This is my video journal of what it's been like for me since being diagnosed with Idiopathic Bronchiolitis Obliterans.
The first photo is over a year old, but every other photo in the first half of the video was taken within less than weeks of becoming sick with the rest showing the rapid decline since then of my health and how the side effects of all the medications have taken their toll on my body.
I realize many people must take these medications for many reasons and I am not alone in having to deal with these issues. But, as has always been the case with my Blog, this is about my personal journey through my illness and raising awareness. Since realizing how little is known about Bronchiolitis Obliterans, again I am determined to put a "Face" on it and try to raise awareness.
So, this is "The Face of Bronchiolitis Obliterans" - MY journey since being diagnosed.
The first photo is over a year old, but every other photo in the first half of the video was taken within less than weeks of becoming sick with the rest showing the rapid decline since then of my health and how the side effects of all the medications have taken their toll on my body.
I realize many people must take these medications for many reasons and I am not alone in having to deal with these issues. But, as has always been the case with my Blog, this is about my personal journey through my illness and raising awareness. Since realizing how little is known about Bronchiolitis Obliterans, again I am determined to put a "Face" on it and try to raise awareness.
So, this is "The Face of Bronchiolitis Obliterans" - MY journey since being diagnosed.
Catherine, I am so sorry!! I had no idea you were having these problems. I need to be on here more to keep up better and read more of your blogs. I am devastated for you. The video made me cry. I hope that you feel better very quickly and God will heal you and take away your medical struggles. I can't imagine having problems with my lungs with the constant coughing while battling IC!!! Doesn't it make your pelvic pain so much worse when you cough? Bless your sweet soul. Please know you are in my prayers and my family's as well.
ReplyDeleteLauren; Thank you for your well wishes. YES, needless to say my bladder is NOT happy but that is the least of my concerns these days. Thank you for your prayers; I need all I can get!
DeleteThank you for sharing your journey with BO.
DeleteHow long have you been diagnosed, and did you have to have a lung biopsy for diagnosis?
Any improvement in symptoms with Prednisone? (I had to laugh when you called Prednisone the medicine so you can never sleep!) How true!
Any treatments that helped? Any tips on how to manage with low energy and O2 levels?
Happy to share. I was diagnosed via multiple tests but the key one for me was a Chest CT along with others. I did have a bronchoscopy but they would not do a lung biopsy on me as the state of my lungs made it too dangerous and that was back in February. For me, there is no cure, it is irreversible and they only thing that will help me is a lung transplant, which I have been denied. They have me on many meds and oxygen 24/7 trying to just stabilize me for as long as possible, but without a transplant, this is incurable in my case.
DeleteSeeing you in this video makes me want to cough for you!! I am still in shock at how quickly this turned. You went from being an IC advocate to BAM. Just like a car accident, you know what I mean? I never thought in a million years you'd end up with this disease (which I still can't pronounce. And here I thought pronouncing IC was bad!). Your videos have helped me so much over the years, especially the video on the magic3's and how to use them. I would have never known otherwise and I would have been in the dark forever. The work you have done here on Earth has helped so many people. I know at times in the past, you may have wondered if any or all of the hard work you did, was impacting someone's life. Seems you are getting much more traffic on your blog than you ever did, but it's good, because all those blogs you wrote, will now help someone else, and even with this lung disease you have. Thanks for being a warrior. Healing hugs.
ReplyDeleteSariah; THANK YOU for such wonderful words. They mean so very much and to know that my IC Advocacy efforts helped others gives me such comfort!
DeleteI also want you to know how very much your IC videos meant to me because I have IC, and your positive optimistic attitude, and beautiful smile encouraged me in my journey. I was diagnosed one year ago with BO. Wondering if there is any connection as both involve "interstitial"? Pulmonologist wants to get definitive diagnosis with lung biopsy, but he did diagnose BO with PFT and HRCT. Wondering why you are not a candidate for transplant? My pulmo has not yet suggested transplant.Do you have any idea of the cause of the BO? Mine is ideopathic- they can't figure out the cause.Are you on any medications for BO? What is your FEV1? or % lung function? How low does O2 drop? You are the only person in the world that I know who has both IC and BO as I do. I hope I will be able to handle this as well as you have with your positive attitude. You will never really know how much your videos mean to a fellow traveler on this unfamiliar and most unexpected journey. Thank you with all my heart.( I loved the video where you talked about handicapped parking permit!) priceless!
ReplyDeleteCarol; I am so pleased that my videos and Blog have been helpful to you. I am pleasantly surprised to hear you have had Bronchiolitis Obliterans for so long. I have only had it for a few months and it had advanced to rapidly that I MUST have a lung transplant. I am going through the evaluation process for one and hope to be accepted. The hospital that denied me felt my multiple medical conditions made my case "too complicated" for them to consider. This second hospital is putting me through the FULL evaluation process, which is good before they decide. You are the only other person I know who has BO. I am on many medications for it and they are strictly to TRY to keep it from getting any worse than it already is so that I can try to qualify for a transplant.
ReplyDeleteThere was some evidence of air trapping and scar tissue in my lungs as far back as 2004, and my PCP ordered cat scans of chest every six months to see if any further changes. It was not until I ended up in ER last April with pneumonia and low O2 levels that I was finally referred to Pulmonologist who ordered PFT and High resolution CT.
DeleteOvernight oximetry revealed O2 levels drop to 81 with sleep. 6 minute walk during PFT revealed O2 drops to 83, so supplemental O2 ordered for night, and portable O2 with exercise when O2 drops below 90. Which it does every day if I try to walk much. Heart rate up to 144 with walking. Last PFT shows FEV1 dropped from 62 to 48, but no mention of transplant. Pulmonologist wants VATS lung biopsy to confirm diagnosis of BO, but from my research BO can be diagnosed on PFT and HRCT results.. I am refusing to take oral Prednisone because of past severe side effects. I do use Advair inhaler occasionally. I am swimming every day and riding recumbant bike to try to maintain lung function. I check O2 levels during swim and O2 is 92! but if I walk it drops to 85, so swimming is best exercise. I call it my pulmonary rehab.I thought IC and fibromyalgia was enough of a challenge, but God must really love us a lot to purify us through fire.Now I know how I will probably die (by suffocation if I contract pneumonia), I have no fear or anxiety because I absolutely know that God will walk beside me through it all, and I will praise Him as long as He gives me breath.I think of you, Catherine, and pray you will grow closer to our loving heavenly Father though this experience as your trust and faith in Him grows stronger every day. Hope you continue posting.
I had zero symptoms one day and literally overnight I began coughing and thought I had a cold. When it persisted I went to the doctor and of course thought I had bronchitis. When that didn't improve, I was checked for pneumonia which of course I didn't have. By Dec. I was in the hospital for 10 days and the doctors were stumped. I finally went to the Mayo Clinic for my diagnosis and just from Nov. to Feb. I had gotten so bad that's when I was told I would need a lung transplant if I was to survive. I am to start Pulmonary Rehab tomorrow and do not know how you swim. I can't even go to the bathroom without almost passing out and that's with my oxygen on. But I must do it. Thank you for your prayers and wish you well too!
DeleteI better clarify that I am not out there competitively swimming. I swim laps on my back because I cannot get enough oxygen with face in the water. Swimming forces me to breathe deeply and evenly. I am the slowest swimmer in the senior lap swim. I am 62 yrs old. I cannot do much of anything that requires much exertion, like housework, vacuming, changing sheets, ect... but my pulmonologist said swimming is the best exercise for those with interstital lung disease, and I am amazed that I can swim laps for one hour when I can't do much of anything else! I do use portable O2 while riding my recumbant bike if O2 levels remain around 85-88. Would love to hear your experience with pulmonary rehab. Pulmonologist wants to repeat PFT every three months now since I lost 25% lung function since last PFT 1 yr ago.
ReplyDelete