Mayo Clinic Connect
Lungs- I have this condition , numerous nodules, and cysts. It is part of an auto-
Immune disease. Is there someone also with this condition? Debbie
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I have this disease too. I have what they call mixed connective tissue disease with interstitial lung disease and also idiopatic pulmonary fibrois. I am 35 years old and my doctor here in illinois is sending me to the mayo clinic for it. This is connected to an auto immune disease too.
I am 1/2 through with Cytoxin treatment for interstitial lung d. actually only 2 treatments to go. Once a month I receive it through IV. Also take prednisone along with BP meds because of the prednisone! I had lost 50% lung function on my PFS before they figured out what was wrong (MCTD). Had CT of chest. bronchoscopy, and labs to help figure it all out. I can breathe much, much better now. I work in a doctor’s office and could hardly make it to the waiting room to bring a patient back to clinic area at the time. Now unless I really push it too hard I am fine. Able to work and have not (yet) had to use my short term disability. I just take off 2 days a month, 1 for the infusion and the day after to rest. Always do it on a Thursday so I get 4 days to recover. It’s not a fun process or easy one but it could be much worse.
I am sorry, but what is MCTD? I am searching for help for my husband who has Polymyositis. His lung function if around 50%. He has no energy and struggles to breath. Also, he has a pain in his back around the kidney area. He has gone through CT’s of the upper body and lower body. The doc says she can see nothing to tell her where the pain is coming from. He is under the care of a cardiologist, lung, rheumotoligist, kidney, endrocronologist, etc. No help yet!
I was diagnosed with interstitial lung disease about 5yrs ago after my internest was concerned about my cough. It was caused from smoking . I quit years ago. I had a flare up in July this year & have been on Prednisone 5 mg once a day & Budesonide & Ipratropium 0.5 mg & AlbuterolSulfate 3 mg using a Nebulizer for breathing treatments . I see the DR. regularlYy At this time once a month. The most bothersome is the feeling of dowsiness most of the day & shortness of breath. I still drive but it mostly an effort walking . I don’t have picture.
Giad you are going to Mayo Clinic. I hahe been about 9 years ago , at that time I had PBC,-liver disease. I still have it , but with medication it’s under control. I will keep
You in my prayers as you go. Debbie
Dona, you are a very strong lady, it is remarkabl.,how you handle everything! I’m pleased you will soon be through your chemo. I will keep you in my prayers , that
You will again. Feel stronger. Prednisone, is good when needed, buy, has many
Side affects. Thank you for asking me to be your friend. Keep in touch.-Debbie
I have ILD with polymyostitis – I had organizing pneumonia first and then went to ILD – had a lung biopsy. Am on Predizone (weaning from 10mg) and 3000 cellcept. I went to John Hopkins in March, have you gone to Mayo? Thanks
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I was diagnosed with Acute Interstitial Pneumonia in April 2011. I have been on and off Prednisone since with limited success. My Dyspnea seems to be worsening. I know this is a rare disease but I’m looking for anybody with a similar experience.
I was diagnosed with IPF Jan. 2011 . I am 60 years old and the Doctor tells me that I am not going to get better without lung transplant,that maybe a couple years away.The Doctor says there is no sure way to estimate how my condition will progress. I have shortness of breath at different levels. Seem to be tired a lot,but I have to work a lot of hours right now covering for vacations so that may why I am tired. I have a lot of questions but there are not many firm answers about this disease.Are you still working and how is your oxygen level.
I’ve been unable to work since August and I’ve only worked 4 weeks since March. I’ve had many tests and it looks like there’s permanent lung damage. My shortness of breath has forced me to apply for a disability retirement at age 56. A year ago I was an athletic level cyclist and now I can barely walk around the block. My O2 levels aren’t that low but the Dyspnea (shortness of breath) is worse than ever.
Hi everyone. I’m new to this, so here I go. Let first say, has any one gone to National Jewish website? They are wonderful hospital in Denver, Co. They only work with people with lung disease. Anything and everything you ever wanted to know about lungs, you can find out there. I urge anyone with interstitial lung disease, or any king of lung disease to check them out..
I was DX with a form of interstitial pneumonia also Johnmohr. It took them forever to figure out what was wrong with me. It took me finally becoming so short breath I became unconscious, and due to lack of oxygen circulating in my system I had a heart attack. Lung story short do your research, I battled this stuff for 4 years. I went into what they called remission, in-that it stopped growing. That lasted about a year, and it came back. I just found out that for the first time in 4 yrs. my lungs are clear!!!!! BUT, don’t you love it, there is always a but… anyway it left me with a lot of damage. So, please I urge you and anyone to go to NATIONAL JEWISH WEBSITE. Did you know that there are 130 different types of interstitial lung disease? Of those 130 types there are only a hand full of those that can treated and cured. Anyway, I’m going on and on… I have never written or posted anything in my life. I don’t know why I did this time, I guess there was something about your stories. God Bless you all, my thoughts and parers are with all of you.
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