If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

cleveland dr & defibrillators,

Collapse

About the Author

Collapse

HCMA FORUM ARCHIVE Find out more about HCMA FORUM ARCHIVE
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • cleveland dr & defibrillators,

    [cleveland dr & defibrillators,]

    Author: Pat H (---.proxy.aol.com)

    Date: 12-11-02 20:08

    I had a syncopal episode on Nov 15; I ended up in the hospital until Nov 18.

    Refused the EP study and went home to contact Lisa. With her help, Dr. Lever and I talked on Nov 22. He was not available the following week so I was worked into Dr. Asher schedule. I spent Thursday Dec 5 in Cleveland completing tests. I had been diagnosed with HCM 5 years ago, with a gradient of 1.4. Then that Dr left the MI area. Since then I have had 3 cardiologist telling me I didn’t have HCM. Dr. Asher confirmed the HCM and stated I had a gradient of 2.2 when we talked. I forgot half the questions I wanted to ask. Dr. Ascher conferred with Dr. Wilkoff and stated I needed to have a defibrillator. (Yes, Lisa you were right).. We will be staying in the guest house from Dec 18 until Dec 21. We will have a discussion with Dr. Wilkoff on Dec 19. Then the defibrillator will be implanted Dec 20. by Dr. Saliba with an overnight stay in the hospital. This seems a short time to me. I’m having a problem putting my mind around all of this in such a short time frame. But hope I’m in great hands. Please share information about the Drs. and the procedure. Will I have a problem traveling 6 hours home of the 21st?

    Also had my 85-year-old mother taken to a hospital in FL yesterday with chest pains. Could not get the DR. to confirm HCM but the echo show she had it 2 years ago. Trying to get her Dr. in FL to confer with Cleveland. Sorry this is so long but needed to talk to people who understand the things I dealing with.

    Been trying to read all the e-mails on the HCMA site but there have been too many to keep up with.

    Pat H

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Charlie (61.208.178.---)

    Date: 12-11-02 23:20

    Today's the first day I've looked at this list, so I'm probably going to repeat what's previously been mentioned.

    You claim there is some dispute over whether you have HCM or not.

    My understanding is you can get the definitive answer through bloodwork that looks for a specific gene. If you have the gene, you have it, if you don't, you don't. Irregardless of echocardiograms, etc.

    I have the gene.

    Regards,

    Charlie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 12-12-02 04:01

    Dear Charlie,

    Thanks for speaking to the genetics issue.

    You may not be familiar with Drs Asher and Lever. They are two of the foremost HCM experts in the US and if they say it is HCM, then it is 99% HCM (I leave room only because they are human, thus fallible).

    Also, while it is true that HCM is genetic, there is no way to go into a doctor's office and say "I want the HCM test." and have it done. I'm curious as to know how you know you have an HCM gene. The other problem is that there is not 1 HCM gene, but 10 and then there are mutations on those, too.

    Dr. Christine Seidman of Brigham & Young is doing the only HCM genetic study right now, and Lisa can put you in touch with her if you want to be in the study. However, it may take 5 years to find anything out and even then, it may not be definitive.

    The bottom line is that the person and the condition need to be treated and not the gene, because we can't do anything else yet ----yet.

    take care,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 12-12-02 04:02

    Dear Pat,

    Please read the "living with an ICD post" by Scott that is a few weeks old. Lots of ICD experiences in there.

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Mary Sharp (---.net252.fl.sprint-hsd.net)

    Date: 12-12-02 04:09

    I don't believe they have found all of the genes for HCM. There are also times when HCM is caused by a viral infection. That is what my cardiologist originaly thought but did some research and it runs in the family. There are also some docs that believe that if you don't have obstruction you don't have HCM (NOT TRUE). I'm betting that if Cleavland said you have HCM than you probably do. As far as the ICD surgury overnight is typical. I did end up staying an extra night because I didn't respond well to the anestesia. I flew from Boston to Florida three days after I was released. If you are driving the bumps in the road really hurt the days after the surgery. All in all it was not that bad the benefits really outweigh the aches and pains. Hope this helps!

    Mary S.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-12-02 06:22

    Time out...

    A genetic test to rule out HCM is not available -

    a. we do not know all the genes yet.

    b. only a few labs can do the work.

    c. Yes Harvard is doing a large study but several others are ongoing including one at the Mayo Clinic.

    d. the reference of your gradient being 1.4 or 2.2 - I think you are refereing to your septal measurment not gradient - a gradient would be measured in "mm" such as 30mm or 60mm.

    e. HCM is not caused by a virus - it is genetic - while true we do not know why the gene expresses itself in some and not others but it is genetic.

    f. Pat your in great hands.

    oh yes one more thing a normal septal measurement (adult) is 1.1 maybe 1.2 - anything between 1.3 and 1.5 is looked at for other causes (high blood pressure normally) if no other cause is there it is likely HCM - measurments over 1.5 are definitive HCM.

    hope it helped..

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Charlie (61.208.178.---)

    Date: 12-12-02 09:59

    Dear Sarah,

    Thanks for the information.

    You wrote:

    "Dr. Christine Seidman of Brigham & Young is doing the only HCM genetic study right now, and Lisa can put you in touch with her if you want to be in the study. However, it may take 5 years to find anything out and even then, it may not be definitive"

    ////

    Maybe 10 years ago, when Dr. Seidman was at Harvard, she and Dr. Traill (Johns Hopkins) started a study on my family. I have 14 brothers and sisters and exactly 50% have HCM.

    I had my children tested for the gene (or is it genes? I didn't delve deep enough into the conversations and study). Two children were done on-site at Johns Hopkins. One other had her blood sent overnight (something about a "purple top" blood test??). All three lacked the gene.

    My sister had no symptoms so she was declared HCM-free. But then, Dr. Traill found the gene in her blood and told her the bad news. A closer look proved Dr. Traill's diagnosis to be accurate.

    So, perhaps the phrase from Ms. Salberg:

    "A genetic test to rule out HCM is not available" might be modified to read:

    "A genetic test to rule out HCM is not widely available" or "An approved genetic test to rule out HCM is not available".

    Or perhaps Ms. Salberg is correct and it is still too early to say without reservation that the tests my family received were accurate. But empirically speaking, I believe they were accurate.

    Great forum. Thanks to all who are involved in providing this great resource.

    Regards,

    Charlie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-12-02 10:15

    Dear Charlie,

    Lisa is not saying that the tests are inaccurate at all. What the "Circulation" article says is that determing what gene you have doesn't make any difference in your treatment or your prognosis. Some genes were once considered "worse" than others, but this new evidence shows that there are exceptions to every "rule" about the different genetic mutations. The genetic tests to determine if you have HCM are accurate, but they are not available to the general public and are not used to determine treatment.

    I should have said that Dr. Seidman is the only study I know of actively taking new participants. Lisa's explanation is the more accurate.

    Your family's case was very, very special. Actually, my family was recruited by Harvard ten years ago, too, (we are also at 50%) but nobody ran our tests overnight or in person. Also, if you are in the Seidman study now, they are not turning the tests around in that time frame as I believe they are mapping the entire genome.

    Take care,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-12-02 10:16

    well, not the WHOLE genome, I think they are doing more than just looking at the "top ten" --am I right about that Lisa?

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-12-02 11:09

    Charlie - I stand corrected... genetic test can rule out if someone in the family has HCM and it can also detirmine if someone has the gene - -at this point it is very possible to have the gene and not the disease.

    However, the test is not widely available and therefore can not be used in the general public to screen for HCM. Further, of the genes that have been found and the 150+ mutations of these genes...many more genes are yet to be discovered - so this means if you screen clear for all the "known" mutations...you still may have an unknown gene mutation.

    Dr. Siedman is still at Harvard - and the lab is doing wonderful work, we thank them all for there efforts!

    Sarah - Other centers are doing genetic screenings - however Harvard is the only one at this time that is actively recruiting new participants for an HCM genetics study - outside of there own center.

    Charlie - I am not sure we have "spoken" before... welcome to the board, I like your well thought out postings. Thanks for clearing up what I meant to say

    Best to all!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Charlie (---.okinawa.ocn.ne.jp)

    Date: 12-12-02 15:48

    Lisa,

    Yes, I am new to the board. Thanks for the welcome.

    And thanks for the valuable explanation about the myriad genes and mutations.

    Regards,

    Charlie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-12-02 16:06

    Charlie - I hope to see you often!

    Best wishes,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Bryan (---.bos.east.verizon.net)

    Date: 12-12-02 16:42

    Lisa,

    I was wondering if you would be able to give me the number to Dr. Siedmans office or how I would be able to get the information on the study she did on my family

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 12-12-02 20:02

    Bryan,

    E-mail the HCMA office with "genetic testing" in the subject line and include all of your contact info letting them know you want more info.

    Take care,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: Pat H (---.proxy.aol.com)

    Date: 12-12-02 20:16

    Got some great information from the Living with an ICD 1 and Part 2. Thanks for referring me to the sites. I will be able to ask informed questions at the Dr. visit. Yes, the reference should have been septal instead of gradient. Thanks for cleaning that up for me. Dr. Asher stated that I should not drive until after I had the ICD. I’m going to ask “how long after” at the visit. I knew that Dr. Asher and Dr. Lever were some of the top HCM doctors in the country. But I did not know anything about Dr. Wilkoff or Dr. Saliba. The information that I read on the Cleveland Clinic website also states that they are tops in the field. After all the misinformation I have received from my hometown doctors, I glad that the Drs I’m dealing with now are tops in their fields. It is nice to have trust in the doctors you are working with. I should not have to known more about HCM then the doctor that were treating me. Guess too many of them feel that they are too busy to research or have time to contact the doctors that understand this condition.

    The doctor treating my Mom in FL has decided she does not have HCM and may have sent her home today. My sister tried to get him to confer with one of the Drs in Cleveland, but he wouldn’t do that. I got the number for the Cleveland Clinic that is in FL. and hope to have her work with the Drs. there. I don’t know where else to send her in FL. She is in the Zephyrhills area. If anyone knows a good DR that understands HCM around that area let me know.

    Thanks again to all that have posted.

    Pat H

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: mark (---.proxy.aol.com)

    Date: 12-15-02 18:32

    pat and to all it may concern Dr. Asher & Dr.Lever are by far the best in the field on hcm feb 21st will be 2yrs i had a septal alabation done by Dr.Tezcu my obstruction was very bad and they cleared me of that leaving me with life again granted i cant do the things i was accustomed throughout my life i ended up with heart block afterwords and a dual pacemaker was put in yes i have good and bad days as we all do but you by far have the best in cleveland by the way i see the docs feb4th for my 2yr. check good luck to all of us !!!!!!!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: cleveland dr & defibrillators,]

    Author: john jordan (---.public.lawson.webtv.net)

    Date: 12-16-02 07:13

    pat, i had myectomy and two bypasses on july 15th. i saw dr. asher was my dr. at ccf. he was very excellent and helped me before the surgery and during my stay in ccf. the drs. at ccf. are excellent as is the support staff.good luck, john
    NOTE: This is a post from the previous forum message board.

Today's Birthdays

Collapse

Working...
X