplaced.

 

[epstns]

At times like these, I think of an historical quote from the late, great President Franklin Delano Roosevelt, who said "The only thing we have to fear. . . is fear itself."

We have to constantly remind ourselves that although heart surgery is a life-changing day for the patient, it is "just another day at the office" for the surgeon and all of his team. They do this all the time. We do not.

Choose your team wisely, then trust in them.

 

[sood]

Dean:
Your feelings are totally normal. I was 35 when I decided to have OHS, with a 3 year old at the time. It was the toughest decision I had to make in my life, but one I am glad I did make. The surgeon and cardiologist said I could have held off based on the data they were seeing regarding my bicuspid aortic valve and 4.9 cm ascending aortic aneurysm. But I listened to my body and it was telling me there was something wrong. After my operation my surgeon said I made a great choice, he said the aneurysm was in worse shape than he initially thought. My surgery was 4 years ago, feel free to PM me if you want to talk.

 

[sood]

Dean:
Your feelings are totally normal. I was 35 when I decided to have OHS, with a 3 year old at the time. It was the toughest decision I had to make in my life, but one I am glad I did make. The surgeon and cardiologist said I could have held off based on the data they were seeing regarding my bicuspid aortic valve and 4.9 cm ascending aortic aneurysm. But I listened to my body and it was telling me there was something wrong. After my operation my surgeon said I made a great choice, he said the aneurysm was in worse shape than he initially thought. My surgery was 4 years ago, feel free to PM me if you want to talk.

 

[Deanuk1982]

Thanks everyone. I faced my fear and was honest, I'm being referred to the surgeon to discuss the next steps. I'm scared but have done the right thing I know.

 

[ZechariahLi]

hey dean, I'm feeling exactly the same way as you. I'm 28 and I have a 25 yo wife, a 6 yo son and a 3 yo daughter, I was recently diagnosed of BAV and severe AR, my heart is enlarged but I think I'm without symptoms. Similar like you, I'm trying to hold off the surgery as long as it can be but not to the point it would cause permanent damage. I'm proud that your were honest with your doctor. I went through a medical checkup recently for an employment and I struggled to tell them the truth, but I'm glad I did, and they could access if I'm suitable for the new job environment. It's a tough thing to do in life, putting ourselves under the knife, but Steve was right, it's just another day for them.

I'm not gonna lie to you, I'm afraid, worried, anxious, and relate everything uncomfortable to my heart, but these are beyond us, we can't do anything about them, the surgeons can, the surgery is to save you. And you are not alone. Would be glad to talk to you! 

 

[neil]

hiya dean and zech, some good advice already given, dean you from the uk? what part?

 

[dick0236]

To Deanuk1082, ZechariahLi and any other young men/women facing OHS. A British statesman, Winston Churchill, was quoted during WW2 with "the only thing we have to fear is fear itself". That was true then and is still true. I can't remember my pre-OHS feelings anymore....but I imagine they where like yours. I have visited +/-500 OHS hospital patients(primarily bypass and/or valve replacement) between the ages of 20 and 93 over the past 18 months. Almost all of these where post op and looking forward to going home after a few days in recovery. I run into OHS survivors on the golf course or gym frequently and returning to a normal life seems to be the norm for those that go thru this surgery. I am personally sure that I would have been dead long ago had I not had the surgery.......I'm glad medical science made my life giving alternative possible.

Now I am actually a tiny bit concerned that my valve will be 50 years old in six weeks(Aug 16) and that my surgeon had told me my valve was designed to last 50 years........what then??.........LOL.

 

[cldlhd]

To Deanuk1082, ZechariahLi and any other young men/women facing OHS. A British statesman, Winston Churchill, was quoted during WW2 with "the only thing we have to fear is fear itself". That was true then and is still true. I can't remember my pre-OHS feelings anymore....but I imagine they where like yours. I have visited +/-500 OHS hospital patients(primarily bypass and/or valve replacement) between the ages of 20 and 93 over the past 18 months. Almost all of these where post op and looking forward to going home after a few days in recovery. I run into OHS survivors on the golf course or gym frequently and returning to a normal life seems to be the norm for those that go thru this surgery. I am personally sure that I would have been dead long ago had I not had the surgery.......I'm glad medical science made my life giving alternative possible.

Now I am actually a tiny bit concerned that my valve will be 50 years old in six weeks(Aug 16) and that my surgeon had told me my valve was designed to last 50 years........what then??.........LOL.

Regarding things mechanical in my experience if something is going to break it usually happens early on so probably nothing to worry about.

 

[mikeccolella]

Like your Churchill quote ****. I had surgery 4 months ago and the worst part by far were my thoughts about it. Good luck to you Dean and yes its true heart surgery has became relatively routine and very effective.

 

[pellicle]

Regarding things mechanical in my experience if something is going to break it usually happens early on so probably nothing to worry about.

Agreed. Probably good for another 100,000 miles before you need valve guides and a new head dick0236

 

[carolinemc]

deanuk1982, you are not alone. I have the same problem of the aortic valve. I had to have it replaced at age 36, St. Judes' leaflet aortic valve. I am now 52 and still dong fine since surgery. You are not alone, that there are many of us with the same condition. You will be fine, just try harder to keep positive. Just keep hanging in there also. And you are in a great place to ask questions with people with same experiences.

 

[cldlhd]

Agreed. Probably good for another 100,000 miles before you need valve guides and a new head dick0236

If it starts acting up just give it a little wack with a persuader, a ball peen hammer should do the trick....

 

[Deanuk1982]

hiya dean and zech, some good advice already given, dean you from the uk? what part?

Im from Yorkshire Neil. How about you?

 

[Deanuk1982]

To Deanuk1082, ZechariahLi and any other young men/women facing OHS. A British statesman, Winston Churchill, was quoted during WW2 with "the only thing we have to fear is fear itself". That was true then and is still true. I can't remember my pre-OHS feelings anymore....but I imagine they where like yours. I have visited +/-500 OHS hospital patients(primarily bypass and/or valve replacement) between the ages of 20 and 93 over the past 18 months. Almost all of these where post op and looking forward to going home after a few days in recovery. I run into OHS survivors on the golf course or gym frequently and returning to a normal life seems to be the norm for those that go thru this surgery. I am personally sure that I would have been dead long ago had I not had the surgery.......I'm glad medical science made my life giving alternative possible.

Now I am actually a tiny bit concerned that my valve will be 50 years old in six weeks(Aug 16) and that my surgeon had told me my valve was designed to last 50 years........what then??.........LOL.

thanks for taking the time out to post.

That quote is so true. I've literally worried my whole life about this time and I now regret wasting so much of my time on the what if's, when will it happen, is it happening right now etc. Weirdly, now know that I know what is required my mindset has changed to a more positive one.

I know this may sound strange but I lost my mum to cancer and I know that she (and us family members) would have loved the prospect of an operation with a 98% success rate to make things ok again. Like my cardiologist said, if you have a bad tooth, you go get it fixed and then get on with life. That's how I'm treating it.

 

[Deanuk1982]

Dean:
Your feelings are totally normal. I was 35 when I decided to have OHS, with a 3 year old at the time. It was the toughest decision I had to make in my life, but one I am glad I did make. The surgeon and cardiologist said I could have held off based on the data they were seeing regarding my bicuspid aortic valve and 4.9 cm ascending aortic aneurysm. But I listened to my body and it was telling me there was something wrong. After my operation my surgeon said I made a great choice, he said the aneurysm was in worse shape than he initially thought. My surgery was 4 years ago, feel free to PM me if you want to talk.

thanks for the reassurance and for taking the time to reply. I feel the time is right as much as it does scare me, but the risks are too great to ignore. It's good to know that these thoughts are normal and hearing your story backs up my decision. I hope you and your family are enjoying life.

Thanks again.

 

[Deanuk1982]

Apologies if I've not replied to everyone directly. To those who I've not I sincerely thank you for taking out the time to reply, it's great to know I'm not alone.