I’m noticing a number of patients interested in Tyvaso. The form is new for me as I have just been approved today and I have been on Tyvaso since early February 2021 for treatment of PAH and IPF. I started at 3 breaths every 4 hours and have graduated to 18 breaths as of the end of April. It seems to cause me to have a short coughing spell […] View
The purpose for my writing here is to encourage some of you older guests that there is still life after IPF. I am on 10-12L of O2 during the day when I’m moving around some but mostly sitting and my O2 level can drop into the 70’s when I walk very short distances, say 20 or 30′. At night I reduce the O2 level to 6L.
At age 83 I’m not planning to return to work. I was diagnosed with IPF 3 or more years ago and my condition is pretty stable now. Since my brain still functions about as good as it always has, I use it as I sit most days. I do go to pulmonary therapy to work out with some monitoring of what I’m doing. I also do some volunteer work helping with some desk chores for a small non-profit that helps to keep my mind active. There are some other groups I help with horticulture questions, and this also keeps my mind busy. Keep busy and do what you can, as long as you can. It isn’t easy but important to stay connected doing good for whom ever you can. You can always tell someone about Jesus after you have a relationship with Him. Read the some of the Bible starting in the book of Romans or the book of John. Then just keep reading for more comfort and suggestions of how to tell others about what God, through His son has already done for us. Hoping we connect after we leave this life and head onto eternity.
Mike, I have been on OFEV for over 2 years and seem to have much the same reaction to activity as you do. I’m on 13L of O2 during the day and my levels will still drop to in the low 70’s just going to the bathroom which is only 20’each way from my chair. At night I lower the level of O2 to 6 or 7L. In addition to the IPF I also have PAH and I’m talking Tyvaso for that. I go to pulmonary therapy 2X a week where they up the O2 to 15L when on the machines. I use a wheelchair to get to and from the car. Sure puts a crimp on being active. Never thought I would see this. Earl
I’ve been on Ofev for going on 3 years. I started on 150mg 2Xday and my doc had me get blood sample 3 times annually to check my liver function. At one point he suggested going to 100mg due to the effect the Ofev was having on my liver. I take an imodium tablet every other day and eat a meal with the Ofev so I have no serious digestive track issue.
Wishing you all the best and learning we just have to slow down and take longer to do anything. I’m on 10L of O2 during the day and 6L at night.
I find that fatigue is what most of this disease is. I’m used to going-at-it and getting it done. But guess what, those days are over. My wife used to call me the Ever-Ready Rabbit. I seldom ran out of pep. Now…..I…. have….. to…. go…..slow. Yes, pacing yourself for the day is all I know now. We are all different and I’ve been told IPF affects each of us differently. I have to remember to “breathe in through your nose, out through pursed lips…. slowly”. I’m on 10L of O2 during the day and 6L at night. I’m into this game about 2 years now. OFEV 100mg 2X/day and Tyvaso (inhaler) 21 breaths 4X/day for PAH. My condition seems to be stabilized. I hate to be a burden on my wife but I really don’t have a choice. All the best to you.
Ron, I’ve been on OFEV 150mg 2 times daily, with food and then down to 100mg 2 times daily with food for over 2 years with no problem with low O2. I suggest you look for some other reason for the drop in O2. I have very little problems with digestive track either.
Pulmonary Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.