My Dad

[jojofromct]

Hello
I am a bit nervous and thought I would post. My father was diagnosed
with a leaky valve back in 2001 - well after a car accident he was told he has a slightly enlarged heart. My father is already on blood thinners from a stroke 11 years ago, he recovered great and lives a normal life and works. He is 60 years old. After my dad and mom met with the cardio last week he was told in a year or so he will need his valve replaced and have surgery. He goes back for this next cardio in August. I dont understand the whole waiting period, is it because its not BAD enough for them to replace the valve. My dad really like his cardio doc and has faith in him. Can open heart surgery be performed on someone on Coumidin? AND, now until his next echo cardio gram we worry about him at work and everything.
Can someone give me some insights. I am a wreck. Totally a wreck.

 

[JimL]

Hi Jojo and welcome. You might suggest that in addition to seeing the cardiologist they also talk to the surgeon who will do the surgery. It's sort of like a second opinion on when the surgery should be done.

 

[jojofromct]

Thanks Jim
His cardio doc didnt mention that just yet. My question is the waiting time. Has anyone every had to wait to have the valve replacement?
This site is amazing I want to add, I have been reading posts on here over a week. Thats why I am posting. Support. I need it. I am scared and worried.

 

[Steph]

Hi jojofromct, The waiting game is something many of us go through. I know that you are scared right now. That is normal as well. But believe me the more you read here the more you will understand, and you will feel much better about all of this. I know that sounds strange, but knowledge is power! Six months ago my cardio told me that I would need valve surgery within a year. So I waited, and armed myself with all the information I could get my hands on. After many doctor appts, (second opinions where no one agrees on anything), I sat with my cardio and he explained to me how we really know that it is time. Now its a numbers game. We will retest every few months until my condition REQUIRES intervention. One thing that I have learned through all of this is that ALL valve conditions are different, and depending on what your fathers problem is will determine what the doctors are waiting for, and when they will want to fix it.

Hang in there and read everything you can. Also have your father get copys of all of his tests.....ie echos etc. I am also right up the street and would be more than happy to help in any way I can. I can not comment on your fathers specific situation, sorry, but I am sure others will come along and give you more information soon.

Good luck,

Steph

 

[Phyllis]

Welcome, JoJo. You've come to the right place for knowledge and support- the two most important things you need in the waiting room. I'm sure others who have been operated on while on Coumadin will come along and offer their experience and knowledge. It is scary when you first get the word, but the statistics for this operation are very good and he will do fine. There is no reason that he cannot get an opinion from a surgeon even though his cardio has not suggested it yet. A second opinion or even more is always a "good thing"! Best wishes to you both.

 

[WayneGM]

Welcome to the VR community, jojofromct. Glad you found us.

Being nervous and worried is normal. There's lots of members who are in the waiting room, some for quite some time. I'm sure some will come by with their insights. That said, I echo getting a second opinion from a surgeon, particularly if your Dad is at the point where there is some heart enlargement.

I had a mitral valve repair. When my Card first diagnosed me with modest regurg, I was told I'd likely need OHS to repair/replace but told to wait as it was not required yet. He scheduled me for follow-up check-ups at 6 month intervals. However, at the very first 6 month check point, the tests showed I'd gone from modest to severe regurg along with some enlargement of the heart chamber. At that point my Card referred me to a Cardiac Surgeon. The Cardiac Surgeon recommended surgery to repair but did say I was just at the edge of it being a necessity so I could wait a bit longer if I wanted to. However, he said surgery was inevitable, but could not say how long before it became an absolute necessity, so I decided to just go for it and get it over with. No regrets.

 

[EVELYN]

Hi Jojo

You have found a great place and a wonderful support group.....WELCOME!

I would have to agree with JIML who posted that you might also seek the opinion of a cardio-thoracic surgeon. Just my opinion, but I think cardio's tend to put off the surgery longer than needed and surgeons would rather see patients before there is too much heart enlargement. You might mention it to your family and see what they think.

I'm glad you're here, you will learn much. Be aware that you will go through stages with this disease. When I found this group I was SOOO scared I couldn't even function. They brought me through my husband's avr and that was in June of '02.....

Again welcome.

Evelyn

 

[jojofromct]

thank you all so much.
I have mentioned to my father about a2nd opinion, but he states he has much faith in is cardio doc. So, thats that pretty much, I cant force him to get another opinion. He really believes in his doctor.
Its so scary. Like right now, I am at work and my day is starting in 10 minutes and I cant even think straight. I am worried about him, he is at work and works moderate labor and I am afraid what if something happens to him at work. I mean, thats where he had his stroke 11 years ago. My husband tells me you cant worry about the WHAT IF's. My mom broke down to me yesterday big time. We went shopping for a little bit and she is so worried about my Dad too. I was being strong for her.
This site is wonderful. The cardio said my dad will have a mechanical valve replacement and also my mom said they are watching his numbers, it all goes by numbers. I dont know anything, all I know is we have to wait.
I would love to hear more from all of you, and if anyone ever had to wait and if anyone knows anyone that had this type of surgery while already on Coumidin.
Thank you everyone

 

[Karlynn]

Welcome Jojo. I'd like to recommend that you encourage your father to come here and do some reading, and even join. I'm very glad he trusts his cardio. Tell him that asking his cardio to refer him to the surgeon he thinks would be doing his surgery, in order to speak to him is not necessarily getting a 2nd opinion, but preparing himself for what sounds like is going to be the inevitable.

It is very true that cardios seem to like to wait longer, possibly even wait until they see damage being done, before they think surgery is needed. Surgeons want to get in and fix the issue before damage is done and when it comes to the heart - this is the much preferred approach. So speaking with a surgeon is the thing to do in order to prepare.

Your Dad also needs to have a surgeon that is experienced in valve surgeries and does a lot of them. Valve replacement is a very successful procedure with a low mortality rate, but you also want to improve your chances by having a surgeon that does mostly valve replacements.

In turn, an experienced valve surgeon will know exactly how to manage your Dad's Coumadin with the surgery. The general protocol is they will remove him from his Coumadin about 5 days prior to surgery and put him on either Lovenox or Heparin. These drugs leave the body much more quickly than Coumadin, then probably 12 hours before the surgery they'll stop that drug, do the surgery and put him back on his Coumadin right after the surgery with Heparin to protect him until his INR is back in range.

Best wishes.

 

[Karlynn]

Also, please let your father know that getting his issue reviewed by a surgeon is going to give him the comfort of knowing he can plan his surgery, when the time comes, to fit in with his schedule. He most likely does have a year, but a surgeon can verify that. You don't want him faced with emergency valve replacement. If his cardio is a good doctor, he would welcome your father getting an opinion from a surgeon.

 

[PJmomrunner]

Hi Jojo:

There are many here who have gone where your dad is headed and there are also many "in the waiting room" with him. Yes, it's very manageable for one on Coumadin to have surgery. His doctors will take him off the Coumadin several days before surgery and give him a different kind of anticoagulation medication, that's effects don't last as long as Coumadin's, up until the surgery. After the surgery they'll give him both Coumadin and the short-acting medication until his Coumadin level is where it should be.

Jim's suggestion that your dad get a second opinion from a surgeon is a good one. While I can't speak for everyone on VR.com, there does seem to be a consensus that cardiologists tend to wait a little longer to recommend surgery than we sometimes think is optimal. They seem to be more comfortable with managing a patient's symptoms and allowing more heart enlargement, which they help the patient to recover from post-surgery to the extent that the heart can. A good surgeon won't operate before it's necessary, of course, but surgeons tend to want to operate before there's a lot of damage done to the heart, allowing the patient to recover with a stronger heart. They both adhere to the same criteria so the difference can be anything from a nuance to completely different perspective. At any rate, he's going to need a surgeon eventually, so why not start shopping?

He's going to be okay. You are a good daughter to be out gathering info and support. Being his advocate, particularly when the time comes to hospitalize him, will very likely make his experience all the smoother.

All the best to you and your dad.

 

[Susan BAV]

Hi JoJo and Welcome to the Site! Glad you found it!

I, we here actually, understand how scary it is, for you and your mom and for your brave dad. Your husband is right about not worrying about the "what ifs" but tell that to your heart as you worry about your dad; it's hard, isn't it?

Do you know which valve your dad needs replaced and why? Is it deformed, maybe at birth (for example, a bicuspid aortic valve)? Is it, in hindsight, the possible cause of your dad's stroke from 11 years ago? Does your dad have some abnormal rhythm issues also? Does he have symptoms of the valve declining? Some symptoms are sometimes hard to define but could include overall tiredness/exhaustion, etc.

Getting someone else to see the value of a second opinion can be difficult sometimes. But it also seems to be true that, "due to the nature of the beast," cardios tend to medicate problems that are getting worse, maybe even good cardios; whereas a surgeon would prefer to do surgery before the valve problem has caused worse internal heart problems. And I believe that no good heart surgeon would operate on someone if they don't need it, so if your dad could consult with an excellent and highly recommended heart surgeon, it just couldn't hurt and might help.

I didn't know what to do after I saw one cardio, who was not a good one actually. At least not good for me. He brushed off my numbers and my obvious decline and my symptoms. I was becoming very ill then. My husband and I really didn't know what to do. And I didn't want to rush around to a bunch of doctors and look like a hypochondriac (is that spelled right?). Anyway, I eventually found this site, and among all the research, I also read some of the stories at the beginning of the site in the story section and I realized that things I had just assumed were due to aging (I was 42) could actually be valve deterioration symptoms. Some of the stories absolutely mirrored my life. I printed a couple off for my husband to read and he was absolutely shocked too at the similarities.

So, we didn't just consult with one surgeon; we consulted with three surgeons, to be sure we were doing the right thing. And I was worse than we thought; and that cardio that we had gone to months before was wrong, almost dead wrong for me.

My point is that a second opinion, or a third, or a fourth probably can't hurt and might help. I'm amazed at how much better I feel with the new valve!

We all hope things go really well for your dad. Take care and post again.

 

[jojofromct]

Thank you all so much. All this talk about a 2nd opinion is scaring me bad. Has anyone NEVER got one? I asked my dad if he wanted to do that and he said no, he had faith in his cardio doc. I will mention to him maybe he should meet with the surgeon just to educate himself, I dont think he will though. I am going to tell him about the website though. I have heard from people that his cardio doc is very good and the surgeons on the tream are excellent. Can I mention the name of the place on here? I was not sure, let me know and I can tell you all.
Anymore insights or encouraging words?

 

[jkn2kids]

i have been waiting for 3 years for valve and aneurysm surgery.i have finally reached the point where i can't stand the wait any longer,so i'm having surgery on wednesday.my valve size has shrunk from 1.5 cm to 1.2 in 3 years but this is higher than the surgery threshold of 1.0 cm.i have decided to have surgery on my timetable before more symptoms set in that may damage my heart even more.your father has the right to have an operation before the valve gets any worse and symptoms multiply.his best course of action would be to ask the cardio who he would recommend as the best surgeon to eventually do the surgery,then have your father go and talk to the surgeon based on the cardio's recommendation.good luck.

 

[WayneGM]

Despite my earlier advice, I didn't seek out a second opinion. Like your Dad, I trusted my Cardio, mostly because I knew nothing about heart valves (I didn't find VR.com until after my OHS) so figured he was the expert. I actually did not know anything about the Cardio either, but I trusted my GP of many years who referred me to him. In my work, I deal with "subject matter experts" all the time so I guess I'm conditioned to trust the experts. When I met the Cardio, I felt comfortable he knew his stuff, so was confident he would steer me right.

Anyway, that's just my nature so I was also not worrying about the waiting even though the Cardio thought surgery would be the eventual outcome. If I was worried, then I probably would have sought a second opinion just to put my mind at ease, hence my advice to you. If in doubt, a second opinion can't hurt.

Lots of members post the names of their doctors, hospital/clinics, etc so I assume it's ok. I never gave it any thought, although I've had nothing but praise for any I identified so I guess that's unlikely to cause a problem with them.

 

[jojofromct]

When my father has the surgery it will be at Danbury Hospital I believe, his cardio doctor is Dr Felder. They have a huge cardio team. ANyone hear of them before?

 

[Phyllis]

I did a search and came up with the cardiac surgery site for Danbury hospital: http://www.danhosp.org/DH_cardio_ctsurgery_layout.cfm?id=200
You may want to take a look at it. They do minimally invasive surgery for valve replacement. The question is- how many have they done? Being in Waterbury, would your father consider getting an opinion from one of the larger teaching hospitals such as Yale New Haven or Hartford Hospital? When we knew Dick needed valve replacement, we interviewed a surgeon at Yale, but in the end decided on Dr. Cohn at Brigham in Boston. Yes, it is more convenient to go locally, but it is worth the inconvenience to get the best surgeon you can.

 

[sylviayasgur]

hi jojo,
welcome and i'm so happy you found this site. everyone here is so knowledgeable, supportive and just plain wonderful.

my father had his second ohs last year. he had a mechanical valve implanted in the aortic position 7-8 yrs ago and has been on coumadin for 9 yrs due to chronic afib. being on coumadin already, he felt he'd opt for the mechanical valve which would require that anyway.

last year his mitral valve was repaired by minimally invasive surgery done at nyhospital, dr. stephen colvin. he was up and around within a few days, but had to remain in the hospital while his coumadin levels were adjusting.
he was on the golf course a month later and has been doing well since.

if your father is set on his cardio, then maybe get a few opinions from different surgeons. i assume your dad would want a mechanical valve since he's already taking coumadin? or would he look into a minimally invasive procedure? these are things you'll learn about when meeting with surgeons.
i also think that you will feel more comfortable after seeing one or two surgeons. you'll gain more knowledge and confidence in the procedure.

please let us know how things go. your dad is lucky to have such a loving and caring daughter in you.
all the best,
sylvia

 

[CathyK.]

Welcome!! I just had a valve replacement on Feb. 9th and I was waiting for 4 years until the valve and my symptoms were bad enough to go in for open heart surgery. I was monitored every 6 months in that 4 year time. They would do an echocardiogram on my heart at each visit and compare the numbers. Once my symptoms got worse, it was definately time to do something. My symptoms were fatigue that kept getting worse and some shortness of breath that got slightly worse.

I now feel so much better than before. I kept working and doing everything around the house and such until my surgery. They just advised me not to lift anything too heavy.

Keep asking your questions here and you will get alot of people who have been there and done that to answer you. Good luck to you, your Mom and your father.

Oh, I never got a second opinion either. I really trusted my Cardio and he actually thought I should have surgery before my surgeon. So everyone is different. I loved my surgeon also. Both were very personable.

 

[Karlynn]

2nd opinions aren't something to be scared about. If anything it should give you, your Dad and your family the comfort that you know exactly what the status is of your Dad's valve. Many insurance companies even require 2nd opinions for some procedures. (Of course this has to do with $$$$ ) 2nd opinions are a very common practice in the medical community.

Maybe you could tell your Dad that he might be comfortable with no second opinion but that you'd like him to give the rest of the family the security of a surgeon's opinion. Assure him that you are not trying to rush him under the knife, but the a valve surgeon has the best understanding of when the optimum time is to operate.

Many 2nd opinions are just a matter of sending copies of all your Dad's tests and any other pertinent information to the doctor.

Best wishes.