Facing mitral valve replacement after failed repair

[maiae]

I'm new to this site--and I'm very grateful to have found it. I had my mitral valve repaired June 2004 and have suffered many complications. I am now in need of a mitral valve replacement--because of my last experience with OHS, I'm terrified. I would like to hear from anyone who suffered complications and went on to have their valve replaced. I'm 42, married, and I have a 13 year old son and a 8 year old daughter--I'm looking forward to having the energy to keep up with my children after my valve replacement. Thanks in advance for any advice about valve replacement (bio vs mechanical) and doctor recommendations.

Warm regards,
Maiae

 

[hensylee]

Morning, Maiae - welcome to VR. I am sure there will be lots of members relating experiences. Some have multiple valve replacements. We are filled with a great variety of surgeries and there has to be some that will more or less match yours. Take heart - when you get closer to your surgery, you will have more confidence gained by being a member of VR and you will get through it with many hands holding yours.

 

[Karlynn]

Welcome to our family! We do have members who have had repairs and then replacements so I'm sure they'll be along soon.

 

[Mary]

I'm new to this site--and I'm very grateful to have found it. I had my mitral valve repaired June 2004 and have suffered many complications. I am now in need of a mitral valve replacement--because of my last experience with OHS, I'm terrified. I would like to hear from anyone who suffered complications and went on to have their valve replaced. I'm 42, married, and I have a 13 year old son and a 8 year old daughter--I'm looking forward to having the energy to keep up with my children after my valve replacement. Thanks in advance for any advice about valve replacement (bio vs mechanical) and doctor recommendations.
Warm regards,
Maiae

Maiae,
Where did you have the repair done? I had valve replacement three months ago in St. Louis at Missouri Baptist.

 

[maiae]

Thank you

Thank you

Thank you to those who have replied.

Mary: I had my surgery at Barnes--I've been to MO Bap many times for testing...actually, I think St. Anthony's is the only hospital I haven't been to in this city

I would really appreciate it if you would share your surgery experience with me and let me know who you consider to be the best valve surgeon in St. Louis or out of town...travel for the right surgeon is no problem--I want to be very careful this time around--would also like to know about your cardiologist. I had a pacemaker implanted Jan 2005 for AV block--If you have any info about electrophysiologists in town let me know.

Thanks,
Maia

 

[Mary]

Dr. Kouchoukos did my replacement surgery. He is nationally known, and I was very happy having him as my surgeon. I also thought the cardiothoracic ward at Missouri Baptist was exceptional.

I have a cardiologist in Cape (my hometown) but I used the cardiology group that is associated with Dr. Kouchoukos for my heart cath. Dr. McKenzie did the cath, and I was very impressed with him.

I made my own appointment with Dr. Kouchoukos, so you don't have to be referred by the cardiologist. I think we have one or two members on the site who are currently planning on using Dr. K. for their replacement/aneurism repair when the time comes.
I hope this helps. Anymore questions, just let me know.
Mary

 

[maiae]

Thanks!

Thanks!

Thanks so much, Mary!

Dr. Kouchoukos did my replacement surgery. He is nationally known, and I was very happy having him as my surgeon. I also thought the cardiothoracic ward at Missouri Baptist was exceptional.

I have a cardiologist in Cape (my hometown) but I used the cardiology group that is associated with Dr. Kouchoukos for my heart cath. Dr. McKenzie did the cath, and I was very impressed with him.

I made my own appointment with Dr. Kouchoukos, so you don't have to be referred by the cardiologist. I think we have one or two members on the site who are currently planning on using Dr. K. for their replacement/aneurism repair when the time comes.
I hope this helps. Anymore questions, just let me know.
Mary

 

[geebee]

Multiple surgeries are easier because you know what to expect. On the other hand, multiple surgeries are harder because you know what to expect.

I was not as scared after I knew I survived my second and third surgeries as I was after my first because everything was no longer new to me. I did not like the breathing tube and that was my biggest concern with the second surgery. I found it a bit easier than the first because I knew I was not going to choke to death when they suctioned the tube. I also liked the idea of being lazy and letting the tube breathe for me. It's actually pretty cool that you don't even need to remember to breathe.

I am sorry that you have to go through this again. It is very frustrating when you think things are fixed and life throws that curve to you.

I will pray for you and hope things go smoothly. Just take comfort when you wake up from surgery that you made it. The pain is just proof you are alive.

 

[ALCapshaw2]

Repeat surgeries are more complicated because of scar tissue from the previous surgery. Also, the heart is no longer 'floating' in the pericardium and may actually have adhered to the back of the sternum so the surgeon has to be VERY careful not to damage the heart while opening you up. You want someone with LOTS of EXPERIENCE doing repeat surgeries.

The #1 rated Heart Hospital is the Cleveland Clinic. Mayo Clinic ranks #2.

'AL Capshaw'

 

[INRtest]

Maiae,
I can't speak about multiple OHS's, but I had life-threatening complications before my surgery that lead to a long, slow recovery. After 7 wks. in the hosp. I was home for exactly 3 wks. when I had to return to hosp. for gallbladder surgery (like yourself).
To sum up, I was virtually comatose for about 6 wks, on death's doorstep for much of that time and had a slow, horrendous recovery, but other than some ugly scars, a ticking valve and Coumadin, I'm arguably in better shape today than before I got sick.
I didn't have a choice, but if I did, I'd go with an artificial valve again, hopefully to avoid future OHS. Good luck to you and I hope your surgery goes well and you recover as well as I and many of the others here.

 

[maiae]

Re:

Re:

Multiple surgeries are easier because you know what to expect. On the other hand, multiple surgeries are harder because you know what to expect.

I was not as scared after I knew I survived my second and third surgeries as I was after my first because everything was no longer new to me. I did not like the breathing tube and that was my biggest concern with the second surgery. I found it a bit easier than the first because I knew I was not going to choke to death when they suctioned the tube. I also liked the idea of being lazy and letting the tube breathe for me. It's actually pretty cool that you don't even need to remember to breathe.

I am sorry that you have to go through this again. It is very frustrating when you think things are fixed and life throws that curve to you.

I will pray for you and hope things go smoothly. Just take comfort when you wake up from surgery that you made it. The pain is just proof you are alive.

Thanks so much, Gina. I'm sorry you've had to go through more than one surgery.... You seem so strong--that's very encouraging!

Maia

 

[maiae]

Maiae,
I can't speak about multiple OHS's, but I had life-threatening complications before my surgery that lead to a long, slow recovery. After 7 wks. in the hosp. I was home for exactly 3 wks. when I had to return to hosp. for gallbladder surgery (like yourself).
To sum up, I was virtually comatose for about 6 wks, on death's doorstep for much of that time and had a slow, horrendous recovery, but other than some ugly scars, a ticking valve and Coumadin, I'm arguably in better shape today than before I got sick.
I didn't have a choice, but if I did, I'd go with an artificial valve again, hopefully to avoid future OHS. Good luck to you and I hope your surgery goes well and you recover as well as I and many of the others here.

Hi Jess--thanks for sharing with me. I'm so sorry you had such a rough time. When you mentioned the word 'comatose' I had a flashback to my recovery when I prayed I could just fall asleep to get away from the pain. My biggest fear about having OHS is that pain meds intensify my panic attacks--I was only able to take them for 9 days after my last OHS. I still shiver when I think of the intense pain I felt 24/7 for so long because tylenol and advil didn't come close to bringing me relief. I read somewhere that being in constant pain delays healing, so that may have had something to do with my slower recovery. On the up side--I've had three surgeries since my OHS last June and they were all a cake walk in comparison. I plan to get together with my PCP to find a pain reliever that I can take...I pray we can find one.

My best to you,
Maia

 

[maiae]

Thank you

Thank you

Repeat surgeries are more complicated because of scar tissue from the previous surgery. Also, the heart is no longer 'floating' in the pericardium and may actually have adhered to the back of the sternum so the surgeon has to be VERY careful not to damage the heart while opening you up. You want someone with LOTS of EXPERIENCE doing repeat surgeries.

The #1 rated Heart Hospital is the Cleveland Clinic. Mayo Clinic ranks #2.

'AL Capshaw'

I'm considering Dr. Cosgrove at the Cleveland Clinic, however, I've discovered that Dr. Kouchoukos is very good--and right here in St. Louis. I'll meet with him on Sept. 22 and make my decision after that.

My cardiologist is recommending a mechanical valve, but due to the fact that I'm very hyper, clumsy, and seem to have problems with meds I'm having a very tough time deciding.

Thanks for your help,
Maia

 

[KristiinSD]

If I lived as close to Clevland as you do

If I lived as close to Clevland as you do

I would go there. I had surgery to repair a torn achilles there and was impressed. I am having surgery in a few weeks and am pretty confident that they will be able to do a repair, but my back-up would be a tissue valve. I think, however, that my decision is predicated on my chest being virgin.

Kristi
mr
surgery 9/29/05

 

[maiae]

Re:

Re:

I would go there. I had surgery to repair a torn achilles there and was impressed. I am having surgery in a few weeks and am pretty confident that they will be able to do a repair, but my back-up would be a tissue valve. I think, however, that my decision is predicated on my chest being virgin.

Kristi
mr

surgery 9/29/05

Hello Kristi Thanks for your input. I wish you the best of luck with your surgery ... I've heard so many good things about the CC--I have visited their heart forums often.

Wishing you a safe trip and a speedy recovery-
Maia

 

[Mary]

Maia,
If it makes you feel better, you should know that I had minimal discomfort after surgery. That's one reason I feel that Mo Baptist's program is so good. I think I quit taking almost all pain meds after the 10th day, so if you have the same experience, you should be good to go.
Mary

 

[maiae]

Maia,
If it makes you feel better, you should know that I had minimal discomfort after surgery. That's one reason I feel that Mo Baptist's program is so good. I think I quit taking almost all pain meds after the 10th day, so if you have the same experience, you should be good to go.
Mary

Thanks again, Mary! I hope you don't mind if I ask what way they entered when you had your surgery.

I didn't want a scar down the center of my chest--they made the incision under my right breast, took out my implant, and went in through my ribcage on my right side--then replaced my implant. I remember the plastic surgeon telling me that this type of surgery was much more painful than sternal ... but at the time I wasn't worried because I had previously gone through numerous painful dental surgeries, had breast augmentation twice, eye surgery twice, an emergency c-section with my son--I just assumed I would breeze through heart surgery like I had everything else...LOL... How foolish I was!! Needless to say, I'm going for the front zipper this time!

Thanks so much for your encouraging words... I can't tell you how much they mean to me.

Maia

 

[OldManEmu]

Maiae welcome aboard. Sorry to hear that last years Mitral repair was less than successful and that you are facing surgery again, especially in light of the complications you had to endure the first time around. I am the same age as you and have a tissue valve so I know it will need replacing in my lifetime. I feel more confident with the second surgery when it comes time than I did with the first as I hope not to be in class 4 heart failure the second time around before surgery. My surgery was through the sternum and I can't say it was particularly painful. I received pain killers when I initially woke from surgery and after that it was just paracetamol. I did however share the hospital ward with a guy that had had a coronary bypass though the sternum 6 years earlier and had this time had lung surgery through the ribs and he told me that this was much more painful than the earlier surgery through the sternum.

 

[Mary]

Maia,
I had my replacement done via a sternal incision. We have had several members say that the side method is very painful, so I would never go that route. Cosmetically, I think my scar is going to be a non issue. It was glued, so it was a very thin line, and cleavage hides most of it.
The only real pain I experienced was after I got home and I had to cough. That occurred on days 6,7, and 8 post op, and of course, it only lasted during the duration of the cough.
Did Mark Moon do your repair? I know that he's at Barnes. Dr. Kouchoukos moved from Barnes to Missouri Baptist some time ago and helped to establish the program there.
I hope this helps.
Mary

 

[maiae]

Re:

Re:

Thank you for sharing Oldmanemu If you were in class IV you must have been feeling very badly. I appreciate your encouraging story about your experience with short term pain med necessity.

Mary-

My surgeon at Barnes was Dr. Ralph Damiano--a very kind man whom I'm sure did the best he could. He's Chief of Cardiac Surgery at Barnes.

I'm looking forward to my consultation with Dr. Kouchoukos at Missouri Baptist, and I really appreciate your recommendation.

Thanks again to all who have replied to my post.

Maia