Just Diagnosed

[Mark Koziol]

@melbaker

Hello Mel, sorry to hear about your diagnosis. Pf patients endure a myriad of symptoms and the ones you have described have happened to many of our members. I did get a metallic taste in my mouth when I was on an anti-fibrotic medicine (Ofev). My appetite was there although I found when I ate too much in one sitting I had breathing discomfort. I did lose the metallic taste after several weeks. Please relay this info to your physician. Best wishes, mark.

[Ross Harris]

Hello Mel:

I’m sorry to learn of your diagnosis. Mine was November 12, 2019. My mother passed away on June 19, 2019, from IPF. Your experience with appetite and the metallic taste is consistent with my own experience. It’s vitally important that you maintain a healthy weight and a healthy level of physical fitness. I am on OFEV, which calls for two 150mg capsules daily. I usually eat one-half of a banana and then take the pill and wash it down with a full glass of water. After drinking the water, I eat the remainder of the banana. I try to get a thirty minute walk in each day but I am now finding that in order to continue the walk, I am going to need oxygen. I have a Pulse Oximeter and check my oxygen levels three or four times a day. I have some 15 lb weights that I use to maintain some muscle tone. This disease is a subtle killer and if you don’t fight back it destroys your body a day at a time. I watched IPF destroy my mother over several years and it was not something I would want to see anybody else go through. If you have brothers or sisters, see if you can talk them into getting tested. This disease seems to strike in family’s more than the medical literature indicates.

Ross

[John Solomon]

Hello Mel;

Sorry to hear about your diagnosis. It is only recently that I came to know about Pulmonary Fibrosis News and am now a member. This is my first posting  I was initially diagnosed in 2012 but after that, my IPF has been sort of stable. It was not until mid-2019 that I had some severe symptoms of cough with mucus and did undergo a series of MRIs, Scans and X-Ray. I am now on Esbriet since Oct. 2019 – 3 tabs of 267mg each X 3 times daily. At times, I too have a loss of appetite and hate the sight of food, but I need to eat something as I am on this high medication. I have been going for pulmo rehab twice a week, but then due to the current health situation, the center has closed its offices since mid-March. I have one question and that is has anyone experienced any weakness in muscles in the back or in the arms? I am unable to keep my arms up for more than a minute when painful fatigue sets in. I even have difficulty when eating – the muscles in my next ache and I have to stop and wait for sometime till this sort of spasm subsides and then continue. I currently do not have a cough and this is controlled. I also have drying of the eyes though I do drink a lot of water. If any of the members are on Esbriet and have experienced such situations, I would like to know.

In one of the previous newsletters that I received, one of the members recommended that we read a book by Dr. Atul Gawande entitled “Being Mortal”. I have covered about 40 pages and it is a wonderful book which well written. It is available on Amazon. I would like to recommend this book.

Thank you.

John S.

[Mike Mses]

@melbaker

Mel

I was diagnosed in July 2018 when I had IV sedation and my O2 level fell to 66.  Looking back over health records, I was short of breath in 2015, but it was pushed off to being out of shape.  I’ll be 71 this coming June.  I am on Ofev, but only the 100 mg for now as the 150 mg was causing too many side affects.  I was on Esperit from December-April, 2018 when insurance wanted to cut costs.  Super bad side affects with that, including severe nausea and diarrhea, no appetite,  and no sleeping.  Went back on Ofev and effects seem under control now.  I have some Cheerios with banana and milk in the morning, then a decent meal at night, and a light snack for lunch.  Overly important to stay as active as possible.  I am currently on O2 when I sleep, exercise, or moving around a lot.  So far, I seem to be holding y own while the disease moves slowly, I think.  I am working on getting on the lung transplant list to prepare for when my vitals get too low.  I did have a 3.5 day evaluation at Uof L in March, but need a couple more tests.Right now, everything medical is shut down, so getting on the list probably will not happen until late summer.   I don’t remember a metallic taste, but I certainly remember becoming nauseated at the sight of food, even on the TV.  Hang in there, as this all will pass as you get used to your meds.   During this crisis I am staying strictly in the house and my wife cleans every little thing that comes through the door.    Mike Moses, Hebron, Kentucky