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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 28 11:57am | Replies (877)Comment receiving replies
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!
Replies to "Hi I am writing for my husband who was recently diagnosed with HCM. He is being..."
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.
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.
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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.