Getting up to Speed on VRs & Options

[John M C]

I was told two weeks ago that I have a aortic stenosis. I am 52. I have been learning about the problem and this site has been extremely helpful. It was caught early so I do have time to make the best decisions. I have 2 questions today and I am sure that the number of questions will multipy considerably as I get smarter on this subject.
The first: If asked today I would probably choose a tissue valve for the replacement but I do not want to undergo surgury if there were other options and I am looking for any information on this subject. I almost avoid the term "alternative medicines" because of the reactions that question has drawn when I use it.
And the second: I live in the Philadelphia /West Chester PA Area do you have any experience with hospitals there? I have a copy of the US News List but I was also looking for first hand information.

Thanks in advance for any information
Jack

 

[starkone]

John,
I also was diagnosed two weeks ago with AS...the echo showed severe...a cath the following week says not as bad as first thought. I am a 53 year old female, and the valve is bicuspid from birth.
Anyway, my first thought was alternatives also. I did find some info on the life extension Foundation site. It basically gives some vitamins that can be taken. I would check it out. I think the implication was that this could be effective for the prevention of stenosis....but started much earlier. REad it and see what you think. If I was better at the computer I would link you to it.

Have your doctors given you any time frame. I can't seem to get that out of anyone. As I am very active, at first they were worried about keeping me down. Now they, (cardiologist) says I can exercise! I would be curious to know what they are telling you.

I do not relish the thought of this surgery either. It may be inevitable but.............
I also would be looking at the tissue valves....I think the cadaver valves could end up better that the pig, but that is very early searching. As for hospitals, look for one that does lots of these procedures!
My best to you, keep me informed and I will do the same.
Karen

 

[Christina]

Welcome John!

Welcome John!

Hi John,

Welcome to our growing family of valvies or similar surgeries.
I am female about your age and found out July 13, 2000 through an Echocardiogram that I had Congenital Aortic Stenosis. Mine was severe and a Catherization was scheduled for the following week. I met the surgeon that day and made an appointment to see him the 25th. The surgeon had to be out of town the following week so he asked me to wait as he didn't want to perform the surgery and than leave me to someone else. Surgery was done the 7th of August. Little did I know that 11 days after the first surgery I had to have the surgery redone. (Read my story for complete details)
My surgeon chose the mechanical for me because he said: "You don't want to do this too often and a tissue valve will last you between 3-15 years if you are lucky". I agreed! He had been doing these surgeries for 30 some years so he had seen it all. I was already terribly upset and stressed about this, and was unable to think of anything else. Thank God for the people on the forum who helped me through this. I also had all the support of my family but they had not been through this so were unable to give support in that way.
The surgery was not as bad as I thought it would be. Even the second time around I did fine. You just have to put your trust in a higher power and in the medical team.
I am on Coumadin for the rest of my life because of the mechanical valve, but it is not as bad as people make it out to be. The only side effect I found in the beginning was some of my hair falling out, but that stabilized after a few months. I still have plenty left. LOL!!! Once Coumadin is stable and you have found a doctor who is able to regulate it, there should not be a problem.
I have a home testing machine and do all the testing myself. I haven't gone to the lab in about a year. (see Protime ad on this page)
I live in Arizona so am unable to help you in choosing a hospital, but I am sure that someone will come around today or tomorrow and give you all the info you need. People are very friendly here, so ask away and I assure you won't be disappointed. Weekends are a bit slow so please be patient.

Hope you come often!

Christina
Congenital Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical

 

[John M C]

My condition is also severe but they are saying that I can continue my exercising [walking, hiking, yard work, abs] but watch for the symtoms and report ASAP.
I have been told that I might be able to wait a year. I do get modest tightness in the chest and occasional pain and rare dizziness.
As for the human valve vs others, I was told that there is more stringent "site" preparation for a human valve. The best data that I got was from the surgeon who said that his teacher/mentor at 58yo selected a "stintless" [SP] pig valve. We'll see if that's what I finally decide.
I have the cath scheduled next week. So thanks for your info there.
If I missed anything just followup
Jack

 

[Jack]

John,

Don't wait too long; you don?t want a permanent damage to your heart muscle.

The heart is a marvelous organ; it will adjust itself to any malfunctions and mask the symptoms from you, have your cardiologist monitor you regularly and you may want to do the VR before you start fainting or have regular dizziness.

Jack.

 

[Nancy]

H John-

Welcome to this wonderful site. We're all part of the wide world of heart valves and beyond. Either from firsthand experience or having gone through it with a loved one. We all "get it" when it comes to this surgery.

There is an absolute ton of info. here. Do your best to wade through it and it will help you understand what is happenig to your body. Plus knowledge is power and will help you be more comfortable with surgery.

In my case, it's my husband who has had this surgery. He's had 3 valve surgeries. He has an aortic mechanical, a mitral mechanical and a repair on the mitral, plus he has a pacemaker. He's also had a lot of other major surgeries, some of which he thought were worse than open heart. Being apprehensive about this surgery is normal, it can be scary to face. But the surgeons who do this are exceedingly well trained, are very careful, and will review your case thoroughly. It's routine for them, they do it all the time. Your pain will be well controlled, the care you receive in the hospital will be exceptional, and you'll be up and walking before you even think it's possible. Some patients have gone home in three days. Healing takes a little time, but after that period, you will be feeling much better than you have before.

There is a thread by Peter Easton, a member, called "Making the choice: RP, homograft, mechanical, tissue". It's an exhaustive study of different types of valves. It's a very good read for someone in your position. Just do a search on that name.

I agree with Jack. You don't want to wait too long before committing to surgery. He's so right. Your heart can compensate for inadequacies for a time and you'll feel OK, and even meds can help, but after a while, your heart will become symptomatic and you can become very sick. I've seen it with my husband. Permanent damage can also result.

All of us wish, of course that there were some magic, and obscure potion that hasn't been widely known about which can take away heart valve problems. But it just doesn't exist. If you need surgery, you need it. It's just a matter of time as to when. Your cardiologist is your new best friend now. He'll no doubt have you taking several tests which can pinpoint the nature of your problem, and from the results, he can determine approximately when you will need surgery.

I wish you all the best, and hope to see you often on the forum asking qestions, and filling us in on what you've found out.

Take care.

 

[Ron K]

Welcome aboard

Welcome aboard

Hello John,

Let me add my welcome to you. You're in a good place to learn a lot from others who have already been where you are heading.

I wanted to respond to the second part of your question, the part about hospitals in your area. I had an aortic valve replacement 3 months ago at the University of Pennsylvania Hospital. I recommend it highly. Another fella, Getzfixed, was about a month ahead of me getting his AVR taken care of at U. Penn and he was extremely satisfied too.

I chose a bovine tissue valve, which is likely to last 15 to 20 years or more. I decided to take my chances as to where the state of the art in cardiatric care is at that time. Maybe there will be better valves and/or easier procedures to replace valves by that time.

I'm 59 years old, in pretty good shape, and feeling terrific. The surgery wasn't nearly as bad as I thought it would be. My recovery went very well and now my only restrictions are not to lift more than 50 pounds. I walk a lot, exercise regularly, bowl in a couple of leagues, and do just about anything I want.

I'll be glad to answer any questions you have for me, but my responses may be a little slow during the next two weeks. I'm traveling off and on to visit relatives in different parts of the country. I'll check in occassionally and try to post a little when I have access to a computer.

My one suggestion right now is to try to stay in good shape. When the time does come for you to have your AVR, the recovery will be much easier. Keep walking, hiking, etc.

Ron K

 

[McCln]

Jack

Jack

You just get as informed as you can get and good luck on the catherization. It can tell the doctors and you a lot when the dye is shot. It can tell if the arteries are clogged or not and how much is clogged. You hang in there.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Beverly]

Getting up to spped on valve replacements

Getting up to spped on valve replacements

Reply to John M C

Hi John,

My heart murmur was detected when at age 19 I switched doctors. I had had both Rheumatic Fever and Scarlet Fever as a child but the family practitioner told us my heart was not damaged so when this new doctor who was an internist told me I had a heart murmur and that it was not mild I was surprized. After examining me and sending me to University of Penn Hospital for evaluation I was told then that I would one day require valve replacement surgery. I was put on daily antibiotics, which was the practice then I guess and I was monitored regularly by the internist. Over the years I had problems related to activity with dizziness and chest pain that would go away with rest. I had three cardia caths. The first cath was done at Jefferson Hospital in Philadelphia the next at Cooper in Camden and the last cath was a Lourdes in Camden. I do not recommend Lourdes. It seems that the doctors just didn't feel my problem had reached the point where something needed to be done and then suddenly after one test conditions had changed and they were telling me I needed surgery. At that point I was the one who was having trouble figuring out when the status change took place. I didn't feel any worse than I had but now suddenly I was being told I could have sudden death. Though my cardiologist whom I had worked with as well as being his paitient kept encouraging me to get scheduled I needed time to think. I tried to find people my age (39) who had had to make this decision but I could only find a wonderful elderly man who came to my home to speak to me. He brought his video. It seems he was on TV as he was Dr. V. Paul Addonisio's first human valve patient I think done in this area. This gentleman could not speak highly enough about this surgeon and his nurse. With the help of his visit and hearing how well he was feeling since the surgery I made my decision to have a consultation with Dr. Addonisio. I had my surgery at Temple Hospital in Philadelphia and Dr. Addonisio was my surgeon in 1990. I have a St. Jude's Mechanical valve. I had originally opted for the human valve but I knew in advance that if the valve was not a perfect fit I wold be given the mechanical valve. I take coumandin daily and generally have a pro-time once a month. I am not certain if Dr. Addonisio is at Temple or Abbington Memorial now. I do not know if these two hospitals are affiliated or not but I guess you could make some phone inquiries. At any rate if I can answer any questions for you just ask! This is why I'm so happy to have found this site. There was so little information around when I had my surgery and no one my age to talk to about it.

 

[sylviayasgur]

hi jack! hi karen!
i'd first like to welcome you to this wonderful site. my husband is about 8+months post-op and i'm so grateful, still, to have everyone here as my primary support. (yes, we have a great support system in family, but none of them really "get it")..this is such a great site.
my husband, joey, age almost 50, had a ross procedure done 9/20/01. he was very opposed to coumadin and wanted a long lasting valve. he knew of his problem from when he was 12 y.o. eventually it was the stenosis that did him in , not the insufficiency. i'm so surprised that you are both just finding out about this now at this late date. i'm not that familiar with this except for joey's condition.
there are so many options though. peter easton's thread on "making the choice" is a good one. pleaswe come back and visit and we will all help and hold your hands....
wishing you all the best,
sylvia

 

[gary]

RE: Alternatives to traditional medicine and Surgery

RE: Alternatives to traditional medicine and Surgery

There is nothing you can now take to relieve stenosis. The scar tissue that has formed, the 'bicuspidity'of the valve (if you have it ) and the edema and calcification of the leaflets, is not reversible.

The severity of your leak is extremely important. If it's in the +1-2 range, sugery can be put off for quite a while, if there are no other involvements and your EF is over 50% and your LV is in good shape, within normal limits.

I was surprised to learn from my caridiologist and others that EVERYONE, even those with congestive heart failure, should do SOME C-V exercise every day. There are practically no heart problems that totally eliminate exercise. You'd have to be near bed-ridden to be told not exercise, and under a fairly high temperature (over 101.9) to be told to do nothing in the way of exercise.

"Stenosis" (rigidity) is much more worrisome than "Insufficiency" (floppiness). If the AV does not 'flex', does not open and close within reasonable tolerances, it could seize up entirely because it is calcifying due to the 'chatter' and subsequent turbulence thru outflow tract. Tthink of the opening and closing of the normal AV, Lub-dub, Lub-dub as the blood rythmically moves thru the valve orifice. Two very smooth practically frictionless precise movement.

And then think of blood flowing thru a 'stenosed' Aortic valve orifice. In stenosis the leaflets are not opening and closing properly; they are stiff, maybe reduced from 3 to 2 leaflets. The blood rushing thru on each beat (in both directions due to the leak) is causing inordinate wear and tear on the leaflets and the annulus, the ring to which they are attached to the interior aortic wall (actually an outgrowth from it) 'aging' the valve exponentially from the 'chattering' of the valve leaflets from turbulence. Instead of two smooth motions, the leaflets experience many many more on each beat.


This maybe one possible explanation about Beverly's cardiologist's sudden change of 'heart' below) and/or the load on the LV becomes problematic; you want to preserve the LV 'squeeze' function as much as possible.


4/00 AVR
C-E Bovine Pericardial valve
CCF; Cosgrove.