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[Obstructive HCM]
Author: Rachael (---.sympatico.ca)
Date: 04-16-02 22:52
I find your site very informative and have learned a great deal about HCM. I wish there was an office like this in Ontario. I have just found out my HCM is obstructive. Is that worse or the same HCM. I also get very low hemoglobin count in my blood which I need a transfusion for, so far they don't know why my blood count goes so low. I've had many scans and test. The next one will be a bone marrow sample. yuk! I was diagnosed with CHF 3 weeks ago - but with the tiredness and shortnes of breath from the anemia I don't know if I am feeling poorly from the CHF or anemia. What other symptons do I watch for with CHF other than the swollen ankles?
Thank you for your help
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[Re: Obstructive HCM]
Author: lisa (208.47.172.---)
Date: 04-17-02 10:05
Rachael,
HCM and HOCM or Hypertrophic Cardiomyopathy and Hypertrophic Obstructive Cardiomyopathy also known as Hypertrophic cardiomyopathy with obstruction are in fact the same disease with slightly different presentations.
Your case of low hemoglobin counts/anemia, is most likely not related to the HCM. The CHF, is most likely related to the HCM.
Watch your breathing, should you experience extreme shortness of breath call your doctor. Be cautious on your diretics make sure you are keeping your potassium levels up.
The shortness of breath is most likely related to your heart not your blood count.
We are happy to help our friends to the North...and we have many many members in Canada.... if you would like to have personal contacts with them please contact the office, get on our mailing list, you can then sign up on our "neworking program", at that time you will have access to the names of others interested in talking one on one with other members.
Best Wishes!
Lisa Salberg
President
HCMA
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[Re: Obstructive HCM]
Author: Yvette (---.70.ejourney.com)
Date: 04-18-02 06:34
Hello
My husband too has the Obstructive Hypertrophic. They said the obstruction was due to the back flow in the left chamber making a "back flow" effect with his mitral valve, in turn, sucking the mitral valve into one of the little chambers, so it made it work backwards in a way. When they removed part of his septum wall the mitral valve "flipped" forward. It isn't getting sucked in at this time, but it has only been three weeks. When we went to the cardiologist the other day I asked him if the wall could grow back, and he said yes, I was floored! He said my husband would always have this condition, and that we would have to keep an eye on it cuz he has diabetes and they are worried about heart disease. I hope all goes well with your unique condition.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Obstructive HCM]
Author: Sherry (---.ras11.floca.tii-dial.net)
Date: 04-18-02 19:07
Yvette,
Keep on top of your husbands symptoms. Keep in close contact with his cardiologist. Unfortunately the obstruction can grow back. My husband was diagnosed in April 2001, after I bugged his cardiologist to do a catherization. We were reffered to a specialist at Shands @ University of Florida. By May 28th, he underwent his 1st Alcohol Ablasion. It destroyed the obstruction, by causing two myocardial infarctions. He did well for five weeks. then there were little things that weren't right. He passed all the diagnostic tests and was released for light duty.
He passed out. They did an E.P. Study, Echo,and Tredmill Stress, he passed all of them. They then did a dobutimne Stress, which made him feel as if he was going to die! They were amazed to find the obstruction was back. But this time it was lying against the mitral valve instead of in the middle of the septal. All of his echo films and medical data was sent to a doctor in S. carolina the first week of Sept. two weeks later we learned that he had to have another attempt at Alcohol Ablasion or Open Heart Surgery. He would die within a few months if we didn't. Needless to say he had both. It has been rough, but he is stable at this time. I bug his doctors when I need to. It gets them moving faster.
Sherry
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Obstructive HCM]
Author: lisa (---.dyn.optonline.net)
Date: 04-19-02 08:20
Obstruction regrowth:
There have been a large number of patients with HCM w/ obstuction who have undergone Alcohol Ablation who have had "regrowth" occure, from days to weeks after the procedure. Many of our members have undergone as many as 4 attempts to remover the gradient/obstuction.
On the other hand, patients who have had myectomy rarely if ever experience "regrowth". If "regrowth" occures it is in the younger patients, who are still growing themselves.
REGARDLESS of the procedure, they DO NOT remove the disease, only a "symptom" of the disease, thereby reducing symptoms in many patients. An unfortunate misuderstanding from time to time is that with these procedures you are some how "cured" of HCM. You are not. Even though you may be feeling better it is still well advised to NOT push yourself to hard, just because you no longer get the chest pain or shortness of breath.
Any questions feel free to contact the office.
Lisa Salberg,
President
HCMA
Author: Rachael (---.sympatico.ca)
Date: 04-16-02 22:52
I find your site very informative and have learned a great deal about HCM. I wish there was an office like this in Ontario. I have just found out my HCM is obstructive. Is that worse or the same HCM. I also get very low hemoglobin count in my blood which I need a transfusion for, so far they don't know why my blood count goes so low. I've had many scans and test. The next one will be a bone marrow sample. yuk! I was diagnosed with CHF 3 weeks ago - but with the tiredness and shortnes of breath from the anemia I don't know if I am feeling poorly from the CHF or anemia. What other symptons do I watch for with CHF other than the swollen ankles?
Thank you for your help
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Obstructive HCM]
Author: lisa (208.47.172.---)
Date: 04-17-02 10:05
Rachael,
HCM and HOCM or Hypertrophic Cardiomyopathy and Hypertrophic Obstructive Cardiomyopathy also known as Hypertrophic cardiomyopathy with obstruction are in fact the same disease with slightly different presentations.
Your case of low hemoglobin counts/anemia, is most likely not related to the HCM. The CHF, is most likely related to the HCM.
Watch your breathing, should you experience extreme shortness of breath call your doctor. Be cautious on your diretics make sure you are keeping your potassium levels up.
The shortness of breath is most likely related to your heart not your blood count.
We are happy to help our friends to the North...and we have many many members in Canada.... if you would like to have personal contacts with them please contact the office, get on our mailing list, you can then sign up on our "neworking program", at that time you will have access to the names of others interested in talking one on one with other members.
Best Wishes!
Lisa Salberg
President
HCMA
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Obstructive HCM]
Author: Yvette (---.70.ejourney.com)
Date: 04-18-02 06:34
Hello
My husband too has the Obstructive Hypertrophic. They said the obstruction was due to the back flow in the left chamber making a "back flow" effect with his mitral valve, in turn, sucking the mitral valve into one of the little chambers, so it made it work backwards in a way. When they removed part of his septum wall the mitral valve "flipped" forward. It isn't getting sucked in at this time, but it has only been three weeks. When we went to the cardiologist the other day I asked him if the wall could grow back, and he said yes, I was floored! He said my husband would always have this condition, and that we would have to keep an eye on it cuz he has diabetes and they are worried about heart disease. I hope all goes well with your unique condition.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Obstructive HCM]
Author: Sherry (---.ras11.floca.tii-dial.net)
Date: 04-18-02 19:07
Yvette,
Keep on top of your husbands symptoms. Keep in close contact with his cardiologist. Unfortunately the obstruction can grow back. My husband was diagnosed in April 2001, after I bugged his cardiologist to do a catherization. We were reffered to a specialist at Shands @ University of Florida. By May 28th, he underwent his 1st Alcohol Ablasion. It destroyed the obstruction, by causing two myocardial infarctions. He did well for five weeks. then there were little things that weren't right. He passed all the diagnostic tests and was released for light duty.
He passed out. They did an E.P. Study, Echo,and Tredmill Stress, he passed all of them. They then did a dobutimne Stress, which made him feel as if he was going to die! They were amazed to find the obstruction was back. But this time it was lying against the mitral valve instead of in the middle of the septal. All of his echo films and medical data was sent to a doctor in S. carolina the first week of Sept. two weeks later we learned that he had to have another attempt at Alcohol Ablasion or Open Heart Surgery. He would die within a few months if we didn't. Needless to say he had both. It has been rough, but he is stable at this time. I bug his doctors when I need to. It gets them moving faster.
Sherry
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Obstructive HCM]
Author: lisa (---.dyn.optonline.net)
Date: 04-19-02 08:20
Obstruction regrowth:
There have been a large number of patients with HCM w/ obstuction who have undergone Alcohol Ablation who have had "regrowth" occure, from days to weeks after the procedure. Many of our members have undergone as many as 4 attempts to remover the gradient/obstuction.
On the other hand, patients who have had myectomy rarely if ever experience "regrowth". If "regrowth" occures it is in the younger patients, who are still growing themselves.
REGARDLESS of the procedure, they DO NOT remove the disease, only a "symptom" of the disease, thereby reducing symptoms in many patients. An unfortunate misuderstanding from time to time is that with these procedures you are some how "cured" of HCM. You are not. Even though you may be feeling better it is still well advised to NOT push yourself to hard, just because you no longer get the chest pain or shortness of breath.
Any questions feel free to contact the office.
Lisa Salberg,
President
HCMA