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Pacemaker & ICDs: Introduce Yourself & Meet Others
Pacemaker & ICDs | Last Active: Aug 11 1:29pm | Replies (234)Comment receiving replies
Hello, I am a 57-year old female with HOCM. Was told I had heart issues in my 40's. Got a more definitive diagnosis at 50, but wasn't ready to try Camzyos. Covid hit and we moved to a different state. It took awhile to find a cardiologist. After I found one, I needed colo-rectal surgery, so that was a thing. I recently started focusing on heart appointments and now I am severe obstruction, so I started Camzyos 3 weeks ago, and I had a ICD put in on Friday, 5/22. I was very surprised by the ICD, and I don't think I was prepared at all. It has only been 4 days, but I am struggling a lot both physically and mentally. I am an active college professor who loves to travel. I am not at all impressed with my EP. I am wondering if patient care is not being taught in med school. Yikes! I am in an allied health field, so I know more that the average person about anatomy, health care systems, etc. This knowledge is not actually that helpful when it happens to you. I do have a visit to Mayo in Rochester scheduled for end of July. I am hopeful that I get better answers there. I appreciate hearing other people's perspectives.
Replies to "Hello, I am a 57-year old female with HOCM. Was told I had heart issues in..."
@thoma175, welcome. Great to hear that you will be going to Mayo Clinic, Rochester. I encourage you to join the discussions in the Hypertrophic Cardiomyopathy support group here: https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/
In the group, you'll meet @karukgirl @walkinggirl and many others who have been to Mayo Clinic, Rochester as well as others taking Camzyos.
Getting an ICD is emotional. Actually it sounds like you've been through a lot the past 7 years with confirmation of HOCM, colorectal surgery, Camzyos, ICD. No wonder this is having both a mental as well as physical impact. How would you describe how you're feeling about all this?
@thoma175 Hello! I see that Colleen has transferred your post to the Pacemaker & ICD discussion!
You have been through a lot medically and are ready to tackle the next challenge! I can identify with your statement "knowledge is not actually that helpful when it happens to you. " About a year after my septal myectomy, I wrote a 17-page essay, my cardiologist wanted to read it and said it was interesting to read about HCM and surgery from a patient's perspective.
You just acquired an ICD and yes, this is new and scary, you are now a bionic lady. Please give it time. I named mine Buddy and he/she became my constant companion after a septal myectomy; I never had "electrical" problems before, but they did develop about 2 weeks post-surgery. It was a great day when I met Buddy because the dizziness and giddiness from the arrythmias disappeared! My only regret is not being able to sleep on my stomach, and the one annoyance is the bra strap dilemma (sports bras work the best for me).
Now, you are going to Mayo in July! I love the statement by @jc76 "If you have an appointment with Mayo in Rochester you are going to one of the most renown medical institutions in the world." Here is the Mayo article in ICDs: https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/multimedia/implantable-cardioverter-defibrillator-icd/img-20007914
You may wish to read https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-clinic/overview/ovc-20442502 (Dr Schaff was my surgeon). In addition, you may place in your browser "Mayo Clinic HCM" to look at many other articles, some by Mayo Clinic and others from Connect if you wish. If you are not impressed with your EP, may I suggest you find a different one? If you live near Rochester, you may decide to receive all of your heart care there. We are all here to share our experiences, answer non-medical questions and to encourage you along in this journey.
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@thoma175
If you have an appointment with Mayo in Rochester you are going to one of the most renown medical institutions in the world. I have been going to Mayo Jacksonville since 2006.
I copied this from Microsoft Co-Pilot (A.I.) and you can see it mentions Mayo Rochester as specializing in treatment of it. I read it is hereditary is that correct? Again you are going to one of the best places to go and will see experienced and knowledgeable specialists. Gook Luck!
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Why it shows up often on Mayo Connect
HOCM is one of the conditions Mayo Clinic is known for treating, especially at Rochester and Jacksonville. Many members share experiences about:
Getting diagnosed
Managing symptoms
Deciding between medications vs. procedures
Genetic testing for family members