1. < Heart & Blood Health

Myocarditis

Posted by helena4000 @helena4000, Jun 9, 2019

Has anyone ever had Myocarditis? For three months now I've been treated for pericarditis only for the doctors to tell me in my most recent MRI scan they saw myocarditis. And they are telling me I have a scarred heart now. I wore a halter monitor for 2 weeks and they recorded arrhythmias. I go to this big famous academic medical center in Chicago, and it seems like they have no idea what to do about it. I have daily symptoms, and all my cardiologist is doing right now is tapering me down from medication I've been on for pericarditis and telling me I next need a PET scan. I had two CT scans within two weeks of each other, the amount of radiation I'm being exposed to is unbelievable. It is beyond frustrating. Every single day for three months I've been in pain and have had breathing trouble. I feel like nobody is listening to me at all.

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kylehop | @kylehop | Jun 10, 2019
In reply to @helena4000 "Thank you again! I've sent in a request for an appointment and mentioned a patient of..." + (show)
@helena4000

Thank you again! I've sent in a request for an appointment and mentioned a patient of his referred me. I hope that they get back to me. I can't express how much I appreciate your response. Were they able to figure out how you got it?

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And no thanks necessary. We’re all in this together. I’m happy I can be of service to somebody.

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kylehop | @kylehop | Jun 10, 2019
In reply to @JustinMcClanahan "I'd like to invite @helena4000, @maryd, @michelecallahan, @kylehop, @msunderland to this discussion as they have all..." + (show)
@JustinMcClanahan

I'd like to invite @helena4000, @maryd, @michelecallahan, @kylehop, @msunderland to this discussion as they have all discussed myocarditis in one form in the past on Connect. You may also find this video Q&A that took place on Connect in the past helpful, https://connect.mayoclinic.org/webinar/video-qa-about-myocarditis/. I am sorry to hear about your frustration with not getting the timely answers you are looking for. Have they discussed with you what the purpose of tapering you off of the pericarditis medications is for and what the plan for that is moving forward?

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@helena4000 @michelecallahan @JustinMcClanahan there are also two events coming up with the myocarditis foundation. One is in a few weeks in New York and the other in the fall in Philadelphia. You can find out more about these events on their website. I’ll be attending the Philadelphia event. It’s for myocarditis survivors. I believe Dr. Cooper may be in attendance also. He’s considered one of the world renowned specialists on the disease. It should be a very informative session with the panel of doctors etc. I encourage everybody to look into it and see if it’s something For them.

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michelecallahan | @michelecallahan | Jun 11, 2019

@kylehop, I am very fortunate to have Dr. Cooper as my cardiologist. He is the doctor that finally properly diagnosed my lymphocytic myocarditis. I am beyond blessed to see him on a regular basis, along with my transplant cardiologist. My husband and I had discussed going to the foundation event in NY this year, however if I am approved for transplant next week, traveling that far won't be an option. Thanks for the reminder, though. I'm going to look into it and find out if it's an option for me. THANKS!!

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michelecallahan | @michelecallahan | Jun 11, 2019

@helena4000, it was probably me that posted that I was able to get off the transplant list. I was listed in 2016 for about 9 months, but my heart improved with meds enough that they were able to take me off the list. Unfortunately, my heart function has significantly declined again, and I'm going back on the list. Not losing hope....there's still a chance it will improve again and the transplant won't be necessary yet. I think eventually it is inevitable, but I'm trying to postpone it as long as I can.

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kylehop | @kylehop | Jun 11, 2019
In reply to @michelecallahan "@kylehop, I am very fortunate to have Dr. Cooper as my cardiologist. He is the doctor..." + (show)
@michelecallahan

@kylehop, I am very fortunate to have Dr. Cooper as my cardiologist. He is the doctor that finally properly diagnosed my lymphocytic myocarditis. I am beyond blessed to see him on a regular basis, along with my transplant cardiologist. My husband and I had discussed going to the foundation event in NY this year, however if I am approved for transplant next week, traveling that far won't be an option. Thanks for the reminder, though. I'm going to look into it and find out if it's an option for me. THANKS!!

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Michele, that is great news. Good luck with the surgery. I'll be praying for a speedy recovery. I met a man while in the ICU who had literally gotten a heart transplant a few days prior and he was doing incredibly well and feeling great shortly after surgery. I hope the same for you too. Yes, you are blessed to have Dr. Cooper as your cardiologist. My team knows him and they all reach to him for advice and collaboration. Maybe you'll be well enough to travel to the Philly event with the Myocarditis foundation later this fall. I'll be thinking of you and praying for you!!!!

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pureprousa | @pureprousa | Sep 29, 2019

Is there anyone in this group have been diagnosed with pericarditis please I need help

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pureprousa | @pureprousa | Oct 10, 2019
In reply to @penn1023 "@helena4000 hope all is well." + (show)
@penn1023

@helena4000 hope all is well.

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Thank you Jesus for helping us on the route to recovery in God’s name thank you for asking

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