New Member - Upcoming OHS

[KMB]

I like many new members have been reading many posts and learning a lot about what the outcome will be with my upcoming OHS on my mitral valve and have finally decided to join.

I have had mitral valve problems all my life(I am 26) but was officially diagnosed when my father passed away at the age of 3. My sister and I both were checked and she has no symptoms, but is still being followed. I have been followed by many different cardiologists, and have had the same one for the past 5 years.

The last 2 years have been filled with so many appointments since we decided that now is the right time to get this little problem fixed. It has difinately been an emotional rollercoaster - but my husband has been so supportive. It seems like we are either waiting in doctor's office or waiting for test results. I have seen 2 surgeons now and have decided on which hospital to have this done at. The second surgeon I saw mentioned having a ON-X valve put in instead of a St. Judes. I am leaning towards it, but still on the fence since it is so new.

I am trying not to be scared, but the more I think about it, I start having a bad attitude. i think the number one thing people ask me when I tell them I am having surgery is if I am scared. I think if I just keep the positive attitude it will help. I just wonder if the morning of I am going to be an emotional mess.

I am not crazy about the recovery and am worried that I am going to freak out when the breathing tube is down my throat. Also, not that I am going to or have ever worn a bikini, I am not happy about the huge scar that I will have. Maybe I will just think of it as my battle wound! I hope that I can bounce right back since I am so young.

I have some time to ponder as my surgery isn't until May 17th. Thanks for all the good input that I have read so far! It is nice to have a support group of people who are/have gone through the same thing.

 

[geebee]

Welcome - you have certainly found the place with a lot of answers.

Couple of questions:

You are mentioning mechanical valves. Not to pry but, if you are planning on children, you should consider a tissue valve since coumadin and pregnancy do not mix. If children are not being considered, mechanical might be the way to go due to longevity. Has your surgeon discussed tissue valves with you? Just want you to know all your options. I have a St. Jude and love it but there are so many valves out there that should be considered.

Also, who told you being scared was not a part of this process? EVERYONE who goes through this is scared - it is very normal. Allow yourself to be scared because that is what prompts us to make sure we have all the answers to our questions. Once you have your answers, you will be less scared.

You mentioned being an "emotional mess" by the morning of surgery. Don't worry about that. The majority of us have reached a sense of calm by the last few days before surgery. It comes from realizing it is the only choice and that it is out of your hands. You then put your faith in the surgeons and your "supreme being" whoever that may be. You will be fine.

Don't worry about the tube. Most people don't remember it. If you do wake up with it in, don't fight it. Relax and if you feel you must breathe (remember it IS breathing for you so any sensation of needing to breathe is just that), breathe gently through your nose and time it with the rhythm of the ventilator. It will be out before you know it and then you will feel terrific to have it out. Some folks even say they like it because it allows them to be so lazy they don't even need to breathe for themselves

Best of luck, stay in touch and we will help you through.

 

[Ross]

Waiting is the hardest part, there is no doubt about it. Oh yeah, Are you scared? If you weren't, you wouldn't be a normal human being!

You cannot go wrong with either of those valves so do drive yourself nuts between them.

Most people are out while the tube is in. Should awake and find it still in, do not fight it, it only makes it worse. Simply try to breath along with the cycles of the machine and breath in through your mouth and exhale through your nose. It will come out just as soon as you can breath for yourself.

As for the scar, think of it as a badge of courage and realize that without it, you may not be here long. Not only that, but you are not alone. Many others wear the same scar.

You'll be fine and amazingly you'll feel a calm just before surgery day. The worst thing is making yourself understand that you have no control over this situation. You have to let it go.

 

[CCRN]

Waiting is the hardest part, there is no doubt about it. Oh yeah, Are you scared? If you weren't, you wouldn't be a normal human being!

You cannot go wrong with either of those valves so do drive yourself nuts between them.

Most people are out while the tube is in. Should awake and find it still in, do not fight it, it only makes it worse. Simply try to breath along with the cycles of the machine and breath in through your mouth and exhale through your nose. It will come out just as soon as you can breath for yourself.

As for the scar, think of it as a badge of courage and realize that without it, you may not be here long. Not only that, but you are not alone. Many others wear the same scar.

You'll be fine and amazingly you'll feel a calm just before surgery day. The worst thing is making yourself understand that you have no control over this situation. You have to let it go.

That's the best advice I've heard yet

 

[Karlynn]

Welcome KMB!
I had my mitral valve replaced when I was 32, with a St. Jude. That was 13 years ago and I have not complaints. As GeeBee said, if there are thoughts of biological children in your future, you would probably want to consider a tissue valve. If there are thoughts of adoption, I would definitely go mechanical. My children were graduating from high school and starting college just about the time I would have had to have tissue valve replaced. So I'm thankful for the uninterrupted life that my St. Judes gave me.

As far as the scar - do a word search on "cleavage" and find all our silly thoughts on how scars give us fake cleavage. Chances are your scar will fade to the point that, with time, someone would have to know it's there in order to notice it. But even if it doesn't (Mine keloided a bit) I look on it as a Super Woman badge of courage and have always gone ahead and worn whatever swim suit or neckline I wanted.

So glad you found us.

 

[punkin32180]

I had pulmonary valve replacement on Feb 26th of last year and I like you was extremley scared.. I dont think you would be normal if you werent scared... everyone is... i made sure the doctor gave me something the night before my surgery to relax me and help me sleep and also he gave me something for the whole week before...ask your surgeon about that... also they keep you sedated in the ICU while you are on the breathing tube... I think i woke up once while having the ventilator in and seen that i was restless and made sure to knock me out again... its not an easy process but you gotta do whatever you need to do to get better and live a healthy life... hope things go ok for you... stay strong...

 

[KMB]

In response to Gina's question about having kids - this is where we are at...

My doctor had sent letters to various surgoens to ask their opinions of if I could have children before surgery. All came back saying that I definately needed to have surgery pre-children because they did not think my heart would make it through. My doctor has also been in contact with a neonatologist who suggested that she would rather see a high risk patient with a valve replacement on coumadin than with a bad valve. I was also told that I would switch from Coumadin to heprin shots. I would also have a C-section to avoid any other complications. In the end, we would both decide what would be the best for my own health...I would like to live to see any baby that was born!

We have also done a lot of research on adoption and are ok with it if need be.

So much to think about, so many decisions to make and I haven't even had the surgery yet!

 

[Barry]

Were I in your situation, I'd get a mechanical valve and adopt if I wanted a child - there's a lotta kids out there who need homes. Although were I in the situation of having to consider future pregnancy, I'd also be a very rich man since I'm a man.

And, of course, if more folks approached parenthood the way I do, we'd have become extinct aeons ago.

You're pretty young, so you don't face the issue, as I did at 54, of whether you would be able to survive another OHS in 20 years.

I never even knew they stuck a breathing tube in you until reading about it here. I was none the wiser.

Mostly I associate OHS with a lot of transient and soon-forgotten pain that was pretty easy to deal with, and with the annoyance (but no more than an annoyance) of having to deal with Coumadin/Warfarin.

 

[ALCapshaw2]

Before you make your final decision, I recommend that you research Stentless Porcine Valves, Bovine Pericardial Valves, and the ROSS Procedure.

I'm surprised no one has mentioned the ROSS Procedure to you before. That takes your own Pulmonary Valve and puts it in place of the defective valve. Then a homograft or other tissue valve is placed in the (lower pressure) pulmonary position.

Be sure to ask about the durability of each of those options in a young woman.

FWIW, I'm considering the On-X Valve for my Mitral Position when the time comes. It certainly looks promising with regard to lower propensity for clot formation. More conservative physicians point to the outstanding reliability of the St. Jude Mechanical Valve. I have one of those in my Aortic position.

'AL Capshaw'

 

[dawnwit15]

Hi there

Hi there

KMB
You and I have similar situations. I'm 30 now but was 28yrs old during my 1st surgery (valvuloplasty) and 29yrs old during my open heart surgery. Like Gina mentioned, I was worried about the coumidin issue so I elected to have the tissue valve replacement. I was a newlywed and had not had the chance to digest my honeymoon let alone the prospect of having children when faced with the fact that I had to have surgery. Like you, my surgeon told me there was no chance of putting off surgery until after a pregnancy, my heart would not have made it through. Being so young I also was worried about the scar. My surgeon advised that he could do the incision minimally invasive, so I have a 3 inch scar under my right breast, When wearing a bra, you can't see it. I'm not sure if they could do the same with the aortic valve but you may want to ask and see if that may be an option. I lucked out during the surgery. Once the surgeon was in, he opted to repair the valve instead of replace it. It was his belief that the repair would last just as long as the replacement with a tissue valve. I do have to keep in mind that I may need surgery again down the road (10-15 yrs). Hopefully by then they can do the whole thing through a cath or better yet a lazer!! So far so good, I feel great and my cardiologist says my valve looks fantastic. I'm now 3 months pregnant and everything is looking bright so far. You will get through this tough time in your life. I promise. You have a bright future to look forward to so try hard to think of the positive. In all honesty, the anxiety leading up to surgery is worse than the surgery itself. So take a deep breath and try to keep calm. Your in my prayers.
Dawn

 

[McCln]

Kmb

Kmb

Listen to everyone here, they said what expereince dicatates to help you on the valve issue. I was 36 and no one in my life. Have to have the male counterpart to make a baby and no one was there. I went with the St. Judes and no regrets. About the scar, there is no issue, be proud of it, show it off, you will get tons of attention. Some people with not much brain will ask if the scar hurts or did the surgeery hurt. Like as if they were children. Good luck and just relax and let things flow. I do not stress as much as I did before surgery. So just go with the flow. Scars are beautiful. Be proud and keep coming in with your questions. We are all friends. Take care.

 

[Barry]

Sorta a recap:

1. Do a bunch of research and make up your own mind on what sort of valve would be best, making the decision in consultation with your cardiologist. Folks are pretty opinionated around here, it seems, so asking what's the best valve is sorta like asking a Yankee fan who's the best ball club.

2. Participate actively in you own medical care. Ask lots of questions, especially about the drugs they give you, and ask to see the medication insert for them (has tons of info, but take it judiciously because even aspirin would sound like poison on a med insert). I had to frequently remind the nurses to do stuff that was overdue, and even got prepped for a bypass when I was in for a valve replacement!

3. The anticipation is the worst part.

 

[BionicBob]

Hasn't been that long ago (just eight weeks) but no one dreaded that breathing tube more than I did. I posted a thread on here about it. But good folks on here like Gina (Geebee) were very reassuring. For many people, it's out before they even wake up. As it turned out, mine was in a little longer than the norm because my lungs were a little lazy in getting back with their oxygen work. But I felt no anxiety and soon the tube was out. Just go with the flow, as others have said. Everything will be fine.

 

[geebee]

KMB,

I am so happy to hear that you have and are doing so much research. You seem to have quite a few decisions to make and are anticipating all paths.

I wish you well for all of the choices: valve, pregnancy, adoption. I am sure you will come up with the best ones for you.

Take care and please keep us posted.

 

[jaydee]

I just thought I would chime in about the tissue v. mechanical valve. I have severe MR and I had a baby last October (a beautiful baby boy). I have just been told by my cardio that I need to have valve repair surgery. So, in case the repair is not successful, we have been considering our options. My cardio recommended the mechanical valve because of the durability issues in someone my age (31) with the tissue valves. But, I really, really want another baby so we discussed whether he would be opposed to a tissue valve. He said that if you talked to a bunch of surgeons, 55% would recommend the mechanical and 45% would recommend the tissue so he did not feel strongly about going with the mechanical valve. )We are going to go with the tissue valve, if it comes to that.)

But, after doing all your research and talking to all these great people, you should do what makes you feel the most comfortable. Good luck!!!!

 

[tobagotwo]

I believe there are some who have had babies on warfarin without apparent problems for the child, and not an incredible amount of extra concern for the mom.

I'm not recommending it, but it may still be an option. Al Lodwick diescussed it earlier, and I swear someone just posted who had a baby while on warfarin.

And there's a blog about it, isn't there?

Anything to make a tough decision harder...

Best wishes,

 

[Debrinha GT]

Having children

Having children

Hello KMB, first of all I want you to know that I've been there three times already and since the fourth's inevitable, the best thing I've ever done since I found out that my mitral valve has started to deteriorate once again, was to join this site. I had rheumatic fever as a child and had my first mitral valve replacement at the age of ten. Since I was the first child in Brazil to make it through this kind of surgery, there was no guarantees of what would happen next. Well, five years later I was on the operating table again, but this time the doctors were more confident things would work out for me. I still didn't have the slightest idea that these operations would be a part of my life and it was only seven years later, while I was living in Scotland that I learned that. Another eight years went by before I needed to go under the knife again and in 1995 it happened for the third time. My former Brazilian cardio was totally against me getting pregnant and I had never questioned her, but in 1987 I began to wonder why and as I was living in Scotland at the time, I asked my doctor there. To my surprise he said that providing my valve was in good shape, there would be no problem, but I would have to be watched closely. However, I still went by what my cardio back here had told me, as if I'd been brain washed, and it took me a long time to work up the courage to do otherwise. My husband and I came back to Brazil for good and a few years later I decided to see another cardio who happened to be in favour of it and said the same thing the other had told me back in Scotland years before. I then started trying for a baby, but without my husband knowing about it. He was against it and on the few occasions I brought up the subject, we ended up having an argument. Unfortunately, it back fired on me and I was told I needed the surgery before fulfilling the dream of motherhood. I had my surgery on December19th, 1995 and by that time I had already told my husband what I'd been up to. He then assured me that as soon as the doctor allowed, he'd be very happy to become a father, but until today I think he might only have agreed so easily just to cheer me up. Anyway, three months later I was given the BIG OK and he had to keep his promise. LOL!! I got pregnant with my daughter Bruna in June 1996 and had a C-section a couple of weeks before the nine months were up and there were no setbacks.( By the way, I've had all tissue valves and don't recall having ever taken warfarin). She's now eight years-old and is a beautiful wee girl. I really do wish that everything goes well for you too and if you have any questions at all regarding my pregnancy or/and heart surgeries, just ask and I'll be very happy to be of help. Take care.
Débora from Brazil

 

[RCB]

Jaydee-your the boss

Jaydee-your the boss

I just thought I would chime in about the tissue v. mechanical valve. I have severe MR and I had a baby last October (a beautiful baby boy). I have just been told by my cardio that I need to have valve repair surgery. So, in case the repair is not successful, we have been considering our options. My cardio recommended the mechanical valve because of the durability issues in someone my age (31) with the tissue valves. But, I really, really want another baby so we discussed whether he would be opposed to a tissue valve. He said that if you talked to a bunch of surgeons, 55% would recommend the mechanical and 45% would recommend the tissue so he did not feel strongly about going with the mechanical valve. )We are going to go with the tissue valve, if it comes to that.)

But, after doing all your research and talking to all these great people, you should do what makes you feel the most comfortable. Good luck!!!!

Jaydee,
As long as you are making an informed consent decision about going with a tissue valve to have another baby, realizing full well you accept the risk of resurgery, I don't see how(exception if the surgeon get in there and has to put a mech. valve in) a surgeon would not go along with your wishes.
Your needs trump all.

 

[kizzy]

breathing tube

breathing tube

I am so glad the tube was brought up as I am also worried about freaking out over it! Thanks for your answer Gina!
counting down till Tues. Kizzy

Welcome - you have certainly found the place with a lot of answers.

Couple of questions:

You are mentioning mechanical valves. Not to pry but, if you are planning on children, you should consider a tissue valve since coumadin and pregnancy do not mix. If children are not being considered, mechanical might be the way to go due to longevity. Has your surgeon discussed tissue valves with you? Just want you to know all your options. I have a St. Jude and love it but there are so many valves out there that should be considered.

Also, who told you being scared was not a part of this process? EVERYONE who goes through this is scared - it is very normal. Allow yourself to be scared because that is what prompts us to make sure we have all the answers to our questions. Once you have your answers, you will be less scared.

You mentioned being an "emotional mess" by the morning of surgery. Don't worry about that. The majority of us have reached a sense of calm by the last few days before surgery. It comes from realizing it is the only choice and that it is out of your hands. You then put your faith in the surgeons and your "supreme being" whoever that may be. You will be fine.

Don't worry about the tube. Most people don't remember it. If you do wake up with it in, don't fight it. Relax and if you feel you must breathe (remember it IS breathing for you so any sensation of needing to breathe is just that), breathe gently through your nose and time it with the rhythm of the ventilator. It will be out before you know it and then you will feel terrific to have it out. Some folks even say they like it because it allows them to be so lazy they don't even need to breathe for themselves

Best of luck, stay in touch and we will help you through.