Cardiac Hypertrophy with Fibrosis

[Tracey]

Can anyone tell me if
Cardiac Hypertrophy with Fibrosis
is another name for HCM?
My mother passed away Jan 22, 2003 at the age of 58. I got her death certificate today after the Justice of the Peace got her autopsy report. The above was the immediate cause of death with the interval between death and onset listed as acute.
She had many "fainting spells" she attributed to low blood sugar. Her father died at 57 of a massive heart attack - no autopsy. Many other family members with hear ailments. She had recently (the last couple of years) been battling thyroid disease/failure. She had a heart attack when she was in her 30's but she was never diagnosed with anything more than mitro valve prolapse.
Being a holiday weekend, I wasn't able to get an English version of this "cause of death". I need to know more to help determine the road to follow in testing my children and myself. As well as recommending to others in our family to do the same.
My mother was eating breakfast and died very suddenly. I assume this is the same story heard over and over with this condition.
Would love any information I can get.
Thank you!

[Reenie]

Re: Cardiac Hypertrophy with Fibrosis

Tracey, I don't know for sure. I do know that many people with HCM are misdiagnosed with mitral valve prolapse. One of the possible symptoms of HCM is sudden death. Add to this her heart attack at a young age and many other relatives with heart conditions sure leads one to think these are related. Since this is a holiday I would think that people will not answer much until next week. I am sure, though, that you will have others write soon. Have a good Easter.

Reenie
Oh, and

[Pat]

Re: Cardiac Hypertrophy with Fibrosis

Tracey,

I think Cardiac Hypertrophy with Fibrosis may well be a pathologist's way of describing what was seen on the post-mortem exam without attempting to make a specific diagnosis like HCM. But I'd be concerned enough--especially with all the other episodes your mother and other family members had--if I were you that I'd get as detailed a report of the post-mortem as is available and seek an appointment with a cardiologist who understands HCM.

The word "fibrosis" does not appear in any of the 75 terms listed in Maron & Salberg as having been used to describe HCM. The word "stenosis" does appear repeatedly. I looked up both of these terms in my medical dictionary and am putting the definitions below. I think you can see how these terms could well refer to the same anatomical changes in the heart.
Fibrosis--Abnormal formation of fibrous (containing fibers) tissue.
Stenosis--Constriction or narrowing of a passage. It may result from . . . excessive development of fibrous tissue.

I'm sorry about your mother's death. I'm glad you are getting the information you need to protect yourself and the rest of your family.

Pat

[Linda]

Re: Cardiac Hypertrophy with Fibrosis

Tracey, I'm so sorry about the tragic loss of your mother. You are right to be concerned about others in the family. You've gotten a good start on learning what you need to know. Holiday weekends don't take away the need to know or the worry surrounding it. You have a beginning on the info you are searching for in Reenie's and Pat's postings, but talking to your mother's doctor and his interpretation of the findings will no doubt give you many answers. With each bit of new info, you will find many more questions, but this is all part of the process of learning. Don't be discouraged at the time it takes, just know that you are doing the best to provide protection for your loved ones. When you are feeling ready, call Lisa at the HCMA office and she will be able to answer questions in a more detailed manner specific to your mother and family. Best wishes, Linda

[Tracey]

Re: Cardiac Hypertrophy with Fibrosis

Thank you - each one of you - for your response. I will call today and appreciate the information.
My sister called me, I had not yet gotten the information to her. She has a very bad murmur and now her feet and ankles are swelling. She is 35. I am in a panic now over this. I want to be educated and know how to get our family help. Finding this site is the best information I have had yet.
Thank you for what you are doing!

[Lisa Salberg]

Re: Cardiac Hypertrophy with Fibrosis

This sounds to me like a case of HCM, but there are several other possible explainations. Although with your family history HCM sounds like the cause here.
Screen the family ASAP for more info see: http://www.4hcm.org/diagnosis/screening.php
If you have any questions please let me know.
I am very sorry to hear of your loss and hope that the information here has been of some help to you.

Best wishes,
Lisa

[Tracey]

Re: Cardiac Hypertrophy with Fibrosis

Lisa,
I have tried to get a full autopsy report from the Medical Examiners office and been unsuccessful. I have called to speak with the doctor that did the autopsy and left many voice mails. None have been returned.
I am very concerned with the possibility of it being HCM and what else it could possibly by but I can get anyone to explain it to me.
Do you have an idea of the other possibilities?
If I take my children in to get tested, how do I got about that? I have two 3 year olds and a 6.5 year old. Does it show up in 3 year olds?
Is there some directory of cardiologist that have knowledge of HCM so that I can find the right doctors? Can we all go to the same cardiologist or do my children need to go to a pediatric cardiologist that specializes or is knowledgeable about HCM?
In a major way I would rather not know and worry all the time. I know it is my responsibility to find out and that I need to. I feel responsible to contact all of our relatives but I want to be sure of what I am talking about.
My daughter (3 year old), has had 7 surgeries for two Venous Malformations on her tongue. This is a life threatening condition for a couple of reasons - she could bleed to death if it splits open and one dips into her throat and when it enlarges it cuts off her airway. Her twin brother has had fundo surgery for severe reflux. I believe it was unsuccessful and we are going to be revisiting the specialist soon. With all of this and severe ashtma for the 6.5 year old and the 3 year old girl twin. I can't imagine something else added to my plate medically with my children.
The loss of my mother is still very difficult for me and with that in mind I don't want them to lose me - and yet, technically they have. I am not the mother I used to be. I just can't really get it together yet. My husband is very supportive but he travels a lot and working in another activity - testing being that activity - makes me extremely tired just thinking about it.
With God all things are possible. I know I will make it through this but I wish I didn't have to.
Sorry for rambling...
Tracey

[Sarah]

Re: Cardiac Hypertrophy with Fibrosis

Dear Tracey,

Have _you_ been screened (echo, ecg)? You and all your siblings should be, just for peace of mind.

As for the kids, if they did have HCM, it may not show up till they are in their teens or twenties --or even later. However, most people who are diagnosed with HCM get their kids screened every 1-2 years from childhood to adulthood and every 5 years from the 30s on.

You can call the office at 973-983-7429 to find out which doctors are HCM specialists. Some will not see kids, some see only kids, and some see both. LIsa can help you find the best fit for your situation.

Keep after those autopsy people. Write a letter to the local paper/tv station letting them know you can't get vital medical info out the coroner's office (as is their duty) and see if that doesn't help.

I'm sorry the kids are beset with medical problems. It will make them stronger, more compassionate adults, so don't bemoan their fate. Kids are tough!

take care,

S

[Lisa Salberg]

Re: Cardiac Hypertrophy with Fibrosis

Tracey,
I would love to talk with you and give you some ideas as to what questions and tests you may need to have for the kids and yourself. On a personal note I would also like to chat about the reflux issue... I too have reflux and have to start looking into options there. So I am happy to give and get advice
I will be in the office on Tuesday please call me.

973-983-7429

Lisa

[Tracey]

Re: Cardiac Hypertrophy with Fibrosis

Sara,
Thank you for your reply. I needed a break from the HCM issue for a while and haven't visited the message board. I am sorry it took so long to reply.
I was tested with an echo and it came out negative for HCM. Since I posted, my sister has been tested positive for HCM and my mother's brother has tested positive for HCM.
I don't know whether or not I need to be tested again. Once it doesn't show up am I clear forever?
I will call the office soon to find out about doctors. I went to one my internist recommended. I never saw the cardiologist. My doctor's office just called me with the results.
God Bless,
Tracey Shuck

[Reenie]

Re: Cardiac Hypertrophy with Fibrosis

Tracey, you should be tested every 5 years as an adult if you screen clear. There are documented cases where HCM is diagnosed at a later age even when the patient has been screened consistently. You might want to think about seeing a cardiologist because some doctors sort of "skim over" echo reports and since HCM isn't a very well-known disease sometimes it can be overlooked when you're screened. Just my two cents worth.

Reenie

[Tracey]

Re: Cardiac Hypertrophy with Fibrosis

Thank you Reenie. I need to pass that information on to my mother's siblings and my brother as well. There are several that have screened clear of HCM at the present time. I worried that it wasn't a free ticket from that point.
I will make the appointment with the Cardiologist. I owe it to my children. I don't want them to lose me they way I lost my mother.
Thanks again & God Bless,
Tracey

[Reenie]

Re: Cardiac Hypertrophy with Fibrosis

Tracey, you're very welcome. And here's hoping you stay clear!

Reenie