What is Pulmonary Fibrosis
Diffuse parenchymal lung disease (DPLD), also known as interstitial lung disease, refers to a group of lung diseases, affecting the alveolar epithelium, pulmonary capillary endothe...
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Hi, my mom (70) is in the hospital with suspected interstitial lung disease or pulmonary fibrosis. I wanted to see if anyone had any insight to her situation regarding waiting for a clear diagnosis. In April, she had a chest ct because of weight loss. It showed a shadow, which was attributed at the time to a probable bruise from falling on her ribs. They decided to wait a few months to recheck because of her low risk for malignancy.
Things continued to go downhill overall health-wise but she never complained of being out of breath, just tired and listless. Another diagnosis was depression but we know now that was just one of many red herrings and mis-diagnoses. Anyway, in July a follow up ct was ordered because of continued weight loss. It showed some "mild" changes in the lungs so a PET scan was ordered. That happened one month later and the difference was astounding. I have reviewed images from lung cts showing pulmonary fibrosis and it's exactly what my mom's scan looked like - almost like fireworks had gone off in both lungs, worse on the right. They scheduled a biopsy with a bronchosope so more waiting...that tissue didn't give a diagnosis so a surgical biopsy was to be scheduled, but her condition deteriorated so quickly weekend before last that we got her into see the pulmonologist because we were so worried. She could hardly walk and was very winded. They admitted her to the hospital last Wednesday and her biopsy was the following day. She was on a ventilator, which was terrible to see, in ICU for a day, but now is in a regular room on full oxygen because her breathing is so difficult. After many tears and a lot of confusion, we still don't have a confirmed diagnosis from the pulmonologist. HOwever the surgeon came out and said it looked like interstitial lung disease or pulmonary fibrosis and that the lung tissue was stiff and that's why the problems breathing. The doctor is insisting we wait for the biopsy to come back before saying that for sure; however so far the biopsy isn't showing anything specific so now they may send the samples to a Stanford specialist for evaluation. Does anyone have any experiences with this lengthy wait for information or general advice? Right now they have her on prednisone and oxygen. She can't even sit up without getting exhausted and out of breath. Very distressing. Thanks. Posted on 09/10/09, 04:09 pm |
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Wow! Sounds a little like what happened to me ... I suffered for 2 yrs. of being misdiagnosed as having allergies ... couldn't breathe and walk, lost 50 lbs over that time, but couldn't seem to get a doctor in my area to run tests or show interest. Have HMO insurance, probably why no tests or effort, and it wouldn't pay for out of network services. I did finally find one local doctor that told me I had serious illness and needed to seek expert help, and by then I knew I couldn't make it much longer, my husband and I went to National Jewish Hospital in Denver, CO. I was so frail that I couldn't have the more invasive testing your mother seems to have already had, and she may be too frail to travel as well. Going to Denver usually means being on oxygen 24/7 when you have lung problems ... I sure had to be. I believe that Nat'l Jewish Health takes most types of insurance and they also have financial aid programs. They are wonderful ... in 5 days they did comprehensive testing, gave diagnosis and treatment plan.Nat'l Jewish Health doctor confered with my home state doctor and I am now on treatment plan with Prednisone and other meds, but not on oxygen as yet (still waiting for more tests on oxygen use ... getting things done seems very slow, at least on my HMO plan, but go on Medicare soon, so hope it's speedier.) I have regained somewhat of a normal life, can walk and breathe at same time, and while have limitations and irreversible lung damage, feel my quality of life has been improved so much, will always be thankful for help of Nat'l Jewish Health and their wonderful staff. Stanford sounds pretty high level care to me, but if feel the need for more answers or progress you may want to check out the National Jewish Health website, all phone numbers are there. Please know, you and your family are in my prayers ... and I'm so glad you, like myself, found this wonderfully supportive website ... it gives me hope and very useful information so that I can be a part of my treatment decisions and talk better with my doctor. 
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Dear Taka: My heart goes out to you -- it's taken me a couple of months to go through CTs and biopsy, but I STILL have no clear diagnosis. I too, like Allenerib, am going to National Jewish Health -- my doc at U of Chgo recommended it when I asked about a second opinion (they are great at U of C too!). I'm hoping to get a clear diagnosis (mine may be caused by an immune disorder OR hypersensitivity pneumonitis -- so they told me to leave my home, which is terrible when you are sick and have no good place to go!)
You are all in my prayers and I hope you can take your Mom for a second opinion somewhere! Check out US NEws & World report for the list of top pulmonary hospitals. Kauailover
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Taka.you need to pray PLUS go to a big hospital like National Jewish or Duke or John Hopkins...someplace that knows about pulmonary fibrosis. It's a problem when your on 100% oxygen because I know...my husband was in that position. My prayers are with you and I pray they find a solution.
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Oh yes. From my own reading and experience inflammation can hit hard and fast or be slow progression. I've fought boughts of systemic inflammation from my eyes to my lungs. I had abnormal scans that showed 4 nodules the doctor was sure was scarring but I had to wait 4months for a bronchial wash. It was inconclusive. I'm still having more issues but still undiagnosed but with "undefined" autoimmune disease. All you can do is wait and keep on the steroids. There is no cure for these kinds of diseases I'm sad to say but hopefully with medication and even cemotherapy they can knock out the auto immune response that is causing this episode.
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I've been waiting since July for identification of whatever might have undone my lungs ... sometimes they just can't identify it. The Prednisone is a miracle drug, but I don't think you can stay on the high levels for too many months. My doctor said there is definitely lung damage ... small airways wiped out ... but possibly auto immune problem too, so they're treating for the auto immune. Just glad to breathe again, but will deal with whatever happens when they start weaning me down on the Prednisone dossage ... then they're adding an inhalant called "QVar". Your Mom is blessed to have you help her, and my prayers and best wishes are with you and your family.
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