I am in need of a double valve replacement

[Mary]

Patrick Haley has double bovine valves in the aortic and mitral position. He also had the maze procedure done. If you want to read his posts, just check his name in the member's list.
Good luck as you sort through and adjust to the news you've received.

 

[bvdr]

I KNEW there were a lot of double-clickers here since going into surgery I didn't know if I would get one or maybe two new valves. Many people helped me before surgery and I was pleasantly surprised with only one but was fully prepared for two. You will be too.

 

[RCB]

Be careful when you compare

Be careful when you compare

Patrick Haley has double bovine valves in the aortic and mitral position. He also had the maze procedure done. If you want to read his posts, just check his name in the member's list.
Good luck as you sort through and adjust to the news you've received.

Dawn,
Patrick Haley is much older than you and thus the tissue valves. He also suffers from AF and I don't know if he converted to NSR. At least he didn't mention it at Jack Drum's AF website- kind of wondered what happened to him. He had also the BEST (IMHO) surgeon for the job- Patrick McCarthy at NW.

People have double valve surgery everyday in this country. Triple valve
surgery has been done by Dr. Starr over 35 years ago and many of the best surgeon have done many. Four valves is rare, but is not impossible.

Ross is right- relax, find a surgeon who has done several of these and trust him. Your young and going to do well!

 

[Mary]

Dawn,
Patrick Haley is much older than you and thus the tissue valves. He also suffers from AF and I don't know if he converted to NSR. At least he didn't mention it at Jack Drum's AF website- kind of wondered what happened to him. He had also the BEST (IMHO) surgeon for the job- Patrick McCarthy at NW.

And your point is ?
That Dawn can't read Patrick's posts for herself?
It was my suggestion that she read his posts.

 

[twinmaker]

Welcome to the family! We're glad you found us. I've only had one valve replaced, but was told that my mitral stenosis was due to Rheumatic Fever. I never knew I had it. I've heard that that is fairly common. I also wanted to tell you that I just moved to North Carolina from the Tampa area. My cardiologist in Tampa was Matthew Glover, and my electrophysiologist was James Irwin. They are in the Bay Heart Group. They practice at St. Joseph's hospital. I didn't have my surgeries there, so I can't help you with a choice of surgeons. Doesn't University Hospital have a "heart hospital" there? I know the Cleveland Clinic has a place in Florida also. We all know how you are feeling to learn about having a heart condition, but there are many good doctors and surgeons to take care of us, and heart surgery has come a long way. This web site has been a Godsend for me. There are many wonderful, understanding, and knowledgable people that have helped me. Again, welcome and we're happy to have you with us. LINDA

 

[RCB]

Mary, Mary

Mary, Mary

And your point is ?
That Dawn can't read Patrick's posts for herself?
That was my suggestion.

My point is that PH is in his mid 60s and that is not in his profile to read.
She is a young women of 41 and may not realize that age difference is a major concern when selecting a double valve choice. He also had AF and that was the reason for his Maze. Dawn is new to this world of HVR and might think that because PH had a Maze, she will have to have one too.
I'm trying to give advice here- What IS YOUR POINT OR PROBLEM?

 

[Mary]

My point is that PH is in his mid 60s and that is not in his profile to read.
She is a young women of 41 and may not realize that age difference is a major concern when selecting a double valve choice. He also had AF and that was the reason for his Maze. Dawn is new to this world of HVR and might think that because PH had a Maze, she will have to have one too.
I'm trying to give advice here- What IS YOUR POINT OR PROBLEM?

I'm not trying to advise; I'm pointing out that not all double valves are mechanical.
I assumed you would be along to challenge my post, and you did!
And in record time!

 

[Ross]

O.K., you both have valid points. Please lets not start a rumble, take it to PM's if you must.

 

[John & Joann]

For everyone regarding Cleveland Clinic, Florida. Cleveland Clinic sold the facility last January to another chain of hospitals. They withdrew from Florida because the state would not certify them to do transplants. All of the staff were guaranteed positions with the new facility and it was to be business as usual.

It would still be an excellent choice for any heart procedures.

I have sent a PM to the family that started this posting.

Joann with double valves since 1971. (A few years behind RCB, but enjoying life--after the weather cools down, it will be better)

 

[RCB]

I'm not trying to advise; I'm pointing out that not all double valves are mechanical.
I assumed you would be along to challenge my post, and you did!
And in record time!

I'm not challenging your first post, just your second.
I want Dawn to understand that her situation is much different than PH's.
Also wanted her to know that he had a Maze because of AF not because
of the double tissue valves. I was also trying to reassure a very frightened
newbee that this type of surgery has a very long history. It is not uncommon
today, and in first time pts., not really that much more risky than a single valve surgery.

I thought that just maybe, maybe it would be important for her to hear that from someone who has been through 4 surgeries over 4 decades and had three of his valves worked on. I thought that kind of credibility would give Dawn confidence to know that she is going to be alright. Foolish me!

 

[Karlynn]

Point of info for our new member.

Atrial Fibrilation can be a chronic heart arrhythmia that causes the Atrium to "flutter" and it requires Coumadin, because AF can cause blood to clot in the area, go to the brain and cause a stroke, or worse. Some of our members have had or have, chronic AF. Sometimes a procedure called a MAZE, or another called cardio ablation can "cure" the AF. AF is not always associated with valve disease and one does not always have to have valve disease to have chronic AF. My brother-in-law has it and does not have valve disease. His was discovered when he had a small stroke (which he recovered fully from) and is now on Coumadin.

Hope this helps if there was some confusion there.

I would be interested to know if Patrick Haley's MAZE was successful. I am hoping so.

When I was at Mayo in 1987 (trying to find a drug program regime that would be successful for my arrhythmia at the time) I became aquainted with a woman in her early 30's that was there to have all 4 valves replaced. I always wondered how she did.

 

[BackDoc]

double valves

double valves

for starters I would do my best to avoid the local community hospitals. I don't want to step on anyone's toes, but you want a facility that does these procedures everyday, all day.

Shands at the University of Florida is about 2 hours from you. They are top notch.

So is the Cleveland Clinic Weston/Ft. Lauderdale. Dr. Boyd or Dr. McCullum are both top notch surgeons at Cleveland.

Prior to consulting with Dr. Boyd, I first saw one of my local surgeons. Getting a 2nd opinion from Dr. Boyd at the Cleveland Clinic was night and day different. He sat down with my wife and I and answered every question we asked. Being in the health care field I had done my research and asked some really pointed questions. He told me that the choice of valve was up to me. He specializes in minimally invasive and robotic procedures and told me in no uncertain terms that with my particular set of problems that there wasn't a "snowballs chance in ....." that I was a candidate for such procedures.

As for the Cleveland Clinic being sold--it was operated under the management of Tenent. Tenent has run into major problems with the federal medicare program, as well as other problems (some ethical) in other areas of the country. It was my understanding that The Cleveland Clinic Foundation was no longer happy with Tenent as their Florida management company.

I'll be back there tomorrow for my 6 month echo exam. Either I'll be told come back in another six months, or I'll be told it's time.

 

[901]

I'm a double valver and aortic root and Maze Procedure recipient, all in the same operation. I only have a little over a years run time on them. I don't hear the clicking unless I listen for it and when I do it is comforting to hear.
I have been fortunate to have my surgeon prescribe the home testing unit for INR. I really despised making appointments, waiting sometimes almost an hour past my appointment time for a five minute blood draw and then waiting all day for the results to come back.
I also had the pacer installed a year ago next week because of damage to the nerves between the two valves during surgery. Apparently, the valves are located in close proximity and damage to the nerves is not uncommon for double valvers. I have/had total heart block, so the upper and lower chambers were doing their own thing!

 

[ALCapshaw2]

Here is what Ann wrote to another Florida newcomer in 2004:

I have been a member in VR for several years and cannot recall that any member had valve surgery in Tampa. There have been a few that had theirs at Shands, tho - including a Shands employee. They were pleased with their treatment. You aren't that far from Shands (Gainesville). Can you go there. It is a wonderful teaching hospital and has everything available. There may be others who will come in and give you further info.

I am in DeFuniak Springs (NW Fl.) but I lived 20+ yrs in Arcadia.

Welcome to VR. This is the place you want to be during your adventure through valve land."
__________________
Ann
My philosophy:
No matter where you are, who you are with, what you are doing, enjoy every moment, every day. God bless

----------

Shands in Gainesville is the hospital I was trying to think of before. A few of our members had their OHS there and spoke highly of the hospital and surgeons.

'AL Capshaw'

 

[Johnny Stephens]

Hello - I'm a double-valver, the result of radiation therapy to my chest when I was much younger. My surgery was over 4 years ago, and I did have some complications - but they were not related to the fact that I needed 2 valves. I suspect given your relatively young age, you will find that the mechanicals will be preferred by surgeons, but this is becoming less clear with the recent improvements in biological prostheses.

It is my sense that my surgical experience was no different from what a single-valver would go through. The aftermath is that my INR is managed to a higher target (3.5) than most, but the methods are the same.

I feel so much better, and didn't realize how sick I was. I do have good days and bad days, but those are just as often due to other non-cardiac problems.

Best of luck, and hit me up via PM if you like -

 

[ILoVeNY25]

Welcome BreakofDawn! As I'm sure you already know you'll find an overwhelming amount of information on this site, Read up on past posts and do searches and ask questions, Everyone's here to help. I too, am a dual- valver or should I say tri-valver. I had rheumatic fever which was misdiagnosed. I'm 23 and 4 years ago, I had my aortic and mitral valves replaced with mechanical (St.Jude's) and they repaired my tricuspid valve. I currently take Coumadin and BP meds for heart rate. Feel free to send me a PM. Take care and God Bless!

 

[breakofdawn2000]

Thankyou Everyone

Thankyou Everyone

Thank You to you all regarding information on my subjective Heart Valve Replacement......As I had my Heart Cath Yesterday and lo and behold the Doctor who performed it and the Heart Surgeon acquantence of mine are in agreement that I do not need Valve Replacement now.
They are apparantly not that bad which is confusing as my Heart Echo and T.E.E. were showing severe Heart Valve condition and now after my Heart Cath they are saying it is moderate and can be treated with medication.???
So is my Cardioligist not very good or does she like to scare the living daylights out of me and have me look into a surgery that really is not necessary right now..?
I was under the assumption that these tests were fairly accurate but apparantly the Heart Cath test, where they shoot that Iodine through your artories, really is the only TRUE result test.

I reallly am thankful that I have found this site and everyone has been really nice, as I was really freaking out at the thought of Heart Surgery and not knowing anyone who has had this procedure done really makes the whole thing daunting. It is nice to know there are people out there who have had this done, who can realate to someone who is thinking about having to go through the same thing.

Thank You to all of your kind words and information......I am pretty sure this surgery will be in my future but after yesterdays test it looks like I can wait a while .....maybe 3,5 or 10 years hopefully, I guess I will have to wait and see.

 

[John & Joann]

You are MOST FORTUNATE that the cardiologist ordered the cath. It is the only true test to determine your condition. I would feel very confident that both of your physicians have your health as their motivation. They sound like they are VERY competent.

Live life, take care of yourself, monitor your body for changes that may happen gradually. The changes will not happen in one day, but rather months, or years. Watch for ankles, feet, and wrists that retain fluid. Watch for water retention on your lungs. Watch for increased tired feeling. Continue your regular medical checkups.

You may wish to inquire about antibiotics when you have your teeth cleaning or other issues that may cause an infection. You may be vulnerable to infections due to your valve disease.

Stay with this forum. It will help you to learn to live with your condition.

ENJOY LIFE!!!!

John & Joann

 

[Patrick Haley]

I am a 62 year old male who had both my Mitral and Aortic valves replaced last November by Dr Patrick McCarthy, chief of heart surgery, Northwestern Medical center in Chicago. I also had the full maze procedure performed at the same time. I had Rheumatic fever when I was a child but the valve symptons did not show up until my early 50's. I was also in chronic AFIB since July 2003.

Dr McCarthy and staff recommended the new Bovine pericardial heart valves. They believe with the new calicification process being used the valves should last me a minimun of 20 years (no written guarantee comes with the valves). Dr McCarthy sincerely believes that if and when when my valves need to be replaced the next time, if I should live so long, the replacement procedures will be so far advanced technically and medically that my risk and recovery should be minimized greatly.

For your information Dr McCarthy moved from the Cleveland Clinic to Northwestern two years ago. He is a brilliant and caring Surgeon somewhat introverted and shy.He is probably one of the top five Doctors in the country doing valve replacements and the maze procedure.

I really did my homework before making the commitment to Dr McCarthy. If you can afford it and your insurance will cover it, I would at least fly to Chicago and meet with him and his caring staff.

After nine months I am feeling great, back to work (I am self-employed) and in the process of buying another business.
I am down to one 50 mg of Toprol each day and hope to be off the Toprol before my one year annivesary.

AND NO MORE COUMADIN.

I realize you are much youger than I am and that may play an important part in your valve decision.
If you need any more information or just want to talk with someone who has been thru the double procedure, do not hesitate to call me.

Good Luck and God speed,

Patrick Haleu
[email protected]

 

[Mike]

I'm also a double St. Judes valver. I'm 19 months post-op and I'm happy with them. I had multiple bouts with RF as a child and that did the damage. My valves are very quiet. For a listen to how my valves sound to me go to:

www.carbomedics.com/patients_how_ticking.asp

Rarely has anyone asked me what that clicking sound is.

Mike