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?

@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.

Jump to this post

What’s your post myemectomy gradients.

Pliz detail me the details of cost

1. Echocardiography

2. Other relevant tests

3. Myomectomy procedure

REPLY
@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.

Jump to this post

Total for surgery, and all the tests. Had 2 echoes. A bit over 70 thousand. Which, both my husband and I thought was reasonable.

REPLY
@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!

Jump to this post

What do the gradient numbers mean?
What does a “pressure” after stress test mean? His was just under 400.
What should he not be doing between now and the next Dr. Appointment Oct 25th?
My husband was sort of in shock after the Stress MRI and didn’t get to ask more questions.
Now we have loads of questions. VA Drs are so busy.
We are leaving on a week long trip to South Carolina for Grandson’s Basic Training Graduation Oct 14th (driving).
Should we go?
Should we not walk up the bleachers?
What is “overdoing it” mean?

Also wondering if I can send whatever VA medical records I can download to a Doctor to get more answers. Or at least before a second opinion appointment.

Yesterday went to U of Minn for PET/CT scan of heart. Dr told hubby he will try to call him by Thursday of this week with results. We are hoping sooner. I know I sound a bit frantic but this is an odd situation with VA involved.

Thank you folks for whatever you can help me with.

REPLY

Hi @rmwundrow,

While we wait for other Connect members to join in, I’d encourage you to view to this information:
– Hypertrophic cardiomyopathy care at Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208

I’m certain that @cynaburst and others will return with some more insights. @rmwundrow, I realize that this is frightening and that you’re doing all that you can. We’re here to help.

REPLY
@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?

Jump to this post

Thanks so much for updating us, @fitchizumi. Mentor @cynaburst has often underlined the fact that “you would be best served to find a cardiac team that specializes in HCM.” I’m glad you are consulting a specialist. I wish you the best of luck, and do let us know of your progress, or if you have any questions.

REPLY
@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?

Jump to this post

When I wrote to you in June I could walk 1/2 to 3/4 of a mile. Now it’s about one city block and not every day.We still don’t understand what ejection fraction is or gradient. Could someone explain this to us I’m not good at reading the echoes.

REPLY
@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?

Jump to this post

Here is a link which explains ejection fraction: It is basically the force with which the heart pumps blood into the body. http://www.mayoclinic.org/ejection-fraction/expert-answers/faq-20058286

Gradient is the pressure gradient across the left ventricular outflow tract. It is measured in millimeters of mercury. If you picture a garden hose that is kinked, the force of the water is stronger near the kink. The same is true of the heart and blood. The obstruction causes an increase in the force of the blood flow through the mitral valve. http://www.4hcm.org/content.asp?contentid=154

REPLY
@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?

Jump to this post

Hi, thank you so much for the information it make sense now. Fitchizumi

REPLY

Hi @rmwundrow,

I just wanted to follow up and ask about your husband’s progress; how are you doing? We’d love to hear back from you.

REPLY
@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?

Jump to this post

Hi everyone, I want to see a specialist for HCM. He said since my echoes are all over the place I need to have an MRI.That Takes Pl., November 15th. He said he would call me with the results .I felt very comfortable .director of sports cardiology & HCM program ,
Director of cardiovascular imaging .So we will go from there. I feel so much better don’t seem to be as exhausted these past four days. I’m sure it’s psychological my best everyone I’m keeping you in my good thoughts and prayers .

REPLY
@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?

Jump to this post

I have some complications For a myectomy, SYRINGOMYELIA c-spine, affecting right trunk and extremities, five water filled cysts in my liver left lobe. I’m wondering if they would even consider me lots of nerve pain and diminished sensation.I’m very mobile so that’s no problem had problems since age 24 years. Any thoughts?

REPLY
@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?

Jump to this post

Hi @fitchizumi,

You might wish to see this post by Mentor @cynaburst, who recently attended the International Symposium on HCM where Dr. Joseph Dearani, Chief of Cardiac Surgery at Mayo Clinic, gave a presentation on myectomy:
https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/

REPLY

My name is Melinda. I am 60 years old. I was diagnosed with HOCM in 2004. Medication is no longer able to control the issues. I have Septal Myectomy date November 20th 2017. I had to put off my surgery because two years ago getting ready for heart surgery, breast cancer was discovered. After surgery and treatment for this, It was obvious way to much time had passed and now in the middle of cancer treatment, I have no choice left but surgery. I will survive the Cancer and I am hopeful with the heart surgery. So many issues are involved at one time has me concerned. The doctors are confident. They say this will improve my health so much that I will be shocked at how well I feel. That is encouraging to hear. Has anyone else gone through this surgery with a Mastectomy on the right side and how much did that impact the recovery as it appears from post here that upper body strength is great diminished from the heart surgery? I have almost 80% use on mastectomy side, limited range, but I still plow through daily house chores. I would rather deal with reality than be surprised and find out the recovery and pain issues are not what I expected. I need to plan for in home help I think? Thanks Melinda

REPLY
@cynaburst

Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one of the mentors here and got involved with Mayo Clinic and its HCM program when I traveled to Mayo over ten years ago now to have a myectomy. I was so impressed with the treatment I got at Mayo, and became so convinced of the importance of being treated at a specialty center, that since then I have worked to spread the word about how to live well with HCM. The most critical thing is, whether you need surgery, or medical treatment, or anything else related to HCM, having a team that is knowledgeable about HCM is so important.

As far as my HCM story, I have a long family history with HCM. I lost my grandfather, uncle and father to the disease. I have had an ICD for 14 years, and had a myectomy 10.5 years ago. I had my son knowing I had the disease and my father lived most of his life with the disease, so I have pretty much lived through or witnessed just about every stage of HCM. All of these experiences led me to create two blogs about my experiences with HCM and to help educate patients about it.

The first blog: http://www.cynthiassummeradventure.blogspot.com is about my myectomy experience at Mayo Clinic. At the time it served as a updating tool for my friends and family, but since then it has helped lots of folks learn what to expect as they prepare for myectomy.

I recently created http://www.HCMBeat.com which is a collection of resources about HCM as well as news of interest about the disease, new treatments, people living with the disease, etc.

Anyway, that is about it for me right now. Please join the conversation and tell us about you and your HCM story. We would love to hear about you and your own experiences. One thing that I have really learned while navigating HCM myself is that it makes such a difference to have others who have been there before to guide you along the way and help you feel less alone. Through my interactions with other patients, I had the strength to seek my myectomy surgery, I have learned about the disease and how to live best with it, and many other common sense tips that have made a huge difference in how I successfully live my life today.

I hope that this community will do the same for someone else so the word will continue to spread.

Welcome all, and I hope to hear more from you.

Cynthia

Jump to this post

Thank you Cynthia. I hope this group is still active.

REPLY
@mehlisue

My name is Melinda. I am 60 years old. I was diagnosed with HOCM in 2004. Medication is no longer able to control the issues. I have Septal Myectomy date November 20th 2017. I had to put off my surgery because two years ago getting ready for heart surgery, breast cancer was discovered. After surgery and treatment for this, It was obvious way to much time had passed and now in the middle of cancer treatment, I have no choice left but surgery. I will survive the Cancer and I am hopeful with the heart surgery. So many issues are involved at one time has me concerned. The doctors are confident. They say this will improve my health so much that I will be shocked at how well I feel. That is encouraging to hear. Has anyone else gone through this surgery with a Mastectomy on the right side and how much did that impact the recovery as it appears from post here that upper body strength is great diminished from the heart surgery? I have almost 80% use on mastectomy side, limited range, but I still plow through daily house chores. I would rather deal with reality than be surprised and find out the recovery and pain issues are not what I expected. I need to plan for in home help I think? Thanks Melinda

Jump to this post

Hi Melinda – I do know one person who had both breast cancer and a myectomy. I can ask her to weigh in here. As far as the recovery, I found that I was able to do much more than I expected. In fact, I was able to do fine on my own at home. I was able to walk around, make myself a sandwich, etc. It would be nice to have someone available to help if you need errands run, drugstore, etc. and just in case anything happens, but you won’t need anyone more than a friend or relative who checks in on your periodically.

REPLY
Please login or register to post a reply.