Got 2nd opinion

[Debbie]

Hey everyone, well I have'nt been on for a few weeks, time for an update. I took the step to go see the cardio, I looked up a couple ACHD doc's that were about 2-3 hours from my house and saw them. I just had a brief visit with the first, all he did was listen to my heart and said my valve did'nt sound good at all and thought I should have surgery ASAP. Well, I did'nt like that news at all and was quite upset all week so I went into LA (3 solid hours of traffic one way!) for 2nd opinion. I went to a cardio that Dr. Starnes ( the surgeon) office recommended for ACHD on last tues. He did a few tests and said I should get it done in the next 6 months. Here's my questions, what exactly happens from now tests, visits, procedures,ect? Has anyone gone into this surgery relativity healthy? I've had several symptoms for the last year that are just getting worse, but still pretty healthy. I think it would be easer to go into surgery sick than feeling o.k. Any thoughts?? I'm pretty worried about all this. Thanks Debbie

 

[njean]

Dear Debbie,

I can really relate to your dilema --- a few months back I was told I needed another OHS (my 4th) but I opted not to have the surgery because like you, I was feeling & still am, relatively okay. The doctors all agreed that I needed to have the surgery but they said that it's very hard to convince a patient that they need surgery when they are feeling ok.

However, you were very young when you had your 1st & since this will be your 2nd OHS, I imagine scar tissue will probably NOT be a great issue which in my case, it was. So, in that light, if you are feeling relatively well & this is in fact your 2nd opinion, you should probably look into having the surgery done. You stand a better chance at a quicker & smoother recovery if you are feeling strong then if you wait too long.

Best of luck to you & keep us posted as to what you're going to do.

God Bless,
Norma

 

[WayneGM]

My need for OHS came as a complete shock as I have always been totally healthy. Never sick or injuryed in any major way. My GP discovered a heart murmur that wasn't there before during my annual check-up. I was feeling perfectly fine. No symptoms that I was aware of. Next thing you know, I'm having OHS.

Anyway, although I was feeling fine, stuff was obviously happening to my body on the inside. I have absolutely no regrets about having the surgery. It was early enough that my valve could be repaired and no permanent damage was done. Apparently, my heart chamber was starting to enlarge and now it's gone back to normal range. The repair is holding and my life is back to normal.

In terms of next steps, there were only four as I recall once I agreed to the surgery.....(1) I met with the Surgeon to discuss the details of the procedure, (2) I had a cath, (3) I went through pre-admission at the hospital, then (4) I had the surgery.

Best wishes and good luck.

 

[Lynlw]

Hey everyone, well I have'nt been on for a few weeks, time for an update. I took the step to go see the cardio, I looked up a couple ACHD doc's that were about 2-3 hours from my house and saw them. I just had a brief visit with the first, all he did was listen to my heart and said my valve did'nt sound good at all and thought I should have surgery ASAP. Well, I did'nt like that news at all and was quite upset all week so I went into LA (3 solid hours of traffic one way!) for 2nd opinion. I went to a cardio that Dr. Starnes ( the surgeon) office recommended for ACHD on last tues. He did a few tests and said I should get it done in the next 6 months. Here's my questions, what exactly happens from now tests, visits, procedures,ect? Has anyone gone into this surgery relativity healthy? I've had several symptoms for the last year that are just getting worse, but still pretty healthy. I think it would be easer to go into surgery sick than feeling o.k. Any thoughts?? I'm pretty worried about all this. Thanks Debbie

I'm glad you went to ACHD docs and things are moving along. As for what comes up, alot depends on what tests you just had done. Starnes is a Top surgeon. I can understand being worried, but honestly believe the surgery/recovery is probably better for people going into surgery healthy. Actually when Justin had his surgery when he was 10 be played his last game of the soccer season 2 days before surgery. He usually feels pretty good before his pulm valve/conduit replacements and/or revisons (even tho his right ventricle is huge and his pulm artery almost completely blocked), and I think it has alot to do with how well he does post op. For most of his past few surgeries, he didn't even realize how tired ect he was preop until he felt so much better after surgery. Actually 2 days after his surgery in June, he said he already felt better than he did before surgery and this was when he was still in CICU.
Good luck with everything. Lyn

 

[ALCapshaw2]

Do a VR.com SEARCH for keywords "Sooner is Better" or "Permanent Damage" and you will find MANY posts detailing the reasons not to wait for symptoms.

Symptoms mean DAMAGE is being and has been done to your heart walls and muscles, not to mention that recovery goes a lot better the more healthy you are going in.

'AL Capshaw'

 

[Tiffin]

As one that was very ill and near death's door You do Not want to be 'sick' when they do your surgery, my recovery was long due to the fact my heart had been bad for so long and I didn't know. When I entered the hospital on emgerency basis (thinking I had a really horrible chest cold) and being told that if I had not come in that night my heart would have given up before morning. A week later after intense testing and medical therapy I had my surgery and then spent another 7 days in ICU recovering. Then another 7days in the step down unit.

I can honestly say it took more than a year for me to fully recover.

Have the surgery before a lot of damage and that you basic health is okay!

 

[Karlynn]

If your symptoms are increasing, your heart is under stress. Whether permanent damage is being done yet is kind of a guess. One of our sayings here is "the worse it gets, the faster it gets worse". No crystal ball is available to see what that means for you, unfortunately.

My personal opinion - I'd start looking into scheduling it to fit into your schedule, prepare for being gone from work etc. I don't know that I'd wait 6 months to see how I felt then. It sounds like 2008 is going to be your surgery year, planning it out will be much easier than going into a doctor's office 4 months from now and hearing that you need surgery in the next few weeks.

 

[Debbie]

2nd opinion

2nd opinion

Thanks everyone for the reply's. Wayne, I'm surprised you had no symptoms and bad enough for surgery, is that normal? Lynn, did justin have any permenant damage from his right ventricle being very enlarged?? Al,thanks for the search I haven't done a search yet but I'm going to try right now. Thanks Debbie

 

[Superbob]

Debbie,

It is not unusual to have no symptoms or very mild symptoms and yet need valve replacement or repair. If one has aortic leakage or enlargement, and waits until the onset of severe symptoms to have surgery, the damage may be done and it may be too late. I had only mild symptoms, and was doing a strenuous commute to work everyday, when my date for surgery came. Echocardiograms are one of the tests that can be used to determine when you need to have the surgery. I was having echos every 6 months at first, and finally every 3 months, before I was scheduled for surgery.

 

[WayneGM]

Wayne, I'm surprised you had no symptoms and bad enough for surgery, is that normal?

I don't know how normal it is but it can obviously happen. When I was first diagnosed, my Cardio was really surprised how well I did during the physical stress tests despite the severe valve regurgitation....no significant SOB with the treadmill speed going at a pretty quick pace.....essentially results he would have normally expected from a 50 year old who doesn't have a regular exercise routine. However, the echo definitely showed signs of early heart chamber enlargement and the cath confirmed the regurg was very severe. The history of test results indicated it was getting progressively worse, so OHS has scheduled sooner rather than later.

 

[Lynlw]

Thanks everyone for the reply's. Wayne, I'm surprised you had no symptoms and bad enough for surgery, is that normal? Lynn, did justin have any permenant damage from his right ventricle being very enlarged?? Al,thanks for the search I haven't done a search yet but I'm going to try right now. Thanks Debbie

Justin has alot of problems with his heart, it was basically rebuilt when he was 18 months and he's 19 and had 5 surgeries. Before his surgery in June the pressures on the right side of his heart were higher than the left and besidehis ventricle his right atrium was enlarged. He hasn't really had enough time between his last few surgeries for his heart to settle to see what his "normal' is. but 3 valves have regurge, ventricle have gortex dividng them ect, his pulm valve is in a conduit outside of his heart, so for all going on with it, he does really well. Lyn

 

[Computec]

Some people are completely asymptomatic, Debbie, and drop dead from sudden heart failure. I believe that they THINK they have no symptoms. Their bodies are compensating for the inefficiency and malfunction. This is all well and good while the body CAN compensate. The problem arises when it no longer can. It tends to crash instead of slowly slide into trouble.

Since you're having symptoms and two specialists have said you need the surgery soon I would suggest that you embrace this as the opportunity to get your real life back to that higher level you miss. Look at it for what it really is. Your heart will be fixed and you'll have a much better "quality" of life. Don't let fear stand in the way of giving yourself the best present you can imagine as soon as possible. This surgery is performed more often than just about any other. It's well known and done well by a lot of surgeons. Just get a good surgeon lined up and get going with it. You'll be happy you did.

Jerry

 

[netmiff]

I'm another

I'm another

who had no symptoms, had a severely stenotic aortic valve, severely calcified, and the "do it now rather than sooner or later" came when an aortic aneurism was noted at one of my regular echocardiograms. Turns out I had a bicuspid valve, but no-one knew that until the surgeon got in there an had a look.

My advice, go forward and get the surgery over with; it is not worth putting it off if you may drop dead at any time with a burst aorta ... don't mean to scare you, but if that's the alternative ........ that may be blunt, but seriously, the surgery is nowhere near as bad as I thought it would be, and yes I have what I call a "popeye" muscle in my heart, it is enlarged on one side to compensate, am on a beta blocker and two types of blood pressure med - was on nothing before, but it is to compensate for the muscle that grew to compensate for the small valve opening (does that make sense?? if not, let me know and I will explain it better, if can lol)

 

[ALCapshaw2]

Some more thoughts.

Valve Disease problems do NOT go away, they only get WORSE with time.

The ONLY solutions are to FIX or REPLACE a defective Valve.

The healthier you are at the time of surgery, the Better and Faster your recovery will be.

Given the VERY HIGH RATE of SUCCESS, especially with First Time Patients under age 60 (1% risk of Stroke, 1% risk of Mortality) vs. Probable Death (it may take a few years) with continuing decline if NOTHING is done, it is to your advantage to proceed with Surgery to FIX your "Plumbing Problem", the Sooner, the Better.

One more thought. Once you KNOW you have a problem that needs fixing (and surgery is the only way to do that), it is best to interview SURGEONS, asking about their experience with YOUR issues and their results. When you find a surgeon you feel comfortable with, let him suggest WHEN to proceed. Good Surgeons usually don't rush their patients into surgery unnecessarily.

'AL Capshaw'

 

[Lynlw]

Debbie, I'm a little confused, are you having the pulm valve replaced that was repaired when you were a baby? Or is it another valve? One thing I would def ask the surgeon was his experience with redos, altho if you are going to Starnes he does many CHD patients so has lots of experience w/ the issues that can come along w/ 2nd or 3rd surgeries.
As far as symptons, since it is a gradual process and your body compensates, from what i understand alot of times you don't realize how bad you feel until after surgery and you see the difference.

 

[Diane]

Debbie,
I am glad you went to see ACHD docs! We CHD patients have unique anatomies that present special problems.

I am another one that had no symptoms. Its hard to justify having such a major, traumatic surgery when you aren't experiencing major problems. Like when I had my gallbladder surgery, my belly hurt all the time and I knew that surgery was the only way to make it better. But like you, I just couldn't understand why I would need heart surgery when I wasn't presenting with any problems.

The doctors actually had a really hard time convincing me that I needed surgery because I felt just fine. What they finally said that convinced me to have the surgery was that even though I might "feel fine", there were things going on in my heart that I couldn't see or feel. They said that my pulmonary valve was leaking severely (which I couldn't see) and my right ventricle was enlarged due to trying to compensate for the leakage (which I couldn't feel). If I didn't have the surgery, then my right ventricle would eventually get over-tired and give out or fail. They said that by the time I felt any symptoms and wasn't feeling "fine" anymore, it could be too late and the damage to my heart that would have been done might not be reversible. They also said that the surgery/recovery would go a lot smoother if I had it sooner rather than later because I was "fine" and still healthy. Being healthy when you go in for the surgery is actually preferable because your body is stronger and better prepared to get through it.

So I wasn't happy about it but I knew I had to do the surgery. I looked at my work schedule and my family life and tried to pick a convenient time to have surgery. There's never a "convenient" time to have heart surgery but some times are better than others so I picked a time about 2 months down the road and just did it! I think that the 2 months waiting for the surgery were actually worse than the surgery itself! So my advice is to make your decision and then don't put it off for too long.

I am almost 3 years post-op now. At my 2 year check-up, the doc said that there was virtually no leakage from my pulmonary valve and my right ventricle has shrunk down to almost normal size. So now even those things that I can't see or feel are in better shape!

~Diane

 

[Debbie]

debbie's 2nd opinion

debbie's 2nd opinion

Thank you everyone for all the reply's, so o.k. you all made a good case for surgery like Al said it isn't going to go away or fix it's self on it's own so just fix it. So I will try and suck it up and just do it and not put it off. I called the surgeons office last Fri. to see whats next but have'nt got a call back yet. The cardio said he would send all info. from my visit with him over to the surgions office. Lyn, yes my pulmonary valve was repaired with OHS in 1963 but now it's not working much at all and they need to replace it. Lyn I will agree with you my symptoms have progressed so gradual that I have forgot what it's like to feel " normal" (I wonder what real normal is??) I am very much looking forward to being able to do all the physical things I love without being so tired all the time! Diane nice to hear from you again, my situation is the same as yours severe leaking and right ventricle enlarging I'm glad you said after the surgery the right ventricle went down to a more normal size, that is encouraging. Hey I have something to look forward to I can start posting on Pre-Surgery pretty soon!!! Thanks everyone Debbie

 

[njean]

Thank you everyone for all the reply's, so o.k. you all made a good case for surgery like Al said it isn't going to go away or fix it's self on it's own so just fix it.

Debbie,

I'm so glad you finally got your courage to have it done & overwith.

I pray for this kind of courage myself soon! The doctors & tests show that I need to have another OHS but I just can't get my wits about me!
But on that same note, one doctor expressed relief that I opted NOT to have the surgery & the other one said, that if I was his mom or wife, he would have adviced against it too because of the immense scar tissue & the risks associated with a 4th OHS?? I'm stuck!

But good luck to you & I hope you get all this behind you & hopefully, someday I will too!

Norma

 

[Curtsmum]

My son also had no symptoms when he had his first ohs, he was only 18
months old, it was really hard, i remember thinking it would be easier to handle if he had some signs of being a heart baby. He is now waiting for his next surgery which will be any time between now and 6 months, he is very active and full of energy although he does get sob when he runs. I put my trust in the consultants and surgeons, they know when the time is right. Wishing you the very best of luck