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kalel
@kalel

Posts: 2
Joined: Feb 08, 2018

Constrictive Pericarditis

Posted by @kalel, Feb 18, 2018

Hello, I would like to learn if anyone here has or had Constrictive Pericarditis. What are the treatments, which doctor in Mayo clinic you recommend?

REPLY

Hello @kalel, and welcome to Connect. Fellow members @gopsillyv2 @loublarney @healingheart @michellec78 @bubba1977 have written about constrictive pericarditis a while ago, and I sincerely hope they will return to this discussion and share their experiences.

I'd also like to invite @vermontrob @sadie_jane @sbrooks1986 to join us and share their insights about pericarditis.

Here's more information, including a link about pericarditis care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/pericarditis/symptoms-causes/syc-20352510

Mayo Clinic is a leader in clinical research in the diagnosis and management of pericardial diseases, and the "Pericardial Disease Clinic" at Mayo Clinic's campus in Minnesota has been the leader in developing the international consortium for pericardial disease. You can read more details here:
https://www.mayoclinic.org/departments-centers/cardiovascular-medicine/overview/specialty-groups/pericardial-disease-clinic/overview
If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments.

@kalel, when were you diagnosed with constrictive pericarditis?

Hello group, I wanted to be available to all of you to share my story and be of value/resource to the group. CP is an uncommon condition and not that you can find many resources about. I developed this condition after none-symptomatic pneumonia, and the symptoms I was having were perceived by my doctor as anxiety and chronic fatigue. It took me doing research on CFS that lead me to request my doctor to do a stress test in the heart and that the technician was not able to do because she found something there. 8 months after it took to discover the constrictive pericarditis and by that time the water had calcified. I visited 5 different cardiologists and all agree with the diagnoses, but out of this five 2 help me doubt that surgery was my only option. Although it was very scary and I having a limited life, I changed my diet to low inflammation diet and took many natural remedies. I would have flares and many times sore throats a will debilitate me and was living with the fear of surgery until I finally was able to visit a Mayo specialist that finally gave me the green light to have a normal life and to continue with my healthy eating protocol. Although I have to keep a check on keeping my immune system up good, I can say I am much better and moving forward with no surgery. So do not believe cardiologist because they are not surgeons, always look for a specialist on this type of conditions.

Hi @kalel,

Thank you so much for sharing your insights. You may notice that I merged your message about constrictive pericarditis with your previous discussion so that you could reconnect with the tagged members who joined that discussion.

I'm also glad to hear that the low inflammation diet helped, and you are feeling much better – it must have taken a lot of resilience to change and take care of your own health! I'd like to invite @larsona10 @jackj, to join in with their experiences; they've have also attributed their health to diet changes. @kalel would you be able to share more about this diet?

I am trying to recover from my second episode of constructive effusive Pericarditis. The doctor is your best bet to explain the possible medication options because all of us have different health historys, allergies, etc..

I was given my cardiologists after my discharge from the MAYO for treatment

@kalel

Hello group, I wanted to be available to all of you to share my story and be of value/resource to the group. CP is an uncommon condition and not that you can find many resources about. I developed this condition after none-symptomatic pneumonia, and the symptoms I was having were perceived by my doctor as anxiety and chronic fatigue. It took me doing research on CFS that lead me to request my doctor to do a stress test in the heart and that the technician was not able to do because she found something there. 8 months after it took to discover the constrictive pericarditis and by that time the water had calcified. I visited 5 different cardiologists and all agree with the diagnoses, but out of this five 2 help me doubt that surgery was my only option. Although it was very scary and I having a limited life, I changed my diet to low inflammation diet and took many natural remedies. I would have flares and many times sore throats a will debilitate me and was living with the fear of surgery until I finally was able to visit a Mayo specialist that finally gave me the green light to have a normal life and to continue with my healthy eating protocol. Although I have to keep a check on keeping my immune system up good, I can say I am much better and moving forward with no surgery. So do not believe cardiologist because they are not surgeons, always look for a specialist on this type of conditions.

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I would enjoy picking your brain about low inflammation diet? Also, did you have idiopathic CP? So you did not have the pericardectomy? Also, had your CP been linked to an auto-immune disease? What do you mean by keeping your immune system up?

Im sorry for all the questions! Thank you for any suggestions or help you can offer

Hello @nanakris99,

Welcome to Connect, and thank you for sharing a bit about yourself – and especially for some great questions! May I ask if you would share how you are progressing with your recovery?

@kalel

Hello group, I wanted to be available to all of you to share my story and be of value/resource to the group. CP is an uncommon condition and not that you can find many resources about. I developed this condition after none-symptomatic pneumonia, and the symptoms I was having were perceived by my doctor as anxiety and chronic fatigue. It took me doing research on CFS that lead me to request my doctor to do a stress test in the heart and that the technician was not able to do because she found something there. 8 months after it took to discover the constrictive pericarditis and by that time the water had calcified. I visited 5 different cardiologists and all agree with the diagnoses, but out of this five 2 help me doubt that surgery was my only option. Although it was very scary and I having a limited life, I changed my diet to low inflammation diet and took many natural remedies. I would have flares and many times sore throats a will debilitate me and was living with the fear of surgery until I finally was able to visit a Mayo specialist that finally gave me the green light to have a normal life and to continue with my healthy eating protocol. Although I have to keep a check on keeping my immune system up good, I can say I am much better and moving forward with no surgery. So do not believe cardiologist because they are not surgeons, always look for a specialist on this type of conditions.

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Hello Kalel. Your story is very interesting. I'm very happy to hear that that you are better and do not need surgery. I would love to hear about the name of the test that led to your diagnosis, the specific symptoms your had, the low inflammation diet and the natural remedies that you used. Why did the technician stop your stress test? Was it a "stress echo?" or a "nuclear stress test?". How was the "non-symptomatic pneumonia" discovered? I look forward to your post. Thank you!

Has anyone been diagnosed with chronic pericarditis? If so, can you share your symptoms?

@seaspray

Has anyone been diagnosed with chronic pericarditis? If so, can you share your symptoms?

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Hi @seaspray, I moved your message about pericarditis to this existing discussion in the Heart Health group so that you can meet others like @nanakris99 @maryd @kalel. If you click VIEW & REPLY in the email notification, you can read through the past messages and post any questions you may have.

@seaspray

Has anyone been diagnosed with chronic pericarditis? If so, can you share your symptoms?

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Thank you Colleen!

What is this?

@chads33

Hi I will beging with a little back story.

At age 15 i was told i had a collapsed lung partial 60%. At which time it came back on its own over a couple days 2 months later i thought i had the same issue. However i was then told i had pericarditis. At ehich time i was given a special stereriod to treat it. By age 18 nearly 3 years later pericarditis again was given antibiotics and steriods to treat it. Year later this return same treatement by 22 nothing for nearly 3 years this then cam back same treatemebt however tha pain stayed daily after this between 22 and 27 i have had confirmed pericarditis a number of 6 times.

The pain never goes away just managable. I have been through ecos as well as heart tracing bo damages ekgs non stop as well. I am turning 28 doon i am dizzy thirsty all yhe time but everything keeps coming back normal. Does anyone know what to think or qhat to do ? My blood type is ab and i was reading heart disease is higher i this blood type could it be something simple causing such a bad reoccurence of this awful issue ?

P.s. apologize for any typos typing on old broken phone

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I am so sorry you have to be going through this. It really is awful! Chronic chest pain is not easy to cope with, and especially when the reason you have pericarditis cannot be determined. I also have recurrent pericarditis, which progressed in frequency so for 3ish years every time I have stopped treatment the chest pain would return. I spent hours and hours searching for "why" this is happening to me, only to not find much…idiopathic pericarditis just doesn't have a reason. I feel fortunate I have a cardiologist who has a focus in pericardial disease who worked with me to customize a plan based on my history of recurrence, moving from being reactive when I have symptoms to proactive to prevent them. I now stay on colchicine since that seems to work well for me to control recurrence, and have a plan for next steps should the current management stop working and I flare again. Good luck finding something that works for you!

Hi I will beging with a little back story.

At age 15 i was told i had a collapsed lung partial 60%. At which time it came back on its own over a couple days 2 months later i thought i had the same issue. However i was then told i had pericarditis. At ehich time i was given a special stereriod to treat it. By age 18 nearly 3 years later pericarditis again was given antibiotics and steriods to treat it. Year later this return same treatement by 22 nothing for nearly 3 years this then cam back same treatemebt however tha pain stayed daily after this between 22 and 27 i have had confirmed pericarditis a number of 6 times.

The pain never goes away just managable. I have been through ecos as well as heart tracing bo damages ekgs non stop as well. I am turning 28 doon i am dizzy thirsty all yhe time but everything keeps coming back normal. Does anyone know what to think or qhat to do ? My blood type is ab and i was reading heart disease is higher i this blood type could it be something simple causing such a bad reoccurence of this awful issue ?

P.s. apologize for any typos typing on old broken phone

Hi @chads33 and @khth,

I moved both your messages about pericarditis to this existing discussion so that you can meet others like @nanakris99 @maryd @seaspray @kalel. If you click VIEW & REPLY in the email notification, you can read through the past messages and post any questions you may have. I’m also tagging @vermontrob @sadie_jane @sbrooks1986 so that they may be able to join in with their insights about pericarditis.

I came across some studies about two new drugs that show encouraging results with regard to recurrent pericarditis; the new medications anakinra, an interleukin 1 Beta recombinant receptor antagonist, and canakinumab, another interleukin receptor blocker. The medication works by changing the way the immune system responds to triggers.
– Long-Term Efficacy of Interleukin-1 Receptor Antagonist (Anakinra) in Corticosteroid-Dependent and Colchicine-Resistant Recurrent Pericarditis https://www.jpeds.com/article/S0022-3476(14)00093-6/fulltext
– A Review of Interleukin-1 in Heart Disease: Where Do We Stand Today? https://link.springer.com/article/10.1007/s40119-018-0104-3

I was wondering if you’ve heard about these treatments?

@colleenyoung

Hi @seaspray, I moved your message about pericarditis to this existing discussion in the Heart Health group so that you can meet others like @nanakris99 @maryd @kalel. If you click VIEW & REPLY in the email notification, you can read through the past messages and post any questions you may have.

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Thank you Colleen for thinking of me! As it turned out, I was misdiagnosed all along. I had a nodule in the subcarinal lymph node that was pressing on my heart and esophagus. Went for a 2nd opinion, had a biopsy done and was given radiation. I was all better within days and the nodule remains resolved.

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