Honest Opinions?

[Ovie]

Alright, so I wanted to get some insight from the community. I try and find out something new every night and this has been on my mind ever since my AVS date has been set.

Ive read about people on here waiting a good amount of years before getting their surgerys done. My information came this last summer and my Cardiologist told me I had 1-4 years to get it done. I'm not in the greatest shape and a smoker so obviously I'm not physically able to run marathons and get tired easier than I should. That being said I really haven't felt THAT bad, the last couple weeks I feel more fatigued and occasionally light headed.

My insurance is over April 27 of this year ( my birthday ), so basically my parents are rushing me to get this done before its done ( understandable ), but even after that's done I'll still have check ups, medications, programs that won't be covered, granted medication and the actual surgery are dollars apart, I get that.

But i feel like I'm just being thrown under the knife so quickly, is that possible? My surgeon said yes my valve is expanding and should be done, but I didn't get the feeling of urgency from him. It could be due to ( I won't lie ) I'm still kind of in denial.

But I wanted to get people's opinion if I'm rushing it due to what could be financial issues or once they find a problem, even due to the severity of it being low at the time ( or high ) is there such a thing as too early?

Thanks!

 

[kfay]

Ovie, Your surgeon and cardio aren't going to recommend you for surgery if it isn't warranted. Your surgeon doesn't seem like it is a rush because you obviously aren't an emergent case and you have some time, however, you don't want to push it. It is better to get the surgery done before permanent damage is done to your heart, and even though you say you aren't in good shape, you are still a healthy person who will get through the surgery easier than if you wait until your heart is in really bad shape.

As for not having surgery after April, if I were you, I'd be working on finding a replacement for that now. I'm assuming after April you will be too old to be on your parents policy anymore. Are you still a student? Or looking for a job? Have your parents looked into converting your policy you have now into a private policy? I realize it will be expensive, but one trip to the hospital can cost much more than any premiums you may have to pay.

And by the way, quit smoking today! It will make your surgery much easier.


Kim

 

[Jason]

I agree with everything kfay said, especially the part about quitting smoking. I smoked until I was 35, and quit for a new years resolution. I had tried before, but wasn't successful until I resolved to quit for a month. Knowing that after a month I could have another one if I wanted made it possible for me to quit, although perhaps it won't work for everyone. After the month was up, I didn't want one very much, and after having one I realized that I didn't crave it or like the smell any more.

Two years later, the nurses, docs, and surgeon all commented on quitting smoking well before my surgery. It reduces your blood pressure, helps with recovery as blood flow is better, etc. As you can tell, I am now a converted smoker and think you should be as well!

I will be thinking of you as you prepare for your surgery...

 

[Superbob]

I second and third what Kim and Jason said. The bill for surgery and follow-up would be staggering without decent insurance No matter when you and your surgeon decide to do the surgery, I would be making arrangements now to stay on insurance. And if you quit smoking, you will be much better off going into surgery, and then far, far better off recovering and starting a new, healthy life.

 

[Lynlw]

Alright, so I wanted to get some insight from the community. I try and find out something new every night and this has been on my mind ever since my AVS date has been set.

Ive read about people on here waiting a good amount of years before getting their surgerys done. My information came this last summer and my Cardiologist told me I had 1-4 years to get it done. I'm not in the greatest shape and a smoker so obviously I'm not physically able to run marathons and get tired easier than I should. That being said I really haven't felt THAT bad, the last couple weeks I feel more fatigued and occasionally light headed.

My insurance is over April 27 of this year ( my birthday ), so basically my parents are rushing me to get this done before its done ( understandable ), but even after that's done I'll still have check ups, medications, programs that won't be covered, granted medication and the actual surgery are dollars apart, I get that.

But i feel like I'm just being thrown under the knife so quickly, is that possible? My surgeon said yes my valve is expanding and should be done, but I didn't get the feeling of urgency from him. It could be due to ( I won't lie ) I'm still kind of in denial.

But I wanted to get people's opinion if I'm rushing it due to what could be financial issues or once they find a problem, even due to the severity of it being low at the time ( or high ) is there such a thing as too early?

Thanks!

When you need surgery, or is the best time for sugery depends on a few things, different measurements of your heart (size of Aorta, valve, gradient of blood flow, size of ventricles etc) are the guidelines about when it is time to operate to prevent permanent damage. Usually things are broken down into, different catgories, mild, mod, severe) I would have hoped your docs went over all your tests and told you why they think you need surgey now. The reason many members are able to wait years, was their problem was picked up relatively earlier before they reached the reccomended guidelines for surgery . Which pretty much boil down to when the benefits of having surgery outweigh the risks of the surgery. Yes it is possible to have it too soon, especially if you are relatively young, it wouldnt make the surgery dangerous or anything, it could possibly mean you are living with your new valve longer than you would need to, in case of a tissue valve, that basically starts the countdown to your next valve and with a mech valve increases the amount of time you are on anticoagulents and gives your body more years to do some of the thigs like grow excessive tissue that are the reason some people need REDOs even with a mech valve.
Then there is the fact that even tho the stats are very good for valve surgery, there still are risks and things can go wrong..all of that is figured into the reccomendations of when is the 'best" time to have surgery. Of course if you wait too long you risk permanently damaging your heart or having a tougher time recovering.

Since you seem unsure IF it really is time for your surgery, I would get a second opinion, most likely they will say the same thing but then at least you wont always second guess if it was the right thing

ps I just remeberred your having surgery at the mayo, I really doubt anyone there would reccomend heart surgery on someone in their mid 20s (or really any age) if it wasn't time.

 

[bradvo]

Alright, so I wanted to get some insight from the community. I try and find out something new every night and this has been on my mind ever since my AVS date has been set.

Ive read about people on here waiting a good amount of years before getting their surgerys done. My information came this last summer and my Cardiologist told me I had 1-4 years to get it done. I'm not in the greatest shape and a smoker so obviously I'm not physically able to run marathons and get tired easier than I should. That being said I really haven't felt THAT bad, the last couple weeks I feel more fatigued and occasionally light headed.

My insurance is over April 27 of this year ( my birthday ), so basically my parents are rushing me to get this done before its done ( understandable ), but even after that's done I'll still have check ups, medications, programs that won't be covered, granted medication and the actual surgery are dollars apart, I get that.

But i feel like I'm just being thrown under the knife so quickly, is that possible? My surgeon said yes my valve is expanding and should be done, but I didn't get the feeling of urgency from him. It could be due to ( I won't lie ) I'm still kind of in denial.

But I wanted to get people's opinion if I'm rushing it due to what could be financial issues or once they find a problem, even due to the severity of it being low at the time ( or high ) is there such a thing as too early?

Thanks!

Sounds like your parents know what there doing , just my opinion. They love you and want you around.

Brad

 

[Mentu]

The problem most people have is that cardiologist want to wait to recommend surgery while the patients symptoms develop. Cardiologists and surgeons will not recommend surgery unless they believe it is necessary. That you have few symptoms is good because there is less possibility of permanent damage to your heart. If you delay surgery, you will only feel worse with time and there are no drugs that really help.

I must tell you that I have very strong views about smoking. Smoking damages your lungs and your cardiovascular system. My observation is that smokers have a more difficult recovery as they are more susceptible to lung infections. I would hope that you do decide to have your AVR as recommended by your doctors and that you use this opportunity to change your life. Your goal for recovery should be to become a normal healthy person again. This requires that you work at your recovery. Early on you must do breathing exercises to restore your lung function while they recover from being collapsed during surgery. Smoking would make this more difficult. As well, you must walk during the early months both for your lungs and to restore normal cardiovascular function. All of this will be harder if you are smoking.

It is difficult to learn that you have a terminal disorder as is aortic stenosis. You are fortunate, however, to live in a time and place where your heart can be repaired and your life restored. When you choose surgery, you choose life. Why, then, would you compromise your recovery and your future by continuing to smoke? Surgery will change your life, Ovie. This is an opportunity for you to work for a better healthier future.

Larry

 

[Marcia58]

Hi Ovie! I haven't been around here much lately, but I'm gonna weigh in anyway. One thing you need to remember is that when a heart condition goes south, it can do so very quickly. I lived with my valve for 30+ years, then in 2009, I went from "no restrictions" to short of breath and swollen extremities in a week's time!

The fact that your cardio and surgeon are agreeing is a strong indicator that it really is time.

As far as the smoking issue.... Nicotine constricts blood vessels, which decreases blood flow throughout the body, which decreases oxygen and nutrients to the cells, which significantly increases healing time and risk of complications.

But it's your call....:rolleyes2:

 

[Jkm7]

Marcia took the words out of my mouth.....

We have found here the worse a valve gets, the faster it gets worse.
Once it really starts to be a problem it can become a bad problem quickly. There is a point of no return.

You always want the surgery prior to permanent heart damage.
Surgeons will not operate before certain criteria for severity are met. Cases are reviewed through hospital committees and there are parameters that are widely accepted as 'landmarks' for proceeding forward with surgery.

Get 'er done. No valve has ever improved itself for long term quality and longevity of life.

 

[dick0236]

Alright, so I wanted to get some insight........... is there such a thing as too early?

Thanks!

Given the consequences:eek2:, I would much prefer being "a little too early" rather than "a little too late":wink2:.

 

[DanielB]

I was told "4-6 years" when diagnosed, then I started getting symtoms less than a year later (shortness of breath, fatigue, etc) so my carduiologist gave me the option of moving ahead with the surgery. I did, waiting six months for a good time of the year for my work. As it turned out, it was a good thing I went ahead when I did -- the surgeon told me that my old valve "was shot". All things considered, I am glad I chose to move ahead while things were in my control and my health seamingly the best it was going to be.

As far as the smoking, I am not a smoker, but I do recall my anthesiologist telling me the morning of surgery that my not being a smoker made his job a lot easier, so I would reccomend trying to stop smoking ahead of the surgery if possible.

Best of luck in whatever you decide to do.

Dan

 

[Boston Tiger]

I had roughly a year's wait between the time my primary care physician discovered my murmur and my surgery. At my first meeting with the cardiologist, he told me that I would need surgery at some point given my regurgitation, but that might be in six months or in ten years. When I came back in six months, he told me it was now time, and he said that I should have the operation within four or five months, before the damage to my heart went too far. I was still in shock then, because I didn't think I had any symptoms. We looked around for surgery options, and I had my operation three and a half months from being told it was needed. The delay was so that I could arrange things at work and move my son back from college at the end of the year. But my symptoms also developed and then worsened during that same period, and the surgeon and cardiologist told me they were glad I didn't delay things any further.

I agree with everyone else on the quit smoking issue. The patient in the room next to mine in the CICU was a heavy smoker, and he had a hell of a time with his lungs in recovery.

 

[tobagotwo]

If you don't do it now, and your insurance runs out, you'll wind up in a position where you have to get it done, and you won't have insurance to cover it. This will be considered a "pre-existing condition" and it won't be covered, even by any new insurance you do manage to get before you have the surgery. Don't count on the current Health Care bill to help you - most of the Republican candidates have promised to deep-six the upcoming insurance benefits, among which is the requirement for insurance companies to accept responsibility for their customers' pre-existing conditions. You don't know who's going to get elected or what's going to happen.

Remember, when you get to the point where you absolutley need it, the alternatives are only surgery or death. There are no other options, last-minute outs, or re-dos.

The surgeon sometimes has to temporarily collapse a lung during the surgery. From the time you wake up, it's very important to get that lung open fully again. In some cases, when people don't or can't manage to try hard enough, it can actually seal itself closed again, and you just lose that part of the lung (yes, it definitely interferes with your life).

I smoked for 30 years, quit five years before my first AVR. I was out of the hospital in three days. It would've been a week if I hadn't quit. Lung exercises (with a spirometer) are among the first things you have to do afterwards, and it won't feel good doing them if you're hacking and gagging while you do it. Coughing and sneezing are very, very unpleasant with a wired-together rib cage.

Welcome to the forum, and please ask all the questions you want. No matter what you've got going on with valves, you'll find someone here who's had almost the same thing, or felt almost the same way.

Best wishes,

 

[Lynlw]

If you don't do it now, and your insurance runs out, you'll wind up in a position where you have to get it done, and you won't have insurance to cover it. This will be considered a "pre-existing condition" and it won't be covered, even by any new insurance you do manage to get before you have the surgery. Don't count on the current Health Care bill to help you - most of the Republican candidates have promised to deep-six the upcoming insurance benefits, among which is the requirement for insurance companies to accept responsibility for their customers' pre-existing conditions. You don't know who's going to get elected or what's going to happen.
Remember, when you get to the point where you absolutley need it, the alternatives are only surgery or death. There are no other options, last-minute outs, or re-dos.

The surgeon sometimes has to temporarily collapse a lung during the surgery. From the time you wake up, it's very important to get that lung open fully again. In some cases, when people don't or can't manage to try hard enough, it can actually seal itself closed again, and you just lose that part of the lung (yes, it definitely interferes with your life).

I smoked for 30 years, quit five years before my first AVR. I was out of the hospital in three days. It would've been a week if I hadn't quit. Lung exercises (with a spirometer) are among the first things you have to do afterwards, and it won't feel good doing them if you're hacking and gagging while you do it. Coughing and sneezing are very, very unpleasant with a wired-together rib cage.

Welcome to the forum, and please ask all the questions you want. No matter what you've got going on with valves, you'll find someone here who's had almost the same thing, or felt almost the same way.

Best wishes,

Even if the bill stays in place, the preexisting condition part doesnt kick into until 2014, I believe. some states do have high risks..very expensive pools right now, but I wouldnt count on being able to get insurance with pre existing conditions until 14..

 

[dcc617]

Even if the bill stays in place, the preexisting condition part doesnt kick into until 2014, I believe. some states do have high risks..very expensive pools right now, but I wouldnt count on being able to get insurance with pre existing conditions until 14..

I'm making the assumption that you're terminating from your parents insurance because you're turning age 26. Correct? (I'm assuming that the coverage is through their employer) Also, part of HIPAA (the original part) waives the pre-ex limitation if you're covered within 63 days from the end of the last insurance. Many employer plans have even removed the pre-ex portion of their policies. However, it totally depends on the contract. Unfortunately, you would not be able to apply for individual coverage based on your condition.

You might be able to extend your coverage through COBRA. (assuming that the coverage you're currently on is a group health plan) The premiums most likely will be higher. But it could extend your coverage. If this is a group policy, ask what the premiums are. They'll be 2% higher than the billed rate. Lynw is correct about the High Risk state pools. Those plans are written to cover people who have reached the end of their coverages and aren't able to get anything else. However, those premiums are usually extremely high and don't offer the best coverage levels.

The other issue you could potentially run into would be if you have the procedure without having a medical necessity. Silly as it sounds, a doctor would need to verify that you need the surgery now and not simply because of convenience. In reality, who would perform heart surgery without a need, right?

Part of the surgical fee includes the follow-up visits with the surgeon. (standard practice) However, visits for cardiac rehab and anything with your cardiologist would be separate. This also includes Rx drugs. However, many doctors receive Rx samples from their pharmacy rep and will give you a small supply if you tell them your situation.

All of this aside - talk to your doctor and be upfront about your situation. You need to partner with your doctors. You are your best advocate.

 

[Jkm7]

If you have so little trust and faith in the surgeon you are consulting with, that is not the right surgeon for you IMO

If you do not trust he is telling you straight that you need this surgery now, please be good to yourself and get a second and even third opinion.

Trust in your heart surgeon is mandatory IMO There is no option to submitting to this surgery without it.

 

[Ovie]

I have alot of faith in my surgeon so I believe when he says it's time, it's time. I just didn't know if there were risks getting it earlier. Yes, my insurance runs out because I'm on my parents. I've looked into Cobra but were looking at quite a bit of money a month. I made it my New years goal to stop smoking and so far so good, granted its only been 2 days, it's already difficult but I feel commited to stopping mainly because of the surgery so I'm on my way Also, do they always deflate a lung? I had never heard that?

 

[kfay]

I know Cobra is expensive, but it will be much less expensive if you have any complications that require treatment of any kind. Not to mention, the follow-ups that will now become a part of your life. My visits to my cardio's each year would cost me more than $3000 if I had to pay out of pocket, instead, I only pay $60 total. Short of not being able to eat or becoming homeless, I would do everything I could to keep that insurance!


Kim

 

[dcc617]

I have alot of faith in my surgeon so I believe when he says it's time, it's time. I just didn't know if there were risks getting it earlier. Yes, my insurance runs out because I'm on my parents. I've looked into Cobra but were looking at quite a bit of money a month. I made it my New years goal to stop smoking and so far so good, granted its only been 2 days, it's already difficult but I feel commited to stopping mainly because of the surgery so I'm on my way Also, do they always deflate a lung? I had never heard that?

The rules are this. You have 60 days to elect the coverage and then 45 days to pay the premium. Remember - that's 45 days from the day you elect it. (a maximum total of 105 days) You'll have to pay the back premiums and then monthly. You should have a 30 day grace period each month. (but it depends on how the group pays their premiums)

The other thing you have to remember is to abide by the rules of the plan. If you're on a PPO, ALWAYS ALWAYS ALWAYS use network contracted physicians and facilities. If you go out of network, you'll not only have to pay higher percentages but will be subject to Usual & Customary.

While COBRA may not be cheap, it will be cheaper than paying retail for that procedure.

 

[Guest]

I know Cobra is expensive, but it will be much less expensive if you have any complications that require treatment of any kind.

What Kim wrote.

Maybe I'm crazy, but I think I'd be a bit more focused on making sure you have a continuance of insurance coverage than whether or not surgery is "too early". In the long run, having insurance will be more beneficial....



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