echo frequency

[Dolly (Andrew's mom)]

It has been a long time since I have been here. I see many familiar names are still here though

Not sure if anyone will even remember me, but my son's info is in my signature. Obviously since I haven't been here in a while, things seem to be going well for Andrew despite his severe HCM, but I have one quick question. I can't find a direct answer by doing searches.

What is the "normal" frequency to do echos for someone who supposedly has a severe level of HCM? (I was once told he is a 10 out of 10 in severity) Every year? Every two years?

FYI....His ICD is interrogated every 3 months.

[gfox42]

Re: echo frequency

Hi Dolly,
I think once a year is common, but I wouldn't take that as a universal prescription. There may be good reasons to do it either more often or less often. What are they doing currently?

Gordon

[Dolly (Andrew's mom)]

Re: echo frequency

They have always been done once a year. He had an annual appointment today and it was his second in a row with no echo. Been two years since they have done an echo and he will be going a third year now. Needless to say I am very concerned about it.

[Cynaburst]

Re: echo frequency

I think that once a year is the norm for someone who is stable and not having issues. For a growing kid (and they are not considered to be finished growing until age 25), it is really imperative to follow their progress.

I would insist on an echo annually, and more often if there were issues.

My doc echoes me every time we change anything. Sometimes I have as many as 5 or 6 in a year.

[mandksiders]

Re: echo frequency

Does your son see an HCM specialist? If not, I would highly recommend going to a Center of Excellence. I am seen at the Mayo Clinic in Rochester, MN and can't say enough about it. I go yearly for an echo, an EKG, blood work, a chest x-ray and then the appt with my HCM specialist. I have no symptoms and my septal measurement is only 1.3. So, my HCM is probably considered "mild" in comparison to many others, but I still have thorough testing yearly.

My boys, who are gene positive for HCM, also have echo's yearly, matter of fact, because my oldest son's echo showed some changes (not enough to diagnose with HCM yet though), he's having an echo twice in a year just to keep a closer eye on him.

Take care,
Kaye

[Dolly (Andrew's mom)]

Re: echo frequency

Thank you for your responses. I had to think things through and calm down a bit before I spoke more.

The first problem is that he is now 21 and did NOT want his parents going with him anymore. He has never really taken any interest in his HCM, only knowing the very basics. This was the first appointment ever that I was not present. I did talk him into letting his father "ride along" since it is a 2 hour drive into a very large city and I convinced him he would appreciate the companionship for the drive. His dad just kind of followed him into the room to meet with the cardiologist without really asking. LOL!

A quick history on the medical facilities treating him........He started out at Mayo Clinic in 1995 (age 5) which is where he had his myectomy. A few years later we moved to a pediatric cardiology facility closer to home. (Where he had his ICD implant surgery) We were very happy with the care he received there. They were very thorough with his HCM and regularly conferred with a well known HCM specialist. He had yearly echos, EKGs, chest ex-rays, stress tests, ect....

Once he turned 18 he wanted to be switched to an adult cardiologist. I did not blame him as he was going to a clinic for "kids' and he was now an adult. The adult cardiologist we switched to was in the same main facility and is an adult HCM specialist. I was quite excited about this opportunity for him. (You would probably be shocked if I said where he is currently being treated!)

So this is where my original post started from.

His last echo was at his first appointment at this adult HCM facility in September of 2008! He has not had one since! This last appointment he was actually quite angry because all they did was an ICD interrogation and then he had to sit in the room for over one hour only for the cardiologist to come in, take a quick listen with the stethoscope, and say "See you next year." He could have just had the ICD reading over the phone like usual and not wasted all that time and money!!!! (I agree!)

Here are some quick numbers just for an idea:

Feb 1996 Pre-myectomy:
LVOT gradient 71 mm Hg

Feb 1996 post myectomy
LVOT 15 mm Hg
Septum size 3.0 cm


First appointment at adult HCM clinic in 2008
(including only the most notable from his echo report)
LVOT gradient 26 mm Hg
Septum size 3.5 cm
Moderate LV diastolic dysfunction
Moderately increased pulmonary pressures by tricuspid regurgitation velocity and right atrial pressures
Increase in the RVSP


And he has had NOTHING for tests since 2008 other then ICD interrogations. He could have the ICD treatment at our local hospital where they have an ICD clinic!

[Linda]

Re: echo frequency

Dolly - I don't have a magic solution for you - adulthood and independence comes as a shock to us parents in many ways, but the loss of control/input in care of a serious health problem can push you very near the edge. I know of what I speak.

We do know your son needs more comprehensive followup and I'll be interested to see suggestions from others as to how to go about helping him get it and keeping the lines of communication open in his care.

Thinking of you all - Linda

[gfox42]

Re: echo frequency

Dolly,
It seems as though there are two different issues here. One is the kind of care he should be receiving (and perhaps from whom he should be receiving it). The second is what role you can/should play in the process.

Regrettably, there's a strong relationship between the interest one has in HCM and the care received. You can't make him be interested or even informed.

How does HE feel about the care he is receiving? Does he have a sense that it might be inadequate? If so, there might be ways to help him get information that don't make him feel as though he's still being treated as a kid.

Gordon

[Dolly (Andrew's mom)]

Re: echo frequency

Linda, the thing that makes me kick myself the worst is that I was present at his appointment one year ago. I blew what turns out to be my last opportuniy to speak my mind. I was shocked even then that they did not do an echo (it had been one year since his last echo and they were letting him go another full year!?) but I sat there and said nothing about my concerns. They are the experts right?!

Now I no longer have the opportunity to speak up to the doctors and express my concerns! I blew my only chance to confront them face to face with my concerns about them letting him go so long between echos and demanding a yearly echo. And now he is going to go THREE YEARS without one..............

Additionally, he started keeping things quiet from us in regards to his condition. Not telling us when there has been issues that he had to have been aware of. We would find out at the appointments. Things like "Andrew, do you remember what you were doing on such and such a date? Your ICD started charging up to shock?" Andrew would respond that yes, he has had a few times where he remembers his heart "racing" or "pounding" or "feeling funny" ect ......... but he never would tell us those things. There were even times he had fainting episodes that we found out about later from people that were present. Andrew never told us.............so I know for a fact he will not call his doctor to report things that are not feeling right or that should be concerning He especially needs yearly monitoring since he is going through a stage of serious denial!

[LindaSo]

Re: echo frequency

This is reallly a tough one. It is almost like a "newbie" in and "oldie" HCM body as his myectomy is almost 15 years ago. My thoughts would be to get him to talk with Lisa. He is now in charge of his health and this is what other adults do.......we recommend a phone call with the office.
Good Luck
Linda

[Dolly (Andrew's mom)]

Re: echo frequency

Gordon,

In reference to how he feels himself about the care he is receiving, that is another concerning issue. My feeling is that since they have become so slack and casual about his condition (and that shows at his last two appointments) he has gotten the feeling this isn't such a big deal anymore. He now finds it more of a nuisance to go to the appointments. I think he understood the seriousness of his condition once upon a time. After this last appointment in December he was just plain angry that they had wasted 6 hours of his day and made him take a day off work, only to do an ICD interrogation. I can understand where he is getting very mixed messages.

Add to that the fact that he is at the very difficult stage in his life (for concerned parents) where his need for independence is at full tilt and he wants to just move on with his life. He very obviously does not want to be bothered with his HCM anymore. He went to his appointment. He was told "see you next year" and he doesn't even want to discuss it anymore. Period. His parents, or strangers, are honestly the last people he would take any advice from right now about this since the doctors themselves have basically told him indirectly that this is no big deal. He was basically given his ticket to "freedom from HCM" ...........at least for another year. And he took that and ran with it.

I guess after I originally posted is when I realized there really isn't anything I, or anyone else, can do about this. I think we are at a point where we have to just pray everything is stable and he survives to his next appointment. As his next appointment approaches I will then bring up the subject again and try to convince him to request an echo every year.

Thank you everyone for your responses.

[Toogoofy317]

Re: echo frequency

wow, that has to be tough. I was diagnosed at 21 and didn't have parents to guide me through this. I think my saving grace was that I was going into the medical field and I made that call to Lisa. The hospital I was going to was treating this very nonchalantly. If I hadn't been feeling so terrible I could have easily seen me taking their advice and never thinking about this HCM irritant again. And there is no way he will go on this website huh?

I would be incensed with this hospital and try to write a letter to his cardiologist. While he can no longer give you information about your son maybe it will get him to think about treating your son with more urgency. Especially, if he is having arrythmia issues I know for a fact my cardiologist would have me doing every test known to man. I mean the last time I had a bad infection and there was a chance that it could have spread to my heart they had me getting a heart cath done. But, I get one echo done at NEMC every year and a few down here by my local cardios. Usually, if I go in with chest pain I get one done then as well.

All, you can really do though at this point is be there for him when he decides to mature a bit and find out more. At least he has an AICD to protect him. I'll be praying that God will guide him in the right direction.

Mary

[Linda]

Re: echo frequency

Mary has a good point - I have told doctors and my son that I am well aware that they don't have to talk to me, but to be sure they are giving good and complete care, they should be listening to me. You might try getting a packet of info from the HCMA office and sending that and a list of your concerns to the doctor. I wouldn't do this without your son knowing your plans, but that's just me.

You do the best you can, and I'm sure your son is doing the best he is capable of or feels is necessary at the present. Maybe give him a packet also - leave where he can see it and read in his own time? Go over symptoms of concern with him, ask for a promise that he will call you for problems, not drive,etc and not place others in danger if all is not well. A discussion of this nature may jog the brain to take things more seriously if you can get him to grasp the danger to others.

I wish you the best - Linda

[mbcube]

Re: echo frequency

I "echo" Linda's comments.
Nobody said being a parent is easy!
Keep us posted!

[Janet McClure]

Re: echo frequency

My son James will be 18 in March. He has echos pretty regular. Of course he has been in heart failure for the last year and they do them probably every 6 weeks.