russell-jalbert
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I received a BOLT from Duke University Hospital in Durham, NC on 10/2/22 and discharged on 10/19. The transplant team mentioned I got through in-patient quickly. I haven’t had any complications , but it is still very early in my recovery process.
I will share a positive experience though. Monday was a beautiful day here, and while wifey was driving me home from a day of follow-up visits; I was struck by its beauty. For the first time in several years I felt a wave of gratitude and appreciation of life. I was thrilled to be rid of the cannulas; the waiting and preparations; and the constant weight on my mind and body of the IPF.
Although I still feel as if I was hit by a truck, and as weak as an infant; each day is better than the last and I feel optimistic for the first time in a very, very long time.
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I too lost over 40 pounds, but it wasn’t (and isn’t) easy. I truth, part of my success wasn’t because of my new dietary plans…it was due to OFEV. That drug was, for me, a GI catastrophe. After a year and a half, I had to give it up and went to Esbriet and stomach returned to normal, and I got my appetite back. Which means I am dieting again to hit the transplants team target BMI. The irony of this isn’t lost on me 🙂
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Thank you ALL for your amazing support! It helps SO MUCH to not feel alone in this
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In case you missed this article on this site. Mentions some of the current research toward a cure. None yet here are in human trials though.
https://pulmonaryfibrosisnews.com/2022/01/03/top-10-pulmonary-fibrosis-stories-of-2021/
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Joe,
Isomnia not been a problem for me on either drug.
<p style=”text-align: left;”>I hope this is helpful, and here’s to a better 2022 for us all!</p>
Russell -
Hello Jofac, from Cape Fear USA. I am 69 and awaiting double lung transplants.
Keeping in mind that every one is different, disclaimer made, here’s my experience with both OFEV and Esbreit.
After 30 months on OFEV I had to quit it. The gastric distress was just too too terrible. Lost a lot of weight, 30+ pounds and my appetite. When I again reported this to my Pulomonolgist and said I was quitting OFEV, he urged me to at least try Esbreit and see what happened.
I am soooo glad I did! The constant diarrhea disappeared after a couple of weeks and my appitite came back.
I am also a life-long beach bum, and love baking on a quiet beach for hours. I had zero sun exposure issues on Esbreit. I’m of Irish and Canadian descent, so not dark skinned.
Also, I have read, that IPF patients that change from one to the other medications, have sometimes shown more resilience to the disease’s slow march to death. I believe that it was on this site I read that.
So my 2¢ is if you can, try it and see how you do.
Best of luck to you, update us if you can with your decisions.
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I can make these recommendations, and I am 69. I lost a bunch of weight (30+ pounds) for the transplant team this way:
1. Using the My Fitness Pal app – every day I track EVERYTHING I eat and drink in the Daily Diary. Set a weight goal and target date, and the app will give you you daily calorie amount. The basic app is free, and an upgrade is available that add all the nutrition details. You can even scan the label’s barcode and it will load it into your meal.
2. Started using an exercise app (Samsung Health) that tracked my daily steps and calories burned. It also can integrate with My Fitness Pal and automatically import your daily exercise stats
3. Met with a Nutritionist, mine was available free through my local Pulmonary Rehab group. Then do what she/he recommends!
4. Change what and how much you eat.
4. This one is very difficult but critical – get used to being hungry.
5. Remember the long-game goal
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Hello Lnour, I started Esbreit in March 2021 after 15 months on Ofev. I am VERY glad I did because my GI problems have been dramatically reduced. It was so bad (10-15 x per day) , I was thinking of just giving up on the IPF meds. My Pulomonolgist suggested trying Esbreit First, and I have been extremely grateful to her. I’ve not experienced any sun sensitivity, and much Much MUCH improved GI.
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Hello Lnour, I started Esbreit in March 2021 after 15 months on Ofev. I am VERY glad I did because my GI problems have been dramatically reduced. It was so bad (10-15 x per day) , I was thinking of just giving up on the IPF meds. My Pulomonolgist suggested trying Esbreit First, and I have been extremely grateful to her.
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My side effects, so far, have been minimal :-), however as this article shows, side effects may increase (or decrease) over time. I’m just 4 months in.