Family Screening

[mtlieb]

Hi All,

I have four brothers and sisters, as well as a 19 year-old son who lives with his mother in New Jersey. My father suffered a sudden cardiac death twenty years ago, which we are now pretty certain was due to HCM, but it was not properly diagnosed at the time.

None of my brothers and sisters want to be tested for HCM... nor does my son. Their feeling is that it is simply better not to know. They are all adults now, and there is nothing i can do to force them to have the tests. But at the same time, it just seems so senseless that my father died so suddenly, especially since it could have been avoided if he had been properly diagnosed and treated.

Any suggestions on this matter would be greatly appreciated. Given the statistics... i just have to believe that it is unlikely that out of five children, i am the only one to have inherited HCM from my dad, especially when my little brother has already admitted to me that he is having symptoms that are as bad, if not worse, than my own.

Thank you,

JIm

[shirleymahoney]

Re: Family Screening

Jim

I have 4 brothers and one sister, my sister has been tested, My daughter has also been tested but my son refuses to, it drives me crazy but i can't make them, i've even told them if they are tested they could be saving their own childrens life and that hasn't worked either, if you have told them you have done your part and that's all you can do, i figure i can't hold them at gun point, but sometimes i feel like it, if you know what i mean, everytime i bring it up they tell me to drop it, so i'm not saying another word Hope someone else can jump in and give you more advice, i sure would like some also Take Care


Shirley


P.S my oldest brother died with this 17 years ago, and my neice also has it, and she is in pretty bad shape, so you would think they would run to the doctor

[Cynaburst]

Re: Family Screening

Jim - I have had this problem too. Although I am an only child, my father (who has HCM) had one brother who died suddenly in the early 70's who was found to have an enlarged septum and "hypertensive cardiomegaly" on autopsy. My uncle had three kids, one of whom is now the mother of 3 kids. I know that one of my cousins has been tested, but I strongly think that the others haven't. The doctors thought that my personal risk was high enough to warrant an ICD.

I wrote a very thorough e-mail including a link to this site to my cousins. I told them that I have HCM, as does my dad, and that we strongly suspected that was what their father died of. I told them that screenings were important in order to avoid a catastrophe like what happened to their father, and that with proper treatment, one can live a normal life with HCM. I encouraged them to read this site to get as much accurate info. about HCM as they could.

If they still don't get tested, there is nothing else I can do. Although I find it frustrating, ultimately, a person's health is their own to control, and I just pray that noone else drops dead from this disease. Sometimes for people just confronting their own mortality is just too difficult. As you and I have both learned, there are things that can be done, and once you have looked death in the face once or twice, it gets easier!

Anyway, I feel your frustration, and sympathize. All we can do is to hope for the best once we have passed along the information.

Happy Turkey Weekend to all.

[Pam Alexson]

Re: Family Screening

Hi Jim and all , You are right it is very frustrating to have family members refuse to be screened. It sought of feels like they don't really believe you when you say how serious this can be and even when they watch you go through open heart surgery you would think that they would get on board. Knowing that possibly things may have gone a little differently for me had I had earlier diagnosis and then intervention doesn't seem to impact them . I have a brother with early or milder HCM he is older :54. Then there is another brother who was born with a heart murmur serious enough to be followed at Boston Childrens Hospital who will not be screened . He refuses to have or encourage his 2 children to be screened and has convinced them it is a waste of time and money. Then my dear sweet sister who is fearfull and who like my brother with the murmur was followed at childrens and the at 18 was found to have an "out pouching "on her heart , mitral regurgitation and of course a loud heart murmur. She refuses. One of my daughters 22 a nursing student in her last year says she will not be screened again in 2004 I told her she may be 22 but I'll drag her there if I have to so we"ll see. Then of course there are the 22 cousins -2 because they both died of "cardiomyopathy" one at 30 in 1993 and the other at 42 the same year I was diagnosed;2000 . I think only 2 have been screened my brother who has it and the sister to the 30 year old. Of course none of the non screened cousins if they would go would go to a reputable center. They would choose to go to the local bandaid station where I was misdiagnosed . There echo's would all be read by the "chief of cardiology" who told me even after confimed Boston diagnosis that "this is nothing and you do not have HCM". So there is not much we can do .They are aware that something horrible is happening to many of us but for the most part they choose to shun hope and knowledge and risk the possibility of death . I quess we can only keep trying and pray that nothing happens. My 75 year old mother has decided to read Dr. Maron and Lisa's book so she can help those in the family if they ask or show an interest .Knowledge and learning can begin with one. Try not to get too frustrated at least you are trying. Good Luck Jim I hope I have helped. Pam

[Reenie]

Re: Family Screening

Hi. My husband has HCM and his sister had herself and her daughter tested. His brother says he doesn't think he needs to be tested. He did have one of his children tested, but not the other 2 and I doubt any will be tested further unless they suspect something weird.

We've wondered about our genetic link with HCM. Both of my husband's parents have had echos, although it's been a while, but neither have any evidence of HCM. Then a year ago we got an echo report from his 90 year old grandmother. She most likely had HCM (septum 1.8cm), but doctors won't look too closely because of her age and her history of high blood pressure. When talking to other family members just last weekend, though, I was told that my husband has 2 uncles and an aunt who have "heart problems" that involve the left ventricle. HELLO! I've been asking for 3+ years! They just don't communicate well in that family and not everybody knew that Uncle X had trouble and Uncle Y was a guinea pig for the Army and Aunt M had trouble with delivering child #2. Oy Vey!

Reenie

[Sarah]

Re: Family Screening

dear jim,

hcm can be very scary and i understand how people can sometimes feel like it would be better to just ignore the whole thing.

they may not understand that by avoiding testing, they may be avoiding treatment that would prolong or even save their lives. many people lead healthy, normal and productive lives with HCM with only some medication and routine checkups. however, in order to have that life, you need to get screened.

however, they are adults and they will have to make their own decisions.

take care,

let them know you love them and want them to have the best lives possible.

[Danielaeh]

Re: Family Screening

HI!

I think the right word to express the problem is: denial.
It also happened to my husband's family who is the 3 th. generation with the disease.
Did you invite them to read the stories here in the forum?
Maybe they can give blood and ask not to know the results until they are ready?
Thay understan is the future oo others in the family?
Be strong for you and them and find friends that can share your way and suport you!

[Lisa Salberg]

Re: Family Screening

Are you ready for this... I have family members who will not be screened! Yes, Lisa has family that will not be screened.
You can lead the horse to water...

Jim, How old is your son? I do not recall you mentioning a child before?

Denial is one word - fear, confusion, anger and simply lack of understanding are others...

WE can take care of ourselves... WE can try to help our loved ones - but that is all we can do.

Best to all!
Lisa

[karen]

Re: Family Screening

I also have family who will not listen. I have a sister that says her boys were checked 3 years ago and all was fine and so she doesn't have to take them back. One is now 15 and one is 21. My other sister refused to take her kids when I was diagnosed. And then again when my mother was diagnosed. I have a friend who was just diagnosed with it, he had his 3 daughters checked, and the cardiologists at the children's hospital told him the girls only needed to be checked every 5 years. Their ages are 10, 12, 15. I thought that kids were suppose to be checked yearly. Was I wrong about this??

[Sarah]

Re: Family Screening

yes, kids should be checked annually till mid-late 20s, then every 2 years, and in the 30s on, 5 years is fine. early teens up to 20s is the most common age of diagnosis. growth spurts and all that.

s

[karen]

Re: Family Screening

Thanks for clarifying that. Are the doctors here in Canada not given this message?

[Danielaeh]

Re: Family Screening

I think it is better to have an anual check up - even you do not have symptoms.
This is what it is used in my country.

[Sarah]

Re: Family Screening

since Canadian medicine is socialized, wait times and check up schedules tend to be longer there than her. my aunt only sees her cardiologist every 3 years! I see mine every 6 months!!! (she is in Nova Scotia, I'm in Chicago).

but 5 years is still way too long for a kid (my aunt is in her 50s).

s

[Glen Beamish]

Re: Family Screening

Having to wait really depends on where you are.
I have an annual appointment with my HCM Doc wheather I need to or not and there never has been a problem.
In the news they say people wait months for a CT scan.
I live just outside Toronto and had one scheduled the week after the request went in.
When I was at the Orthopedic Doc, I was talking to another patient who had a knee transplant.
He had a 6 month wait if he had it done in Toronto. He went to a smaller city 200 miles north of Toronto and had it done the following week.
My wife had cancer, her operation and follow up treatment were very quick, but then I hear some cancer patients have to wait.
Like I said it really depend on where you are.