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Hi! I'm Kerry. I was first diagnosed in January of this year. I was referred to Mayo (Rochester) by my cardiologist to rule out cardiac sarcoidosis. My EF is 33% on the left and 74% on the right. The sarcoidosis turned out to be Non-Hodgkins Lymphoma. I also have stage 2 chronic kidney disease and at the end of July I discovered I have 6 large, deep ulcers with H. Pylori infection. I've been reading several of the questions and comments and look forward to learning more about living with this disease. Unfortunately my insurance won't allow me to continue my treatment and care with Mayo so I have to get acquainted with a new cardiologist (Sept 2). It's been a little overwhelming to learn so much at once, but I've been through that before...and before internet...when my daughter was diagnosed with a brain tumor when she was 6 yrs old. I was much younger then and ready to help her fight for her life back then. As her caregiver for 33 years, I've grown tired and older. I'm well educated but sometimes I feel like my brain is paralyzed and I just can't think clearly. I struggle with simple paperwork tasks and remembering things. It is a lot to adjust to. For me, the hardest 2 things are my inability to think clearly and the physical limitations, especially with the heat of the summer. So anyway, that's just plain me!

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Replies to "Hi! I'm Kerry. I was first diagnosed in January of this year. I was referred to..."

Kerry, I'm glad you found this Mayo Clinic Connect site, where you can learn much. I recommend you check out and consider joining the HCM Association (www.4hcm.org), a patient education and advocacy organization. Among many other services, they may be able to help you navigate insurance issues.

You mention your concern about thinking clearly, but I have to say you put together a succinct and clear summary of your situation in your post.

In addition to a mutual support group like this site, do you have a close friend or relative (or two) to help you sort through and process the wealth of information available regarding your various medical conditions?

We are all different. I have found that people are often eager to help, which is heartening, but sometimes their well-intentioned advice may simply be off the mark. Ultimately I have appreciated others' persoectives, but I have found I need to keep my own counsel, informed mostly, of course, by trusted medical advisors (backed up by second opinions where appropriate).

Good luck continuing to learn about and address your various medical issues.