Advise and suggestions please.

[bonbon]

I have been advised I have severe aeortic stenosis which requires the replacement of the aeortic valve. I have had this for many years unknown to me no doubt from R Fever as a child.
I have had the echo's done and nothing much seems to have changed since the last one 3 mo. (October to Jan.)
I look for symptoms such as light headedness, chest pain, etc but have few to report to my Dr.
I have been told not always do symptoms make themselves clear as what is the right time for surgery.
Needless to say I am terrified of the surgery and recovery that lies ahead. It seems there is no choice really as to the surgery unless you just decide to take your chances for the time you have remaining.
I have a appt. scheduled to discuess my surgery and would appreciate hearing from anyone who could advise me on questions I should be sure to present to him.
Sometimes this condition seems untrue, but echo's etc. don't lie so I guess I am struggling with denial trying to learn acceptance.
I thank each one of you that has any thoughts for me, for taking the time to share. I look forward to hearing from you.
Bon

 

[PapaHappyStar]

Sometimes this condition seems untrue, but echo's etc. don't lie so I guess I am struggling with denial trying to learn acceptance.

Bon

Hi,

Echo's are not very accurate, if you have echos from just one center/tech I would consider getting another done at a different center if possible. My AS was initially measured moderate and then severe at half the Aortic Valve area in a space of three months.

Usually in valve damage due to rheumatic fever there is damage to multiple valves in the heart -- if they find stenosis on just the aortic valve the valve is more likely bi-cuspid.

Other imaging techniques for diagnosing heart valve issues include cardiac MRI and a heart catheterization.

If you have severe stensis you should get a surgical consult ASAP to decide on a replacement for your valve. This whole situation is a bit of an adventure but there are many survivors here who live on to tell their hearty ( ) tales. I am two months post-op and feel great

All the best,
Burair

 

[bonbon]

Thank you for your response.

Thank you for your response.

Hi PapaHappyStar,
I am thankful for the info you sent me. I have had several Echo's done in seperate hospitals and never really had much detail given to me except it requires surgery.
My first Cardiac Dr. said is a very common surgery these days with many of them being done on a daily basis. Also said to plan on about a 6 day hospital stay but never mentioned to me things about how the procedure is done. Perhaps, that is what the surgeon tells me. I am just curious as to what size scar you can expect and how must your chest feel after it has been cut into like that. I read something about a "heart hugger" that makes things feel more secure inside you chest after the surgery is complete. Do not have a idea of what the length of time this surgery takes, or how much pain you must be in after it is over. They did tell me that really feeling better takes several months before you notice it. I guess I am just at a loss, since I didn't know I was feeling bad till after these tests were done. Sometimes I wonder if not feeling bad is part of what causes you to be in denial, and depression together.
I again thank you for you words and am glad thing are good for you now.
Have a great day.
Bon.

Hi,

Echo's are not very accurate, if you have echos from just one center/tech I would consider getting another done at a different center if possible. My AS was initially measured moderate and then severe at half the Aortic Valve area in a space of three months.

Usually in valve damage due to rheumatic fever there is damage to multiple valves in the heart -- if they find stenosis on just the aortic valve the valve is more likely bi-cuspid.

Other imaging techniques for diagnosing heart valve issues include cardiac MRI and a heart catheterization.

If you have severe stensis you should get a surgical consult ASAP to decide on a replacement for your valve. This whole situation is a bit of an adventure but there are many survivors here who live on to tell their hearty ( ) tales. I am two months post-op and feel great

All the best,
Burair

 

[PapaHappyStar]

I have had several Echo's done in seperate hospitals and never really had much detail given to me except it requires surgery.

You should be able to get an echo report -- maybe you have to sign a release form. You should get copies of diagnostic and treatment reports, they are very useful info for long term follow-up, and for your own education.

I am just curious as to what size scar you can expect and how must your chest feel after it has been cut into like that. I read something about a "heart hugger" that makes things feel more secure inside you chest after the surgery is complete. Do not have a idea of what the length of time this surgery takes, or how much pain you must be in after it is over. They did tell me that really feeling better takes several months before you notice it. I guess I am just at a loss, since I didn't know I was feeling bad till after these tests were done. Sometimes I wonder if not feeling bad is part of what causes you to be in denial, and depression together.

My scar is small considering I didnt have a minimally invasive procedure ( 5-6 inches ) but the size depends on the surgeon and the type of surgery performed. Minimally invasive techniques can give you a less noticeable scar, but this requires surgical expertise and may not always be indicated.

The surgery in my case took around 5 hours, 110 minutes of it with the heart clamped and arrested. The procedure I chose was a bit more involved ( it was a double valve procedure with the pulmonary valve replacing the stenotic aortic valve and a cadaver valve replacing the pulmonary -- this is known as the Ross procedure ) and took a bit longer than a conventional Aortic valve replacement. There was surprisingly little pain post-op and I dont even recall the pain anymore. I have been lucky with my recovery and have had no complications -- I think I feel better than I did pre-surgery, I cant tell yet if this comes from being psychologically under less stress or being in better shape physically. I also did not have clear symptoms before surgery just fatigue that I originally ascribed to being a new father and getting older.

I went through a phase, just after I found out about the AV condition, during which I felt very anxious and upset. You like me are doing the right thing by talking to the people on this board, it was a great help for me.

 

[JimL]

Hi Bon and welcome! Read around on the forum, since most of the questions you could conceivably have have been faced by lots of us before, and there are plenty of answers available. Your surgeon can give you more details on the surgery planned for you. Surgeons are generally more reliable than cardiologists for determining when to have the surgery.
You realize already that this is no ordinary surgery. Surgeons are doing them all the time, but this will be a first for you. My surgery was my first, and I wouldn't choose to do it again. Many of us find the surgery to be quite a life-changing experience: it gives us a whole new lease on life, and a whole new way of looking at life.
I thought there was plenty of pain involved in the surgery, especially the first time they had me sit up after surgery; but that's what the morphine button is for. By the third day after surgery, I was already refusing some of my pain medication.

 

[Nancy]

Hi Bon-

Welcome to the site. Sorry you have to be here, but it's a terrific place and you'll gets lots of support here.

My husband also had rheumatic fever as a teen. He's 73 now. He's had three valve surgeries. He has an aortic and mitral valve replacement with mechanical valves, and had a small repair on the mitral. He also has a pacemaker.

One thing you should remember is that this is something the docs know how to fix. Scary as it sounds, the surgeons who do this are in and out of people's hearts sometimes, a couple of times each day. They know how to take care of whatever is in inside there. And although the surgery is serious and very major, you will be taken care of by the best nursing staff in the hospital. Nothing is left to chance and you'll be carefully monitored all the time you are in the hospital. Surprisingly enough, the time you will be in the hospital is very short, on average 4-7 days. Recovery is about what you would expect from major surgery. The first two weeks will find you sore and weak, but after that you will steadily improve, and at 6-8 weeks, you'll be feeling well.

Come here often and ask all the questions you need to make you feel comfortable. I assure you that those here understand your concerns and fears.

 

[ALCapshaw2]

Welcome to our world Bon.

EVERYONE has those same quesitons after hearing the news that they need to have heart surgery!

I have had 2 OHS (bypass and AVR). For me, there was NO chest pain, just various degrees of 'discomfort' that were managed quite well by medication. I did have some INTENSE muscle pains that were relieved better and faster by MASSAGE than pills. This results from having your chest, shoulder, and back muscles stretched beyond their normal range of motion during the surgery. A vibrating disk massager works wonders!

It is not uncommon to feel 'asymptomatic' yet have serious valve disease. The tests are your best indicator. Echo's are the least invasive, followed by TEE, and heart catheterization (not a big deal but can be scary to contemplate the first time...I was freaked out but when it was over, I said "is that all there is"?)

I highly recommend that you obtain copies of all of your echos. There is a lot of information available on this forum about how to interpret the data. The TEE (TransEsophageal Echo) is more accurate than the standard echo. This test places an ultrasonic transducer down your throat for a better look at your heart. I've had 2 with no problems. Some people don't like having things pushed down their throats. With enough Versed and Demerol, you won't feel, remember, or care about anything.

Most patients find they don't sleep more than 2 or 3 hours at a time for a few weeks. Sleeping in a recliner or with 'body pillows' is usually more comfortable until the sternum begins to heal and feel solid. This can take a few weeks. It would be good to have someone with you for the first week (preferably 2) at home. After that, you will be reasonably mobile. You WILL have a weight lifting restriction (5 or 10 lbs) for several weeks with gradually increasing amounts until about 3 months. At 6 weeks, your sternum will be back to 80% strength and by 12 weeks you should be back to normal activities. Heavy weight lifting is not recommended.

There is a wealth of information in these forums. Look over the Pre-Surgery and Post-Surgery Forums for more ideas / information. Feel free to ask any questions that come to mind. Everyone here has been through it (or is a family member) and survived to tell about it. Success rates are 98-99% for first time surgeries when done by experienced surgeons / teams.

'AL'

 

[momshell7]

Some helpful information

Some helpful information

Hi, Welcome to the site!! You are now part of a very wonderful family. This site really gave me a lot of help when my husband had his surgery. I have provided some links that will hopefully be of use to you. The first one shows an actual valve replacement surgery. The second one is a link to a site that has three videos that show before, during and after surgery. The last one is a link to the heart hugger website. The heart hugger is a wonderful relatively new device. (Just a moment while I get on my soapbox. I think I have become the unofficial spokesperson for the heart hugger! ) the heart hugger is a device that looks sort of like a vest or bra. It is open in the front and has two handles in the middle that you grab and squeeze when you cough, sneeze, get up etc. This pulls you together so that there is less stress on the sternum and incision. You wear it 24/7 the first few weeks after surger. Not a lot of hospitals use them yet so I would suggest checking with your chosen hosptial prior to your surgery. You an buy them from the manufacturer for 70 dollars. They are well worth the price. There are a few others on here that have used the the heart hugger and have also given it a glowing review. My husband had his second surgery last October and he had one this time and he said this surgery was so much easier on him with the heart hugger than the one he had when he was 16. He is now 38.


Please feel free to ask any questions you may have. Also feel free to just come on an vent. This is a very scary thing to go through and everyone is here to help you get through it!!

Michelle

http://www.or-live.com/wfubmc/1155/

http://www.heartsurgery-hawaii.com/...ation_video.htm

http://www.hearthugger.com/flash.html

 

[Marguerite53]

you've come to a very good place...

you've come to a very good place...

Hello and welcome.

The many people here have been so helpful to me. Continue to ask any and all questions and you will be amazed at how much you can learn even in a short amount of time.

What I haven't heard mentioned yet is that when you get your new valve (I'm still waiting with moderate aortic stenosis) you will have a choice of valves! Your surgeon will guide you best on this, as he is the one who will actually be in there. However, there is much to know about valve choice and I would highly recommend becoming educated about them as soon as you can. I don't beleive you mentioned your age, and that is a factor in your choice.

The search button works very well on this site, so peruse it when you have some time.

Do get copies of all your reports so that the numbers and such that you read about here will have some relevance to you.

Good luck and keep coming in!

Marguerite

 

[bonbon]

Good Morning

Good Morning

I was so happy to wake this morning and find such a wealth of information shared with me for this condition. It certainly makes me feel I have a great support system to help me through this period. Many of the suggestions I have taken note of and will be requesting the information from my surgeon when I see him in a few days. So much wonderful advise to follow.
This is such a comfortable place to visit, and I am grateful to everyone that has made me feel so welcome.
I will visit many times on this journey thrilled with so many positive responses. Today, before I leave for work I feel less threatened and know I will receive answers I can rely on from people that been through this.and care. I hope each one of you have a fantastic day, I will visit again very soon.
Warmest Regards
Bon.

 

[BionicBob]

Lack of Symptoms

Lack of Symptoms

Bon,

I, too, have aortic stenosis, and have had echos at 6 months intervals and been followed closely for years. Now, I, too, face surgery. It IS hard to accept that this needs to be done when you aren't having alarming symptoms. I was doing regular gym workouts and taking my dog on long walks, and have no heart symptoms. (Was battling spinal stenosis, overcoming it with physical therapy -- but that's another issue.)

Anyway, in addition to getting second opinions from cardiologists, I have read everything I can get my hands on. This quote from the famous heart surgeon Michael DeBakey in his book, "The New Living Heart (Adams Media, 1997)," may help:

"... Surgical treatment should not be delayed until severe symptoms develop unless there are significant contraindications to operation. Studies have shown that after onset of symptoms in aortic stenosis, survival expectancy at 1 year is 50 percent, and at 3 years it is 20 percent. It is generally recommended that operation be performed in asymptomatic patients when a mean aortic valve gradient is 50 mm Hg or when the aortic valve area becomes 0.8 cm or less."

I won't cite the stats unless you want me too, but Dr. DeBakey goes on to say that results after AVR (done BEFORE severe symptoms) are generally "excellent." He adds: "Long-term results are good, with most patients resuming relatively normal lives."

Nothing is better than the wisdom imparted by the wonderful folks on here who have lived all this, but I thought I would add a little from the medical literature in case it's helpful.

All best of wishes to you.

Bob

 

[rmn]

Good post, Bob.

I, too, have struggled with the "how can I need OHS when I don't feel bad?" thoughts. When I really think about it, though, I wonder how much is just me putting things out of my mind, ignoring the occasional symptoms and convincing myself that I feel great. Deep down I think I know the truth, which is why I finally accepted the idea of doing surgery at this time.

My surgeon and cardiologist (and virtually every other health professional) I spoke with have convinced me that the one thing I DON'T want to do is wait too long. As it was explained to me, timing AVR surgery is nowhere near an an exact science and once you start showing symptoms - especially if, like I do, you have a tendency to ignore what your body is telling you - the damage may already be done. I'm just 34 and I can't risk the possibility of doing long-term damage just to postpone the inevitable surgery for a couple years. Still, it took me a while to come to grips with the idea of "elective" open heart surgery.

 

[dawnwit15]

Hi

Hi

Hi Bon & welcome to the family. I agree with Al's opinion on the TEE, it gives a more accurate picture of the problem at hand. I know your probably in an overwhelmed state just finding out the news, so remember to breath. You will get through this. I found that the anxiety leading up to the surgery was worse than the surgery itself. Don't be afraid to use the morphine button the first few days after surgery, that is what it's there for, to keep you as comfortable as can be expected after OHS. Hang in there, stay positive and read through some of the old posts on this site, you'll see your not alone. I will keep you in my thoughts & prayers. Best of luck to you.
Dawn

 

[BionicBob]

Button to Push?

Button to Push?

Dawn,

Just a quick question from someone nervously awaiting his first surgery Wednesday week:

What is the "morphine button" you mentioned?

Thanks for everything.

Bob

 

[gordy]

Tests

Tests

Hello bonbon. I would not have surgery without first having an echo, a TEE, and a heart catheterization. Combined, these 3 tests will give you a very good picture of your valve function. Also, the heart cath will give the Drs. a good look at your coronary arteries, and if you have some blockage a by-pass can be performed at the same time. To me the hardest decision was what type of valve I wanted. There is a lot of information out there, but try to be sure you are reading most recent literature, since the technology changes so quickly. I am only 8 days post-op, so I cannot tell you the whole healing process, but so far this experience was not nearly as bad has I had feared. There are some awesome people in here who helped me stay calm and confident counting down the days to surgery. The anxiety of waiting was definitely harder on me than the actual procedure. Best of luck to you; you'll be on the road to recovery before you know it.

 

[rmn]

Gordy, I don't mean to hijack the thread, but if you will, what are the things you have found you wouldn't want to be without in the days after surgery and what are the things you wish you had with you but didn't? Glad to hear your surgery went well and your recovery has been great so far!

Hello bonbon. I would not have surgery without first having an echo, a TEE, and a heart catheterization. Combined, these 3 tests will give you a very good picture of your valve function. Also, the heart cath will give the Drs. a good look at your coronary arteries, and if you have some blockage a by-pass can be performed at the same time. To me the hardest decision was what type of valve I wanted. There is a lot of information out there, but try to be sure you are reading most recent literature, since the technology changes so quickly. I am only 8 days post-op, so I cannot tell you the whole healing process, but so far this experience was not nearly as bad has I had feared. There are some awesome people in here who helped me stay calm and confident counting down the days to surgery. The anxiety of waiting was definitely harder on me than the actual procedure. Best of luck to you; you'll be on the road to recovery before you know it.

 

[tobagotwo]

If you wait long enough, you will definitely feel bad. If you wait too long, you won't feel anything at all.

You will find that you have more energy after surgery. Many things that you do not now recognize as symptoms may be conspicuous by their absence after the valve issue is fixed.

Many people don't undergo a TEE, as an echo and a catheterization (angiogram) will give excellent coroborative views of the heart. If it helps you to feel vested in the surgery, get the TEE for your personal satisfaction.

The morphine button would be from a patient-controlled pain relief program. When you feel pain, you press the button, and morphine (or Fentanyl, which I prefer to morphine) is delivered to your IV. The machine will only allow a certain amount of drug in a given time period, so you can't overdose yourself.

My own scar is about 10". But my surgeon has huge hands...

Best wishes,

 

[bonbon]

Just like reading a book.

Just like reading a book.

Hi Bob,
I appreciated information you shared with me, it was almost like looking at myself in the mirror when you spoke of working out at the gym, walking your dog and in general doing what everyone else was without any thought of how things were about to change.
I had been working with a trainer enjoying the feeling that a good workout will produce. I actually left the gym on a natural high after a good hour to hour and a half workout. Never felt tired just really great. I even enjoyed swimming in the pool for 3-4 hours, it was just a great way to relax and get time for yourself to think and get a better prospective on the day. Although now that I think back on it going the length of the pool was a bit more difficult than I thought it should be, but I reasoned that as just being out of practice.
At this point like yourself I have had follow-up echo's and last report from my doctor gave no indication that anything had changed. I never felt I was told much from him other than what the problem was. I see now that the surgeon is the one with the details of when, and type of valve best suited for you.
I will be seeing the surgeon Thursday and see what time frame he puts me in. The cardiac doctor has scheduled me for a surgery date next month since I agreed with him the time must be getting close. I don't even know why I did that without having a consultation from the surgeon.
I felt as if I were living in a sea of insanity until this site became available to me. The information here is so powerful from people who have lived this nightmare. Thank God all of you are willing to share. I hope to hear from you again and I will keep you in my thoughts and prayers.
Stay well.
Bon

Bon,

I, too, have aortic stenosis, and have had echos at 6 months intervals and been followed closely for years. Now, I, too, face surgery. It IS hard to accept that this needs to be done when you aren't having alarming symptoms. I was doing regular gym workouts and taking my dog on long walks, and have no heart symptoms. (Was battling spinal stenosis, overcoming it with physical therapy -- but that's another issue.)

Anyway, in addition to getting second opinions from cardiologists, I have read everything I can get my hands on. This quote from the famous heart surgeon Michael DeBakey in his book, "The New Living Heart (Adams Media, 1997)," may help:

"... Surgical treatment should not be delayed until severe symptoms develop unless there are significant contraindications to operation. Studies have shown that after onset of symptoms in aortic stenosis, survival expectancy at 1 year is 50 percent, and at 3 years it is 20 percent. It is generally recommended that operation be performed in asymptomatic patients when a mean aortic valve gradient is 50 mm Hg or when the aortic valve area becomes 0.8 cm or less."

I won't cite the stats unless you want me too, but Dr. DeBakey goes on to say that results after AVR (done BEFORE severe symptoms) are generally "excellent." He adds: "Long-term results are good, with most patients resuming relatively normal lives."

Nothing is better than the wisdom imparted by the wonderful folks on here who have lived all this, but I thought I would add a little from the medical literature in case it's helpful.

All best of wishes to you.

Bob

 

[epstns]

Hi Bon,

A belated welcome to The Waiting Room -- the virtual waiting room where many of us await our turn in the OR. I'm another AS patient, been monitored for a couple of years and was recently told to expect surgery "2 to 4 years out." I'm not sure if I'd bet on any time frame, but I am now struggling with the same paradigm shift -- from "sometime" to "a couple of years, with the unspoken knowledge that it could be sooner." It isn't easy, but the wealth of knowledge and compassion here makes it much more bearable.

Welcome, and please do keep us posted on progress.

 

[BionicBob]

Resuming the Active Life

Resuming the Active Life

Hi Bon,

Thanks for your informative post. It is definitely weird to feel physically fit, yet be informed you may need heart surgery. I would consider all the medical evaluations, get copies of the reports, and read everything you can, including posts on this great website.

In my case, I have begun noticing minor symptoms in recent weeks. I used to be able to bound up the stairs from the basement, no problem, but now I find that I am somewhat out of breath. I think this is more than just a sudden onset of old age. I also find that I am more comfortable sleeping with my head propped up on two or three pillows, which I've been told is sometimes a symptom.

Anyway, the good news for both of us is that surgery doesn't have to mean the end of an active lifestyle. In fact, getting appropriate exercise will be more important than ever. If you haven't done so already, check out the posts under the forum on active lifestyles. And by all means, keep us posted on what's happening with you.

Cheers,

Bob