The story (and a few questions. . . =)

[MelissaM]

Since Chris was kind enough to ask about my story (and even encouraged more questions!) here's the rundown and a few questions for the gang. . .

Shortly after having thyroid surgery to remove a non-cancerous (thank God!) tumor last July, my body started doing wierd things. I blacked out for an hour, had double vision, saw spiders where there were none, had massive headaches and spent more time on my couch than I ever thought possible. After about a month of that, I got fevers with chills. My thyroid surgeon dismissed all of this as "stress".

Another month later, I was having difficulty even carrying on a conversation - just couldn't remember what had been said before. This got the doc's attention and was admitted for - you guessed it - bacterial endocarditis.

The mitral valve was leaking moderate/severe, and they were thinking surgery would need to be performed as soon as reasonable. They wanted me to finish my course of antibiotics and come back for a repeat echo and TEE in a month. The repeat tests showed improvement - surgery was postponed.

Then last month - WHAM! - my exercise tolerance dropped dramatically, and a TEE, echo and cardiac cath were run. My regurge was rated 4+, and surgery recommended w/in three months - this again?!?

My test results were supposed to be sent to three surgeons - one here in Boulder, one in Denver, and Cosgrove - for opinions on whether the valve could be repaired, or would need to be replaced. So far, only the Boulder surgeon has weighed in, giving me a 60 - 70 % chance of being able to repair the valve. Still waiting to hear the other two opinions.

Given my age (30), and my desire to one day have children, I am thinking repair would be preferable to replacing the valve.

So. . .now the questions!

1) Anyone on the list have successful repair of a valve after bacterial endocarditis?

2) Anyone care to weigh in on choosing to repair rather than replace the valve?

3) For the young women on the list - some of you have artificial valves and are on coumadin - thoughts on how this will impact your decisions to have (more) children and how your coped with this emotionally?

4) Anyone else on the list self-employed? I currently run my own business and (unfortunately) don't have disability insurance. Any thoughts or real-life experience on keeping the business running during this time?

My mental status is fair - some days this all seems to be a bit too much (escpecially since I moved to a new city, started a business, ended a long-term relationship, had a cancer scare, experienced the loss of my grandmother, and have been riding the surgery roller-coaster in the past 18 months!) - other days it seems much more managable.

Having a resource like this definitely helps!

Any help you can provide with the above questions would be great!

Thanks bunches,

Melissa

 

[Kevin M]

I cannot help you with all your questions, but I have some experience with some of them.

First of all, repair vs. replacement does not need to be impacted by your desire to eventually have children. Tissue valves typically do not require blood thinners for the long term. Excluding complicating factors, they may put you on coumadin for a few weeks or a couple of months, but they would take you off them.

Many women opt for a tissue valve due to being in their child-bearing years. Doctors tend to strongly discourage pregnancy while on coumadin.

The down side of tissue valves is that they wear out and you would face additional replacement surgery in 10-15 years.

With respect to repair vs. replacement. I have no experience in this area, but it would be wise to learn more about the +/- from the doctors. Many people suggest that the least amount of invasiveness is ususally the best. In your case, that would mean repair. However, that theory could be displaced if they suggest repair would only offer you short term correction. I don't know a lot about this area, but there are others here who will likely step in and offer some solid advice.

I too, am self-employed and without disability (no one will insure me - the buggers). My company was nine years old when I went for my last surgery. Fortunately for me, my shop is near self-sufficient without me on the operations side. My role is more senior strategic counsel to clients and new business development. This being said, my crew got along without me, but they had to do a lot of 50 hour weeks.

The real problem I had was that there was no one feeding the machine while I was down. Consequently, we had our worst year ever. It took probably six months to build cash flow back to a place where I didn't feel like the company was at risk. Fortunately, I had enough investments put aside to cover us off for a year. I never had to use them, but I came close a few times. That was nice to have just from a peace of mind perspective.

In my industry, like many service and consulting groups, the company centres around the experience and reputation of its founder. When I wasn't there, it didn't have a dramatic effect on the short term, but I suspect some clients were concerned because of their perception of the seriousness of heart surgery.

There are many out there who think of heart surgery as a highly risky operation (like it was in the 60's and 70's. That freaks them out and rattles their confidence in your abilities.

I think a lot of it depends on the nature of your business, the amount of support you have (number of staff), your financial position and your own ability to deal with this additional stress.

My advice would be to do your best to protect yourself as best you can against the financial woes that could occur with your absence. The rest? Try not to worry about it. The important thing to consider is your health... both physical and mental.

You do not need the added stress of worrying about everything all at once. Try to prioritize your efforts around things you can control. There isn't a darn thing you can do about some of the things you will face and it's best to centre on your own well being.

Businesses, jobs, careers are all fluid. They constantly evolve. There are always good times and bad. You can drive yourself nuts worrying about that area. The worst thing that can happen is that you lose out and need to start over. That is devasting for many people, however, you seem like one of those people that can sort things out (you've been forced to with everything you've gone through in the last year or so).

This being said, I suggest you concentrate on yourself right now. Try not to worry about the work side. Even if it will cause you great discomfort later. You need to get better first. You will just make yourself more ill by worrying about the business.

Do what you can. Worry about the rest. You can't ask more of yourself than that.

If you wish to discuss this further, feel free to private message or email me. Keep well.
Kev

 

[ccrawford]

Hey Melissa - I'm battin zero on your questions, but looks like Kevin did a yeoman's job of giving you some of the straight scoop. A number of years ago I found a list of the ten most traumatic things a human can go through - guess what ? You're working your way right through that list kiddo. Don't be surprised if you have some pretty lousy days, but it will get better. Do you have somebody at home to help care for you once you get back from the hospital ? a post surgery patient needs quite a while before they can start caring for themself, but you do start to feel better every day. Chris

 

[Guest]

Can't say I can answer any of your questions, but felt compelled to write...

I know I've always wanted kids, too, but sometimes, I wonder if it'd be fair to them having to deal with my condition.... But, that wonder is very minute compared to my desire to have kids someday....lol....I'm told I need to find a gal first...that's usually the way it works .

I'm not self-employed, tho I have considered it from time to time.....

I read your other post about friends not getting it...and I can whole heartedly relate to that...even after surgery, sometimes I feel worse than I look...and that, for lack of a better description, confuses people...LOL. Course, you seem to have as energetic a schedule/life as I do, which also compounds the problem of friends not getting it.... But, you gotta keep living...you can't hold back because of your condition .

HTH,
Cort S, pig's valve & pacemaker-enhanced 29/swm
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[MelissaM]

Thanks for all of your insights! Kev, you are a world of wisdom. You are so right about the flow of life, and how I just need to concentrate on getting through this. If the biz doesn't make it through the surgery as well as I do, so be it.

A friend of mine said not to worry - "your like a cat, and they always land on their feet." Funny how it soemtimes doesn't seem that way when careening straight down in a 120 mph free fall!

It was really, really, really helpful to hear from someone else who had their own business. As you know, there are so many roller coasters in business. . .in this economy. . .especially a young business (such as mine!). I have a small marketing company - brochures, websites, campaigns, strategies and such - and finding business this past year has been a bit like the Joad's finding food in the book "The Grapes of Wrath." Just barely enough to keep the stomach full!

Chris, thanks for your response. Not sure where surgery will be yet - Boulder, Denver. . .Cleveland? So planning for post-surgery has been stymied a bit. Both of my sisters have offered to come and stay with me after surgery, which will be a blessing.

Gearing up for the "big day"

Thanks again,

Melissa

 

[Andrea]

Young women and valve replacement

Young women and valve replacement

Hi Melissa,

I havent been online much due to work and then a recent stay in ICU and I wish I had come across your postings before. I am 31 and had a Mytral Valve replacement 3/31/03. I was also at a 4+ regurge before surgery and felt very drained. As far as the having children issue, I already have two young daughters but still ocassionaly feel very resentful that I cant have another if I so choose to. I had a mechanical valve put in. An option that you may consider is a tissue valve. They generally last 8-10 years but during that time you can successfully have children from what I've heard. I am almost 4 months post op and am still pretty worn down. But I also have a 1.5 and 3.5 year old daughters and my company is going through a major transition which requires alot of my time. Plus I live in Phoenix AZ and the heat is killing me. I just got out of the hospital today because my heart rate was 190 this weekend and wouldnt go down. In the ER they stopped my heart and restarted it to 'reset' it. Now I'm home with my meds adjusted. Its not an easy journey but I am very happy to have a new lease on life.