My Story

[TIM W.]

Hi all!!!
I will give you all a quick run-down of my story. Hadn't seen a doctor in about 8 years. (Have had a heart murmer since birth)During year of 2000, began feeling tired and run-down all the time, easily short of breath and occassional chest pains while performing simple tasks, and had palpitations (arrythmias) about 3 -4 times a day. Just figured old-age was setting in!!! Finally in May of 2002, went to see my doctor. He sent me for x-rays and an echo. Two weeks later, I went in for my follow-up and just happened to be experiencing some chest "pressure" at the time. Office tech. ran an EKG. Doctor came in all panic stricken, called an ambulance, and sent me off to Hamot Heart Institute, an hour away! An emergency cath was done. Found a bi-cuspid/stenotic aotic valve. Listed me at the beginning of moderate stage.
Follow-up in October with cardio. Ordered a second echo to compare to the one done in May. Noticed murmer had become louder, valve narrower. Had me wear a Holter monitor for a couple days to try to catch the palps. Cardio called me on Christmas with results of Holter, concerned about all the multiple palps. Set-me up an appointment with one of his partners, the "arrythmia guy". He set up an EP Study for early January. This showed no electrical problems, so he wanted to focus more on the valve causing the problem. He scheduled a TEE for mid-February. I must say, even though I slightly remember the tube going down, I don't remember anything except waking up afterwards. To make my long story even shorter, the TEE showed I have now entered severe stage, aorta at 0.9cm. Chest pains are daily, out of breath with any exersion. Scheduled for surgery March 17. Now, for the real kicker! I was told on Feb. 19 that I needed to have valve replacement surgery and the Cardio and I decided I would have a St. Jude mechanical because of my age, 43. Feb 20, the plant I work at announced it was closing it's doors on April 18!!! Talk about timing for that news!!! So here is my dilemma. I will lose my insurance coverage when the plant closes. So now I think I will be better off with a pig valve due to the expense of having to take warafin and the constant level testing that goes along with it. Any advice?

 

[Nancy]

Hi Tim-

Welcome to this fantastic site. You'll love it here. It sounds as if you had some shocking news lately, to say the least. Valve surgery and now your plant is closing. But keep thinking positive. There are members here who have weathered both situations. I can't help you with insurance problems, but there are some pretty astute people here who know the insurance ropes and will help you with that.

As far as surgery goes, keep in mind that this will be lifesaving for you. The docs who do it are experts at what they do. The surgery is highly perfected and the mortality rate is low. You'll be uncomfortable for a while afterwards, but you would expect this with any major surgery. Once the initial healing is over, you will be feeling much better than you are now.

Surprisingly enough you will be home from surgery in about 5 to 7 days. You will be amazed at how soon after surgery they will be having you up and walking around.

My husband has had 3 valve surgeries.

Take care and I hope we'll see you here often.

 

[EVELYN]

Hi Tim

As Nancy just said, Welcome to a wonderful site. Wow, you have had alot of news to deal with lately. I'm sure you'll get lots of advice from the wonderful group who belong to this site. In my humble opinion, I truly think you might try to look at the two situations apart from each other.

On one hand, you were set to go with a mechanical valve. I'm sure your cardio mentioned it because of your age and the fact that you probably don't want to go through another of these surgeries. If the coumadin and regulation thereof doesn't bother you, then I should think you would stick with that decision.

On the other hand, you are facing your plant's closing. Are you planning to reenter the work force post surgery? If so, then you will more than likely have group coverage after a time. Until then, doesn't your present insurance cover you for 30 days and then couldn't you buy COBRA coverage?

If at all possible, I wouldn't compromise my health plans. I'm sure Rossman can help you with the insurance situation....he certainly has been through the insurance nightmare.

I hope we see you here often. Welcome to another New Yorker!!!

Evelyn

 

[JimL]

Welcome Tim! My story is similar to yours in several ways, such as not seeing a doc for eight years, age, exhaustion, etc.

You will certainly want some kind of insurance; from what others have said, you don't want any time at all without coverage; the new policy should take over for the old one.

In comparing surgery costs, you need to balance the cost of a second surgery, if you should go for a pig valve, against the cost of warfarin (which costs me $80 a year for my co-pay) and regular testing (which costs me nothing, but the insurance company about $30 each time).

Keep us informed.

 

[hensylee]

Hi, Tim - you have just acquired a whole slew of new friends - and from everywhere around the globe. Nice, huh. We are here to stand beside you from day one and right along the path and over that big ole mountain. Good bunch of people here and we are here just for you. Welcome - God bless

 

[hsilvers]

Hello everyone and welcome from the Far East (Eastern Canada that is),

I have learned a great deal from everyone else so far - and like all of you also have a story. 2002 - 2003 has been quite a year for me. In April - I went to my doctor and showed her a lump that I had on the side of my neck that I thought was simply a swollen gland. After literally many tests, three biopsies, and a cats-scan - my doctor decided that the best recourse was to remove it and see what it might be.

That was done in September and a week later I was back in for major surgery - 11 hours worth to remove my thryroid and 49 lymph nodes. At Halloween - I had 65 staples around my neck and had great fun showing this off to the generation who think that a pierced nose or earlobe is a big deal. The thyroid and one lymph node were cancerous, and I then followed up with radioactive iodine treatments in November.

Well - by now you must be wondering what the hell this story has to do with valve replacement. During the follow-up for the thyroid cancer - it was discovered that I had some fluid around my heart and lungs. That prompted further investigations and it turns out that I have an aortic stenosis (that I did know about previously). However, since the last time I had it checked about a year ago - the gap had narrowed from 1cm to about .9cm. It is the usual story - a bicuspid valve that has calcified and is now causing real problems.

My doctor decided to follow-up the echocardiogram with a cardiac catheter to find out more about what was going on. Good new and not so good news was the result. The great news was that my hear was in great shape - normal circulation and arteries, etc. The bad news was that my stenosis was now .7mm and I am now scheduled for valve replacement some time within the next couple of weeks.

The end result - with all of the surger, testing, radiation, etc. - I have been in and out of the hospital virtually every week since September.

Believe it or not - I am otherwise in great shape. I am 57 years young, a golf fanatic, and I work out regularly doing spinning and weights about three times a week. I have three grown kids - one in Virgina, one in New York, and one in Ottawa (Canada's Washington) and a now very patient wife.

It has only been the last 3-4 weeks where I have been getting quite out of breath and have had to cut way back. I have not yet met my surgeon so still have not had the chance to discuss valve options - but am leaning towards the tissue type. It seems to me that higher qulaity of life would be the result without the worries of blood thinner.

The real question I have now is to find out your knowledge and experience with the life of valves. For someone my age - how long is it realistic to expect a both a tissue and mechanical valve to last. One cardiologist told me that 10-15 years is average for a tissue valve while mechanicals are not unlimited either (and more like a 15-20 year cycle. Since I still plan to be going strong at 90 - this likely means a tissue-replacement at around 72 or a mechanical replacement around 80.

Does this seem realistic? If I am accurate - the choice considering all factors would seem to be to go for a tissue valve.

I plan to stay active. I am a dual citizen of both Canada and the US, grew up in Wisconsin, and lived in Colorado, South Carolina, Cape Cod, and New York before arriving in Halifax almost 24 years ago.

The medical system here is fanatastic - don't believe the propaganda you read in most US sources - and the climate in Halifax is very similar to Cape Cod. We have the best lobsters and scallops in the world and actually are at the same latitude as Wausau, Wisconsin - only we have the warm Gulf Stream offshore.

I would appreciate any insights you may offer, and want to thank all of you again for sharing your experiences as I await my imminent surgery.

Harvey

 

[Ross]

Hi Tim

I don't know what your financial cir***stances are, but there are always ways to deal with the coumadin and once your stable with it, you'll only test once a month. I'm using Generic Warfarin from Barr Pharmaceutical. 60- 5mg tabs run me $25.31. The INR Check, if I had to pay out of pocket is about $30.00. My 60 tabs last me about a month and a half. Your dosage may be lower or a little higher, but I doubt that it would be by much.

The biggest thing for you is to maintain insurance. I know it's nearly impossible or is impossible to continue under C.O.B.R.A. provisions, but if you can swing it, by all means keep it, at least until your on your feet and can look for employment.

I'm sorry to hear that your about to join the ranks of most other Americans with the loss of a job due to plant closings. My wife and I are in the same boat, so I know what your feeling.

By the way, that is not a dirty word in the first sentence. Gotta love the censor list.

 

[Nancy]

Hi Harvey-

Welcome to this wonderful site. You will love the friendship and support you find here. Everyone here gets it as far as valve surgery and way beyond. Plus we manage to have some fun along the way. Not all is doom and gloom.

As far as valves go, my husband has had 3 valve surgeries plus a whole boatload of very serious other things. He has 2 mechanical valves, aortic and mitral and had to have a minor leak repaired in the mitral.

His aortic valve has been in place for 25 years and is still chugging along. Mechanical valves last for a very, very long time. I think your doctor underestimated the longevity of the mechanicals.

Joe, my husband, has been on Coumadin for 25 years. It's really a non-issue for him. It's routine and part of his life. He's 71 years old now, and in his younger years he was very active and athletic. So I wouldn't throw out all the choices just because of Coumadin. Really, Coumadin is the very least of his medical problems.

I can speak about having repeat surgeries. they become more difficult each time you have one. There is scar tissue to worry about, plus you just don't recover and bounce back like you did when it was only one surgery.

Whatever choice you finally make for yourself, will of course, be the right one for you.

I hope we see you here often.

 

[medtronic of borg]

Costs

Costs

Yes you are being told correctly. My Coumadin cost is $25 a month and test $8 a month. Thats not enough to worry about and it shouldn't change your plans. I stand by mechanic valves.

 

[Rich]

Welcome Tim and Harvey,
I'm glad you both found this great site.
Tim you have been through a lot already and I want to wish you the best for your upcoming surgery. A plant closing sure hurts right now so I hope you can find something soon.
Valve choice is a very personal thing based on your lifestyle.

Harvey,
I was 58 at the time of my surgery and now am almost 7 years post-op.
I have a St Jude mechanical and it has been just great.
The Coumadin is not a problem.
Depending on your insurance my co-pay for the Coumadin is $120 per year and would be a lot less if I chose the generic.
A monthly blood test costs me about $9.
My surgeon told me to expect 30-35 years from this valve so I guess time will tell.
The big question for both of you is do you want to go thru this more than once in your life?

 

[shana23]

pre-surgery

pre-surgery

Hi Tim,I'm going in on March 12th for a valve repair/replacement too and I want a pig valve just cause I don't want to be bothered with the medication and medical controlls all the time.Now I'm 54 so there is an age difference but I figure that in 10 to 12 years the surgery will be less invasive and that I'll have fewer problems(medicine ect.)to complicate my life.But still one never knows they can go in there and then decide on a different valve then the one you choose cause the doctor thinks it's better.Tim I'll be thinking of you and good luck this is a great site just come in and someone is always here shana23

 

[wlaldridge]

Welcome Tim and Harvey,

I only want to echo the others, this is the place for help and support.

If at all possible stay insured under cobra or other so you avoid the "pre-existing condition" trap/catch-22.

Mechanicals last a very long time, St. Jude advertises "one valve for life" it is an intentional play on word with double meaning but very likely true for most of us.

The surgeon will be the final arbiter as to valve choice once he is "in" and gets the total picture.

I wanted a "stentless porcine" but got a St. Jude. The warfarin is relatively cheap and the testing is down to once a month. A consistant diet (not to be read as boring) and lifestyle has made the drug and testing a basic "non event" . I am a big baby about needles, etc, but this is just not a big deal now after less than 6 months.

Listen to Nancy and the others, focus on the lifesaving nature of this event and learn all you can from this great site.

I am so sorry you guy have to go through this but know from my own and others experience that it will work out well for you.

The plant closing is a serious bummer. I am thankful that you have the insurance now and they will not be able to drop you prior to the surgery.

Best of luck and come back here often. Ask any questions and someone will be able to help.

Best Wishes,

Bill

 

[hensylee]

Hey Harvey - welcome to VR where there is always good support, advice and interesting reading. You can get all (well, most of them) questions answered. God bless

 

[TIM W.]

Thank-you all for the helpful advice. I will have the option of COBRA insurance, however it will cost $500./month! I meet with my surgeon again this coming Tuesday and will go over each option with him once more and make a dceision. I will post an update to you all then.
Can anyone tell me how long this particular surgery usually takes?

 

[Nancy]

How long it will take is a very good question to ask the surgeon. They have a pretty darn good handle on what to expect before they go in. But, it's not hard and fast. Sometimes, things are a little different when they open you up. All the tests you have done prior are a good estimate of the situation, but there's nothing like an up close and personal view of the particular problems you present.

Best wishes.

 

[sylviayasgur]

hi tim and harvey!
welcome to this wonderful "family". everyone here is so kind, sensitive, supposrtive and knowledgeable.

tim,
i'm so sorry you have to worry about insurance on top of your worries about the surgery. hopefully some folks here will be able to help and things will turn out well with that. please keep us posted as things unravel.

harvey,
you poor thing... first the thyroid, now this!
take a look at the post started by peter easton back in the summer of 2001 entitled "making the choice". it gives several options and clearly points out pros and cons of each.
from what i understand, coumdin is not a big deal. it's those who do not take it regularly who perceive it as a nuisance.

please keep us posted on how things go with you.
wishing you all the best,
sylvia

 

[hsilvers]

Thank you to everyone for the encouragement and support. From all of the posts so far - it seems that the choice between a tissue valve and mechanical valve may not really be so critical. Everyone seems fairly secure with whatever choice they - or their surgeon - made.

For me now - the big question is just when will be my date for surgery. The one big issue with Canadian Health care - is that you must wait your turn. Precedence depends upon relative need - not income. All things considered - it is not really a bad system - and my experience here in Nova Sctia is that overall choices are made on a very fair basis.

From what I have been able to learn - it takes about 3 months after the valve replacement until one is able to swing a golf club with any confidence. I' still hoping to make it on the course by mid June.

Are there any golfers out there who can provide any advice about recuperation and getting back in the swing?

Harvey

 

[pillarpaul]

Tim and Harvey,

I found this wonderful site one week ago and I can't believe the encouragement from everyone so I'm glad I can reciprocate. I, too just had to make the decision on tissue vs mechanical. I'm 52 so I figured a tissue valve meant at least one or two more surgeries. The coumadin also scared me as I had been on it once before for a month years ago and wound up one Sunday afternoon in an emergency room for a nose cauterization, all from a bloody nose that wouldn't stop. Yes, the surgery may become less invasive some day, but the other side is that there is an anti-coagulant in developmnet now (can't remember the name) that is due out later this year that will apparently be a major improvement over warfarin. Like veryone says, it's a personal decision for you and your doc but I did opt to go mechanical when I have my surgery next month. Best of luck!

Paul

 

[epstns]

I'm with you, I think. . .

I'm with you, I think. . .

Hi Paul - Having done a lot of the same research you've just done (I'm the #2 control freak here -- not scheduled for surgery yet but had to think it ALL out. . . ) and I think I will also be opting for the mechanical when I sign on the dotted line. I believe coumadin is manageable and that other substitute may be even better. I would rather deal with the drug, methinks, than another surgery.

Now, if they perfect that catheter-implanted valve before I have mine replaced. . .

 

[Bob]

How long?

How long?

Hi Tim