Third Open Heart Surgery/ Second Aortic Valve Replacement

[bratbuz]

Hi Folks,

Great to see this forum with amazing people who are helping with their experiences/knowledge/ideas on various valve related issues. I truly appreciate your time and willingness to help. Here is my story, it is a long one - please bear with it.
After having gone through so many medical procedures, now I am at another point where I need my second AVR. I am worried a lot, depressed and very afraid to do more physical activities. I am on so many medicines - sotolol, lisinopril, zoloft, coumudin, lipitor. Currently I am treated at Stanford.
I am really concerned about this surgery - as this is going to be my 3rd OHS. I am thinking of getting second opinion at Cleveland,OH.

Can you please , please share your experience and recommend best doctors/surgeons at Cleveland hospital along with your experience ?
How do you compare Clevelend with Stanford in terms of quality of pre-op, op and post-op ?
Suggest for any tests to be performed to track valve condition other than 2D echo tests.

ABOUT ME:
I am a 41 year female of Indian descent living in California. I had untreated reumatic fever when I was 10 years old which lead to valves damage.I had been treated/operated for Mitral valve, Aortic valve and arythmia. Recent echo test showed that the average pressure gradient of aortic valve is around 45 and aortic valve area of 0.5 cm2.
So, the doctors are recommending to replace the already replaced (aortic valve was replaced with mechanical valve in Feb. 2000) mechanical aortic valve . I am NOT having symptoms like shortness of breath,Lightheadedness,chest pain currently.

LIST OF SURGERIES(Descending order)
2011, Diagnosed with Aortic valve stenosis. Aug (?) - going to have aortic valve replacement (re-do)
(echo report shows that my aortic valve pressure gradient around 45 and valve area 0.5 cm2)
Treating docrors in Stanford

2009, Mar - mitral valve replaced with mechanical valve
Complications: had Ventricular trachecardia after 5/6 days of surgery.
(recent echo shows that I have moderate mitral valve regurgitation)
Done at Stanford

2008, Jan - fibroids (removed with laser, not completely removed)
Stanford

2006 - AICD (defibrillator) battery change
2002, May- AICD (defibrillator) was implanted to treat Arythmias , VT in particular
Defibrillator fired 40 times 6 months after implanting due to improper settings
Done at Stanford

2000, Feb - aortic valve replaced with mechanical valve
Complications: had cardiac arrest and was in coma for 3 days before surgery.
Done at Fremont, CA

1989, Jun- mitral valvatomy ( just dilated mitral valve)
Done India


Thanks in advance for your replies/words.

Regards,
BratBuz

 

[ken taylor]

Bratbuz , WoW you have been through a lot, I cant speak to you about cleveland, I know there good, I just had my 2 open heart surgery in Texas at St. Lukes= If you are open to Houston I did a lot of research on there surgery team and I went with Dr. Igor Grogeric I think he is one of the top 5 surgeons in the world. He does a lot of heart and lung transplants and thousands of valves and re-dos. Houston is in the top 4 nation wide for heart surgery. If interested google the hospital and doctor. Good Luck!

 

[Duffey]

Hi Folks,

Great to see this forum with amazing people who are helping with their experiences/knowledge/ideas on various valve related issues. I truly appreciate your time and willingness to help. Here is my story, it is a long one - please bear with it.
After having gone through so many medical procedures, now I am at another point where I need my second AVR. I am worried a lot, depressed and very afraid to do more physical activities. I am on so many medicines - sotolol, lisinopril, zoloft, coumudin, lipitor. Currently I am treated at Stanford.
I am really concerned about this surgery - as this is going to be my 3rd OHS. I am thinking of getting second opinion at Cleveland,OH.

Can you please , please share your experience and recommend best doctors/surgeons at Cleveland hospital along with your experience ?
How do you compare Clevelend with Stanford in terms of quality of pre-op, op and post-op ?
Suggest for any tests to be performed to track valve condition other than 2D echo tests.

ABOUT ME:
I am a 41 year female of Indian descent living in California. I had untreated reumatic fever when I was 10 years old which lead to valves damage.I had been treated/operated for Mitral valve, Aortic valve and arythmia. Recent echo test showed that the average pressure gradient of aortic valve is around 45 and aortic valve area of 0.5 cm2.
So, the doctors are recommending to replace the already replaced (aortic valve was replaced with mechanical valve in Feb. 2000) mechanical aortic valve . I am NOT having symptoms like shortness of breath,Lightheadedness,chest pain currently.

LIST OF SURGERIES(Descending order)
2011, Diagnosed with Aortic valve stenosis. Aug (?) - going to have aortic valve replacement (re-do)
(echo report shows that my aortic valve pressure gradient around 45 and valve area 0.5 cm2)
Treating docrors in Stanford

2009, Mar - mitral valve replaced with mechanical valve
Complications: had Ventricular trachecardia after 5/6 days of surgery.
(recent echo shows that I have moderate mitral valve regurgitation)
Done at Stanford

2008, Jan - fibroids (removed with laser, not completely removed)
Stanford

2006 - AICD (defibrillator) battery change
2002, May- AICD (defibrillator) was implanted to treat Arythmias , VT in particular
Defibrillator fired 40 times 6 months after implanting due to improper settings
Done at Stanford

2000, Feb - aortic valve replaced with mechanical valve
Complications: had cardiac arrest and was in coma for 3 days before surgery.
Done at Fremont, CA

1989, Jun- mitral valvatomy ( just dilated mitral valve)
Done India


Thanks in advance for your replies/words.

Regards,
BratBuz

Hi!
I can't really offer many suggestions since I've only had one valve replacement for aortic stenosis, and so far, so good. However I have been a member of VR.com since 2004 and have read replies from many members who have undergone issues that are somewhat similar to yours.
From what I've read, I think getting a second opinion from Cleveland Clinic is helpful. I believe you can contact them, then send test results, and they can review them. I might be totally wrong about this, but I believe that's how it works.
Does your cardiologist know why your mechanical valve is becoming stenotic? I would want to know before making a decision about a new valve. Is it pannus growth?
Things are slow around the forum today, but I'm sure others will be around that maybe able to help you. In the meantime, welcome to the group. It's a heck of a way to meet new friends, but friends we are.
Best wishes,
Mary

 

[Gail in Ca]

I can only offer my thoughts on Stanford as I have had all 3 of my OHS done there. Each time, I felt totally confident that I would survive. My surgeon, Dr Craig Miller, is the best, so confident and knowledgeable. The nursing staff is first rate. In ICU I had my own nurse. My recovery for this 3rd surgery went very well. I only had a little problem with my rt lung collapsing, but a very competent Physician Assistant put in some dodad that helped. Once I was walking, all was well. I left there in only 6 days. I was 54 then,2 yrs ago, and 4 mos before my OHS I had had a horrible staph infection that caused bacterial endocarditits. It affected my AV and my MV. Dr Miller took care of both in a 12 hour surgery. I awoke feeling so alert and alive. I couldn't believe I had just been thru such a long surgery. If you must travel to Cleveland, go ahead, but if I was having another surgery, there would be no choice for me but Stanford Hospital!

 

[Lynlw]

Hi, I'm sorry to hear you've gone thru so much and need another surgery so soon. I'm curious do you know how your Aortic valve was when they replaced the mitral valve 2 years ago, or if they talked about possibly replacing the Aortic, or "cleaning it up' when they were in there? I know sometimes there are good reasons not to do the other valve, like it would be too much time on bypass etc, but was wonderring if the Aortic got that bad in just the last 2 years.

My 23 year old son has had 5 OHS plus 2 other heart related surgeries, so I kind of have an idea what you have been going thru. I Hope it helps you little to hear, Justin's 3rd and 4th OHS were actually actually the "easiest" for HIM as far as being home soon (5 and 4 days post op) and recovery, granted they WERE harder for the surgeon, but even his 5th he was home in 3 or 4 days, but was readmited for an infection 10 days post op.
Compared to his 2nd surgery which was very complex and( like yours was in 89) and he had complications for months, he did much better for his last few surgeies than he did for his 1st two, so it isn't always true each one is tougher for the patient, hopefully you will have the same experience.

Who did you other surgeries? As for the hospitals, we don't have personal experience with either hospital because Justin had his first surgery as a newborn and goes to Congenital heart centers, but no they have great reps. I think it always is a good idea for Multiple REDOs or complex surgeries to get a couple opinions, but I PERSONALLY believe unless there is a good reason to not want to use the same surgeon or hospital, (Like you had a bad experience caused by the doctor or staff or they don't have alot of experience with the surgery you need) that IF they have alot of experience with MULTIPLE REDOS and complex surgeries, it is better to go back to the surgeon who did your surgery (or was on the OR Team) and knows exactly what they did and how they did it, instead of going to new doctors who are just going by reading your records, OR notes and tests results. They all have slighty different ways of doing things and its good for them to really know you and YOUR heart.

Stanford DOES have alot of experience with complex surgeries and REDOs, so know what can cause complications with multiple surgeries and the safest way to take care of you in the OR and recovery. Luckily in the last 20 years as more babies with the most complex Congenital heart Defects,(CHDs) that need at LEAST 2-3 OHS before they even start school, have been surviving, so they have really learned alot about the most common complications, like alot of internal scarring or pericardial or plueral effusions, and know the best way to open them safely or take care of them in the CICUs.
, which benefits everyone needing REDOs
I was wonderring how old you are? (DUH Duffy pointed out your 41, sorry i missed that) I'm guessing your stenosis is caused by excess scar tissue or pannus, (Justin's surgeon told him he is a "scar building machine" after his surgery to replace his dacron conduit that needed replaced less than 2 years, not something you want to excel at but it sounds like you might be just as good) hopefully you will slow down and this will be the last surgery you need for a very long time..if not the rest of your life.

Since your valve is already .5 IF you want to get more opinions, I would start calling the diferent hospitals tomorrow and ask what they need sent to give a 2nd opinion from your records, so it doesn't take too long. Usually they want CDs of the actual tests so they can look at them themselves instead of just reading the reports. I'd also start asking Stanford to send you any forms you need to fill out (like Hippa forms) to have records sent. Some hospitals have their forms online now so you can print them at home, which would be even quicker.
Also depending how close you live to Stanford you might want to tell them you will pick up all the info yourself and send it to the other centers, because sometimes Medical Records can take a little longer to send things out.

Speaking of tests you asked what are good to track valve progress, either a MRI/MRA or CT scan give good reliable measurements, but since you have an ICD most likely you can NOT have an MRI.

Good Luck with everything.

 

[nngbwh]

Bratbuz , you have been through a lot. I am sorry to hear you are going for your 3 surgery. I just want to say Hi and welcome you aboard. Keep us posted.

 

[Guest]

Ken.. how do we find out how a hosp. is rated.? How can we know about our surgeons etc ? I did some research before my surgery on google , but did not find out who was considered the top

 

[ElectLive]

.. how do we find out how a hosp. is rated.?

Here's one source for hospitals: http://health.usnews.com/best-hospitals/rankings/heart-and-heart-surgery

 

[Greg a]

WOW BratBuz WELCOME TO THE FAMILY 40 fire shock storm in 2002 THAT is something to endure !!!! Glad you found our family and will be able to glean a little from the community BUT YOU have so much to contribute and PLEASE do angain WELCOME

 

[bratbuz]

Hi Everyone,

Thanks to all for your info/ encouragement and kind words. Sorry about my delayed reply, as so much was going and it was agonising time.
Now that I had successfull 3rd OHS , it is a great relief and very happy to be back in home with my dog and cat, and of course family.

Here is update on the events leading up to OHS and I have couple of follow-up Q's.

- After initial accessment and reco for OHS for AVR in early July, I had second echo test which still shows Aortic gradient press higher.

- Finally decided to go for 2nd opinion at Cleveland Clinic and planned for surgery in 3-4 months. Consulted Dr. Allen Klein who was very helpful and efficient in arranging so many tests in a day or two. Gradient press found to be increased by 20 points in 3 weeks. He also reco to have AVR soon. Now that we were not comfortable to fly back in this condition, so decided to have surgery immediately.

- We were fortunate to get Dr. Bruce Lytle as surgeon and was kind enough to take this up in a short notice. Had tests for echo, TEE, dental and ENT. Initially Came for 3 days consultation which turn out be 22 days stay at Clevelend.

- Surgery done on Aug 22, 4 days in ICU and 11 days in hospital. Overall experience with Cleveland Clinic was excelltnt. Surgeon/his team, ICU staff and other physicains were superb and took best care. it seems there was lots of scar tissue around Aortic valve . Surgeon took good care of it, cleaned scar tissue, inserted slightly bigger size valve and replied Mitral valve.

- After surgery, valve parameters look very good. But I have heart block now due to surgery, as I have ICD I am on pacing for most of the times. EP doctors think it may go away, but unlikely. This is a big concern and worrisome.

- Recovery is going slow for me- I am still weak, as I am very afraid to walk more and do physical activities. I am worried about heart rate going up and having ICD
shocking, even though my EP doc has assured about safety of it. Any advise on this will be helpful.

- Due to my previous surgeries and intubation, my vocal cord is kind of paralyzed and it won't open completely. I consulted ENT doctor before and after this surgery. For last couple of days, I am getting lots of coughing (not due to cold or related ), but may be from constricted air space. It is also very difficult to swallow so many tablets with this condition. I am having sore throat, drink enough liquids and talk less. I will need to consult ENT doc again. I took low dose steroids for a week after surgery, which seem to help a bit.

I am wondering if constricted air space is one of side effects after OHS surgery and please share if you have tried and followed any therapies.

I have another concern about scar tissue around valve areas. How to prevent scar tissue from growing too much ? is there any life style/ diet to follow ? I have seen couple of threads on scar tissue , but not with much info. Any useful info and research data is very much appreciated.

Again thanks very much,

Regards,
BratBuz

 

[tprice54]

Congratulations on pulling though! My one tiny bit of advice, no matter how scared you are, getting up and walking is probably the single most important thing for your recovery. Try not to worry about the ICD, it is there to help you.

 

[nngbwh]

Great to hear you're back. Wishing you a smooth recovery. Thanks for the update.

 

[RobThatsMe]

Wishing you a full and speedy recovery.
btw... what valve type was selected for your redo?

Rob

 

[debster913]

Wishing you an uneventful, quick recovery!

Best,
Debi (debster913)

 

[jiniani]

Hi bratbuz... I'm from Bay Area as well. I feel your pain.

I had problems with my vocal cord as well. It went away after couple of weeks. It is amazing how body recovers after such an experience.

My surgery (aortic root replacement and aortic mech valve) was done by Dr.Craig Miller in July 2006. I wish you speedy recovery and back in Bay Area leading a wonderful life.
Hang in there.

 

[bratbuz]

Hi Rob,

Thanks for your wishes

My valve is Bovine Pericardial Patch. Surgeon replaced old 19 with 21 size , I hope this will help me keep going .

Cheers,
BratBuz

Wishing you a full and speedy recovery.
btw... what valve type was selected for your redo?

Rob

 

[Bina]

Bratbuz, you have been through so much.....best wishes for a calm and smooth recovery.

 

[carolinemc]

I am not sure about the inside scaring to prevent it from happening. I am shocked at how much you have been through, you are truely a miracle itself. Please keep us update on how you are doing. I lurk in here from time to time and will answer from time to time, since got displaced at my city job. I am hoping to get to workin soon, or go on disablity. Hard choices but we all have to make them, you have done more in your lifetime. Take care and hugs for today.

 

[rvrkumar]

Hi BratBuz,

You have been through a lot and I wish you a speedy recovery.

Regarding your question on scar tissue, the only thing I heard is that On-X menchanical valve is designed to resist the scar tissue growth. It may well be their marketing pitch, but that is the only thing I heard on controlling scar tissue growth. None heard on preventing scar tissue growth through other means (exercising, diet etc.)

-Kumar

 

[rvrkumar]

I echo what Tom mentioned. Walking is extremely important for your recovery. If your doc cleared you for walking, then don't worry about other things.

Congratulations on pulling though! My one tiny bit of advice, no matter how scared you are, getting up and walking is probably the single most important thing for your recovery. Try not to worry about the ICD, it is there to help you.