Open-Heart Surgery -- 4th time!

[njean]

Hello everyone -- I am a 56 yr. old female & I have undergone Open-Heart Surgery three times in my life.  The first two Open-Heart's took place in 1975 when I was 24 years old.  The surgeries were performed in Houston TX by the world renowned Dr. Denton Cooley.  I had the aortic & the mitral valve replaced with mechanical valves.  I had done wonderfully for 31 years up until last year, March/06 I had to go back to Houston & have the aortic valve replaced with another mechanical (St. Jude valve) because the old valve was failing & I was having CHF.  When they went in there last year, my artificial mitral valve appeared to be working okay so they decided to leave well enough alone & did not replace it.  Well, low & behold, a year later the mitral valve is showing failure & I have been told that I now need to have a 4th Open-Heart Surgery to replace it!  Needless to say, I am mortified because the doctors told me that it would be a very high-risk surgery due to the fact that I have a significant amount of scar tissue which could create a surgeon's nightmare!  I have declined the surgery for now & they increased my lasix (water pills) to 80 mg per day plus blood pressure meds (Altace) & of course the coumadin (warfarin) that I have been on all my life practically.  I have been advised that I cannot stay on the lasix therapy for too long because that could cause problems in the long-run too & that if I wait too long to have the surgery, I could be facing a worse scenario, heart/lung transplant!   I am not working;  I have worked for 20 years with my company & was told by the doctors that I have to try to live as "stress free of a life" as possible.  Can someone out there offer me some comforting advise or do you know of anyone that has faced anything as similar as my situation?  I would appreciate whatever anyone has to offer.  Thank you & God bless!
njp

[Ktucker0512]

I have had my aorta valve replaced 3 times and balloon once.  My heart valve goes out every 1 6 months.  They are trying to stay on top of it, but my immune system onlyntakes 16 months.  The first 2 valves were mechanical and they put in a porcine in a 3rd time.  The pig valve allows them to open with balloon.  If I have to replace a 4th time, my odds go up to 50%.

[skydnsr]

Thanks for the update!  Will be thinking about you.

[njean]

I am still alive and I pray that all of you wonderful folks are too!

I am so, so sorry that I have not been around here for such a long, long time!  A lot of things have happened in these 7 years but a 4th OHS has not been one of them....YET!

I continue to be monitored by my PCP in my hometown and by the doctors in Houston but there has been no more word or mention about another OHS.

I go up yearly for my Echo's and although the situation has gotten a bit worse, I'm still able to do some cooking for us, drive for short shopping trips, light housework, read, watch my husband do the yard work, and keep up with my friends and family on Facebook or different heart forums.  

Before my condition worsened, my husband and I,  fulfilled our life long dream.....a cruise to Alaska in 2009.  It was wonderful!   In 2010, we took another cruise, this time to Hawaii but it was not as enjoyable because the CHF and PH were more pronounced and I had difficulties.  

Now, the only big travel is our trip to Houston for check-ups and that is beginning to take a lot out of me so I'm not sure how much longer these trips will continue.    

I'm still on 80mg of Lasix, 3x a day, along with BP meds, beta-blockers, HP medication (Sildenafil, generic for revatio), A-fib meds, to name a few.  

I am fighting CHF and Severe Pulmonary Hypertension (70-85 mm hg) as well as A-fib and skipped beats.  The end of this month, I return to Houston for another Holter-Monitor Study and to see whether they are going to implant a PM (pacemaker).   I'm not looking forward to that because I feel that they (the doctors) are trying to place a band-aide on a gapping wound!  It's a snowball affect and the ball seems to be rolling faster and faster.....

But life goes on and we have to take the good with the bad.  Some days are better than others and I thank God for everyday, no matter how bad it was because the bad days make me appreciate the good days that much more!

God Bless You All and Keep on Fighting!  

[Clairealou]

Hi Njean,
I can see your post is several years old now but have just come across it. I am a 45 year old woman in the Uk and just about to have my 4th surgery. Have had 3 in the last 7 years so I'm pretty scared about this next one. Just wondering how you got on and if you're ok now.

[kkmm84]

i m 28 and already had 3 ohs ,stroke,endocarditis,and had a son again i need a surgury i m on biological valve it just last 6 yrs i want another child before i get mechenical i m on duretics and beta blockers coz my valve is tightning and i m having symtoms already..either i can be pregnant now or may be they put biological valve again and then i  can  complete my family then i hav to take a risk of 5th open heart surgury...i dont know what to do if sombody can give me any advice ...i m stuck i dont know whether my heart can take pressure of pregnancy or not...

[Dawn19731]

Hi,

I am glad to hear that you are doing better.  I am a 38 year old women who has had open heart surgery 4 times by the time I was 22 years old.  I have also been diagnosed with chronic fatigue syndrome, fibamylagia, lower back arthritis, high blood pressure and major depression. I still have chronic chest pain and severe fatigue, but the doctors do not have an explanation of why; but I am thankful that I am here to spend time with my 2 great children.  

Dawn
Location: Virginia

[angelique4136]

Hi,

My mum has just found out that she has to have a 4th heart operation on her valves as they are tightening and that she will only have about 2-3yrs left unlesst hey operate. They said that having a4th heart operation is very high rist 50-65% survival.

I am so worried that they have not looked at everything and missed something.

Any advise?

[kalani97]

Hello there... I am happy for you... keep up the good work and stay healthy!

I wish I didn't need to have a fourth OHS like you, but I don't think it's going to happen... Wish me luck...

[kalani97]

Wow... already had 4 OHS huh... how long did each surgery last before you needed another one?  Also, how was the 4th OHS? were there any complication(s)? how was the recovery? ... I'm sorry... too many questions... I've had 3 OHS so far and soon to have my 4th one... I'm starting to get really scared and worried... I was only 19 when I had my first one, I am now only 29 and needing a 4th one :( ...

[xrainbow]

I have had 4 open heart surgeries to replace my aortic valve, the last in 1990, st jude aorta mechanical,  had a good run on this one but the dr. tells me scar tissue is thickening around the valve and will eventually interfere, So, I am probably looking at number 5 ohs in the near future, I had my first ohs at 27 caused from rhumatic fever as a child, my last was 1990 , I am 63 years old now , barely passed the prime of life I might add,  :)   but my future does not look good,  wish you the best of luck and god bless you

[jack091956]

check my profile, your not alone.. Jerry

[DavesMom]

Yay, you! Congratulations! Great news and best of luck.

[Jack54]

This is the best news I have heard in a long time.....Someone actually feels good, that is. ENJOY!!!!! and continued good health to you :)

[jmpr]

Congratulations!
Are they going to do something to prevent further clots?
jmpr

[Momto3]

You made my day!!  WOOHOO!!!  I am just so thrilled to hear the great news!

Is that you on the rooftop?  LOL  

Have a wonderful weekend!!

connie

[njean]

Do you all believe in miracles?  Well, I believe a miracle happened to me already.  Yesterday I went to see my cardiologist here in my home town & I took him a copy of the ECHO that I had just received from the doctors in Houston.  This ECHO was done the morning of the day I was dismissed from St. Luke's, (June 14th) & I was told that a copy of it would be sent to me or my doctor later.  Therefore, I left the hospital without knowing what the ECHO read.  When I first went in to St. Luke's which was June 4th, the saw a shadow type "spot" on my mitral valve & this is what led them to believe that something suspicious was happening to the valve & obstructing the blood flow through it that is why I was experiencing the CHF & the severe pulmonary hypertension.  The ECHO that I just received shows that my mitral valve is "well seated and is working normally"!  Can you beat that!  My doctor here almost fell over when he started looking at the ECHO & said that it was phenomenal!  He believed that I had probably had a "clot" in my mitral valve & then perhaps it dissolved on it own!  So I just feel so blessed & so lucky at this moment that I want to shout it from the roof tops!  So for now at least, everything is going great; I feel great & with these news, I feel like a new person!  God Bless all of you good people who took the time to reply & I will pray that all of you will remain healthy & continue to live your lives & do the things you want to do.  Take care!  
njp

[DavesMom]

Hi there,

So sorry to hear about you facing OHS a 4th time. I've had two (an aortic valve repair at 19 and an aortic valve replacement/aneurysm repair eight years ago at 42) and don't even want to think about  a third.  

Like you, the surgeon had a terrible time with me during the second surgery because of scar tissue.  His report states that I am high risk for a redo. So I never, ever want to hear the word surgery again...unless it's preceded by the word plastic.  : )

Your post also got me to thinking about the longevity of our valves. I got my mechanical one at a fairly young age and I've always wondered how long it would actually last.  The surgeon said it should last me the rest of my life but then I've also read that they only last 20-30 years.  

Still, sounds like you have a good team of cardios and your age as well as your positive attitude will work in your favor.

Again, sorry to hear about this and I certainly wish you the best!

[Jack54]

What a heart breaking story to hear, yet your attitude about it all is so good :)

I understand your issues very well, ie scar tissue upon scar tissue! I am facing bypasss surgery should I have any more restenosis or blockages in my LAD. So I try to find the very latest technology/techniques, such as minimally invasive bypass surgery. I am elgible just by reading the prequisites, not by having been examined by a doctor.

I received my 5th stent from a doctor at the Cleveland Clinic. I was totally impressed by this institution. Doctors from all over the world come to the CC for heart procedures to be performed on themselves.

I googled your concern and found that you may very well be a candidate for minimally invasive valve and annular ring repair. As a matter of fact, they can do it by entering your femoral artery, the same as when a cardiac catheterization is done. Some of these procedures are in phase 1 clinical trials.

Please read this information when you get time. Best of health to you :)

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Minimally invasive mitral valve repair surgery

In patients with isolated valve disease, minimally invasive procedures are standard at the Cleveland Clinic. 95% of patients who have isolated valve disease are able to have minimally invasive options. Minimally invasive surgical approaches include 2-3 inch right chest approach, 2-3 inch mid-sternal approach, and robotically assisted approach. In addition, current research into percutaneous approaches to mitral valve repair may bring additional options to patients in the future.

http://www.clevelandclinic.org/heartcenter/pub/guide/disease/valve/mvrepair.htm?id=cff00071&engine=adwords&keyword=mitral+valve+repair&WT.srch=1&WT.mc&?id=cff00071&gclid=COGctIHMk40CFQkjgQodnyS-6w

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Featured Innovations:
  
Two new approaches are being tested at The Cleveland Clinic Heart Center to treat leaky mitral valves without surgery.

The heart’s valves consist of leaflets that open to allow blood to flow forward through the heart and close tightly to prevent backflow of blood in the heart. Mitral regurgitation (MR) occurs when the leaflets of the mitral valve do not close properly. MR causes blood to leak backward across the valve. When the leak is severe, the heart has to pump stronger to force the blood out to the body, causing the heart to enlarge and weaken.

Traditionally, severe mitral regurgitation has been treated with heart surgery. Although minimally invasive surgery has decreased the size of the incision, researchers are hoping to develop a non-surgical option to treat this condition.
Two new investigational procedures are being tested at The Cleveland Clinic Heart Center that may change the future of heart valve surgery:

The first procedure is performed in the cardiac catheterization laboratory in consenting patients, with the aid of echocardiography. A special catheter with a very small clip-like device is inserted into the femoral vein, in the groin, and advanced to the heart. With precise controlled movements, and guided by echocardiography, the cardiologist attaches the clip to the leaflets of the mitral valve, and the catheter is removed. Scar tissue forms over the clip and holds the valve leaflets in their new position, which limits the leakage.

Other medical centers involved in this study include: Evanston Northwestern Healthcare, Emory University, University of Pennsylvania, Swedish Medical Center, and Washington Hospital Center.

A second procedure is currently being tested in the operating room by a cardiologist and a cardiothoracic surgeon on consenting patients who are having mitral valve surgery, to determine the safety of the device. Mitral valve regurgitation can be caused by a dilated annulus, the tough fibrous ring that supports the mitral valve leaflets and a floppy posterior mitral valve leaflet. This technology focuses on reshaping the valve annulus and posterior mitral valve leaflet.

A delivery catheter is inserted into the subclavian or internal jugular vein in the neck and advanced to the heart. The device remodels, or pushes the annulus back into shape, stopping the leak. Transesophageal echocardiography is used to ensure the device is in place and the appropriate outcomes are achieved. The device and catheter are removed at the end of the procedure. Eventually, this procedure also will be performed in the catheterization laboratory.
Both procedures are Phase I clinical trials, which means they are in their earliest clinical research phase, being tested in a small group of consenting patients for the first time to evaluate safety. (See Understanding Clinical Trials*) for more information on the phases of Clinical Trials).

Currently percutaneous procedures (valvotomy) are performed, in many patients, to treat mitral valve stenosis (a stiff inflexible valve) and highly selected patients for aortic stenosis. The preliminary results suggest that the new percutaneous devices could help to treat mitral valve regurgitation. This would be especially beneficial to patients with congestive heart failure and mitral regurgitation, and possibly, in those who may face more than one surgery in their lifetime. Although investigators are still cautious about these devices, they are hopeful new technology can offer further options for patients with mitral valve regurgitation in the future.

For questions or more information, you may contact us by email, using the Contact Us Form. Please state "Heart Center" in the Question or Comment Section. You may also call the Heart Center Resource and Information Center Nurse at 216/445-9288 or toll-free 866/289-6911.
Click here
to learn more about valve disease
to learn more about heartcenter research
  
http://www.clevelandclinic.org/heartcenter/pub/history/future/mvinnovation.asp

P.S. I read where the CC has repaired/replaced more heart valves than any othe institution in the world, and have the best survival rate.

[Momto3]

I cannot believe Dr. Cooley is 92!!!  Incredible!

I'm happy to see that your new medicine regime is helping some with the CHF symptoms.  

I wish you the best in your search for the right surgeon.  They are out there and you've got a great team of doctors to help you find him/her.  Best of everything!

Keep us posted and have a nice weekend.

connie

[fearfactor]

I pray that all goes well for you as I'm sure it will.  I'm a Texan and know that those doctors in Houston are good ones.  You've been through a lot, keep on hanging in there!

[jmpr]

When I had my second open heart surgery, they were worried about complications from the first one (which was 39 years earlier).
While there were plenty of adhesions, most involving the heart itself, the operation went flawlessly due to the experience of the surgeon.
I wish you the very best,
jmpr

[njean]

Thank you so very much for responding!  It brought tears to my eyes when I read your kind & warm responses!  

Actually I was sent home after spending two weeks in Houston being evaluated by Dr. Cooley himself (he's 92 years old now, & he looks remarkable!) & his cardiologists.  Unfortunately like he told me, he does not do heart surgeries anymore due to his age but he's still pretty much overall in charge of things at St. Luke's & the Heart Center.  He & his cardiologists adjusted my medications to relieve the CHF symptoms I have been experiencing.  They put me on 80 mg of Lasix a day, 5 mg. of Altace, 81 mg of Aspirin & want me to keep my INR between 3.0-3.5 & I must follow a very low, sodium diet!  

After spending two weeks in Houston & being monitored by the fine medical staff there, the CHF symptoms started to go away!  They did another Echo the day I was dismissed & it showed considerable & better readings than when I first went in!  According to the report, mitral valve still shows "severe mitral annular calcification" but the valve appears well seated with normal function!  I also have a "severely enlarged left atrium (>39ml/m2) 237 cc".  The PA systolic pressure is estimated at 45-50 mmHg.  There is a "mildly dilated aortic root & the RAP, whatever that is,  estimated to be 6-10 mmHg.  In summary the report says, "since TEE exam of 6/5/07, the mitral inflow gradient is lower (now normal range for prosthetic valve".  I am taking this report which I received yesterday from Houston to my cardiologist here in town so that he can explain it in depth to me.  The doctors in Houston & my doctor here decided that due to my somewhat "guarded" condition that I should not go back to work.  I have been employed for 20 years with my employer, in a financial/budgetary office but the work has become more demanding and taxing on me & I recognize the fact that I cannot function in that capacity any longer.  So, I have filed for a medical retirement.  In the meantime, I am feeling just fine and just taking it day by day & praying to God that everything continues this way & I don't have to have the surgery at least not anytime soon.  I do have every confidence in the doctors in Houston & Dr. Cooley even expressed relief when I decided against the surgery and decided instead to come home instead.  But he & the other doctors there did tell me that the valve (mitral) is not going to get better only worse with time & that I should keep in mind that eventually I will have to face a 4th surgery!  God Bless you & keep me in your prayers!  
njean

  

[Momto3]

Hello and welcome.

I'm sorry that you have had to undergo three OHS, but very happy to see that Dr. Cooley was there to take care of you.  I have a copy of him doing a CABG and (VHS) and it is fascinating!  He is amazing!  

There is another website (can't mention it by name b/c of Forum rules), but if you search on valve replacement, you should come upon it.  There are members who have been in similar situations to yours.

CCF has an excellent reputations for difficult surgeries, but if you're still in TX, maybe Dr. Cooley can make a recommendation (if you decide to pursue surgery).  

Are you able to speak frankly with your current cardio?  Do you feel comfortable in expressing your concerns?  Is he/she empathetic to your fears?  Personally, I think having a good relationship with your doctor is important to patient care and comfort.  Please know that we are here to support you, anytime.

connie

[CollegeGirl143]

You seem to be doing remarkably well mentally, considering the stress you must be under.. So much for stress free life eh! Have you considered having your procedure done at the Cleveland Clinic???  Theres not much i can offer as far as advice, as it seems you have good doctors looking out for you, but there are lots of members here who will be more than happy to give you support.. Welcome to the forum :)