My Father - help

[jjwb]

Thank you to everyone who wrote back to me. It seems that my father's cardiologist doesn't feel my father should have a 3rd valve surgery (this one would be a replacement) since he had complications after his 2nd repair (he had a bleeding ulcer & his kidneys & liver had trouble restarting after the surgery). His leak is now moderate to severe & they are going to try & treat him with heart strenghthening meds (cozar?) & a pacemaker (I am not sure why he wasn't given heart strenghtening meds after the 2nd surgery since his heart was significanlty weaker). No one can seem to answer the question of whether his valve is leaking because his heart isn't working properly or whether his heart is weakening due to the valve. His doctor also doesn't this my father should get the new pacemaker (double pump) since my father's EKG is relatively normal. Does anyone have any experience with any of this or know any good doctors in NY/NJ who can give a second opinion?

 

[medtronic of borg]

?s

?s

I would guess that the valve leaking is causing the weakened state of his heart. If his heart is "enlarged" that is what is going on. Drugs can strenthen the hearts contractions. Pacemakers are primarily for hearts electrical problems of the heart. However they may be considering it as a precaution. Not a bad one either.

 

[Nancy]

I've been thinking about your post for a few days. I'm very sorry that your dad is having these difficulties. I'm even more sorry that his doctor doesn't to seem responsive to his needs. I can understand reluctance when there are hard issues to deal with, but golly gee whiz, doing nothing about the problems seems terrible to me.

There must be some cardiologists and surgeons in the New York area who specialize in high-risk cardiac cases, there really are doctors that specialize in this. I'm hoping some of our wonderful NYC and NJ members can help you out with some names.

I will tell you about a cardio surgeon who helped my daughter's mother-in-law with a mitral valve repair and the Maze procedure. This woman also had very serious lung problems, so was in a risky category. The surgeon is at Stony Brook Medical Center on Long Island and one of her specialties is high-risk surgery.
Here's a link:

http://www.uhmc.sunysb.edu/surgery/dr-mclarty.html

My husband has a lot of extremely complicated issues, and if his doctors were drawing a blank when his life were at stake, I'd let my fingers do the walking.

 

[raelen]

Nancy, I went to the website of Dr. McLarty at Stoney Brook and her credentials are very impressive!!!! If I was in a quandry over a decision, I believe I'd trust whatever she told me!!

I'm learning a lot just from reading the posts on here. You people amaze me.

I'm just hoping I'm not facing surgery, but if I do require it I hope I can be as brave as all of the people on here seem to be!

Having had one open heart surgery, it isn't something I look forward to, but would do it if necessary!

 

[Arlyss]

Cardiac Surgeons at Mt Sinai in NYC

Cardiac Surgeons at Mt Sinai in NYC

You might consider Mt Sinai in New York City as a source for a second opinion also. I am familiar with their work through the medical literature, and also my husband's surgeon came from there to Los Angeles. Their web site mentions that they are a tertiary referral center with a reputation for handling difficult problems. I reviewed the staff members just now and could not determine who exactly might have the strongest expertise for your father, but calling and speaking to someone regarding your father should point you in the right direction. I am most familiar with the work of Dr. Randall Griepp, who is expert in aortic surgery.
Here is the web site address for Mt. Sinai
http://www.mssm.edu/cardiosurg/introduction.shtml

I am so sorry that this has happened to your father.

Arlyss

 

[Nancy]

Here's another option for you. I found out quite by accident, that Cleveland Clinic offers second opinions online. There is a process you have to go through, and it is not free, and I suspect has some proprietary aspects to it, but it might give you some answers and a path to follow for your dad. We have not used it, so cannot tell you first hand about it.

Here's the link:

http://www.eclevelandclinic.org/unAuthenticatedHome.jsp

 

[Arlyss]

Another Thought about Mt Sinai

Another Thought about Mt Sinai

I should have mentioned that Dr. Alain Carpentier is listed as an adjunct professor at Mt. Sinai. He has pioneered a great deal of work with heart valves. I understand that he is from France, and am not sure how his association with Mt. Sinai is structured. In contacting Mt. Sinai, you might inquire how he might be consulted.

Arlyss

 

[sylviayasgur]

hi jjwb!
i'm so sorry to hear that your father is having all these complications. how old is your father? where do you live?
i know that dr. colvin at nyu is supposed to be phenomenal. there are a bunch of really great docs/ surgeons at columbia presbyterian... dr. mehmet oz, dr. craig smith, dr. eric rose, and i'm sure others i'm not familiar with.
i will check my ny magazines that have all the best docs in ny and i will email you some names later, if you don't mind.
in the meantime, i'm sure others will come and add to these few...
good luck and be well, sylvia

 

[jjwb]

thank you to everyone who replied to my cry for help. my father is seeing dr. colvin of NYU this week, so we are keeping our fingers crossed. I have also been reading some pretty positive things about coreg which he just started. My father is only 62 & having had his first 3 grandchildren in the last year (with one on the way!) he certainly has a lot to live for.

 

[alicia]

I was diagnosed with cardiomyopathy and congestive heart failure after my mitral valve repair and they cant determine which came first. They compare it to which came first the chicken or the egg. I have surgery scheduled at Duke Medical on Jan 3 for a mitral valve replacement.

I hope your Dad gets well really soon and wont need surgery. Coreg is a good drug, it just makes you very tired when your first put on it until your body gets adjusted to it. They knew for a year my valve was leaking again and tried me on various heart strengthening drugs to no avail.

Good luck to you and the family.

 

[jjwb]

Dr. Colvin said he would operate again ( a replacement this time), but would need some tests done first (my father almost died from bleeding ulcers the last time). He said he would go in through the back. I don't know if my father wants a third surgery (it is a very scary thought). I was going to check out the website re: the Cleveland Clinic, too. It is kind of like deciding something in a vaccuum since we still don't have an answer as to why the valve keeps leaking.

 

[alicia]

JJWB, make sure you keep us informed of your Dads health. You can get lots of support and questions answered here. Are they going to do the minimally invasive surgery? Thats what they plan on for me and I am so thankful. Stay in touch with us.

 

[jjwb]

Hi Alicia - the 2nd surgery on my father was supposed to be a minimally invasive one, but for some reason Dr. Colvins couldn't do it. We are seeing Dr. Oz of Columbia on 1/27 to get his opinion re: a 3rd surgery. Thank you for responding - good luck with your surgery.