@raymond-c-king Those who knew Ray King, I just wanted to pass along that he passed away 6/14/19. He was in the hospital for another medical issue, developed complications that kept him in the hospital for a month. During that month he developed pneumonia which his lungs were not able to fight off due to the fibrosis. RIP Ray View
@Roger Mills, I had no side affects with Esbriet. Well for the first 4 – 5 months, then I developed an allergy to it. Then they put me on OFEV. Within 3 months I got diarrhea. Bad. They took me off for a few months to give my body a rest. Then started me back. After a few months the diarrhea came back.
I am now off of OFEV because I made the transplant list and MGH states that the OFEV interferes with the healing process.
Bottom line, you need to decide what will be best for you. You really can not compare the side affects that your mom had from her cancer treatments with the stuff for the fibrosis. In reality the drugs only help to slow down the process. Good luck in your decision and if your doctors do not like your decision tell them its your body, you understand what your being informed of, but bottom line is your making the best decision for you. If they can not respect that, then you might need to find another doctor.
I was put on the the list the 20th of Aug. (I had my first appointment in April of this year) I was recently bumped from 3 lpm to 8 and it appears that might be bumped up again. I would call the person you speak with in the team (my contact person is Jill) about how your getting worse to see if you can bump up your being reevaluated. Where you are no longer stable one would think that would get you back on the list. As for your age, there was a post transfer guy there slightly older than you and he was doing great.
Ann is wonderful, but there is only so much she can do. Personally I would also have my pulmonary guy advocate for you with them.
If you ever want to chat I can give you my email address or phone. Being on the list is wonderful but…… unlike having a time frame, you are constantly waiting for that phone call.
@Patricia Williams. Last year I dealt with the diarrhea for 11 weeks straight. Horrible (did not lose one ounce stupid fat fairy). I could not get under control. So my doctor told me to go off of it for a few months (at the time I was on 100 2 times a day) to let my body reset.
This past Feb I restarted the 100 2 times a day and have learned an interesting method to keep the diarrhea in check. This works for me, and it might help you.
The moment I see the first sign of diarrhea, I immediately take 2 of the pills that were sent with my initial prescription (was told when I no longer have any I can simply buy imodium ad. He said that 2 of those are equal to one of the pills sent with the initial prescription. So in my case it means I would take 4 of them at the first signs of diarrhea). In the past, I would kind of do a wait and see if in fact I was starting with the diarrhea, then take the meds. This was probably why it got so out of control. Now with my new way of dealing with it, any issues I have with the medication is really very minor.
I have been bumped up to the 150 2 times a day because the IPF is progressing to the point that my hands and feet turn blue at times. The increase in meds is being done to try and stabilize the progression while I am in the process of trying to get on the transplant list. Yesterday I needed to use my ProAir because it was getting difficult to catch my breath. Usually doing the inhaler works right away. Not so yesterday. Took over an hour.
Welcome to our family here. You will find everyone is quite helpful and no question is ever dismissed. Whatever is going on, we are here to listen, offer advice, and be a sounding board when you need one. No matter how big your family is, or how much they try to understand what is going on, We understand what your going through. Might be some slight differences but we get it. Welcome.
This reply was modified 3 years, 5 months ago by paula.
Hi Robert. I am at MGH as well. Have you been put on the list yet? I am almost done with all of the appointments and with any luck, hopefully I will know by the end of July or mid Aug. I will actually be there 3 times next week.
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.