Myocarditis

Posted by helena4000 @helena4000, Sun, Jun 9 10:01am

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.

Liked by Leonard

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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No, the cardiologist just said that because they didn't find pericarditis in my most recent MRI scan, I am to taper off the pericarditis medication for the next month, but he didn't prescribe anything to manage myocarditis symptoms, which I still have. I'm very confused and scared. I think I am going to try to get a second opinion from another cardiologist. I have been in pain and have had breathing problems for 3 months now, and I feel like everything has been completely mismanaged by my doctors.

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@helena4000

No, the cardiologist just said that because they didn't find pericarditis in my most recent MRI scan, I am to taper off the pericarditis medication for the next month, but he didn't prescribe anything to manage myocarditis symptoms, which I still have. I'm very confused and scared. I think I am going to try to get a second opinion from another cardiologist. I have been in pain and have had breathing problems for 3 months now, and I feel like everything has been completely mismanaged by my doctors.

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@helena4000 @JustinMcClanahan
Hi Helena, I am a adult female Giant Cell Myocarditis survivor and live in the Chicagoland area. I credit the Advanced Heart failure team at the University of Chicago Medicine for saving my life. I was literally dying at another hospital in the area (they were ill equipt to handle a myocarditis case) and transferred to U of C in the nick of time. Unfortunately, I don't believe many doctors know how to treat Myocarditis. I'd be happy to recommend Dr. Gene Kim to you as he is the cardiologist I see on a routine basis. Dr. Uriel oversaw my care when I was in the ICU. There are drug therapies that can help reduce inflammation. There are additional tests you can have too to understand how well your heart is pumping (ejection fraction numbers) that are important to know too. Eat blueberries and spinach as they are high on antioxidants which help manage free radicals from radiation. I know you're scared, I get it. My first step would be to change doctors and hospitals. Let me know how else I can help.

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Hi. I have been diagnosed with lymphocytic myocarditis (through a heart biopsy). Medication wise, I'm taking Tacralomis (prograf) for the myocarditis (1mg 2x day). My understanding is that the myocarditis has caused heart failure. I'm taking metoprolol, losartan, spironolactone, bumex for the heart failure. I'm currently being evaluated for heart transplant at Mayo Jacksonville. I'm searching for anyone else that has been diagnosed with lymphocytic myocarditis to communicate with. My understanding is that it's caused by an auto-immune disease (my immune system "attacks" my heart).

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@kylehop

@helena4000 @JustinMcClanahan
Hi Helena, I am a adult female Giant Cell Myocarditis survivor and live in the Chicagoland area. I credit the Advanced Heart failure team at the University of Chicago Medicine for saving my life. I was literally dying at another hospital in the area (they were ill equipt to handle a myocarditis case) and transferred to U of C in the nick of time. Unfortunately, I don't believe many doctors know how to treat Myocarditis. I'd be happy to recommend Dr. Gene Kim to you as he is the cardiologist I see on a routine basis. Dr. Uriel oversaw my care when I was in the ICU. There are drug therapies that can help reduce inflammation. There are additional tests you can have too to understand how well your heart is pumping (ejection fraction numbers) that are important to know too. Eat blueberries and spinach as they are high on antioxidants which help manage free radicals from radiation. I know you're scared, I get it. My first step would be to change doctors and hospitals. Let me know how else I can help.

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Thank you SO much. I am very grateful. Is this the correct person? https://www.uchicagomedicine.org/find-a-physician/physician/gene-kim

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@michelecallahan

Hi. I have been diagnosed with lymphocytic myocarditis (through a heart biopsy). Medication wise, I'm taking Tacralomis (prograf) for the myocarditis (1mg 2x day). My understanding is that the myocarditis has caused heart failure. I'm taking metoprolol, losartan, spironolactone, bumex for the heart failure. I'm currently being evaluated for heart transplant at Mayo Jacksonville. I'm searching for anyone else that has been diagnosed with lymphocytic myocarditis to communicate with. My understanding is that it's caused by an auto-immune disease (my immune system "attacks" my heart).

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I'm so sorry you are going through this and having to have a transplant. I'll keep an eye out. I thought I had encountered someone somewhere else who had actually improved to the point of getting off the transplant list. I will see if I can find it again.

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@helena4000

Thank you SO much. I am very grateful. Is this the correct person? https://www.uchicagomedicine.org/find-a-physician/physician/gene-kim

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Yep! That’s my doc. I love him!!!

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@michelecallahan

Hi. I have been diagnosed with lymphocytic myocarditis (through a heart biopsy). Medication wise, I'm taking Tacralomis (prograf) for the myocarditis (1mg 2x day). My understanding is that the myocarditis has caused heart failure. I'm taking metoprolol, losartan, spironolactone, bumex for the heart failure. I'm currently being evaluated for heart transplant at Mayo Jacksonville. I'm searching for anyone else that has been diagnosed with lymphocytic myocarditis to communicate with. My understanding is that it's caused by an auto-immune disease (my immune system "attacks" my heart).

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My condition, giant cell myocarditis, is also an auto immune response. Just like you, my own immune system attacked my heart. I was on the transplant list when I was in the ICU, but my heart made of recovery and I I have survived without a transplant. I was on a very similar regimen of medication. How else can I help?

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@kylehop

Yep! That’s my doc. I love him!!!

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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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I simply caught a virus. It can be triggered by a lot of different things. I know a myocarditis survivors who got it from a reaction to vaccinations she needed before traveling to Africa .

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@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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@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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@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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@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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@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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