Heart Valve problems

[RonaldHeart]

I'm new to these forums, so I'll just write a brief story about why I'm here.

My cardiologist has told me that I have two heart valves that are not closing properly and that ultimately I would need to have surgery to fix this problem. The problem is that I'm in such frail health right now that surgery would be too risky to perform. I'm taking about 5 or 6 new medications since this valve problem was discovered and I'm feeling soooooo tired and weak that I just can't do anything anymore.

My other health issues would be that I have diabetes and had a stroke 8 years old that left me partially paralyzed on one side of my body. I was fine up until my stroke and then I had a double bypass 2 months after the stroke.

Last July I had an angiogram and no blockages were found and no valve problems were seen at that time. Since an accident I had this past September, the valve problem has appeared and I suppose the accident may have something to do with this problem. I don't know.

What my concern is right now is that I really fear having surgery at this time since my doctor told me I have a 50-50 chance of even surviving the surgery. In my weak state I'm in now, I really don't think I would make it. I am wondering what alternatives there might be to the surgery and how can I help my heart get stronger if I do have to have surgery?

Any input you can offer would be great. Thanks.

 

[LUVMyBirman]

Hi Ronald,

Welcome to the group.

Just took a look at your profile. You are my fathers age. Still consider him a young man

If you were my father...I would be insisting a second opinion. No doubt the indication of surgery will not change.
But those odds. 50/50?

Take a good look at your medication. Alone, they can make you feel drawn out if your dosages are not correct.

Wishing you all the best. Please keep us posted on your progress.

 

[Nancy]

Hi Ronald-

Welcome to this terrific site. Everyone here understands about valve problems, and has either had the problem themselves, or have a loved one who has. Many have been in very difficult condition prior to their surgeries.

My husband has had 3 valve surgeries, 2 lung surgeries, has a pacemaker and has congestive heart failure, pulmonary hypertension and many other very serious problems. He's 72 years old, and is doing pretty well, in spite of all these problems. He takes 14 or 15 medications a day, some more than once.

Prior to his last mitral surgery, he was so debilitated that all he could do was to sit on the sofa, day and night. He couldn't breathe lying down, and could barely breathe sitting up. I would guess that most of the people here who have had this surgery were feeling so poorly prior to surgery that their condition was similar to my husband's before the valve was replaced.

Here is a link that will describe the different valve conditions and the attending symptoms, so you can measure how you feel:

http://www.tmc.edu/thi/valvetype.html

If where you are going now cannot help you, then you should be seeking a second opinion or even a third. There are many people here who have gone to Cleveland Clinic for their surgery. Cleveland Clinic does many high-risk surgeries and is able to deal with complications that other places can't. But it is also possible that there might be a place closer to you that could take a look at your problems. We have many members from Colorado.

I am a strong believer that one should NEVER give up, no matter what. What one doctor cannot do, another can. This is your life we're talking about, and all the stops should be pulled out to get you the help that you need.

Have you had an echocardiogram, ot TEE, or stress test? How do they characterize the nature of your valve problems? They go all the way from trace or mild to severe. And what are your symptoms?

So again, welcome, and I hope that you will stop by here often and fill us in on what's happening.

Best wishes.

 

[Karlynn]

Ronald,
Welcome! I hope you make yourself at home on this wonderful forum. It's filled with very knowledgable and supportive people. I echo Nancy and Gina's suggestion that you get opinions from other doctors, to make sure they are all agreeing on your issues.

I also had similar thoughts to Gina's when you mentioned medications and feeling so weak. Some medications can have significant adverse effects on your body. Zapping your energy is one very common effect. Ask your pharmacist what the side effects are and discuss them with your doctor. (A good pharmacist is worth their weight in gold) You'll want to try and find out whether your medication is contributing to yours and your doctor's view of your over all health. This isn't to say you should ask to stop the meds, it's just saying that it's good to have an understanding of what symptoms are medication related and what are directly coming from you physical condition. I have been on some pretty heavy duty medication in the past that really had me feeling badly.

Best of luck to you. Keep posting!
Karlynn

 

[Granbonny]

Hi Ronald

Hi Ronald

I looked at your user site too..You are 4 years younger than my hubby......and He is very young..Go back to your ID User site and post your meds..Maybe someone (Nancy) can inform you of their side-effects. Welcome to our site. Don't be bashful..ask any questions. We will get you thru this....Where in Co. do you live..We have many active members on this site that live in the Denver area..I'm sure they will post to this thread soon...Bonnie

 

[fyrfytr]

WELCOME!

WELCOME!

Hey Ronald,
Glad you have found this Great Site! You will find that everyone here is very knowledgeable and supportive. Stick around, ask questions and join in I am sure you will enjoy it as much as everyone else has.
There are a lot of us from Colorado on the site. I live in Sterling and had my surgery in Ft. Collins.
Take Care

Dave
___________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical

 

[sylviayasgur]

hi ronald!
welcome to this wonderful site. as mentioned before, the people here are so kind, sensitive to these problems, knowledgeable and supportive. their help has made dealing with my husbands avr and related issues much easier for me.
my father is your age and had a double bypass and avr about 4 years ago. at the time, he was very short of breath and unable to exercise at all.
he is doing very well and we are all happy he had it done.

i agree with everyone else here who recommended you check into your meds. they can sometimes make people tired. ask your pharmacist. in addition, i also think you need to find a cardio who can give you a second opinion.
this is your life. i would not give up so easily and take one doctor's word on the dangers of doing surgery. the valves will only progress in severity and waiting may not be the right thing.
there are quite a few folks from colorado on this site. hopefully they will come on soon and may recommend a cardio or two.
please keep coming back and letting us know how you do and what happens. we are here to help.
wishing you all the best, sylvia

 

[RonaldHeart]

Thank you all very much for making me feel welcome here.

I'll be sure to update you with any new information as it comes up. And as some have suggested, I'll go get a list of all my medications and post that later.

From what I've been told, my feeling of being extremely tired and weak is a direct result of the heart medications since that is what typically happens when someone takes those drugs. So it's not a matter of stopping them or lessening the dose. I'm supposed to be on this dosage even though I feel so tired and weak. My cardiologist did say that based on my echocardiogram test in October, my results indicate that I'm 50% of what I was back in July when I had no valve problems. I guess there's improvement of some kind. I don't know, there's so much I have to understand about all of this. My wife and I are looking into getting 3rd and 4th opinions. The 2nd opinion doctor said he wouldn't risk surgery at this time. We need to figure out what other options are out there for who to see. We live in Colorado Springs. Maybe there are specialists in Denver that might be able to shed some light that no one here is able to do.

I, too, don't feel like I can do anything right now. I rarely leave the house and when I do, I get so tired just walking from the house to the car in the driveway. Having paralysis from a stroke in 1995 doesn't help either. At least I'm on oxygen and I definitely feel that is a must.

Well, thanks again for letting me share how I feel. I'll update again when I know more. I really, really appreciate all the input any of you can offer. It's nice to know that there are others that have been through the same difficulty and that they are doing better now.

 

[ALCapshaw2]

Welcome to our world Ronald.

If I were in your situation, I would seek a referal to a Heart Surgeon who specializes in HIGH RISK patients. They do exist, but not at every hospital.

One of the characteristics of Severy Valve Disease is exactly what you describe, namely severe lethargy and shortness of breath, especially on exertion. Typically this does NOT get better with medication, only surgery. MANY of our members have found very significant improvement in their capabilities following surgery.

Be aware that there seems to be a confict in philosophy between Cardiologists and Heart Surgeons. Cardiologists seem to prefer to postpone surgery as long as possible. The Down Side to this philosophy is that PERMANENT DAMAGE can be done to your heart muscles /walls when the heart is compensating for a valve that is nearly closed. SURGEONS like to operate BEFORE this damage occurs. I side with the surgeons. I believe I got to surgery 'just in time'.

You can find ratings for Hospitals by procedure on www.HealthGuides.com Surely Denver has a good
heart hospital.

The Cleveland Clinic is the #1 rated Heart Hospital in the USA and probably in the world. Several of our members have gone there for their surgery.

Best wishes in your search for relief.

'AL'

 

[RonaldHeart]

I did speak to a heart surgeon and he said he didn't want to do my surgery. He was the guy that told me I had a 50-50 chance of surviving the surgery. My wife is going to contact another cardiologist this week and make an appointment with him. You know these doctors, though. You may want to see them as soon as possible, but they have to fit you in when they can. We'll take it from there and see what that doctor says and see if we can get referrals for surgeons and for any info on what Denver might be able to offer me.

In the meantime, I'm going to update my profile and include my medications now.

 

[maxximom]

Hi Ronald
I see that you already have have received some wonderful advice already. We all know where you are coming from and your concerns, and understand.
If this is of any help. I was 70 years old when I had my triple bypass and Aortic Valve replacement. I am a non insulin dependent Diabetic and obese. The Doctors here at Duke were not in the least bit disturbed by any of these medical problems..they have seen them all and a lot , ot worse than mine. Duke is a large teaching hospital and high (#%) list best Heart Hospitals in the country. This is just the type of Hospital that you should seek out..where "high risk" is a everyday proceedure to them. Cleveland Hospital has been mentioned and is THE top hospital in the country. You can have your records sent there for a opinion, without actually going there. This will save some of your energy.I remember how short of breath and tired I was too..just going from the house to the car..no question that the combination of your Valves and medications and your stroke can wear you down. Please look into a large teaching hospital and a surgeon that works with high risk patients..try not to be "scared" and with infomation and education..you will find strength
Joan
AVR, triple bypass 9-25-2000,Duke Medical Center, Dr Donald Glower, St Judes Toronto Stentless Porcine Valve..OINK!!!

 

[Rain]

A Coloradan...

A Coloradan...

Hey Ronald!

Nice to see another smiling face from our beautiful state of Colorado. I live in Cortez... but I had my surgery in Denver. My cardio is in Durango, but PillarPaul knows a great cardio in Denver. I would recommend you talking to him. I'll get Paul to send you his name.

Of course I think I have the greatest surgeon... Dr. John Propp.

 

[RonaldHeart]

My wife finally found another cardiologist we can talk to for my third opinion. The appointment will be on the 19th. What we have found lately is that a lot of the doctors around here won't take new patients, won't take Medicare patients, or need written referrals from other doctors first before they will see new patients. So the doctor we found isn't requesting a referral and he has no problem with the fact that I have Medicare. We will ask this doctor and my primary cardiologist when I see him later this month for what should be done soon. Do they know of surgeons that can do high risk procedures? Is there a facilitary in Denver I ought to go to rather than here in Colorado Springs? We'll have questions for them for sure. It is making me feel somewhat better to know that other people have posted that they were in high risk situations as well and yet had the surgery and are doing so much better. That does give me confidence I can make it through the surgery, provided I find the right doctor to do it.

I'll let you all know what I find out from my appointment. Thanks again for all the wonderful encouragment you have given me.

 

[Nancy]

Best of luck, Ronald. I hope you have success with this doctor.

 

[RonaldHeart]

I have an update.

I went to see a different cardiologist last Friday, my third opinion, as to what should be done for my heart problems. This guy was very thorough. He had already done quite a bit of digging into my records prior to my visit with him, so he knew the whole story before I got there. He asked lots of questions and answered a few we had. Basically he said the surgery is a must and there is no way it can be avoided. He told us that I'll just get weaker and weaker and weaker without the surgery. The pills won't help my heart. Surgery is the only answer.

He immediately recommended that I see a surgeon in town on January 8. This surgeon was lured to town not too long ago from what he said because he supposedly is quite an expert in the field of heart valve surgeries. I'll meet with him and then take it from there as to what will happen next.

My wife and I were impressed with this cardiologist and we are thinking of keeping him and eliminating my primary cardiologist. It seems to us that he has been sitting on his hands all this time and here this new doctor jumps right away to work and tells us he'll fix me up. He doesn't believe in sitting back to see what happens like my other doctor. So hopefully we'll get good results with this doctor.

 

[MelissaM]

Hi Ronald,

Where in Colorado are you? Who are your cardiologist and surgeon? For some reason, there are several of us from all over Colorado on the forums. Who knows - one of us might have experience with your surgeon and/or cardio. . .

If my memory serves me correctly, we have members from: Sterling, Estes Park, Durango, Denver, Boulder, and Littleton. Where else, my fellow Coloradans?

Ross picks on us 'cause there are so many of us here. I just think it is because we need the experience climbing real mountains before we go climb Mt. St. Hellandback.

welcome to the forums!

 

[Nancy]

Hi Ronald-

If you have a new doctor that read your whole chart and all the information before you got there and took the time to be informed about your conditions, I'd say you have a winner. Sounds like a man you can trust and one who is interested in your problems and their solutions.

Congratulations, I think you're in good hands.

 

[Harpoon]

Just gonna echo thoughts on the Cleveland Clinic here...

I know it might be a hike if you're in Colorado, but if you don't find something you're comfortable with there it might be worth looking into. They have a nice arrangement with Hotel Intercontinental which is right across the street from the hospital complex for consierge and other long term stay neccesities. They'll work with you and your doctors to arrange a schedule for testing, transportation, and any other kinds of support services. They even run a shuttle sevice back and forth from Cleveland's airports so you don't have to worry about getting in to town, renting a car, then getting totally lost in a very large city and all of it's suburbs...

Maybe it's not the best choice for you, but they DO take the worst of the worst of patients and they're very VERY good at what they do.

My case was a bit unique in th I have a congenital heart defect and ended up spending all of my time in the Cleveland Clinic's Children's Hospital area, but they still have a very strong adult heart team and great transplant facilities.

They "set the bar" in patient (and family) care and treatment.

 

[RonaldHeart]

I live in Colorado Springs. The new doctor I have found is Dr. James Warren and he does seem terrific. I think he will work out to be a good choice for my new cardiologist.

Today I had an appointment with my original cardiologist and now I'm upset. He hasn't been following my case closely and even now when I told him I would be having surgery next month, he said that MIGHT BE A GOOD IDEA. Can you imagine? Also, he has been overmedicating me and that's why I'm so incredibly weak all the time. My blood pressure is extremely low and I just can't live like this. I don't have the energy to type on the computer, so I have my daughter do that for me and I just tell her what to say. I don't have the energy to do anything. This doctor has said to go ahead and stop taking all 5 heart drugs he had me on since my accident and that I should start to feel like I have a little more energy. We'll see. Either way, surgery must be done.

The surgeon's name is Dr. Mahan. I don't know his first name. Dr. Warren has all the faith in the world that he and Dr. Mahan can fix me up.

I don't anticipate having to leave the state for surgery, but thanks to those that wrote in with advice about excellent facilities in other places. I think I'll be able to get what I need here in Colorado Springs.

 

[fisher6476]

On the Right Track?

On the Right Track?

It sounds like you are on the right track! I must admit that it is very scary that as patients we could get so much medical MISINFORMATION. But that is the way it is. It points out the WE must take responsibilty for our own healthcare, and ask questions and more questions, and dig for second or third opinions or whatever it takes till we are comfortable we have the best solution for us. I hope you are on the way now to gaining some strengh, and that whatever the future holds will enhance your life. God Bless You!
Steve