Can't sleep wondering if we have made the right decision

[BarbJean]

I can tell this is going to be a long night. What if we are wrong and should wait for Colin to have this surgery? I am reading a million Marfan posts and keep worrying we are having surgery done too soon. The geneticist and surgeon told us it was up to us to make the call. I have read that for Marfs it is recommended to repair between 4.5 and 5. The surgeon felt the risk of dissection is equal to the risk of surgery at this point. Yet, he says he cannot predict at what diameter Colin's aorta could dissect. It went from 4.1 to 4.59 in 13 months time. Does that measurement seem too small to all of you to go ahead with surgery? I think we felt that then we would not have the fear of dissection looming if it was taken care of now. But, what if we are wrong and he has more time to wait. I feel like it would be calling off a wedding at this point. You know how these doubts get to you in the middle of the night? Maybe by the morning, I will be feeling good about our decision to do it. I hope so!

 

[Philip B]

Well, if it makes you feel any better 4.59 does fall between the 4.5 and 5.0 range your research indicated. Decisions about heart surgery are often not easy, because this kind of surgery really is a big deal.

Consider how you would feel if you put it off thinking more time was available and a worse case senario played out. Do you guys really want to push luck like this? Wouldn't it be better to address the problem sooner rather than later?

-Philip

 

[BarbJean]

You are right on, Phillip. Even Colin feels it is better to do it sooner than later. I think I should stop looking up so much info. I had been reading posts on a Marfan forum where people were talking about how they reversed their dilation with the use of Losartan, something being researched right now for Marfs. I then went on to read a study of surgery in Marfan patients that mentioned mortality rates and deaths due to endocarditis and arrythmias. So, I began to think maybe we should just wait and try the Losartan at a higher dose and maybe we would hit the jackpot and the root would actually get smaller. This is what worrying moms do I guess! I better just try to get to sleep to stop these thoughts. Thanks, Barb

 

[ARGreenMN]

When faced with tough decisions where it seems like the data is too close to call, I think the best answer is to go with your gut feel. And it sounds like Colin's gut feel is to go ahead and get it done. From an outsiders point of view, who knows nothing about Marfan, that seems like the right thing to do anyway - because I don't think you'd want to risk dissection. Even though the data may say the risk is equal - I think I'd rather put myself in the hands of a good surgeon than just wait it out and hope for the best. And re: that info about reversing dilation with Losartan - I'm not sure that passes my gut feel test as an engineer... Not saying it's false, just something I'd be pretty leary of (I think). But as far as 'calling off the wedding' - that shouldn't be a factor at all in your decision! Even if you change your mind at the last minute, everyone will absolutely agree - it's your son's life at stake, so rescheduling a surgery is small potatoes if that's what's best! Anyway, hope you're sleeping by now. Keep us posted as you learn more and which way you're leaning.

 

[Luana]

Better too soon than too late, and this doesn't seem like it's too soon to me. The last thing you would want would be for his aorta to dissect. This pound of prevention will probably be worth 10 pounds of cure. Ask yourself this, if you cancel the surgery now and his aorta dissects before another surgery is planned, how would you feel?

 

[Marcia58]

Barb,

Mine was not marfan or even aorta (I had MVP) but I can tell you how quickly a seemingly stable heart condition can go south. One week in February of '09, I felt fine: even got "caught" running down the long (100+ ft) hall at church. A week later, I was retaining fluids, SOB, and couldn't walk the same hall w/o stopping to rest!

I know it's scary, but my vote is "don't wait--do it now"!

Marcia

 

[AgilityDog]

Yes, do it now. How many times has Ross had to tell his story? You don't want your son to have to have a similar story. Or no story.

I wish my mvp had been found sooner, and my mitral valve replaced sooner. If it had, maybe I wouldn't also be facing AVR next month.

Of course you are worried and second guessing yourself. That's normal.

But the choice is not now or later, it just might be now, or never. And we don't want never.

 

[Ross]

Mine ruptured at around 4.7. Need I say anything else? I can assure you, you don't want to go there!

 

[Bean Counter]

Stick with your gut feeling. In a few weeks, this will be behind you and then you can focus on moving forward with your life. If you don't get it done, you are going to be wondering "what if" until you get it done.

 

[BarbJean]

Thanks, all. I just needed to hear a few comments. Now that it is morning and those nasty goblins that haunt your mind in the night are gone, I feel better. And, Ross, I have read your story about dissection before and it makes me see that 4.59 is awfully close to 4.7. I know others who dissected at an even smaller measurement, so I have to keep thinking of that. I think this last week before surgery is going to be a hard one. You all talk about the waiting being the worst part-how true! I hope I don't annoy you all with my whining. In real life, I am not always a big baby.

 

[Ross]

I have a 3.6 killer lurking in my abdomen now. If you think that doesn't have me petrified, your seriously mistaken. After what I've been through, I just want it taken care of NOW and here I sit again, waiting for that darn magic number 5.

 

[Marcia58]

Barb, you're not whining. This is your baby you're sending into surgery--one of a very select few you'd willingly die for! You've spent the past 24 years planning, researching, thinking, rethinking, to make sure you kept him safe and did what was best for him. Why would you stop now?

Hugs and prayers,

Marcia (a "fellow mom")

 

[Penny]

It is such a difficult position to be in for you.. I think it is pretty natural to be second guessing yourself at this stage. I know I am doing that very same thing with my valve choice yet have been told by many members that they did the same.. so I am chalking mine up to just being a normal part of the process...
It will be over with in no time Barb yet feel like an eternity to get to surgery day! You will be in my thoughts and prayers... Msg any of us anytime you need someone to vent on, cry on, or just listen...

 

[Gnusgal]

My mother has always said she could get through all of my ups and downs if someone could just tell her WHEN things would happen. Unfortunately, we don't know. So we have to do the best we can with what we do know. And when we know better, we do better (paraphrased from Maya Angelou).

Hang in there. Pretty soon this end of the worry will be over. (((hugs)))

 

[BarbJean]

Thanks!!!!!! I used to feel the same way. When Colin was diagnosed, I remember thinking the uncertainty would drive me out of my mind. I wanted to know when surgery would be, what age, what time, every last detail. For 20 years, we have known this day would come and we are really very fortunate that he has had a very good and healthy 20 years thus far. It has taken me a long time to realize there is no such thing as certainty anyway. We just think, and wish, there is. I like the "when we know better, we do better". I also keep telling myself, "Let go, and let God."

 

[Ross]

I also keep telling myself, "Let go, and let God."

Ultimately, that is exactly what you have to do.

 

[Superbob]

Glad you're feeling better about it today. I tell you from personal experience, surfing the Net for more and more info can drive you plumb crazy at times (even though it can be a good resource, too). I am not an expert, but the rate of enlargement you cited sure sounds like surgery is better done sooner than later. Wishing Colin (and you and rest of family) all the best....

 

[BarbJean]

You are so right, Bob. The Internet is both a blessing and a curse for me. I am an information hog and sometimes it is better to just reach the point where you say, "Enough!"

 

[vtbecca]

It's so different when it's your child, and I think if he feels ready than it is the thing to do. Not only do you risk a dissection if you wait, but you also have the awful waiting phase. You (and he) would probably start worrying about symptoms. And really things can go FAST and with no warning. Yes, surgery is risky, but so is waiting. Do you really want to wait until the risks of surgery are lower than the risk of waiting? Since no one can predict the future you don't know how much time beyond now it will take.

I will tell you that my son needed his PA replaced. The cath doc felt it could be done anytime. We scheduled it. Pre op day the surgeon and team felt he was too healthy. By the numbers he was borderline. The surgeon anticipated getting at least 6 months to a year more from his conduit if we waited. He got worse and it was fast but I didn't notice. His sweating increased, but it was summer so that was expected. His naps increased, but he was a toddler and it was summer so it didn't seem odd. About 2 months after the surgery that didn't happen I noticed a giant pool of sweat in his crib. We saw the PC and exactly 2 weeks later Gabe was being wheeled into the OR for his surgery. We only got 3 months beyond the date of the borderline measure. He wasn't in dire circumstances, but at age 17 months he was literally panting when going up a flight of stairs. His heart was laboring at that point. Waiting may have been the right thing- he's almost at 8 years with his valve and conduit- but I honestly think it would have been better to do it earlier for many reasons. I'm thankful it all turned out OK but having so little to prepare was a bit rough on all of us.

Becca

 

[Robb Wilder]

Alls I can say is I wish I could have went through this before I had the responsiblity as a husband and father. It kills me to put my wife and child through this. I wish they would have been able to do something sooner. This is totally his decision to make with your input of course but thats how I feel on my pending surgery.