My Dad

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ITs been months since I wrote. My Dad went to his heart doc today for his echo results again, his 6 month test. It was not good, the valve has gotten worse and his walls have gotten thick. Also, the doc said to my parents that he cant believe my dad is not fainting or having a hard time breathing. My father works 60 plus hours a week and labor work. So, he told my parents he would give him a stress test in a week or so to see how the heart is with that test, He also said that if he needs the surgery it will be HIGH RISK because of the stroke my Dad has 12 years ago. I sm so sad, so is my mom. I am so worried. I cant even make dinner for my husband right now. How is my Dad walking around and not having these symptoms with a bad heart? Why is it to HIGH RISK after a stroke? I am scared. I am so scared.
Any advice, or insights?
 
If it looks like he needs surgery, I would explore the places that are always dealing with high risk patients, such as Mayo or Cleveland Clinic for opinions. I'm sure others can give you more names.

I would also say to try and take it a step at a time.

Please know that I will remember you Dad in my prayers.
 
Jojo, I'm sorry for what you and your folks are going through. Also, I've forgotten what your dad's diagnosis was. However, years ago my dad was passing out with exertion and suffering from a condition called hypertrophic cardiomyopathy and the cardio wanted to see what was happening in his heart by administering a stress test; it ended up causing his heart to stop. It was traumatic and dramatic and it took three shocks with the paddles, and increasing power, to get his heart started again and frightened his cardio half to death.

You asked for advice/insight: I wonder if the cardio could recommend a safer test.
 
Hey JoJo! I am so sorry you are going through this...I did the very same with my mom. My mom's surgery 3 years ago was very high risk-she waited WAY too long to have her valve replaced. She was fainting beforehand, and was very short of breath-could barely walk across the street. She had some bumps in the road, but she is much better, even for having chf along with it. Your dad sounds like one tough cookie:) Surgery I am sure will make him feel a lot better. You are in my prayers.....Deb
 
Both my mom and dad really like his cardio doctor, so going for a 2nd opinion probably wont happen. My father is not running out of breath or fainting or things to that nature. So the stress test is a bad thing? UGH. I know he is going to have it...I am real confused and so upset, this is eating me up since 4:45 this afternoon. My mom called me again to talk more. I dont understand if the echo is showing it that bad then why not schedule the surgery already??? The doc said to my mom something like I JUST HOP HIS HEART DONT POP. WHy would a doctor say something like that? My parents really like him though. SO, my worries now, I will think about my Dad constantly, day in and out...while he goes to work and everything...

Does anyone know ANYONE that had open heart surgery after a stroke? Its been over 10 years since his stroke...what makes this high risk? Where do I find this info? I am so scared...
 
my parents went for a light walk tonight...nice and slow...i talked to my dad, he said he was a walking miracle and they can put that on his tombstone, He is nuts, LOL...he tries to make us laugh I think...

I think he will be ok. I need to have faith...I love my parents so much...
 
jojo-I have had 1 OHS and will have another in 2 weeks, I have never had a stress test. My valve has been monitored with echo and then when it is time for the replacement you have a heart cath. This measures the actual size of the valve and the pressures are monitored. They can also do a cinefluroscopy that shows how the valve is opening and closing. There are risks to stress tests and catherizations however before surgery the cath is non-negotiable why not go straight for the gold standard of diagnostics? Then you'll know for sure where the valve is in terms of size. The cardio that they love can do this for them. In the meantime, I have watched my mom go through 2 OHS within one year and I feel your pain. Hang in there!
 
I was just going to say what Queenie said-maybe your dad could ask for the cath and no stress test? He will have a cath anyway-might as well skip the middleman;) Do have faith...we are here for you!! Deb
 
I'm sorry for all your dad and your family are coping with and certainly understand the stress. I had a second OHS in February to have valve replacement (and am doing very, very well). I also had enlargement and it was no problem at all for my surgeon. Actually it is fairly common for us valvers to have some enlargement pre surgery and we hope for reduction of it post op.

Though I have had stress tests in the past, my doctors all said, No stress test pre surgery. Just a TEE and angio. Your dad certainly can speak with his doctor to ask if he can omit the stress test. It is a reasonable request.

Good luck. Let us know how things go.
 
JoJo-

It is a good thing that your dad is in obvious good physical shape, well, except for his heart problems. That means a lot for a good recovery. My husband was very athletic and although he had multiple and very serious medical problems including two mechanical heart valves and many surgeries, he was able to weather some pretty nasty storms over a long period of time.

He had several Persantine or Thallium stress tests which are chemical rather than on a treadmill, and he did well with those. The cardiologist was right there in the room so if anything were to happen, the doc could take care of it. But it never did. He couldn't do the treadmill test, they did try one time, but had to cancel it. So ask about that type of test.

Just because your dad has been told he is high risk, doesn't mean that he won't have a good result. Heart surgeons can and do operate on high risk cases all the time. It is the nature of their business. It would be important that your dad seek out the best surgeon available for his surgery, one who does a good number of high risk cases.

Best wishes.
 
The Best Person to decide IF and WHEN to have Heart Surgery is a Heart SURGEON.

Surgeons like to get in and FIX the Heart BEFORE there is Permanent Damage. Old School Cardiologists often like to wait for symptoms (i.e. Signs that the heart is being damaged).

Some of the Best Surgeons in the Country are at Brigham and Womens and Mass. General Hospital, both in Boston.

The Best High Risk Surgeons are found at Top Rated Heart Hospitals such as B&W and MGH.

I hope your dad will get a referal to such a surgeon and let him decide what to do and when.

Hopefully some of our members who have had surgery in Boston will provide the names of the Top Surgeons they know.
 
Welcome

Welcome

I appreciate all the kind words and advice. I really dont think my Dad is going to get a 2nd opinion, not right now anyway, its still a bit of a shock for all of us I think. I am so worried, but something in the back of m head tells me that things will be OK. I am just worried with the waiting period. I dont like that part. I still wuold like to here experiences from all, espeically if anyone has known anyone that has had valve replacment with a slighlty enlarged heart already.

Welcome Jojo,
You have found a wonderful place to get your questions answered and receive encouragement. We are so happy you found this site.

I have an enlarged heart due to severe regurgitation. I am having surgery in August to replace my aortic valve. I first went to the cardio in September last year or so, at the time my heart wasn't enlarged that much and my valve was still functioning, I was put on Lisinopril, to lower the blood pressure, but it didn't work and my heart enlarged from 5.1 to 6.2 in a little over 6 months. I assume that is bad because my cardio referred me the next week to Ann Arbor.

Your dad's heart may not be as enlarged as mine and also his valve may still be functioning ok, like mine was last year. I agree a second opinion especially with a surgeon is a good idea. I had a 2nd opinion and then she consulted with 2 other Dr.'s. It gave me some piece of mind finally. Sounds like your dad already has it. My surgeon said I should have the surgery between 2-4 months after I found out it was enlarged to 6.2. You may want to have his cardio explain to you and your mom how enlarged his heart is and how his valve is doing. That may help ease both of your minds.

You and your family are in my thoughts and prayers. I wish you all the best.

~Erica
 
Jojo- I was told I was very high risk due to lung problems and had a remarkably uncomplicated outcome with Dr. Lawrence Cohn at Brigham & Women's in Boston, not too far from you. Their brand new facility opened the week after we left in May, so it would be quite the state-of-the-art now........and I thought the aftercare was marvelous in the old building. Very knowledgeable people! Travel was worth it.
 
Thanks everyone again. I think my dad would have his surgery at Danbury Hospital, from what I hear its a great surgery facility for the heart. Some top surgeons from NY perform there now.

I dad is going to listen to his doc and take the stress test, I know my dad.

He works hard labor all day for work. I am going to worry about him more now.
 
Did I mention my dad also has sever sleep apena, and he doesnt use a cpap, he tried it, but it makes him feel clausphobic...So if he has this surgery, how does he breath?

I am going to work soon, Its hard to not think about my dad and the what ifs. Thats all I do is think what if this and what if that...

I dont understand, if his valve is that bad and there thickening in the walls, how come they cant just do the surgery?
 
The Best High Risk Surgeons are found at Top Rated Heart Hospitals such as B&W and MGH..

Where is B&W and MGH? These acronyms have a sharp learning curve around here :)

Did I mention my dad also has sever sleep apena, and he doesnt use a cpap, he tried it, but it makes him feel clausphobic...So if he has this surgery, how does he breath?

I am going to work soon, Its hard to not think about my dad and the what ifs. Thats all I do is think what if this and what if that...

I dont understand, if his valve is that bad and there thickening in the walls, how come they cant just do the surgery?


jojo, about the wait: They want to let people live their lives uninterrupted until the replacement surgery. They also weigh the risks of the surgery against the risk of waiting. So probably what's happening right now is that the risk of waiting isn't high enough yet to justify your dad's operation. These risks and wait times vary depending on a surgeon's experience, his success rates, the patients comorbidities, and the status of the valve/aorta. So while I might have valve replacement at a gradient of 50, your dad might be forced by a lot of surgeons to wait until 75 or so. Even though your dad's gradient is worse than mine, he's still at more risk from surgery than me (a 25 year old with no other substantial comorbidities). The wait is frustratingly speculative and kind of unscientific. In my quest for myriads of opinions from surgeons on my condition, I've found that the better they are, the less they tend to wait. I've read literature where it states as much too. There's some good nuggets of info here to read about valve choice, wait times, etc.

When your dad has surgery he will be intubated. A machine will do the breathing for him. Intubation sounds scarier than it is. I've been intubated (not for open heart surgery) and in my experience it's just unpleasant and painful until it's out. It probably will cause some anxiety, but he will be heavily sedated and might not mind. I personally will be pleased to feel the pain of the tubation and will gladly accept it as a reminder that I'm alive.

Just an aside and my two cents: Your dad might want to get his breathing issues under control before surgery. I think that even if it makes him uncomfortable he should make his best effort to use that cpap machine. If he's been prescribed other medications for his breathing he should take that too.

I wish you the best, and just know that alot of us are in the waiting room with ya. It's a scary place to be but the people here are absolutely awesome to be in touch with when you're waiting.
 
Where is B&W and MGH? These acronyms have a sharp learning curve around here :)

See my Previous Paragraph (copied below):

Some of the Best Surgeons in the Country are at Brigham and Womens and Mass. General Hospital, both in Boston.

The Best High Risk Surgeons are found at Top Rated Heart Hospitals such as B&W and MGH.

B&W = Brigham and Womens
MGH = Massachusetts General Hospital

JoJo -

Your Dad needs to understand that there is a Wide Range of Skills among Heart Surgeons. MANY surgeons do a fine job on (relatively simple) ByPass Surgery and even First Time Valve Replacement.

For High Risk Surgeries, it is best to find a Surgeon with LOTS of experience performing the procedure your dad needs and experience dealing with his co-morbidities.

Bottom Line: Not All Surgeons are created EQUAL.

I recall 2 of our members who went to 'good local surgeons' that either Botched their surgeries or discovered their patients were 'way over their heads' and they didn't have the skills needed to fix them, refering them to a Major Heart Center where more experienced surgeons fixed them (after surgeon #1 performed a useless opening of the chest).

Bottom Line 2: Patients either need to learn more about their disease and what they need in a surgeon or Really Trust their Cardiologist to refer them to an appropriate surgeon who has the right experience and skills.

Bottom Line 3: IMHO, Surgeons have a better background for judging WHEN to perform surgery and what needs to be done than Cardiologists whose primary function is to Diagnose the Problem. All that Cardiologists can do for Valve Patients is offer them medication which can SLOW the progression of their Valve Disease but NEVER CURE IT.

When you have a plumbing problem, you call a plumber.
CardioThoracic Surgeons are the plumbers for the human plumbing system.

As you have stated several times, you Dad really trusts his Cardiologist (and apparently doesn't want to be involved in the decision making). I hope this cardiologist is worthy of that trust.
 
Sorry Al, I'm half awake.

I agree with Al though. The recurring theme here has always been to find the most experienced and succesful surgeon possible. This is especially important when dealing with comorbidities.
 
Well, as far as a surgeon goes, thats up to my dad, I am there for the support with whomever he chooses. I have faith for the heart surgeons in Danbury as they do the high risk surgeries as well.

My fear is NOW until the surgery. He is working and doing this thing, how come he has no symptoms? Even his cardoloigst said the same thing, with the results from his EKG, he is surprised he is not fainting. This scares me so much and I know it scares my mom pretty bad too.

So, if they are holding off on this surgery that means they are not that experienced? I am so confused...
 

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