Seeking Advice/Words of Wisdom

[francie12]

Hello all-- I don't post much but I check in alot, so thanks for all the advice and words of wisdom you give me every day without even knowing it!

Some of you may be familiar with my story from the Heart Talk forum, but in a nutshell... Because of my older son Matt's BAV and aorta issues, my husband and younger son Dave were screened by echo a year ago. I guess not surprisingly, although to us it was, both came back with aortic roots on the highest edge of normal. Son Dave was told to come back in one year for another echo, which we just did. His enlargement is increasing and has moved higher up, so he is to return for another echo next year. (Sorry, this is long) If this progression continues, he will start with Matt's cardiologist.

The advice/words of wisdom concern DH. Because of the limitations of the echo, they could only see the aortic root, which is large, and nothing above it. So they prescribed a cardiac MRA to check the asc. aorta. Now DH hates doctors and anything medical and absolutely refuses to have this done. I have reasoned from every angle (tactfully), but my logic falls on deaf ears. I'm obviously worried there could be an aneurysm. Even the argument that his results could shed useful light on both boys' genetics does not move him. Does anyone have any advice/words of wisdom? Am I being too pushy or not pushy enough? I want to do the right thing, but at this point I'm having a hard time seeng the forest for the trees.

Any input from you wonderful people will be much appreciated!

Jane

 

[Ross]

Well it's silly not to have it checked. If the Aorta is large or more so then normal, chances are great for an aneurysm to be upriver a bit. It's not something to turn your back on or "Wish" it away if it is there. Knowing what I do now, I'd want it found and removed as soon as necessary.

 

[Karlynn]

My Mom died suddenly from a dissecting aortic aneurysm. It was a very painful death for her. She was in excruciating pain, lost all feeling in her legs due to the pressure of the dissection on her spinal cord, then eventually lost consciousness, never to regain it. She was gone in an hour. It appears to me that your DH has 2 choices. Get the test and know what's going on and how to deal fix it if it needs to be fixed, or not get the test and live his life blissfully ignorant knowing that there may come a time out of the blue when he's standing at the washing machine putting in a load of laundry (what my Mom was doing) and experience a sudden, crushing pain in his chest and not be alive an hour later.

I'm sorry to be so blunt because I know that's exactly what you worry about. Have your husband read this. I sure wish we'd had warning signs. Your husband has his warning sign, it's totally foolish and utterly selfish for him to not get a definite answer. It's something that can be fixed.

 

[Nancy]

The main reason my husband lived as long as he did with his very severe medical problems was that he "wanted to live" more than he cared about what they were doing to him. Perhaps the doctor can open his eyes up more and give him a little talk about the nature of his problems. He's obviously in big denial, and who can blame him. It's scary.

If he finds out good news, then that's wonderful. If he finds out bad news, then he can have it fixed.

These problems can be fixed as long as they get fixed before something terrible happens. In that respect. people with these conditions are fortunate. They have something that has a fix. Other medical problems may not be fixable.

If he does not go and have it looked at, and something bad happens, the outlook is not good.

I see only a win-win thing in getting it looked at. It is not surgery at this point, just a diagnostic tool.

Keep telling him that you love him and want him around for a while, and so do his children.

Sometimes the denial comes from not understanding the mechanics of what is going on inside the body. Once that is explained, it is easier to see why taking care of it is the right thing to do.

 

[Bina]

Denial is a dangerous thing. It's understandable for a single guy, but for a family man it's just plain crazy.
Speak his language: Frying pan to the back of the head...ouch.

 

[Superbob]

My Mom died suddenly from a dissecting aortic aneurysm. It was a very painful death for her. She was in excruciating pain, lost all feeling in her legs due to the pressure of the dissection on her spinal cord, then eventually lost consciousness, never to regain it. She was gone in an hour. It appears to me that your DH has 2 choices. Get the test and know what's going on and how to deal fix it if it needs to be fixed, or not get the test and live his life blissfully ignorant knowing that there may come a time out of the blue when he's standing at the washing machine putting in a load of laundry (what my Mom was doing) and experience a sudden, crushing pain in his chest and not be alive an hour later.

I'm sorry to be so blunt because I know that's exactly what you worry about. Have your husband read this. I sure wish we'd had warning signs. Your husband has his warning sign, it's totally foolish and utterly selfish for him to not get a definite answer. It's something that can be fixed.

I can't say it better than this. These are true words of wisdom. Get it checked and get it fixed if necessary. This is nothing to be stubborn about.

 

[Mary]

Perhaps you can try the monetary route . . . . have it done now so it will fall on this year's insurance deductible (hopefully it's been met, so it would be much less expensive.)
You might not believe this Francie, but this morning while sitting in the doctor's waiting room, I was considering the very same issue.

Our son was diagnosed with a BAV after mine was found, and the cardio told me at the last appointment that he would recommend a CT scan with contrast to view his aorta. Of course he doesn't want it done, but this morning, I thought I could try and mention the insurance angle to him.

So here's a thought . . . . let's both try it, and see how we do!

 

[Cooker]

Every body responds or reacts different. The fear that some people have literally paralyzes them, they can not move forward and have the needed treatment. Other people say ?let?s get it done?. I am sure there are other reasons (besides fear) that some do not go ahead with treatment. I was a ?get it done? guy and I don?t understand those who refuse to move forward with examinations and or procedures but I respect the fact that their reasons are very real to them. But unfortunately, these fears and delays can be fatal.

I wish you the best.

 

[Bina]

Every body responds or reacts different. The fear that some people have literally paralyzes them, they can not move forward and have the needed treatment. Other people say ?let?s get it done?. I am sure there are other reasons (besides fear) that some do not go ahead with treatment. I was a ?get it done? guy and I don?t understand those who refuse to move forward with examinations and or procedures but I respect the fact that their reasons are very real to them. But unfortunately, these fears and delays can be fatal.

I wish you the best.

I was not a "get it done" guy (gal), so I understand completely. There was denial of my symptoms for a long time until 2 doctors told me I was getting very close to dying. I saw the surgeon a second time and he said "lets get it done". When I tried yet again to delay, he GLARED at me and booked me for OHS 2 weeks later. Hubby promised to drag me back even if he would have to knock me out first.
I decided my family was worth fighting for. Best wishes.

 

[francie12]

Thanks so much for your quick and warm responses. As you have noted, fear seems to be the problem. Even for way less important medical issues there is always a good deal of denial. But this time it's, "There's nothing wrong with my heart." The stakes are so much higher. I have to feel out how hard to push without increasing the fear and pushing back the acceptance even farther. The cardiologist (geneticist, actually) says that if there is significant dilation then taking beta-blockers could even slow it to the point where surgery that might have been inevitable could be avoided. That might be the most convincing. But logic does not seem to be the issue here... Maybe please just do it for us is the real way to go...

 

[Nancy]

Another thing I forgot to mention was that Joe, like a lot of men, responded better to his doctors saying it right out instead of beating around the bush. That way he could deal with it instead of trying to find out what the heck they actually meant.

When they laid it right on the line warts and all, man to man, that was the best way for him.

 

[briansmom]

I'm going to be blunt also. You already have a son with heart issues. Boy do I know how hard that is. Your husband risks abandoning his wife and children by not checking this out. I'm sure that he is really not that type of guy seeing as how you are still married and I'm sure that he has been doing his fair share of the parenting. He really needs to realize that he could die if he ignores a possible aneurysm. On the other hand, he can live a long healthy life by just taking care of it.
The frying pan may be your only option.

 

[WayneGM]

I can't add any more reasoning than what's been said....get it checked out and fixed if necessary. There's nothing to be gained through denial. Best wishes and good luck.

 

[francie12]

Thanks everybody for all the advice. It was just what I was looking for--the support of others who understand.

Nancy, that is great advice about getting the doctor to do the talking. The trouble is that he does not actually see the doctor until he has the MRA, it has only been the echo tech that he has met with so far. I think it is really the doctor and what she will say that he wants to steer clear of! I asked them to reiterate the importance of dad getting the test in young Dave's echo results letter, but I guess they forgot . I do plan to contact their office and try to get them to call him as a reminder since it has been a year since the test was recommended--this could open things up a bit...

Mary, I love the idea of both of us trying the insurance deductable/monetary route together! I'll try that one again, and with strength in numbers maybe we will both succeed. So sorry that BAV is a concern in your family too. You have my deepest wishes that any tests come out negative. This is one time when nobody wants to be able to say "I told you so!!"

Warmest thanks again for everyone's input. I'll let you know how it all comes out...looking forward to using that "thumbs up" icon!

Jane

 

[DeWayne]

I have had a fear of doctors all my life, seems it might have something to do with heart surgery when I was 4......

When I went in 18 months ago, even though I knew what was coming I just told my wife to set up the appointment and don't tell me when it was right up to the day it was going to happen. I found out early of course, and no I didn't WANT to go, but I did.

They made their tests. My cardiologist came in said I have news......
"You know who John Ritter was?" I said yes. She said "you have what killed him. You need surgery and you need it in the next 6 months and until you dhave surgery don't pick up anything heavier than a loaf of bread, because if you do you might die!"

Well when its put to you that way you sort of take it that it is a bit on the serious side.

 

[Susan BAV]

I was thinking also, Francie, that your sons may tend to follow their father's example; might that reasoning work?

 

[Philip B]

Denial?

Denial?

Hi Jane,

I wish there was a common cure for the denial thing. I did the denial thing for twenty-seven years. Last February, during a trip to the ER for a totally stupid kitchen accident, the ER doc gave me a hard time for not having the "washing machine" in my chest monitored regularly. I guess my heart murmur sounded pretty bad. I left the hospital angry at the doc and still in denial. My wife convinced me to visit with a cardio doctor as recommended by the ER doc. In the end, I ended up needing AVR and an aortic graft. Following my surgery, the surgeon told me that based on his experience he felt that I had between six weeks and six months before my aortic anneurysm blew. I refer to the circumstances that played-out as luck; my wife refers to the circumstances as divine intevention. Since I believe things happen for a reason she's probably right.

Hopefully, you'll be able to convince your husband to take things step-by-step. The CT scan which showed how big my anneurysm was finally shifted me out of denial mode.

Interestingly, I'm the only one in my family who was "blessed" with congenital heart issues. I don't know if this follows the norm or goes against it. A CT scan could indicate that your husband has no big issues to worry about.

Try to get him to get the scan done. It may sound fatalistic, but there's probably a reason for the docs noting his enlarged valve thing.

-Philip