One thing about writing my book and attempting to keep up on my blog is that people have reached out to me because they stumbled across my name when researching fibrosing mediastinitis. And while I have had quite a few private messages over the last couple of years from people all over the world either diagnosed with fm, or have a loved one diagnosed…some of the most recent messages have left me feeling sad and frustrated that there are still doctors providing no hope for those newly diagnosed with this disease.
And my heart aches because I have been there and understand how devastating the initial diagnosis can be!! I started researching fm again, trying to compile a blog filled with encouraging educational materials and current studies…but (not really to my surprise) there is still limited information and definitely not much encouraging news when trying to research this illness.
For those of you who are angry, scared, discouraged, isolated and overwhelmed by your new diagnosis…we have all been there!! Almost all of us diagnosed with fibrosing mediastinitis…have had our breath knocked out of us as we got our diagnosis. We have sat in that chair face to face with one doctor or 10 doctors who looked at us with sympathy in their eyes trying to explain what this disease is, worse yet, struggled to say anything positive about the prognosis and treatments that simply resulted in…”I’m sorry…this is a terrible disease, there is nothing more we can do. I’m sorry.”
So, I am doing something else that will maybe provide some encouragement to those of you who just had the life as you know it, pulled out from underneath your feet. I went to the best resource I know on the internet…my fm support group!! And I asked them to share a little bit of their story because a lot of them have been given little information as well! While living with this disease definitely is not easy and has made everyday life more challenging, so many of us are still fighting!!
I copied the stories as written so these are personal opinions and experiences in regard to fm…and due to the pure honesty from this great group of people I have gotten to know throughout the years…some stories may be difficult to read. BUT, they also show strength, determination, perseverance, appreciation and hope! This group will always be there to listen, educate, love, pray and support!! And if anyone wants to join the group or if one particular story hits closer to home for you let me know and I can get you connected. Any of these people would love to reach out and help in any way that they can!
I have attached quite a few stories but I do hope you will take the time to read all of them as this is how we raise awareness!! And a special thank you to my wonderful fm family for taking the time to comment as well as letting me share your stories!💕
Penny– I was diagnosed with FM on September 25, 2006. Doctors gave me 7 years. I was told that I needed to be getting my affairs in order and that they had done all that they could do. Today marks 11 years! 🙏🏼🙌🏻🙏🏼
Monica– I was diagnosed in march of 2015 I took sporonox and prednisone. I had the masses intertwined in the arteries of my heart and it was inoperable. They told me it didn’t look good. These medications shrunk the masses in my chest from fm . Mine come from histoplasmosis from inhalation of bat feces from attic. I am cured now. The medications worked. I lost some right lung function but no longer require oxygen.
Brenda– I was diagnosed in 1997. At first they thought I had cancer. It was like a very bad dream. When they assumed the diagnosis as Histo related FM, I took my Doc’s advice and kept on living as normal a life as possible. It hasn’t been easy but I am still here!!!!! I get 10% oxygen from left lung and 90% from right lung. I just had a CT Scan and can post it if anyone is interested. The original Doc. who diagnosed it did not want to ever “open me up” or go in to see, he said he didn’t want to let any oxygen into my chest (which might disturb and help the FM grow). My new Doc wanted to go in (he said he wanted to rule out cancer lol). Since 1997 my growth which has occluded my left pulmonary artery has tripled. My heart has slightly shifted. My right PA is clear, but I do have some calcification in the bottom of right lung. They are now watching and I get regular CT scans. It has been really hard for me most of the time living with the horrible disease, but I live each day the best that I can, and count all my blessings. Love to you all
Trish– I got my actual correct diagnosis in August 2016. I unfortunately had the wrong diagnosis for 15 years. I lost all function in my right lung, left lung is good! This disease is scary and mind-boggling but also let’s you know how tough you are!!!!
Tara– I had my first issues and thoracotomy in 2007 and the surgeon told my husband that he had no idea what was going on and I would probably be dead in a few weeks. I wasn’t correctly diagnosed for several years later. My current doctors, who are amazing, do not give me any timeframes. I’ve lost all function in my left lung but do pretty well unless I overdo it.
Elvin– I was diagnosed in October of 2014 and like Monica mine is around my arteries of my heart and aorta. I have been treated with prednisone and Rituximab and also I have been placed five stents in my arteries of my heart. The treatment shrunk the mass a little and now it’s just stable. Right now I’m able to exercise (cardio) daily for at least 30 minutes and keeps me going with my battle of this disease.
Dana– My husband was diagnosed in oct 2014. His left lung doesn’t have much function left but his right is clear. Dr Lloyd told him that he should be fine as long as it doesn’t progress to the right. So no time frame. He said it was a rare slim chance it would spread over to the right lung but that it could. So far so good!
Kimberli– I first started feeling sick in 2010. The doctors that I was being sent to thought I had lymphoma. I wasn’t diagnosed with FM until April of this year. I have some calcification in my lungs and numerous CT scans. I’ve had stent placement and feel so much better. I haven’t been started on any medication as of yet and haven’t been given a prognosis.
Danielle– My first mass was found 7 years ago, September 16, 2010, I was then tested for cancer and a number of other things, it was an abnormally large unknown mass at this point and from this point on I had to undergo ct scans with contrast every three months, 2012 I had gotten fed up with being a “test tube “ being watched for change and learning purposes and also 4 biopsy surgeries later, so I called and got an appointment at Mayo Clinic in Rochester, mn, waited two months for the appt and finally October of 2012 I got in and the doctor diagnosed me with fm, and told me to just live my life I was fine, (looking back I am unsure how much he really knew about fm) July 2013 I called the blood donation center asking if I could donate blood while having fm, much to my surprise they said “absolutely not, this is a LIFE THREATENING DISEASE” well this was a game changer, so immediately I called the University of minnesota, I learned there was in fact a doctor there that had specialized in this disease and had an appointment available 3 months out, I took it and got in October 2013 another biopsy surgery and a bunch more blood tests and other tests later, we found 1 more abnormally large mass, and 3 other small masses, totaling in 5 masses of various sizes. Two that press in my aortic arch and trachea, the other 3 in random places. I went in for short check ups every 6 months with minimal changes until October 2015when it was decided that the progress has gone “dormant “ and we will just do a check up every October. Now this all being said through all of this I have not been back in just about 2 years because I am afraid of getting bad news, maybe I am dumb for this, I don’t know, I have been told there is no fixing fm, so if it is not fixable why get the bad news vs just being able to live my life with a constant smile and loving every second of it? I have since gotten a will and life insurance all squared away so my son will be okay. Long term effects I have developed
-I cannot run around , climb stairs or hills, like a normal person without getting light headed, dizzy and extremely winded, this has gotten slowly worse and worse over the year. – joint problems (specialist told me this can be a side effect of the disease) not sure if it’s true or not, but this also has gotten worse. -random spells of chest pain more frequent as time goes – 2 autoimmune diseases that is believed to branch off FM
There is my FM story 🙂 Officially diagnosed October of 2012 and never given a you have ___ years to live…..Instead I have learned to appreciate everything as it comes, good or bad and I don’t let things bring me down or dwell on them… I live every day like it’s my last and wouldn’t have it any other way
Melissa– Started showing symptoms around 2003 had all kinds of test done still nothing. Changed primary Dr and the one I have now sent me to Vanderbilt. Finally got a diagnosis in 2006. After having 8 stents in my SVC still going just have to keep watch on my symptoms.
Tiffany– No one ever gave me an expiration date. If they would have I would’ve said🖕.
Holly– Diagnosed FM in 1990’s, but symptoms of SVC syndrome due to post histo began in 1974. My pediatrician even questioned FM in her hospital report, but back then no one did CT Scans. Around 1991, I had a car accident and after a chest xray I was referred to a pulmonologist who ordered the CT Scan which answered my mystery veins and symptoms. No one gave me time limits. I was 12 when I was exposed (chicken coop/farm) and 14 when symptoms began. The only thing my pragmatic thoracic surgeon said to me was, “Live your life to the fullest and as best you can.” And, “I am more worried about the calcification involving your esophagus, because one day it will erode and you will bleed out.” I am now almost 57 years old. I live and adjust to symptoms and believe my time is completely in God’s Hands. All in all, it has been a 45 year battle. And I’ve had seven children!
Suzanne– Mass found in 2008. SVC fully blocked by then. Like a lot here, cancer had to be ruled out. Drs afraid to open chest due to triggering it to grow. FM dx came in 2012. Due to position of mass I cannot be stented. Mass is growing but slowly. Gets a little closer to the right pulmonary artery every year. Last year it was close to touching, so this year who knows. No “timeframe” given as it’s such an unstable and unpredictable disease. It could stay slow or flare up from what I’m told.
Carol– I was diagnosed in September of 08 I went to Jefferson Hospital and they did get the diagnosis right but sent me to Mayo Clinic for a second opinion and if Mayo could do anything for me. It has been very difficult . Mayo Clinic said I would have about 7 years and said don’t let anyone do surgery or I would be dead in a year, seems like if you do anything it is a dangerous operation . My FM just went active within the last two months , I had a bad fall that broke my 4th rib and I have more opacities in my lung which were not there before. Feeling fragile but everyone says how wonderful I look,,,,,”Just Great” nobody thinks I am sick. My right lung does not function I have Superior vena cava obstruction my SVC does not function at all. Well love you all, be well and yes don’t go overboard. You will hurt yourself. In extreme pain as well.
Teresa– Over 10 years for me. Luckily mine has not advanced since diagnosis. A Dr said I had a moderate case. Daily pain that I live with but not severe. Right lung is mostly non-functional and I get short of breathe easily but no oxygen use. Heart works harder to compensate but no heart problems.
Kj– I was diagnosed in 2010 and kept having drs tell me there was nothing more. I finally went to Mayo in Rochester MN in 2013 and they have been helping me since. I have Dr Carmona Pequira and Dr Megan Dulohary. Both wonderful doctors. I have a stent put in and then my lung respected by them
Persi– I was diagnosed in 1984 with FM at the age of 21, they didn’t really know a lot back then about FM so couldn’t really give me a prognosis just that there was no cure ……if u have any questions feel free to message me 🙂
Christina– I was diagnosed in October of 2016 after being hospitalized for multiple pulmonary embolisms. The cough I was experiencing didn’t get better after being treated with blood thinners for my PE. Further testing revealed a mass in my right lung and because of a very persistent pulmonary specialist, Dr. Wittmer, he diagnosed me and sent me to Dr. Baker at the University of Iowa hospital for a second opinion. They have a tumor board there, which consists of multiple surgeons, and they are studying my case as I get more scans, which was every 3 months. I go back in October for another scan. No lung function lost yet….fingers crossed!
Elisabeth– I was diagnosed in April Of 2015. They felt I most likely had it for 10 years at that point. Initially I was told I had cancer due to the large mass around my carotid artery. Biopsies proved it to be Fm. I had fairly severe SVC syndrome. I have also lost function of my top right lobe of my lung. They will try to catch it as it goes into the middle Lobe and stent, so I can keep function.This month marks 2 years since I received my stents. They have made all the difference in the worlds for me. I am extremely active with weight lifting and lots of cardio. I refuse to go down easy:) I do get short of breath easy, but have learned to just go with it. Dr Loyd told me that due to my age and the progression and it only being in the top of my lung so far, that I should have a normal life expectancy. But time will tell. Until then I just keep living!
Terry– I was diagnosed with FM, in May of 2011. I have a completely block SVC, the left upper pulmonary vein is gone. Only 20 percent of my left lung still works. And I have fibrosis in several organs. They gave me less than 18 months. But I’m still here.:-)
Cindy-I was diagnosed with FM in 2014 at Mayo in Jax. I was originally misdiagnosed with Wegner’s Granulomatosis in 1972 which can also be in the lungs and is autoimmune. I could see the calcifications on Chest Xray as far back as 2000 but was told that was normal. In 2013 I had a bronchoscopy where the doc tried to stretch my bronch. What happened was scar tissue formed and along came the calcification almost immediately. I could barely breathe for well over six months and it took 3 months to get O2. I saw a rheumy that didn’t think I had Wegener’s and suggested I go to a teaching hospital. I went to Mayo in Jax about 3 months after the bronch. They ran all the usual tests and told me I had FM. Dr. Loyd confirmed it within a couple of months. That’s when I learned there wasn’t much you could do for it. The bronch and subsequent calcification of the right bronch caused loss of function of my lower and mid right lung. I’m still on O2 because the shortness of breath is still with me and exertion like walking shoots my pulse to about 115 where resting is now 80-85. I’m in relatively decent health but have diabetes and high blood pressure. I feel fairly well most of the time but do tire easily. I’ve just gone into remission with major depressive disorder with the help of medication. So I’ve basically had this since 1972. I’m now 65 so I should continue on for as long as the good Lord wants me here. Because FM grows on scar tissue I will NEVER have another bronch or lung surgery. I feel blessed to be where I am. 🙂
Erin– I was officially diagnosed with “Fibrosing Mediastinitis with multiple pulmonary obstructions” at Mayo last September after about 4 years of being sick with no solid answers. I had severe recurrent lung infections requiring multiple hospitalizations, strong IV antibiotics and prednisone (My Dr S in Spfd worked hard to keep me chugging along), severe persistent asthma (uncontrolled), coughing blood, lots of pain and breathing issues and low oxygen levels. I had no blood flow from left upper lobe to heart. They recommended a lobectomy since it had progressed so far and had so many collateral veins (stents were not an option for me). Did lobectomy via thoracotomy at Mayo in under 2 months of diagnosis. Removed upper left lobe and 9 lynphnodes. They never really talked about life expectancy and I didn’t really ask. I do have other spots in other lobes, but Dr D and Dr P at Mayo believe those spots are dormant right now. I hope and pray they stay that way. I now only have to go once a year for scans unless I have specific symptoms.
Nita-Diagnosed in 1988, at the age of 35, I was told to go home & get my affairs in order, because most people die before they are 40. The surgeon who discovered my disease (during an attempt to bypass the right pulmonary artery) had only seen one case of FM/MY ever. I contacted the top ten medical centers in the nation for a referral, & they recommended James E. Loud, M.D., at VUMC, Nashville, TN as the leading authority. I saw Dr. Loyd in the fall of 1988, & it changed my life. He assured me that although this is a life threatening disease, it isn’t necessarily a death sentence. I learned he had patients who had survived & thrived decades after diagnosis. Now, at 64, I am thankful to be a 29 year survivor Although diagnosed in 1988, Dr. Loyd suspects the problems I usually started more than a decade before that, as I had symptoms for years, & it takes several years for the disease to progress. My disease has remained stable for the most part, for the past 10-15 years. The damage that was done cannot be reversed, but I am alive! Every birthday is a celebration of life. Even the chest pain & deep, constant & sometimes disabling pain behind the right scapula is a reminder that I am a survivor. I only have to see Dr. Loyd every 5 years now, unless there are new symptoms. I last saw him a year ago.
Kimberly-I was diagnosed in 2004. I was never given a time limit and I never wanted one. I will go on living life like it is. FM kicks my butt some days but as long as I get up everyday I’m going to keep doing me. I’ve been on oxygen since 2009 and lasiks n aspirin for 2 yrs. Have been giving 2 treatments of rutaximib n it has helped. I only have my lower left lobe left.I have stents placed in my left lung and that’s pretty much it.
Yvette– I was diagnosed in December 2013. Prognosis was 6 months. It will be 4 years this December. God is the only one that knows how long we have. Enjoy every day! ❤️
So there you have it. These are just a few of the amazing people in my fm group! They are full of fight and strength and each of their stories provide great comfort to me knowing I am not in this alone! They truly can relate to what I am going through!
Yes, we still have extremely difficult days and in fact I will be going back to Iowa City next week to evaluate some continued symptoms I just can’t seem to shake. Life is definitely harder than it used to be with this disease, but at the same time…life is so much more beautiful💕
Always find something in every day to smile about! And if today you are struggling…maybe this will make you laugh. I couldn’t resist sharing due to the two conditions mentioned!! I seriously crack up over this every time I read it…maybe I’m tired!! I did make sure my hubby was okay with me posting this but he really didn’t get it anyway!😜