Mark, I had a bi-lateral in June and my situation is the mirror image of yours. Tacorlimus as well as Prednisone are the culprits but thanks to you and your empirical data, I now know what to expect.  Thanks!

 

Ross, crank it up; there’s no such thing as too much O2 so find the setting that meets your requirements.  I use the Inogen 3 (4 years) and I have it set to the max, 4.  The biggest problem will be battery time; the higher the rate the more power will be needed.  Good luck and stay well!

Kristin, strange things do happen.  I have had great results at MGH never had trouble getting help or questions answered etc.  I’m sorry your experience has been so poor.  My pulmonologist is Dr. Zebrek at BID; just great.  Sound like you’re in Westboro; I’m originally from Worcester. Stay well and keep your eye on Mom.👍

Kristin where do you live in MA?  I am on the Cape. My pulmonologist is at BID but, with his recommendation, I have been tested 2X for transplant at MGH and am currently listed.  Everyone I have dealt with at MGH has been great but I haven’t dealt with everyone. Let me know if I can help. Reach out for Aliaa Barakat @ (617)412-0356 or… Read more

I think anybody with IPF has one choice – hunker down!

I started Esbriet in January, 2016.  I was ordered to stop on February 26, 2020.  I am going to be listed next week after a 2 week flush of my system of the Esbriet.  They do this because of bleeding concerns. I had minor problems in the beginning and for the most part, I never missed a dose but I would have stayed on it as long as they wanted… Read more

I pick up where I left off on May 31 (see above).  I went back in November and the opinion was that I was a prime candidate for listing at MGH. However, I had to go through the testing process all over again from FVT to cardiac catherterization.  I have now completed everything.  They pulled me off the Esbriet and it needs to flush out of my… Read more

I have been pretty diligent about rehabilitation and my maintenance program but for the last few months I have not been able to keep up on the treadmill or bike as my SpO2 levels nosedive not to mention the acute shortness of breath on 6L of full flow O2. I continue with the exercises (with 3# weights) and stretches and I head up to MGH… Read more

Hi Mark-I was informed by the transplant team at MGH that I will be listed.  I have begun the testing (second time) for final evaluation. I tested in 2017 but for the last 2 years I was deemed “too stable” to list.  However, that has changed now.  After all IPF is a progressive illness and I have been sliding, accelerating somewhat over the… Read more

Paula, when did you get on the list?  How long after testing were you notified?  I have been thoroughly tested at MGH (12/17) but I am told I am too stable.  My next meeting with the team (Todd and Mauricio) is in November.  I am getting worse and I have followed Anne Lafleur’s guidelines and am wondering what I may be in for each time I have… Read more

Hi Mike, I agree with Mark.  I was diagnosed in September, 2015 and have been on Esbriet since January, 2016.  I honestly feel that I have had this disease for 5 years now and although I am going downhill, I think the Esbriet has help keep me upright.  I have been tested for transplant (the only known “cure” at this time) but am too stable to… Read more

My pulmonologist and the transplant team go by test results.  I have been on Esbriet since January, 2016.  Side effects have been appetite loss, weight loss (not the worst thing in the world), occasional mild headaches and fatigue, all pretty manageable.  I will stay with it until they say stop and I really don’t expect that to occur until I… Read more

Charlene, I feel the same way in the morning after being in bed for 7-9 hours.  However, like you, once I begin activity, even if it is just sitting watching TV, I bounce back.  I often feel, though, part of my fatigue is attributable to anxiety.  One’s life turns 180° with this disease and living for me without yard work, golf, walking,… Read more

Hello Richard Jarvis.  Good to see you are experiencing benefits from laser therapy.  What is your diagnosis?  Is your pulmonologist on Cape or Boston?  What led you to Dr. DeSimone?  I have IPF since 2015 and on Esbriet.  Always looking for an edge!

I don’t have or have noticed a metallic taste but I have had a loss of appetite (<40 lbs.).  It’s the nature of the beast.

@davidota , Mass General Hospital in Boston, MA.

Thanks David.  May I ask how old you were when you received your new lungs?

David, thanks for the feedback.  Our stories are in parallel, save that I am awaiting listing.  I work from home on my “brains” so that my work is easy on me.  I was diagnosed in 2015, have been on Esbriet since January, 2016 and cleared all transplant testing at MGH in December 2017.  I have 6 month evaluations and am still considered too… Read more

David, pardon my stupidity but what is FMLA?  Also, did you have a double transplant or single and what hospital did you have it done?
Thanks

I have lost 35lbs. +/- since starting Esbriet AND that is the culprit as opposed to simply my disease (IPF).  The transplant team at MGH isn’t overly concerned because my BMI is OK and I certainly could stand to have lost most of those poundage.  I used to love to eat, I mean I loved it.  Now, I actually don’t look forward to mealtime.  A lot… Read more

Yes, good to go for air travel.  Your MD should write a prescription for the POC.  The tendency of all insurance companies is to say no but the MD’s office are well versed in the ins and outs of insurance protocols including Medicare.

Welcome to the Forum.  I have IPF. Some thoughts:

1. I use Inogen POC’s covered by Medicare; so far (3 years) no problem;

2.I have been on Esbriet for 3+ years; some side effects mostly loss of appetite occasional headache and a feeling of malaise but all have been manageable; I feel the reward outweighs the risks (side effects);

3. I am… Read more

I have completed the evaluation at MGH.  I am too stable to be listed. I am 72 and, although I have been told you age out at B&W @ 70, this is not so at MGH. I met 2 weeks ago with Dr. Todd Astor at MGH who ordered a stress test as an update to my cardiac situation (stent placed in 2013) and the results I am told were unremarkable. So, I go… Read more