Introduction and a few questions

[MarkG]

I just came upon this site last night and already feel better about my impending surgery. I have AVS and CAD as a result of radiation treatment I had at twelve, 33 years ago. I feel good now, but last week my Cardiologist told me I moved from a mild to moderate/severe AVS and will have to face valve replacement surgery in the next few years. Needless to say I was devastated. I enjoy riding my bikes, mountain and road. He told me I have to stop the mountain biking. That did not sit well with me, because I don't feel any symptoms, or at least I didn't think I did. After a stress test a few days later, I saw what my heart was really doing. My BP dropped like a stone as my heart rate increased along with changes in the rhythm. He told me I have to keep my HR below 130. Do you know how hard that is for a type A like me. After reading several post, I know several of you feel the same pain I do. Well I guess I will have to wait. That is my story and I am sticking to it.

Now for a few questions.

When will I know I need the surgery? I know from now until that time, today is the best I will feel. Tomorrow will be worse, but only a little bit. I would almost rather get it over with while I am healthy.

I want to stay active after surgery and my original thought is if I get a mechanical valve I will not be able to get back into riding or running. After hearing from you folks, it seems I can get back into the game. However, I am a bit concerned about taking blood thinners. I feel if I fall, I will bleed to death on the side of the road. What has been the experience of some of the roadies or mountain bikers who have taken a spill?

Bovine or Mechanical? I already had OHS 4 years ago for CAD, so I am not a good candidate for a tissue valve. I figure I will have to have a mechanical valve. Does anyone know of a good location to read about the procedure and where I can get information about surgeons in my area? I know this site is full of information, but does anyone have experience with surgeons in Ky

I am sure I will have plenty of questions later, but those are the one that I am thinking about right now. For what it is worth, its sunny and 90 degrees out. Good day to ride.

Thanks,

Mark

 

[Ross]

Hello Mark and welcome.

Mechanical and Anticoagulation---This is such an overblown and old wives tales ridden subject that it's not funny. If you mountain bike, I would assume you wear a helmet, am I not right? Coumadin and lifestyle is simply a matter of common sense. You may not want to sword fight or things of that nature, but there is no reason that you cannot continue to enjoy most everything else in life. Contact sports probably isn't a good idea, but most everything else is game. We have mountain bikers on Coumadin here, just go to active lifestyles and you'll see what people are doing. Your having this surgery to have a life, why not live it?

Please see the sticky thread in the anticoag forum and pay a visit to www.warfarinfo.com and learn all you can about Coumadin. Al's site will dispell about 90% or so of the BS that you've probably heard already.

What kind of symptoms are you having now? Breathlessness, tiredness, etc?

 

[geebee]

Welcome Mark,
You have found your way to a place that will help get you through your surgery and beyond. I am sure you will find the answers and support you seek.
I think most of us here feel, that if you are going to need surgery, the best time is before you get too symptomatic as that means you are in the best of health to recuperate easier and faster. I would strive to have the surgery as soon as you can mentally handle it and take the time off. I know that is not easy to do for a Type A person so you will have to discipline yourself to manage it.
As far as good facilities go - you are so very close to the Cleveland Clinic that I think it would be smart to start there.

 

[Karlynn]

Welcome Mark! A few of us have put together a thread with info on Coumadin that will get you started in some of your questions. You will also want to check out our Active Lifestyles forum and see just how many very physically active members we have, many with mechanical valves.

http://valvereplacement.com/forums/showthread.php?t=17116


The doctor is saying you are 2 years away from surgery, but he is limiting you from some physical activity? I guess my question to the doctor would be "Why wait when the condition of my valve and heart is already diminishing my life?"

As far as symptoms go, you may or may not get more symptoms as your valve deteriorates. Some people do and some don't. I had a ton of symptoms and was begging for surgery. Others go in for a physical and find they need surgery right away.

 

[MarkG]

Ross, thanks for the note. I checked out the link. Thanks.

Currently I do not have any symptoms, but I did get diagnostic symptoms during the stress test. I do remember a few weeks ago when I reached the top of the a hill, I felt like I could not get enough air. I guess that is a sign. I also remember back in 1998 a month before I had my first stent, I sure am having a lot of acid reflux. But if you asked me before I had angina, I would have said I did not have any symptoms. Over the years with my CAD, I realized most symptoms are subtle and if you don't listen to your body, you will miss them.

Mark

 

[MarkG]

Geebee, thanks for the note. When I had by x3 by-pass, I was going crazy and had to get back to work as soon as possible, 4 weeks to be exact. Yes I am really type A. That was a mistake. It took me at least 3 months before I could concentrate and do my job. I felt depressed because I could not remember how to do the simplest task. I have already decided that I would the full time off so I will be ready to come back to work. But that will be easier said than done.

Mark

 

[barbwil]

An "A"

An "A"

Mark, Welcome! I am NOT a type A but there is another fellow who readily admits to being one. He goes by ozmercy; his name is Randy and he would sympathize with your "affliction"

Click on the member list above and look in the "o"s for his name; then click on his name and read some of his posts. If I am not mistaken he had surgery about a month ago.

 

[Ross]

The heart is an amazing piece of machinery. You can be deteriorating and not even realize how much until after you've had surgery. Our bodies do a remarkable thing of compensating for shorts here and there. If you start feeling breathless, start holding water, tight chested, tired more then usual, then it's most likely time to be serious about surgery. The key is to get it done before the heart enlarges. Surgeons want you then, but it seems most Cardiologists wait for specific handwriting on the wall before action.

 

[brd]

Post radiation also

Post radiation also

Hi Mark, So glad to see you are finding answers here already! I have aortic stenosis post radiation also and I am still in the "waiting room." I have been told several times now that the recommendation for post radiation AVR is definitely mechanicial versus tissue. THe reason I have been given is that re-operation is likely to be very difficult. There is a physician at Cleveland Clinic who specializes in valve replacements post radiation. His name is Bruce Lytle and one of our members "Perkicar," also a post radiation candidiate, had him do her surgery. You might want to PM her and certainly PM me if you want to know more about what I have been told. (I am also a type A and an exercise fanatic. I just had an echo and stress test last week and was again told that it wasn't time for surgery but to walk, not run, and play
doubles tennis only.)

Let me know if I can help in any way. You will find so much help here.

Barbara

 

[ALCapshaw2]

Welcome to our world Mark !

There are at least 10 members who have had to have Valve Replacement Surgery as a result of Radiation Therapy (most for Hodgkins Disease), including myself, with CAD, angioplasties, bypass, AVR due to Aortic Stenosis, and Progressive Mitral Stenosis). Do a SEARCH on VR.com for keywords "Hodgkins" or "Radiation" and you will find links to several of our stories / experiences.

See the Personal Stories Section (on the Home Page) and look for Johnny Stephens Story under Two Valves or some such heading.

Johnny had BOTH his Mitral and Aortic Valves replaced at the same time. I sometimes wonder why my surgeon did not do the same (probably because my Mitral Valve Stenosis was not yet considered Severe ... at the time...)

There is a Radiation Damage 'specialist' at the Cleveland Clinic (#1 rated heart hospital) by the name of Dr. Lytle. A couple of our members have had him do their surgeries and speak highly of him.

Don't even consider having surgery by anyone who has NEVER seen a radiation damaged heart !!! And don't go to a 'local hospital' for this repeat surgery.

Dr. McGiffin at the University of Alabama at Birmingham seems to be very knowledgable about radiation damage and is a highly respected surgeon, not to mention one of the NICEST persons you could ever meet. I have already asked him if he would do my next surgery when the time comes.

There may be someone appropriate in Nashville TN, but I'm not familiar with their surgeons.

Regarding activities, we have several high level athletes and a few Mountain Bikers among our members. See the Active Lifestyles Forum for their tales.

FWIW, my surgeon agreed to give me a Bovine Pericardial Valve but after he saw all the Radiation induced scar tissue, he went with a St. Jude Mechanical because of the durability. If I had it to do over, I'd be very tempted to ask for the On-X (third generation) Mechanical Valve with improved hemodynamics and LOWER propensity for Clot Formation. Check out the On-X Website (do a search for On-X and you will find links to LOTS of discussion of this valve). Other third generation valves include ATS, Sorin (Italy), St. Jude Regent.

SO, did your Oncologist tell you about possible late term Coronary Artery Disease or Valve Disease? (I think I already know the answer to that one )

'AL Capshaw'

 

[davidfortune]

Mark,
Welcome . Sorry you are having to go thru this but glad you found us. At least you won't feel alone and you can get some good info here.

Regarding 3rd Gen valves. On-X is currently the only mech that I know of made from pure carbon (all others are silicone alloyed pyrolytic carbon) which has increased tensile strength and reduced brittleness. This allows for enhanced design shape that improves hemodynamics. Will this equate to long term LV improvements? Will the "improved" design characteristics lead to reduced anti-coagulation requirements? Both of those are the hope but really time will tell. If I choose mech, I will fight for this valve (my surgeon it not convinced that it is the silver bullet of mech valves but stated cautious optimism).

Accurately predicting future surgery dates with AI is difficult. AI can remain stable for long periods of time then (reasonably) suddenly change drastically. Watching for LV dialation is key surgery indicator in the "asymptomatic" patient. All 3 cards I have talked to agree with moderate cardio exercise (120 - 140), and no heavy weights.

If you haven't had an echo recently you need to have one. This will provide the opportunity to measure LV size in particular (along with other heart dimensions).

Generally a fall on coumadin won't cause you to bleed to death unless you experience an serious internal abdominal injury or internal head injury (those are the major risks). Surgeons seem to be notoriously under-educated regarding coumadin. They generally don't like it. There are risks no doubt but you balance that against a statistically a much longer valve lifespan - although at 40 it is reasonably likely that even a mech valve will need replacement if you live long enough. If you only live to 60 - the valve will likely outlast you. If you live to 75 - not nearly so likely for the valve to outlast you. If you beat the odds and live to 85 - you will likely outlast the valve.

I would second the suggestions to deal with a surgeon who has radiation experience. That changes so much. I have seen my dad deal with many unique situations due to the radiation.

Here's a thought (courtesy of my future surgeon last Friday).... Go on coumadin now - before the surgery. See how easily you regulate and deal with testing and any other issues. If that scares you (or me) then you (or I) shouldn't pick a mech valve since coumadin will then be required for the rest of your (or my) life. it was an interesting proposal. I'm still thinking about that one. I didn't think the idea of coumadin really bothered me (thanks to the education from all the ACT members here) but I found myself un-excited regarding the prospect of starting coumadin today vs. December if I choose a mech valve. Hmmm..... My own emotional reaction to the thought of starting coumadin today now weighs into my decision regarding valve selection. Interesting....

Good Luck.

 

[Ozmercy]

From a type A

From a type A

Mark,
Welcome to VR.com, I am so glad you found this site. I have a different situation from you in the sense of what is wrong with our hearts, but as a fellow type A I have some advice for you re. Doctors and re. dealing with the diagnosis.

First if i remember right you live in Ky, i highly suggest you look into seeing a doctor associated with one of the major heart clinics and I think that Cleveland Clinic is the closest for you. A really good cardiologist can help guide you through the decisions about valves, meds and surgery procedures. I love my cardiologist and trust him with my life. I think the sooner you see a cardiologist that specializes in your type of problem the better. Most cardiologist are oriented toward heart disease. Having surgery while you don't have lots of symptoms is better for you and you will recover faster. I am 3 weeks out and am driving and getting out and about. I have to watch my pace, but I am really recovering fast. I can't wait to get out on my kayak and hope that it is coming in the next month or two.

In regards to dealing with the diagnosis, have you been put on atenolol or any other beta blocker to slow down the BP. This is something a good cardiologist will help you with. One of the side effects of that is that you will feel a little lethargic which helps us type A's slow down a little. For me I had an aneurysm that was quite large and slowing down was literally a life or death decision. I decided to go off work while waiting for surgery, but this cost me quite a bit, both financially and personally. In retrospect though it was the right decision. I began at that time to look at my life and find unfinished projects around the home etc. that were things that did not require enormous effort (I had a lifting and work limitation put on me till after surgery) and I just began to try to find other things that I could pour my bounding energy into. This is important look to put your energy into other things and take this opportunity to do things you wouldn't normally do. Post op I am walking like crazy and spending time with friends and just doing things that have been put on the shelf in my life. I am spending a lot more time at the computer etc.

Lastly in regard to valves and Coumadin etc. I went with a tissue valve because I am firefighter and my chances of going back to work on Cuomadin were slim. I may have to have another surgery in my 60' or 70's but it was the right decision for me for now. There are a lot of people on this site that are on Cuomadin and are very active. See a specialist cardiologist get his input, read and research and talk to people here on this site and then make these decisions. I talked my surgeon out of a Ross the week of my surgery. Until you are on the table you have time to research and think this stuff over.

One more thing. Don't over think it, let it be. All the lost sleep thinking it over again and again, doesn't do us type A's any good. Do the stuff I just mentioned but all the worry in the world isn't going to change your situation. Be proactive and do your part, then pray and leave the rest in God's hands.

Randy

 

[MarkG]

I knew there were others out there that had a very similar health background that I had. Al and Barbara how many years are you out from your cancer. I have made it 33 years and still going strong, well except for the heart. But as Oz knows you wouldn't know it if you looked at me, the type A gene sure makes it hard to slow down. I know I have to and have already started to listen to the relaxation CD's my wife got me after my bypass. Had to blow the dust off those things.

It was wonderful to hear from you folks and know there are others with the same fears, misconceptions, afflictions, and health quirks that I have.

I will keep you informed with my progress. I will send an e-mail to Dr Lytle. I have seen his name pop up in a few other discussions.

One last thing and then I will stop, my favorite line from Karlynn?s Coumadin link "if your chute doesn?t open, being on Coumadin or not isn?t going to make much of a difference". My wife and I are still laughing at that.

Mark

 

[Ross]

Mark don't stop! Just keep posting away as thoughts come to your mind.

 

[ALCapshaw2]

Mark,

I just received a private mail note from yet another Radiation Damaged patient who is facing Aortic and Mitral Valve replacement. This seems to be a 'not well publicized' long term effect of Radiation Therapy.

When I informed my treatment center, they weren't very interested because I was over 21 at the time of treatment and "No one follows adult patients long term".

BUT, most treatment centers seem to follow pediatric patients so I am asking a favor of you:

Please inform YOUR Radiation Treatment Center and Oncologist of the long term / late term Damage to your Heart and Valves. We need to get the word out.

In my case, the radiation to my chest was "just in case we missed something on the X-Ray". The actual node was on my NECK! If I had it to do over, I think I would DECLINE the "Just In Case Radiation" to my Chest!

'AL Capshaw'

 

[ALCapshaw2]

<SNIP>

I also remember back in 1998 a month before I had my first stent, I sure am having a lot of acid reflux.

Mark

Have you seen a GastroEnterologist?

I too have GERD (GastroEsophageal Reflux Disease) and take Prilosec to control it. Nexium is even better but has about 4 times the 'co-pay' so I stick with Prilosec in the morning. Pepcid is supposed to do something that is helpful at night and has low /no side effects.

I suspect the radiation may have damaged the Lower Esophageal Sphincter.

'AL Capshaw'

 

[MarkG]

I think you hit the nail on the head with the damaged Lower Esophageal Sphincter. I believe the radiation affected me that way as well. I have been taking Rolaids ever since I was 13. When Tagement came out I was taking those. Back in 1998 when I had the acid reflux, I was taking one of those magic pills and still had the reflux. I really think it was my heart trying to tell me something but I just did not listen to it. I have had the GI check up and I am good there. I also take Prilosec for the same reasons.

BTW, a few years ago I saw my pediatric oncologist at some function. I went up to him and introduced myself. After a hug and a genuine ?this is why I got in to this specialty? he asked me how I was and I explained that I am experiencing heart trouble. He said they are seeing that in patients 20 years out that had my type of radiation. I think they just did not have the data back then to steer patients away from this type treatment. But you know I am a bit angry about how it affected but I would not give up the treatments I had 33 years ago. If I had not had them I would not be meeting this great group of folks. So I am ok with it.

Keep the faith and we radiation brothers and sisters will get through it.