HCM-ers: Introduce yourself or just say hi

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect – a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

I am a patient of HOCM. I want carry out my treatment at mayo clinic menisota US. I am from Pakistan and serving as officer in Government organization . My Government is ready to bear my finances but they require cost estimate for Septal myemectomy and Septal alcohol ablation.
Pliz provide me the same in both cases.

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Hello @zargul,

Welcome to Connect. Thank you for introducing yourself to this group.

If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online.
The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

International patients can request an appointment at any Mayo Clinic location online, here: http://www.mayoclinic.org/departments-centers/international/appointments
A representative from one of Mayo’s international appointment offices will respond to your request within three business days.

For information about billing and insurance, you can go online, http://www.mayoclinic.org/departments-centers/international/financial-services
Or call International Finance at 507-284-5063
507-538-7878 (fax)

I’m also tagging one of our Mentors, @cynaburst, as she may be able to provide some insight about the procedures.

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Hi @zargul – I received your private message and see your inquiry above. Though I do not yet know who you should contact, I am working on getting you a contact. You would do very well to travel to Mayo Clinic in Rochester if you are able. They are one of the best places in the world for treatment of HCM.

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@cynaburst

Hi @zargul – I received your private message and see your inquiry above. Though I do not yet know who you should contact, I am working on getting you a contact. You would do very well to travel to Mayo Clinic in Rochester if you are able. They are one of the best places in the world for treatment of HCM.

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Madem.
I am eager to know about cost estimate of alcohol septal ablation. So that i come to Rochester, with adequate financing .

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@cynaburst

Hi @zargul – I received your private message and see your inquiry above. Though I do not yet know who you should contact, I am working on getting you a contact. You would do very well to travel to Mayo Clinic in Rochester if you are able. They are one of the best places in the world for treatment of HCM.

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@zargul:

Below is all of the information necessary for communicating with the International Patients department of Mayo Clinic Rochester, MN.

You should contact them via email at: Intl.mcr@mayo.edu

or telephone or FAX:

507-284-8884
507-538-7802 (Fax)
Office hours: 7 a.m. to 5 p.m. (Central time) Monday through Friday

If you contact them in writing, you should also include this information:

-the patient’s name as it appears on the passport (last, first, middle)
-patient’s gender
-patient’s address
-patient’s date of birth
-direct patient telephone number
-direct patient fax number
-patient’s email address (if available)

-a brief explanation of the current medical problem (in English) – (In this instance, you can just tell them that you are seeking a complete workup for Hypertrophic Cardiomyopathy, including septal reduction for obstructive HCM. When you ask for the cost estimate, make sure that they include amounts for both testing and myectomy and/or ablation. They will not know which one you are best suited for until after you have undergone testing and examination.)

-the preferred date of appointment
-whether the patient will need an interpreter, and if so, what language

This link has any further information you need.
http://www.mayoclinic.org/departments-centers/international/appointments?_ga=2.214253719.1680916319.1503113066-939790657.1471053992@
Wishing you all the best. Mayo is one of the best places in the world for HCM treatment. you won’t be sorry.

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I am a patient of HOCM.
I am from Pakistan Islamabad.

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@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I’m sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

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Hi @fitchizumi,

I hope you are keeping well. Have you been to the cardiologist for a follow-up?

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@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I’m sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

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Hi, Seen my local cardiologist he keeps saying I'm fine. Got a copy of his info about me after my January visit. It's "there's a dynamic left ventricular outflow obstruction" she definitely has hypertrophic cardiomyopathy with asymmetric septal hypertrophy. My husband and I decided we're going to get hooked up with someone from a center of excellence. In November I go to Lehigh Valley Hospital PA to see a specialist in HCM.my local cardiologist probably will not enjoy this but that's the way it is. I asked him two months ago if he knew a center of excellence he said I don't know what you mean. Then I asked if He ever had to send a patient ,for examples ,a my ectomy.he said two to Abington Hospital in is 31 year career. Hopefully he will except our decision to see a specialist and he will work with him. My cardiologist said I'm not ready for any kind of invasive treatment This past Friday I had PVCs extremely strong .the nurse practitioner finally got to me and thought it was caused by a combination of my G.I. problems ,possible drop in potassium. Thank you for asking, I think if everybody in the group and keep everyone in my prayers. I'll let everyone know what the specialist says thanks again.

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@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I’m sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

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PS I'm having a colonoscopy on the 11th of this month to see what's going on there.Fitchizumi

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@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I’m sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

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Hello,. I made my own.appointment with a Dr. Schaff, the surgeon. I was advised by my endro to see my cardiologist, because my thyroid condition was up to the max level. I happen to run across a mayo webinar, of my Icd, doctor/ genetic testing, and Dr.Schaff. I then called and made an appointment for a surgery consult. Whala!!! . Hade the surgery January 9th, of this year. A miraculous recovery, and no looking back. So thankful that I am not shy about advocating for myself. Energy level had tripled, my whole outlook is better. One of the key factors in my decision to go ahead with the surgery was insurance was great, and I was still healthy enough to withstand a major surgery.

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Hi I am writing for my husband who was recently diagnosed with HCM. He is being seen at the Minn MN VA clinic and his last test was a stress echo. 120 pressures at rest and almost 400 at stress. Dr was present for test and talked at length with him as he described HCM and what the valves are doing. Overwhelmed! After reading much on the HCMA website I saw the link to the closest Dr who has experience in HCM and was happy how close a specialist in HCM really is to us. BTW we live in Wisconsin about 150 miles from VA and not sure how far from Rochester. Our heads are spinning. My husband also was recently diagnosed with Sarcoid, so tomorrow we are on our way to University of Minn Research for a PET/CT scan of his heart to rule out Sarcoidosis in his heart. Next appointment at the VA is Oct 25th for an Angiogram and mapping. He has had numerous other tests and we are getting weary. I would love to have a 2nd opinion and not even sure the VA Dr is considering. I asked my husband today to start thinking about getting a 2nd opinion and he said his is so tired of more Dr appointments he can’t really think through that right now. Anyway, he also has ischemic heart disease (1 stent), pre-diabetic and has had 3 ablations over a number of years for Atrial Fibrillation. Again…..overwhelming. Just needed to talk to some folks who are in the same boat with us. Prayers are welcome. Thank you!

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@rmwundrow

Hi I am writing for my husband who was recently diagnosed with HCM. He is being seen at the Minn MN VA clinic and his last test was a stress echo. 120 pressures at rest and almost 400 at stress. Dr was present for test and talked at length with him as he described HCM and what the valves are doing. Overwhelmed! After reading much on the HCMA website I saw the link to the closest Dr who has experience in HCM and was happy how close a specialist in HCM really is to us. BTW we live in Wisconsin about 150 miles from VA and not sure how far from Rochester. Our heads are spinning. My husband also was recently diagnosed with Sarcoid, so tomorrow we are on our way to University of Minn Research for a PET/CT scan of his heart to rule out Sarcoidosis in his heart. Next appointment at the VA is Oct 25th for an Angiogram and mapping. He has had numerous other tests and we are getting weary. I would love to have a 2nd opinion and not even sure the VA Dr is considering. I asked my husband today to start thinking about getting a 2nd opinion and he said his is so tired of more Dr appointments he can’t really think through that right now. Anyway, he also has ischemic heart disease (1 stent), pre-diabetic and has had 3 ablations over a number of years for Atrial Fibrillation. Again…..overwhelming. Just needed to talk to some folks who are in the same boat with us. Prayers are welcome. Thank you!

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Welcome to Connect, @rmwundrow
I moved your message to the introductions discussion thread of the HCM group so that you can meet others who know what you and your husband are facing. Please let me introduce you to a few others like @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @FrancineFafard @lisa7 @janicepike @mistymopps3 @choochoo @lisab62 @debcrawford

It is definitely overwhelming to absorb all the information you’re getting and the battery of tests. You must have many questions. Feel free to ask us anything. We’re listening.

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@rmwundrow

Hi I am writing for my husband who was recently diagnosed with HCM. He is being seen at the Minn MN VA clinic and his last test was a stress echo. 120 pressures at rest and almost 400 at stress. Dr was present for test and talked at length with him as he described HCM and what the valves are doing. Overwhelmed! After reading much on the HCMA website I saw the link to the closest Dr who has experience in HCM and was happy how close a specialist in HCM really is to us. BTW we live in Wisconsin about 150 miles from VA and not sure how far from Rochester. Our heads are spinning. My husband also was recently diagnosed with Sarcoid, so tomorrow we are on our way to University of Minn Research for a PET/CT scan of his heart to rule out Sarcoidosis in his heart. Next appointment at the VA is Oct 25th for an Angiogram and mapping. He has had numerous other tests and we are getting weary. I would love to have a 2nd opinion and not even sure the VA Dr is considering. I asked my husband today to start thinking about getting a 2nd opinion and he said his is so tired of more Dr appointments he can’t really think through that right now. Anyway, he also has ischemic heart disease (1 stent), pre-diabetic and has had 3 ablations over a number of years for Atrial Fibrillation. Again…..overwhelming. Just needed to talk to some folks who are in the same boat with us. Prayers are welcome. Thank you!

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Welcome. I understand how overwhelming it is. I had a good diagnosis of HCM, but questioned the treatment plan so I went to Mayo for a second opinion. I have never looked back. They were thorough, they were compassionate and, most importantly, they know their stuff. HCM is a difficult disease because it behaves differently in every person who has it. Mayo has the knowledge, the equipment and the personnel to give you what you need. Like I said, I never looked back.

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You are very lucky to live near one of the best centers for HCM care in the world. If you are able, you could have all necessary testing done at Mayo and forego all the traveling. All of these other conditions could be related to what they are calling HCM. It seems like it would make sense to have it all looked at at once by the same place.

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@colleenyoung

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I’m tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

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Thanks for the invite. I underwent a septal myectomy two years ago and am feeling well after the procedure. I work at Mayo in communications, but even though I work here, have to say the experience prior, during and after has been amazing. I can be a local resource for you if you are ever in Rochester, MN. Thanks

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