Fibrosing mediastinitis

Posted by tiss @tiss, Apr 17, 2019

Has anyone heard of this terrible lung disorder? My daughter’s life partner died from this January 11, 2019. He was only 35. It’s so devastating.

@msvicki

Does anyone have Fibrosing Mediastinitis?

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Yes I have FM which now my pulmonary vein have been blocked due to it only one remains open

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@loveme88

Yes I have FM which now my pulmonary vein have been blocked due to it only one remains open

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@loveme88
Please meet @ notallwhowanderarelost and @msvicki. Welcome to Mayo Clinic Connect. Good morning, I'm glad that you found us. Are you terrible uncomfortable? How long ago were you diagnosed? Are there any treatments planned to open one of the pulmonary veins?

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i have pain in my chest often and trouble to breathe at times. it's been about 2-3 years I had a stent put in before 3 months later it had close they tried to reopen it ut that didn't work now they say its nothing they can do about It currently have just one pulmonary vein open

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@loveme88

i have pain in my chest often and trouble to breathe at times. it's been about 2-3 years I had a stent put in before 3 months later it had close they tried to reopen it ut that didn't work now they say its nothing they can do about It currently have just one pulmonary vein open

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@loveme88– have you seeked out a second opinion?

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no, I really don't know where to start its been a lot on me I'm just now fully understanding what going on with my health my sister gave me a number for the mayo clinic to give to my doctor and she said she called them but I never heard back so I'm going to try again this week

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@loveme88 – Good for your sister about recommending Mayo for a second opinion. I find that waiting for doctors to call after 2-3 days is long enough and then I call. With so many people in an office now things are bound to be misplaced, forgotten or tossed away by mistake. Let me know what response you get from your own doctor please?

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@msvicki

Does anyone have Fibrosing Mediastinitis?

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I do, I was diagnosed in December after having an infarction of the lung in October. Very curious to meet others who have this disease and possibly find some connections as to how we developed it. I have Lyme Disease and Babesia since 1993, wondering if anyone else has this as well?
Also wondering about the continueing pain, and fatigue….does this sound familiar?

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@tiss

Matt was diagnosed with this disorder when he was 22. Apparently he had had a histoplasmosis infection in years prior without ever knowing. He had a tremendous immune response in his lungs which they found out after a bicycle accident which resulted in a broken collar bone. The xrays showed lesions that were at first thought to be lung cancer. After seeing several doctors, it was determined he had FM. He didn't have symptoms at the time but 2 years later , at age 24, did have to have a stent put in the vena cava due to the scar tissue occluding it. Matt always had troubles with a cough, allergies, upper respiratory problems. All the pulmonologists, allergists told him this coughing was not due to his FM but asthma and allergies. To be fair, I doubt that any of his doctors had ever seen FM. It is very rare and extremely rare to have the most serious form, which we know now matt did have. I don't know why he was never sent to a specialist. January 2nd if this year, Matt started coughing up blood– copious amounts. He was rushed to the ER and an embolisation was attempted a few days later and put into a medically induced coma. But due to the extreme scarring in his lungs, the bleeding stopped for only a few hours. 5 days later, they attempted to remove the right lung, which they felt was where the bleeding was coming from. However, after only an hour in surgery, the thoracic surgeon told us that it was not possible to remove either lung. He said he had never seen such extensive scar tissue in lungs and it was rock hard and basically the lungs were rock hard. It was also determined that his Vera cava was again closed however due to the scar tissue and blood vessels that had grown in and around the scar tissue, it could not have a stent put back in to open it. After 10 days he had lost so much blood through his bleeding lungs that they gave him blood transfusions which caused everything to start shutting down– kidneys, blood pressure, heart, treatment . After 10 days of hell, our boy died of catastrophic organ failure. He had just turned 35 a week before. We are all heartbroken and his parents are beyond broken. Matt was their only child. My daughter is 31 and her world has turned upside down. She's in grief counseling and has her family and many, many friends. It is going to take a long, long time to work through this. Thanks for listening.

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I am so sorry for everyone's loss, such a tragic thing to happen.

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@juy77

I do, I was diagnosed in December after having an infarction of the lung in October. Very curious to meet others who have this disease and possibly find some connections as to how we developed it. I have Lyme Disease and Babesia since 1993, wondering if anyone else has this as well?
Also wondering about the continueing pain, and fatigue….does this sound familiar?

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Hi. I have this disease. Excellent researchers at Vanderbilt believe one explanation for the disease is a body’s uniquely poor reaction to histoplasmosis, which is very common. For us, the body’s immune response kicks in and doesn’t shut off. I’ve had multiple lung stents to address the effects of the fibrosing. Hope this helps.

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@juy77

I do, I was diagnosed in December after having an infarction of the lung in October. Very curious to meet others who have this disease and possibly find some connections as to how we developed it. I have Lyme Disease and Babesia since 1993, wondering if anyone else has this as well?
Also wondering about the continueing pain, and fatigue….does this sound familiar?

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@juy77– Welcome to Mayo Clinic Connect. I am the mentor for the Lung Health Group. Although I have never had a lung infarction I do understand that it is very painful. I have experienced a lot of pain from 2 lobe resections. It is my understanding, from what you have said that you were diagnosed with Fibrosing mediastinitis in October. Have your doctors discussed why you had an infarction?

@jdjj– I would also like to welcome you back to Mayo Clinic Connect. I see that this is your first post to this group. I am wondering how you found the research at Vanderbilt. How long have you had this?

Will you share some of your tips and methods that you use to help keep yourself comfortable?

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Hi. How long? I received the diagnosis two years ago, but it appears I've been living this encroaching fibrosing for a decade or longer though was only now feeling the effects. I live in the Nashville area and was fortunate — to say the least — to have a pulmonologist who trained under a Vanderbilt researcher (recently retired) who had been studying this disease for many years. He referred me to this doctor, one of his mentors, who was able to confirm the diagnosis, which led to the stenting.

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@merpreb

@juy77– Welcome to Mayo Clinic Connect. I am the mentor for the Lung Health Group. Although I have never had a lung infarction I do understand that it is very painful. I have experienced a lot of pain from 2 lobe resections. It is my understanding, from what you have said that you were diagnosed with Fibrosing mediastinitis in October. Have your doctors discussed why you had an infarction?

@jdjj– I would also like to welcome you back to Mayo Clinic Connect. I see that this is your first post to this group. I am wondering how you found the research at Vanderbilt. How long have you had this?

Will you share some of your tips and methods that you use to help keep yourself comfortable?

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Thank you, no one is really sure why the infarction happened, perhaps the pressure built up on one side of the artery that is being crushed and blew through is the thought.
No one seems to have an idea as to how long this has been growing, I had been having what I thought was rib pain for at least a year and half, also a cough for 6 months which I thought was allergies. I am usually fatigued and run low grade fevers with the Lyme Disease and Babesia anyway so never felt anything else was going on. I also have MTHFR, and wonder about the Genetic immune system connection.

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