Suzanne's Heart Valve Journal

Christine pittelli posted a note for Suzanne that says: Suzanne I am just seeing your note. Debbie answers the phone for Dr Stewart, so you would talk to her first and explain your situation to her.

Christine pittelli posted a note for Suzanne that says: Hi, my name is Christine. I highly recommend Dr Allen Stewart, Mt Sinai. Explain your situation to his assistant, who is extremely responsive, and go from there. You won't be sorry that you called. I hope this is a help, and good luck.

Suzanne Kosakowski posted a note for Suzanne that says: Jay and Patti, thank you for that nice note.What a surprise. Wonder how you knew I was on this site. Problem is I forgot my password so I can't get on to update. The site says it will email me the info to change my password but it never arrives. Hoping someone sees this and can help me with it.

Jay and Patti Conant posted a note for Suzanne that says: Hi Suzanne, Patti and I wish you all the best wishes with your upcoming surgery. We will keep in touch and hope that you know that the Conant families up north are all sending hugs.

Warmest regards,

Suzanne, when I went for my second opinion I went to UCLA. It has a combined cardiology/surgery center. The doctors are on salary, they aren't paid "by the surgery". UCLA is ranked in the top 10 nationally for heart stuff. They matched me with a cardiologist / cardiac interventionist for the initial consult. Overall, their approach is as a team, so he handed me over to a surgeon after my cath. It worked really well. So, if you can find a center of excellence to get your second opinion from you might want to try that route. You can often self-refer (call them up and ask for an appointment) or have your current general practitioner make the referral. Best wishes -- DVB

Hey Suzanne, welcome back! If it were me I'd get a second opinion. If it's the same, then I'd have confidence that it is a good opinion, if it is different then I'd have the opportunity to make a course correction. Good in either case.

As to multiple valve issues. The Guidelines (see my June 30, 2012 journal entry) discuss various multiple valve situations. It is complicated, but the guidelines generally recommend to treat the dominant problem primarily. For example, aortic stenosis can lead to some mitral regurgitation as the heart remodels its shape and function to accommodate the aortic insufficiency. In this situation imagine that someone's heart expands (dilates) in response to aortic stenosis. Then that stretches the mitral apparatus and the valve may not close properly, leading to regurgitation. In turn, that regurgitation could lead to excess pressure in their left atrium which receives blood from the lungs. That would make it harder for their heart's right side to pump blood into the lungs and could cause problems with the pulmonary and tricuspid valves. Sort of an upstream cascade of effects. Fixing (replacing) the aortic valve could then remove the driving force for these bad effects and that person's heart could remodel back toward normal, reducing the leakage in the mitral and other valves. So, just because multiple valves are leaking it doesn't necessarily mean that they all have to be surgically repaired or replaced. The details matter and so there are probably various tests in your future.

You are smart to be linking up with CC or another center of excellence. Outcomes are much better at high volume, experienced surgical centers, very important when yours is a complicated and less common situation.

Take care Suzanne -- DVB

Suzanne, Sounds like we are somewhat similar. I have not yet gotten a 2nd opinion as I am waiting for my second echo. I, also, didn't know anything was wrong until late last year. I was experiencing real shortness of breath and thought it was as the result of stress. Thru various testing, I discovered the leaking valves. What a surprise! The SOB subsided but has returned and now I am experiencing heart beat/pulse sounds in my left ear at night - usually in the early mornings. Do you have symptoms?

I could be wrong but I believe that they work on all the valves (if they require it) at one time while they are in there. Yikes!!!

Suzanne, I also have multiple leaking heart valves - tricuspid 2+, mitral 3+, and aortic 2+. My doc has me in a wait and see mode as well. We are repeating my echo in August. I am interested in your journey and your findings. Good luck and I hope you find words of wisdom that bring you some sense of comfort (such as it is). Janelle Kimball

Hi Suzanne,
My surgery was to replace my mitrial valve and the maze procedure. As well as a repair to an artery.

Yes they went in directly under my right breast. No they did not break any bones. Now I did have scar tissue from my surgery at 3 months and they had it cut thought it. But no cardiologist wanted my to have the traditional surgery so I was actually pointed to Miniumally invasive and Mt. Siani and Mayo is where I was directed. By both my cardio and the one at UM.
The way you know how many surgeries they have done is by asking them. Any surgeon that does this type of surgery will take your insurance. I cannot stress enough how important it is to have the right surgeon for this is. You do not want a small hospital surgeon for this. Go to NY. You can go online at Columbia or Mt. Siani or Cleaveland or Mayo and find a ton of information on this procedure and the surgeons that do it.
I hope I was somewhat helpful..Jennifer

Hi Suzanne -

The big tests are the cardiac cath (they go in through your leg with a camera up your artery, sounds scary but really not a bad test at all), which you will need at some point prior to surgery and probably a CT scan (basically an MRI but you will probably need to get color so that involves an IV) to check on your aorta. The other test is a TEE where they go down your throat. I believe this is usually done during surgery so you are already asleep.

I met with my surgeons when all I had was an echo. We knew from that I needed to replace my aortic valve. The surgeons mentioned the CT scan because they had concerns about my aorta, and it turns out I needed that replaced.

When you meet the surgeons, they will tell you the possible options, then the ct cath and cat scan will help fill in the blanks. For example if you need a bypass or a repair of your aorta, then I believe your only option is a full sternotomy. I was planning a mini sternomoty (3" - 5" scar) until I learned I needed my aortic root/lower ascending aorta repaired which meant I needed a "full monty" (full sternotomy).

You can either let surgeon drive the decision or hospital drive the decision. Usually, the top docs are at the top facilities. I think you can get recommendations here, or use the surgeon locator, or perhaps your cardiologist will help with the decision of surgeons outside of your area.

Hope this helps.
-Mitch Friedman

Hi Suzanne,
I had Miniummaly invasive surgery.
Since I live in South Florida I went to the best in Miami which is Mt Siani. You have terrific hospitals in NY with Mt. Siani and Cloumbia. If you don't like those Mayo and Cleaveland. With this type of surgery it's all about the Surgeon. Make sure they have done over five thousand which is why I reccomend these hospitals. Since you now have time you can research and speak with several to see which your most comfortable with when the time comes.
Jennifer.

On pause for surgery sounds good. Nobody wants to do it before they have to. Sounds like are doing good research and have good care. The minimally invasive outcomes are on par with open heart, but patients are selected and probably lower risk going in. When I puzzled that over I decided that all things equal it was a better idea to go the open heart route. Grab every edge, I say. When the time comes, that is. You might want to ask your cardiologist if an afterload reducer might slow progression. I was on one prior to my mitral valve repair, another one of those "edges". -- DVB

One more thing, I forgot to say Dr. Stewart is awesome too. I wet with Grardi because his hospital was more convenient and my cardiologist did not have privileges at Columbia.

-Mitch Friedman

Hi Suzanne, glad all went well with EKG and you still have some time. NYP is ranked 6th on the US News and World Report rankings. Both Dr. I met with did minimally invasive. That was a big concern of mine when I started this. I almost went to Cleveland Clinic to explore the minimally invasive, then found out my NYC surgeons did it too. My surgeon is tops, Dr. Len Girardi at the Cornell campus. I also met with Dr. Allan Stewart at the Columbia campus. Both did minimally invasive, but did not recommend it for me so I got off that road and went for a mini sternomoty. Which, btw, turned into a full sternomoty because I needed my lower ascending aorta repaired. I was petrified about having my chest cracked, but once I met with the surgeons I felt much better about it. Turns out it is very manageable, really!

Good luck,
-Motch Friedman

Hi Suzanne. US News gives some other data along with, like patient safety, mortality risk, etc. Take a look at those numbers too. The rank is a combination and you may find one of the scoring criteria more important than another. For example, I took mortality risk to be the most important. The endoscopy clearance might be to be sure you minimize your endocarditis risk from the endoscopy. Your cardio might give you an antibiotic prescription. If there is more, I'd be curious to know. -- DVB

Hi Suzanne, welcome to HVJ. Keep asking questions this site is amazing. People are so helpful and supportive. I believe you are about an hour outside of New York City. If I am correct, I would highly recommend you consider New York Presbyterian Hospital. I can give you surgeon names at both the Cornell and Columbia campuses. NYP is one of the top hospital in the countries. They do this every day, several times a day. Ther hospitals and surgeons are the tops!

I live in NYC, am 5 weeks post op for AVR and root repair. Let me know if I can help you in anyway. My email is mfspenceny@yahoo.com.

Good luck,
-Mitch Friedman

Hi Suzanne. Now that you've crossed that hospital off the list you should be aware that the high-volume centers of excellence have the best outcomes. At those places the surgical teams do enough surgeries that they've seen it all and know how to handle every contingency. Take advantage of the 'practice' they had on us and get every edge you can. -- DVB

Hi Suzanne,
Yes, Deborah was once a good place to go for heart surgery etc. so when Your Dad was there he probably had good treatment.
Dr. Brown at Morristown Mem. Hosp. is highly recommened to me by my friends husband who just had a mitral valve procedure done in Feb. and he and his wife love Dr. Brown and can't say enough good things about him. So I think I may go and interview him as Morristown is only about 30-40 minutes from my home in Sparta.
I never had a good opinion of the hospital (though years ago it was a great little community hospital). It now seems like a factory to me, but the heart center is only 3 yrs. old .
All for now, but i'll keep you posted.
Joan

Hi Suzanne,I gather you live in the Ny/NJ area. I live in Northern N.J. and checked out Deborah and what I discovered is not good. They have a very high fatality rate and have infact gone bankrupt, fired alot of their surgeons and re-organzied. but their numbers are still unacceptable to me. Also, they take alot of cases where the patient can't afford the surgery (which could account for the bankruptcy), but they do not attract the top doctors. Hope this helps. I wouldn't go there myself.
Joan

And maybe have a strong urge to eat grass all the time.....lol :)

Cindy

Hi Suzanne,

I am not sure yet my appt on the 19th is discuss my options but one thing for sure I do not want a mechanical valve which I think is what they will suggest because of my age (I'm 44). The procedure that I am most interested in is the Ross procedure and that would be a full cut (yuck), like you I am a big baby when it comes to pain.

My big thing is I do not want to take Coumadin to thin my blood if I go mechanical, the blood test (more needles).

Cindy Pastrano

Sorry for got to sign my name to last message. Janis Kielbasa

Hi Suzanne,

Welcome to HVJ site, as you have probably noticed already this is a great site and everyone is so supportive, whether they are waiting, such as myself or on the other side.

You are not alone!! I have aortic stenosis with a bycuspid valve and am waiting for my followup on the 19th with my doctor after my cath I had to discuss my options. So I know the fear and anxiety that comes with waiting and worrying, it is so natural.

The big decision like others have said are valve choice and surgeon choice, very big decisions. am down here in Texas and will look to stay here if my time is finally here.

If you want to ask me any questions please feel free, while i don't have the regurgitation I will need to replace the aortic valve.

I know you will be okay, we will all be okay, so again welcome to the site and to all the new friends you will make.

Cindy Pastrano

Suzanne - Like you'll hear. You're in the right place & are not alone. I'm near your age & and am now post 4 weeks. Feel great & almost forgot I had surgery.

Very very little pain after a day or so. There are no nerves in the. Middle of your chest.

Since you had major surgery already - trust me this is much easier

Finding. Dr - hospital & what type valve will be your biggest concern

And you must keep a great positive attitude. That's a. Must. You're getting some fixed that will prolong your life. Be greatful !

If you care to call pls feel free. 314-276-1012.

Youre in a great area. NYC & such for finding great surgeons. You are really lucky.

Not sure if I helped but did want you to know you're not alone ! With warm thoughts & best wishes.

Nancy Friedman. 2-9-12. AVR. DONE. st Louis mo

Suzanne, I know you are scared but I think after reading all the success stories here, you will feel better. Key things are having it done at a hospital that does tons of these, having a surgeon who could do valve surgery in his sleep. Adam's book has some great info and people here on site will be happy to share their info too. Please know, we are fixable, you can be repaired and lead a full life. I had a full sternotomy and am doing great as are so many others. Unlike many other diseases this is one that can be fixed. Don't worry, you will be okay.

Hi, Suzanne -- I can't help you with your specific question, since I'm dealing with a different valve issue, but I *can* tell you that you've come to the right place. The people here are amazingly helpful, generous, and loving. In less than a week, I already feel like I have a home here. I came in feeling scared and anxious, and today I'm laughing and, in a crazy way, actually looking forward to my surgery and life on the other side. So....welcome!
Best,
Selma Kaplan