Help me please??????

[Gribur]

Hi there, My name is Larry and I am from Ontario Canada. I was born with Aortic Stenosis and have been monitored since the age of 8 months. I just had a yearly appointment and the news I have been dreading all my life was given to me and I will be requiring surgery. I have been lurking here waiting for permission to post and you are all great and knowledgeable. I am hoping I can give you a few of the numbers I was given and that you may be able to help me out a bit in understanding all of this. Since the cardiologist told me about the impending surgery I have been paralyzed with fear of doing anything. I have a beautiful soon to be wife (getting married on Sunday) and 3 amazing children 4,5 and 6. Everyday has been awful since the appt. I have cried, been scared, anxiety and sometimes calm, I feel like it is eating me alive and I cannot go on like this.
Here are some numbers and maybe you can help me by letting me know from your knowledge how bad this really is and what you think. I asked if I was going to drop dead and the doctor said "I don't have a crystal ball" and said to slow down I keep reading "SUDDEN DEATH" What the heck causes this!!! leaving a lot of room for an active imagination to go to work. I feel like sitting on the couch all day and doing nothing to raise my pulse or stress me in any way. I am definately depressed. I am normally active and upbeat but I feel as though the life has been sucked out of me.


Diagnosis June 2011:
Bicuspid aortic valve
Aortic stenosis
peak grade of 76 mmHg and a mean gradient of 45 mmHg with an
aortic valve area of 0.07 cm2 consistent with significant aortic stenosis. There was also a mild to moderate
degree of aortic valve insufficiency. He also has a dilated ascending aorta at 39 mm.


Recent Visit leading to conclusion of surgery April 2012:

There is normal sinus rhythm. His echocardiogram today shows
a dilated ascending aorta, a bicuspid aortic valve with critical aortic stenosis with a peak gradient of 141
mmHg, mean gradient of 76 mmHg, and a valve area of 0.7 cm2. There was concentric left ventricular
hypertrophy with preserved left ventricular systolic function.

On examination, his oxygen saturation is 97%. The right upper extremity blood
pressure is 110/70. The left upper extremity blood pressure is 95/60. The lower extremity systolic blood
pressure is 120 mmHg by palpitation

Sorry this is so long and if anyone would like any more info to help figure my situation out please ask. I know the best person to ask is my cardiologist but I am feeling that hey you have all been there or are there and although you may not be doctors you may help ease my fears or let me know if they are warrented. I have tons of stuff to ask and tell but I am hoping to have these issues gone over before anything else. Please help me out, thank you and best wishes
Larry

 

[JimL]

Yes, you know you should relax, and you can relax. Your numbers, as much as I can tell from them, are much, much better than mine were before my surgery. My valve opening was described as a pinprick, which had closed completely by the time of surgery. Talk about the nick of time. Rely on your cardiologist, get the surgery scheduled as soon as possible (after Sunday), especially for your own peace of mind.

 

[AgilityDog]

Your numbers do indicate surgery, and your left ventricle is working too hard - common and par for the course given the stenosis. This confirms the need for surgery.
I recommend you schedule your surgery as soon as you can, and get some anti-anxiety meds.
We've all been where you are, and you are in better shape than many pre-surgery. It's scary, yes, but you'll get through it.

 

[Bryan B]

Gribur,

It sounds like in my non-expert opinion you have reached the point where it's time for at least a surgical consult. Your stenosis has reached the critical stage and I am assuming they label it "critical" for a reason. Your left ventricle is dilating due to your heart working overtime to pump blood through your stenotic valve. Your ascending aorta is dilated (which is common with BAV disease) and will probably just get worse. Given all of these factors I'm assuming your cardiologist's thinking is that it's time to get this fixed now instead of waiting until it's an emergent situation.

As far as the fear, anxiety and depression I think a lot of us can relate to that after getting the news, even if we knew it was coming one day. I know I did. As someone suggested you should talk to your doctor about taking something to help with the anxiety until you have the surgery. Would you rather get this surgery behind you now while you are relatively healthy so you can be there for your soon to be wife and kids or do you want to wait until the last minute and run the risk of possibly not being there for them at all. If your valve shuts down or your ascending aorta ruptures that's it...game over.

It is normal to have fear and anxiety in this situation but you will get through it. Everyone here who has had OHS has gone through these feelings to some degree and we managed to get through it. That's why we are on this forum, to help YOU and others to get through it. :smile2:

 

[Bill B]

More replies in your other thread....

http://www.valvereplacement.org/for...192-Hey-everyone-Just-asking-for-some-support

 

[Richard Gardner]

I'm sorry you're having such a rough time. Getting news about our possible mortality can be upsetting. From what I've read here and my own experience, aortic valve replacement surgery is more or less "routine" if you can ever call open heart surgery routine. While all surgery carries risks, I believe the success rate of this operation is very high. When I asked my surgeon about the chances of dying he said about 1%. While I (strangely enough) didn't experience a lot of anxiety about my surgery, I have had anxiety issues in the past and have gotten assistance with this using medication. There may be support groups in your area that might also be of assistance. I know here in Syracuse, the hospital where I had my surgery has volunteers who have had open heart surgery who are available to talk to others facing surgery.
Good Luck,
Richard G.

 

[Gribur]

I just wanted to say thanks so far for all of the replies. I had been seeing the same cardiologist from the age of 8 months until last year, mok doc lee in London ontario, i guess he is regarded as a genius but is old school. The doc i went to see at the latest appt was Dr. Samuel Siu chief of cardiology for the city of London and previously was in Toronto. They will be testing for info on Replacement of my aortic stenosis and possibly the ascending aorta. He recommends pulmonary function tests , a carotid ultrasound to rule out any carotid disease and a CT scan to rule out coronary obstruction and evaluate the ascending aorta and make sure there is no coarctation or abnormalities of the subclavian. He said that after results from upcoming tests he will determine who the best surgeon is for my case and where the surgery will be, either in Toronto or London. I am not sure which has the most capabilities but I guess he will know best. I was emailed a lot more numbers (might as well be Japanese) as I have no clue what they mean. I will post them following this and maybe somebody fluent in Cardiolonese can maybe do some translation. Take care everyone and Talk soon, here are the numbers and info, which I am sure if you were to reposition properly could be used to calculate the trajectory of a rocket to the moon.
Larry


Interpretation Summary
There is mild concentric left ventricular hypertrophy.
Left ventricular systolic function is normal.
Severe valvular aortic stenosis.
Mild to moderate aortic regurgitation.
Mild dilatation of the ascending aorta.
No Doppler or imaging evidence of an aortic coarctation.
Left Ventricle
The left ventricle is normal in size. There is mild concentric left ventricular hypertrophy. Left ventricular
systolic function is normal. Ejection Fraction = 60-65%. Diastolic function is normal. No regional wall motion
abnormalities noted.
Right Ventricle
The right ventricle is normal in size and function.
Atria
The left atrial size is normal. Right atrial size is normal. The interatrial septum is intact with no evidence for
an atrial septal defect.
Mitral Valve
Lawrence Griffin 2012-04-24
http://lhscxcelara/getReport.asp?Stu...01&modality=us[2012/04/30 1:22:32 PM]
The mitral valve is normal in structure and function. There is no mitral valve stenosis. There is mild mitral
regurgitation.
Tricuspid Valve
The tricuspid valve is normal in structure and function. Insufficient TR doppler signal to estimate RVSP.
There is trace tricuspid regurgitation.
Aortic Valve
The aortic valve is bicuspid. Thickened aortic cusps. Calcified aortic cusps. Severe valvular aortic stenosis.
Mild to moderate aortic regurgitation.
Pulmonic Valve
The pulmonic valve is normal in structure and function. Trace pulmonic valvular regurgitation.
Great Vessels
The aortic root is normal size. Mild dilatation of the ascending aorta. No Doppler or imaging evidence of an
aortic coarctation.
Pericardium/Pleural
There is no pericardial effusion.
Cardiac Rhythm
The baseline ECG displays normal sinus rhythm.
MMode/2D Measurements & Calculations
IVSd: 1.2 cm
LVIDd: 4.9 cm
LVIDs: 2.7 cm
LVPWd: 1.2 cm
LV mass(C)d: 229.9 grams
LV mass(C)dI: 119.0 grams/m2
Ao root diam: 2.9 cm
LA dimension: 3.2 cm
asc Aorta Diam: 3.8 cm
LVOT diam: 2.3 cm
EDV(MOD-sp4): 176.9 ml
ESV(MOD-sp4): 57.6 ml
EF(MOD-sp4): 67.4 %
EDV(MOD-sp2): 142.6 ml
ESV(MOD-sp2): 69.4 ml
EDV(MOD-bp): 161.2 ml
EF(MOD-bp): 59.6 %
SV(sp4-el): 122.8 ml
Doppler Measurements & Calculations
MV E max vel: 81.6 cm/sec
MV E/A: 1.8
Ao V2 max: 595.3 cm/sec
Ao max PG: 141.8 mmHg
Ao V2 mean: 407.4 cm/sec
Lawrence Griffin 2012-04-24
http://lhscxcelara/getReport.asp?Stu...01&modality=us[2012/04/30 1:22:32 PM]
Ao mean PG: 75.8 mmHg
Ao V2 VTI: 143.1 cm
AVA(I,D): 0.79 cm2
AVA(V,D): 0.71 cm2
AI max vel: 436.6 cm/sec
AI max PG: 76.3 mmHg
AI dec slope: 253.4 cm/sec2
AI P1/2t: 504.6 msec
LV V1 max PG: 3.9 mmHg
LV V1 mean PG: 2.5 mmHg
LV V1 max: 98.5 cm/sec
LV V1 mean: 74.8 cm/sec
LV V1 VTI: 26.3 cm
SV(LVOT): 113.1 ml
Reading Physician:
Dr. Samuel Siu on 2012-04-24 06:48 PM
Ordering Physician: Siu,S.
Referring Physician: Li,Mok-Dok; Emond,M.


Not sure if it is appropriate to post in two different sections of the forum, but if there is any issue please let me know. I am just trying to gather as much info as possible. Thank you everyone.

 

[Mentu]

Hi, Larry, welcome to VR. Looking over your test results one can only come to the conclusion that you should listen to your doctors. Your results are actually pretty normal for someone with severe stenosis yet in good health overall. This should indicate that you are likely to respond very well to the valve replacement. I know there is a temptation to look at surgery as an awful thing, Larry, but you have been living with the awful thing. The years of anxiety caused by your condition and the fear of the future as well as the limits those place on your life are awful. Surgery is your way out. My Grandfather died with sever aortic stenosis while in his 40s. My Uncle was the first in our family to have a valve replacement and died in his 80s of problems unrelated to his heart valve. Now my new valve offers me the prospect of living a normal life unlike so many in other places and in times past.

The idea of surgery is distressing but for those of us here in VR, it is our only door to a future. I would suggest that when the thought of surgery is becoming difficult try to consciously stop and instead think about the results. Think about the years you will have with your family that you would otherwise be denied. The early death of the Grandfather I barely remember left a hole in my life and that of my cousins. Your family need not experience this kind of untimely loss. Surgery does carry risk although for you it is probably very small. The discomfort of recovery, however, seems more than balanced by the gift of decades of healthy life which seems to me to be a wonderful thing to contemplate.

Let us know how we can be of help.

Larry
Tulsa, OK

 

[Gribur]

Wow, yesterday felt alright, today , not so much. I have been looking at my numbers and comparing to results on google and worrying about aneurisms and feeling deppressed and thinking of my soon to be wife and kids and just annoying the hell out of myself lol. I just need to make it to surgery, live through surgery and then be in the percentage that get through recovery and live another 50 years. Wow, not too much to dwell on. Anyways, anybody who feels compelled to look at the numbersd i posted and comment on your thoughts using your knowledge please do. I hate not making the choice, and having to do things, I do not like this scenerio at all.
Huge vent guys, sorry
Larry

 

[Greg a]

Larry I'll meet you in Woodstock for lunch anytime

 

[FC in Texas]

Hang in there Larry. A few of my stats were pretty close to yours, especially the pressure gradient. When I was about a month out from the surgery, I Was pretty symptomatic, SOB, etc and my anxiety level was high, much like yours. I worried I might not make to the surgery, like worried about it every hour. I am now 8 weeks out from my AVR. I just had my last follow up with my surgeon this week. He said "forget this ever happened" and "go be a normal person". This may sound crazy but for me the first month after surgery was better than the month before the surgery. Reread Mentu's post, one of the best responses I have read on this forum. Surgery will fix this and you will be a new man. Trajectory is everything.

 

[pgammo]

Larry,

I am 25 years old and married with two daughters and a son due in July. I found out about my bicuspid aortic valve leak 2 months ago and will be having my valve replaced June 1st. At first, I was extremely stressed/depressed/pathetic/lethargic. I did not want to die and leave my family without a husband and father, but I have been assured by this website and my doctor that this is a pretty common and very successful procedure; I believe the mortality rate is less than 1% and even less then than if you are young and don't have any other health issues.

In the end, we will all fall victim to the ultimate statistic: 10 out of 10 of us will die at one point or another. What helped me was putting my faith and trust in my Lord and Savior Jesus Christ and repenting from my sins. Scripture tells us to be anxious for nothing and to endure all things for God's Glory; Christ promises rest to all of those are weary and burdened as long as you turn to Him. He also promises to help us carry our burden when it becomes too heavy for us. I have been a sinner and an abomination to our Lord my entire life, but through Christ, I have been redeemed and made blameless; as a result, I have inherited eternal life and will pass to His Kingdom when He is ready to take me.

I pray to God daily to deliver me from this surgery, as in heal my heart, but at the same time, hasn't He already given me a second chance by revealing this problem to me? I believe so! You see, we are already blessed by God for knowing about our condition. Thousands of people die every year from heart failure because they were unaware they had any ongoing issues; we are aware of our issues and getting them resolved. Even being alive in a time where OHS is possible, wow! That, my friend, is a blessing.

There are two possible outcomes that I face: waking up after surgery to my wife, daughters, and family OR waking up after surgery to my Creator, Lord, and Savior. Either outcome is a blessing! As a Christian, you are promised eternal life, assuming you believe correctly. Once you become Christian, you will no longer fear death or the thought of Hell, as you will find the ultimate comfort in Christ Jesus.

Visit my blog for more information or if you have questions! http://petergammo.blogspot.com/

God bless you, my friend. I pray that you have an incredibly successful surgery and a pleasurable recovery. You ARE going to be the husband and father that you long to be!