Questions-Leaking Aortic Valve

[RunMartin]

Hi
I am Martin, age 41. I have a leaking aortic valve. I have known about it since 1987. I am a keen runner and swimmer and I am still competing in Fell Races. I have just been for my annual check up (echocardiogram etc) and the consultant originally said "see you next year for your next appointment" (this was before the echocardiogram ). I got a letter a week later asking me to return to see the consultant (this comming Friday). Since I got the letter my head has been racing. I had managed to push any thoughts of heart problems to the back of my mind for the past 15 years. My head is telling me that I am due for the opperation very soon. I am very fit (I train every day and have competed in 64 races this year already). I feel physically fit at the moment and I do not feel like there is anything wrong but I am worried about not being able to run/swim etc. Does anyone know when the consultants decide when it is time to have a new valve fitted?

Thanks

Martin

 

[HFK]

Hi Martin, I had an AVR done in 2000 , And also had know about my valve problem for 15 years. The last 3years before surgey it seem to progress quite rapidly. I had echo's every 6months. Up until the day of surgery I felt good, no symptoms at all. They look at the numbers of your echo and the size of chambers etc. Ejection fractions, atrial and ventricular size, diameter of openings of valve, heart size ,ideally you want to get it fixed before damage occurs to heart, it puts you at higher chance of complications .So just because you look good and feel good doesn't mean you dont need surgery. Aortic valve typically gives less symptoms than mitral valve. My cardiac surgeon told me no intense exercise 4 months before surgery I was a competive racqetball playing , I said but I feel so good , his reply,which I'll never forget was" you will than you could fall over from sudden death and can't be brought back". I did exactly what he said. Most basketball players that you here falling over on the court are from aortic problems he said that were un diagnosied. Hope this helps hfk

 

[tommy]

The heart enlarges to compensate for the leakage. At a certain size, permanent damage can result. The strategy is to replace the valve before there is any damage to the heart.

Everyone's case is a bit different. Ask a lot of questions to be sure that you understand your situation and your options.

Take a deep breath and try to relax. If/when you need the operation your fitness will serve you well in recuperation.

Please keep us posted on your prognosis and progress.

 

[RunMartin]

Thanks for your replies.

My main worry at the moment is what will happen after I have a new valve. Will I still be able to run competetively (with a mechanical valve) and also the need to take antocoagulents for the rest of my life. I am sure that as the time approaches I will become more comfortable with this.

My other worry is the length of time I will need to take off work. I have only worked at my present company for one year which entitles me to only four weeks sick pay. This will increase to six weeks in six months time. Apart from the actual operation, is there any other times when I will not be able to work i.e. for other tests etc. My job requires me to sit in front of a computer for most of the day so I was hoping I would not need to take a long time off work.

I am glad I have found this forum. When I first found out about my condition in 1987 there was no one to turn to for support and to ask quesions (even though they may seem trivial).

Thanks again

Martin

 

[fyrfytr]

Hi Martin,
Welcome to this Great Forum. We have several people here who are runners. You might PM Mark Wagner, he is one of them. You can read some posts in Small Talk about him. They are Marathon Metal and Big Day for our VR. com buddy Mark Wagner.
As far as returning to work it all depends on what you do and how you are recovery. You don't want to push it to fast. I would hope that your employer would understand what you are going through. I hope everything turns out OK for you.
Take Care

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

 

[chilihead]

Martin,

Welcome to the "club". I'm about 4 weeks from surgery and still riding by bike and enjoying every minute of it. Have you considered a Ross procedure? Conk is my new idol for those with mechanical valves. I only hope our recovery periods are this fast.

Take care,

Jim in Dallas
Nov. 17th is the big day for me! (tentatively)

 

[JetService]

My situation which is very recent sounds exactly the same except I had no advance warning. I was in for a routine physical in August and my chest was cut open in October. The good news is that I have no damage to my heart. My aortic valve was severely leaking and I had no symptoms. Granted, I don't run (unless I'm being chased by bees), but I'm moderately active. Its my understanding however, you can still compete in sports as long as its not high-contact such as ice hockey (which I used to play and will have to give up). They tell me that's more a result of taking Coumadin than the valve replacement itself. Good luck! Hope all goes well.

Edit: Make sure you stick with this forum throughout your situation. These folks are the best and will give you more insight than anything else on the planet!!!

 

[RunMartin]

Thanks again for the replies,
I have just been for a short run and I feel really calm . I think this is due to this forum. I hope this feeling remains. I do not feel full of panic as to what the future holds. You guys seem to take it in your stride. It is a great inspiration.

Cheers

Martin

 

[Buzz Lanning]

Timing for Valve Replacement Surgery

Timing for Valve Replacement Surgery

Martin,

I've enclosed a website for the "AHA Guidelines for Management of Valvular Heart Disease". This article is somewhat technical in nature, but provides the current recommendations on when to perform AVR (you can download a PDF version). In summary, for chronic aortic regurgitation, surgey is normally recommended, even without symptoms, for the following conditions. Left Ventricle End Diastolic Dimension greater than 7.0 to 7.5 cm, Left Ventricle End Systolic Dimension greater than 5.0 to 5.5 cm, and/or an ejection fraction of less than 50%. Also, surgery can be accelerated if the aorta has enlarged to 5.0 to 5.5 cm (due to the aortic regurgitation). Do you know your numbers?

http://www.acc.org/clinical/guidelines/valvular/dirindex.htm

Anyway, I'm also a runner and swimmer waiting for AVR. I've known about my condition for 3 years (I'm 46). In summary, I've been diagnosed with aortic insufficiency, moderate to moderately severe regurgitation with a dialated left ventricle (6.8 - 6.9 cm). Ejection fraction was still excellent one year ago based on a gated blood pool test; 82% (this test is much more accurate than a echocardiogram EJ). I still feel fine, running 5 miles at an 8 min pace and swimming 2,500 yards in around 40 minutes.

Hope this helps!
Buzz

 

[Nancy]

Hi Martin-

I just wanted to say welcome, and you've found a wonderful site. There are many athletic folks here and you'll gets lots of good advice.

These guys and girls are very, very tenacious about their fitness, and also being competitive with their sport of choice.

Mark Wagner is one of the big time runners. You could look for his name in the members list at the top of this page, and "search" for all his posts.

This site if filled with inspiring stories.

Best wishes.

 

[sylviayasgur]

hi martin!
welcome to this forum; it is a truly wonderful place with caring and supportive people, all of whom understand what you are going through.

many of the members are athletes, some runners, some bikers. (do look up mark wagner_ you will be amazed at what he has done so far)

as far as the WHEN of it all... everyone is different. some folks had their surgery without even feeling symptomatic, but their numbers indicated it was time.
others, like my husband, joey, became very symptomatic in the end and the numbers reflected the way he/they felt.
either way, they like to do the surgery before to much (irreversible) damage is done to the heart.

please let us know how everything goes at the doctor this friday.
wishing you all the best, sylvia

 

[liamty]

another test

another test

Hi and welcome, We too are new to this site,and loving it!
My husband had an avr in 1981 at age 21. He has known ever since that it is still leaking, and will need repairing. At his check last year we had a call from our local Dr. He had received the echo results and was alarmed that they had shown a 'moderate to severe leak' which required immediate attention. As this had come on so quickly, and lacked symptoms, he recommended a second independant echo......which showed a 'minor to moderate' leak. The specialist wasn't too surprised or concerned! They apparantly have differing results depending on who does the test!!! This is obviously totally unacceptable but also shows that a second opinion is not unrealistic!
As for afterwards, Steve sometimes requires more time to recover from injuries, due to bleeding, clotting etc and needs to monitor more closely his inr at these times, but awareness is the key to good health. And always choose doctors who are familiar with warfarin.... when going in for a simple vasectomy my husband ended up in hospital for 2 weeks and off work for 1 month due to an inexperienced Dr!!!!! He still can't laugh about it yet!!!!! Good luck. Donna

 

[bvdr]

Hi Martin and another welcome to this site. Donna's comment on differing results on echocardiagram mirror my feeling. I have been everywhere from moderate to trace on aortic insufficiency. My mitral valve results were more consistent and I've had that replaced with a mechanical. I think the compensating changes that have happened in the heart may be more reliable.

If you end up needing valve replacement you can still have a wonderful life regardless of which valve you choose.

 

[Mark Wagner]

Hi Martin,
All the above advice is very good. I very much agree with Tom Hosack's post. The key is not waiting too long. I find, and have read on the different posts, where cardiologists wait too long before surgery, and then you end up with permenent enlargement and or more damage. I am very fortunate to have a very reputable surgeon, whom could see I was certainly not going to get any better on my own, and my heart was only going to continue to enlarge. If I would have been waiting for the cardiologist I had been seeing at the time, whom knows the outcome? What I did was get a second opinion. I was waking up choking at night, I felt unreasonable fatigue, and my heart would just start fluttering for no apparent reason. The second cardiologist sent me to a surgeon for his opinion. It was the best move I ever made, and not only saved my life, but gave me quality life.

God bless you and welcome to the site.

Mark

 

[RunMartin]

Hi,
Just two days before I find out a bit more about my condition. Three years ago I moved to another part of the country and therefore I had to change hospitals. I had an echo, ecg etc and the consultant asked me whether any of the previous consultants had told me that my heart was a bit on the large side (the consultant did not have my previous records at that time). The next year (last year) the consultant said the dimensions they were measuring i.e. size of the heart, had reduced slightly. I presume this year the dimensions have increased quite a lot. Note over the last 16 years I have never seen the same consultant twice. The consultants have never told me the actual measurements so I do not know how close they are to the threshold. The last thing I mentioned to the consultant two weeks ago (before the echo) was my plans for a long event next year (June 2004). This was the Bob Graham Round which is 74 miles, 42 peaks and about 29000 feet of ascent in the Lake District (England) - all to be done in 24 hours (I did not actually tell him about the amount of climbing or the terrain!). I had already started to train for this and I have already done four 4/5 hour long steady training runs in the last month, but I think it would be better stop after recent events. Originally I had planned to do this in 1987/88 but I found out about my heart murmur in 1987 and was told not to run for a while. Maybe I will be OK to do this with a new valve? The event is not about speed and more about the mental approach to it Most people I have talked who have done the Bob Graham say that they walked the uphills and ran the flat and downhill. Anyway I will just have to wait and see, Health comes first now!!!

Note my usual training/racing is no where near the above distance. I normally race over distances from 3 to 20 miles (mainly fell races). My average weekly training this year so far is 31 miles/week running and 5 miles/week swimming and I have not had a day off training for nearly five years (a little obsessive I think!!). May be it is time to take it easier.

At the moment I am waking up feeling anxious, but as the day goes on things get better, especially when I look at this forum. I think that keeping my head burried in the sand is not the approach for this. It is quite scarry at times. I cannot beleive that I had ignored the fact that I would most probably need a valve replacement at some time in the future. I think a lot of my worry lies in life after the new valve, especially in the need to take anitcoagolents and all the blood testing that goes with it. A Scottish politician (Donald Dewar) died three years ago a few months after receiving a new valve. He tripped over on some steps and died soon after. At the time said I was glad I was a long way off having the opperation!

http://news.bbc.co.uk/1/hi/scotland/967544.stm

I did not want to mention this at first but I have realised it is one of my main worries. I feel a lot better about it after hearing that most people are OK. I just hope this is a rare occurence.

It is 8:30 am and I am at work and I am feeling much better than I did fifteen minutes ago before writing this.

All the best and thanks
Martin

 

[HFK]

Hi
As far as going back to , if your course is uneventful as most are I think after 4wks. you could go back to work at a desk job. If your job was real physical that would be a different story. My fiend had OHS by pass he was the model pt. he did half days at 4 wks at desk job. Let your body do your guiding. Who is going to be your surgeon? My dear friend lives in UK ,do you have to be on list? hfk

 

[RunMartin]

Hi,
I have just got back from seeing the doctor. He said the latest measurment for the left ventricle was 6.8 cm compared with 5.6 cm last year (this is the first time numbers have been quoted). He was ready to refer me to the surgeon for a valve replacement as at that rate the heart would be too big in one years time. I remembered some of the comments about the inaccuracies in measurements in this forum and also that the doctor I saw last year said my heart measurements had got smaller. He asked me to get another echo done by a different person. It seemed like half the hospital was in the room watching. The reading from this echo was 6.4cm. The doctor said he needed to get an authorty on echos to have a look at the results to see if I need surgery yet. I still feel a little shell shocked from this morning. One minute I am just about to be referred to the surgeon for an operation and the next minute I am not. One good thing was that the doctor said I could keep on running!

Martin

 

[Nancy]

Hi Martin-

Well, you're in the terrible "waiting" mode when the Sword of Damocles is waving around over you head.

Sometimes when you're in this kind of situation, it's a relief to get some definite final direction, even if it means surgery. It's uncomfortable to have this kind of stress for a long time.

I'm hoping that you hear soon. We're all here for you and almost all have been in your shoes, sometimes more than once.

God bless.

 

[Granbonny]

Hi Martin

Hi Martin

I saw in one of your posts that you said..HEALTH COMES FIRST. You are young enough that you may be able to get a tissue valve (15-20 years durable) and not have to take coumadin. If you have read a lot of Valvereplacement threads..you will see how many of us on coumadin do not see it as a big deal. I have been on it for 17 months with NO problems. Just take a pill a day. I read your post about Donald Dewar who fell and died because he hit his head. First person that I have heard of that died on coumadin...... Our diet guru..Robert Atkins slipped and hit his head on an icy sidewalk and died and he wasn't on coumadin....What I'm trying to say..is whether or not you are on coumadin..accidents happen in strange ways. I tripped and fell on steps a few weeks back. NO bruising..just some sore ribs... I am thinking falling backwards..you would hit your head..but forward. you usually throw out your arms. Our other runners on line could probably tell you about how long out from your race in June..that you would need your surgery. I would think at least 6 months...takes most valvers about 3 months to feel up to par again for any light exercise...like running or swimming. You will be very foggy-headed for about 6 weeks after surgery..Takes that long to get the nasty drugs from surgery out of your body. Take care and tell us more about yourself. Family? Will need some help for at least 2 weeks at home after surgery. Bonnie

 

[Granbonny]

Martin

Martin

Our crazy pictures..because it is Halloween over here in America. Suppose to be for kids But I guess we have a lot of kids on forum Just young at HEART. Bonnie