[Tom Nicholas]

You can stay on Edbriet as long as you have a doctor to prescribe it….. or until your money runs out.

[Tom Nicholas]

@mal-com

 

I’ve been on Esbriet for 3+ years. My understanding is the sun effects happen in the first 3-6 months. I did have a problem with loose stools as I went to the full dosage. A tip given to me on this site resolved vthe issue. I had probiotic yogurt every morning for 2 weeks, problem solved. I still have the yogurt several times a week. I used Activia yogurt, it actually was like a dessert for me. Good luck!

[Tom Nicholas]

I receive my order next week. While looking at the many products available on Amazon or eBay, I did notice a consistentcy of the front labels prominently displaying, for example, 1000mg. While looking at the ingredients and dosage, most products show similarly 45% EGCG per capsule. I assume this to mean, if it is a 1000mg capsule, then I’d be getting about 450mg of EGCG. Is this a correct assumption?

[Tom Nicholas]

I was not sure if I wanted to respond to this thread. After thinking about it awhile, I remembered how either talking or writing about things was good therapy. Maybe my story might encourage others to share their stories, and we would find, we are not so all alone in our thoughts nd our journeys.

My IPF story started almost 4 years ago. We live in the mountains of Western North Carolina, at an altitude of about 3,000 feet. My wife nd I daily, would hike these old gravel, logging roads, 2-4 miles a day. It was late fall and although I am very healthy, I had suffered cold, and couldn’t quite shake it. As the weather turned in winter, my shortness of breath became worse. Yet we were climbing steep inclines in my late 60’s…maybe this was just part of the “aging process”. The SOB continued to early spring, and I remember carrying a 40 pound bag of top soil. After just a few feet I was totally out of breath. This wasn’t “right” so I scheduled an appointment with my doctor. Who listened to my lungs, thinking I might have pneumonia, I was sent to the local hospital for a chest x-ray. Later that day, my doctor’s FNP called me and said the x-ray did show something and I would be treated for pneumonia for 10 days, if it did not improve, I was to return. The FNP and I had known each other for several years and were close. When I asked what the x-ray showed see was real emotional and almost in tears and said we, “we just don’t know, and you’ll probably need some additional tests.”

I am very proactive regarding my medical history, and I belong to several “portals” for my medical information, including the portal for the hospital. So, I pulled up the notes on my chest x-ray. There it was, three words which changed my life forever. Three words which suddenly unlocked thoughts and memories I put away over 20 years ago. Three words: “potential pulmonary fibrosis”. My mother died of pulmonary fibrosis over 20 years ago. The last year of her life, especially the last months in hospice. There is an another entire journey in those times, not for here. My mother was an RN. She raised 5 children One of them me! Me alone would be a challenge for any mother. My mother was a strong woman, yet this disease dictated otherwise. Twice during hospice, with my wife sitting next to me, my mother asked me to do the unconscionable. The first time she said I should take her pillow and help her to heaven. I could not believe my ears. The second time, she was on morphine. She asked me why I was always fighting her. If I really wanted to help her, I should make her a strong cocktail (morphine) and no one would ever know. Of course, I did not. By some luck, and blessing by our maker, I returned by myself about 3 weeks later. I noticed my Dad had not put anything in her “log” for 3 days. I asked him about it, and he said she’d been sleeping a lot the past 3 days. I looked at her closely and she was sleeping with her mouth open, so I tried to close her mouth, it was rigid. She was definitely in a coma. My Dad went off to the den to write a few emails. I took my mother’s hand, and told her she had fought the good fight. I was going to be there for the duration to be there with Dad and stay with him for awhile. I told her I loved her and told it was ok to let go. Less than 5 minutes later, her breathing stopped and she had passed on. My father, my mother’s care giver, died 4 months later of a massive stroke.

My brother was diagnosed with IPF 18 months ago, another kick in the gut! So pretty much for sure, our IPF is inherited. Now we worry about our adult children….

Those were the memories which came back crashing down on me. I read the x-ray results several more times with tears streaming down my cheeks. I waited about 3 days before I could even tell my wife. Unfortunately, when I did tell her, she too knew what would eventually unfold.

We still try to be active. There are many stories here left untold. I’ve always been person to never have someone do for me what I could do for myself. Which meant learning many new skills. Asking for help was always uncomfortable for me…a sign of weakness. So, I am getting better at asking for help. Yet, now on O2 for exercise and exertion, I’m beginning to relent. At the same time feeling frustrated I cannot do many things I was able just a few months ago.

On positive note, in a few more weeks we will be able to go out kayaking, me with cylinder. I am NOT slowing down! Ok, maybe a little bit!

I am a candidate for lung transplant at Duke Medical Center. I am “early” in the transplant window. Knowing the alternatives scare me. As I know first hand what this disease does to the patient, their loved ones and friends.

Each of us in control of our feelings, emotions nd thoughts. We can choose how we navigate these trying times. Me, I move forward with a positive attitude.

[Tom Nicholas]

Somehow, I’ll try and manage to be brief.  Good luck on that!

My mother died of pulmonary fibrosis over 20 years ago. It wasn’t called IPF in those days.  My brother and I have both been diagnosed with IPF…me, for about 3 years and my brother about 18 months.  My father was my mother’s caregiver.  He lovingly provided her with dedicated caregiving…no one could ever want more than he gave to her.  I lived about 4 hours away, so my visits were on weekends.  My mother went into hospice when deemed she had about 6 months to live.  Hospice also provided wonderful support and attention to my mother. The Lord blessed me to be with my mom the last few days of her life, and I stayed with Dad for awhile thereafter.  My father was a strong, energetic man in relatively good health for a man 78 years old.

Four months after my Mom passed, by father died of a massive stroke.

So my advice here for caregivers, you too need to have a support system, whether it be a friend or a loved one…someone to talk to, someone to share with, someone who will keep an eye on you and your well being.

I remember on one my last visits, a hospice volunteer was at the house when I arrived.  Knowing whenever my Dad had a visit from a hospice volunteer he would run errands, grocery store, pharmacy etc….truly not a “break” and he was in a rush to be back home at my Mom’s side.  I asked the volunteer if she would mind staying for a couple hours, she gracious said she’d stay.  I told my Dad we were going sailing, as his Priest had offered the use of his sailboat on a nearby lake.  We did go sailing…Dad did nod off several times, but we had a wonderful time, and he was somewhat refreshed for just a little while.  He never played the organ, one his true delights in life.  My advice friends, it’s ok to take a “break” not only OK but important and critical you do so, and have a support system to enable that happening.

 

Thanks for listening!

[Tom Nicholas]

Michael ( @mikepapa ), thank you for the kind words.  Regarding Esbriet, initially as we increased the dosage, when I got to 3 pills 3X a day I started having loose stools.  In fact, I called it “battery acid” diarrhea, it burned like heck.  Thank goodness for this site, as many of us have had similar experiences, and there is no need to “reinvent the wheel”.  The simple suggestion was to add probiotic yogurt to my morning meal.  In 2 weeks I was back to normal…and been so ever since.  that was the only side effect I had.  being “fair skinned” I was scared regarding the sun light effect, but never had any problem with it.  My brother is on OFEV and he tolerated it very well.  then the manufacture offered a new improved dosage…less pills to take…shortly there after he did have diarrhea and went back to the original dosage scheme.  it is my belief both drugs have similar side effects…and not everyone experiences the side effects or in the “same way”.

Regarding Vitamin D deficiency.  One of the surprising results of my study…was that as you say most folks these days are out of the sunlight.  however, when they go into the sun, they wear sun block.  They now believe the use of sun block is causing deficiency in even healthy people.  I read here PF 13 blocks out 99% any potential gain of vitamin D…who’d a thought?

When my mother had IPF…they did not call in IPF…that was in the 70’s…there were several references of what pulmonary fibrosis was called. In my mother’s case they called it Interstitial Pulmonary fibrosis…and the only real treatment was steroids (which did not work for her).

 

Best Regards to all, Tom

[Tom Nicholas]

Michael…I have been on Esbriet for about 2+ years.  While waiting for my initial Esbriet prescription, my pulmonary doctor had me on NAC and asked me to continue NAC after the prescription was filled.  I am 69, not on oxygen, and seem to be (at the moment) “stable”, after losing about 1/3 of my lung function.  I am not on oxygen. I have done considerable research on supplements for IPF,  I do not claim to be an expert by any means. I am on the following supplements:

Turmeric, NAC, Nattokinase, Serrapeptase, Multi Vitamin, Potassium, Magnesium, Vitamin D.  My son is both a Doctor of Pharmacology and a Naturopathic Doctor.  My brother was diagnosed with IPF about a year ago, my mother died from it 20+ years ago.  Due to the potential possibility of our IPF being due to heredity he takes many of the same supplements as a precautionary measure.

I read an article which indicated many IPF patients are really sort on vitamin D.  I started taking 2000IU 2X per day.  I recently had an initial evaluation for a lung transplant program.  The blood work indicated, I was still way low on vitamin D.  so they recommended 50,000IU once a week.  I do notice a bit more energy since I began taking the large weekly dose of vitamin D.

After all is said and done it is really difficult to prove whether these supplements are helping, while they are not hurting me.

Good luck and I hope this helps in some way!

Tom

[Tom Nicholas]

Thank you Piet…not so sure “amazing”..I think more “lucky”.  I too get very tired and am exhausted after our hikes…  With our windows closing the best we can do is keep fighting and do as much as we can and be satisified with that result… Thank you for your comments!

 

[Tom Nicholas]

My wife states that I am a “man of many hobbies”.  I guess she’s correct, but there are never enough new experiences for me.  Some of my hobbies are Amateur Radio (KJ4JIA), though I am pretty much inactive, I am currently learning to build crystal radios.  Virtually everyday, my wife and I walk about 2-4 miles up and down these steep mountain roads (thank the Lord I can still do this!).  I am never without a digital camera as I love digital photography both still and video.  I am somewhat accomplished in using Photoshop and several video editing software programs.  We both have kayaks and go as often as we can.  I have 3 quad copters and love to fly and take video.  I am a lapidary as I cut cabs from rock that I find and purchase.  My favorite gem to cut is opal.  I also wire wrap many of the stones I create.  When my “halfback” neighbors are here, the gentlemen try to go bowling once a week.  I am getting out of the collecting of postage stamps as I do not have the time for it.  I have two aquariums and breed some tropical fish. Since by now I have exhausted you…I must mention, though not a hobby, my 90 year old mother in law is in a nearby assisted living facility and we make a short visit there most days.  Thank you for listening….

[Tom Nicholas]

I now respond, “I am stable, and that is the best I can be.”

[Tom Nicholas]

Charlene,

 

Thank you for the “welcome”. I have been reading Pulmonary Fibrosis News for some time now.  I am surprised I never registered.  I have been Esbriet for about a year now.  I feel I have been stable, but I go in next month for my annual testing, so I’ll thankfully have some data to hopefully back that claim up.  during my last visit with my pulmonary doctor, who is quire “blunt”, we were in a discussion of the benefits of Esbriet.  I had mentioned I was aware of many people who felt for a “10 percent” benefit, it wasn’t worth the side effects.  She then told me something that said “everything” for me.  She stated all her IPF patients are on Esbriet.  several patients now going on 3 years of taking Esbriet.  She said everyone of them has been stable and remains stable.  She added, and you know from your studies that statistically, half of them should be dead.  So that is a pretty good testimonial for me.

[Tom Nicholas]

Shaw,
You’ve come to the “right” place…you probably realize that fact now. this group will help you through just about any problem, give you advice, and give you support…we’re all I this together. I had no side effects with Esbriet until I went to the full dose…3 pills at each meal. I take my Esbriet half way through the meal…nothing magical about that…it’s just what I do. When I started 3 pills a day, in about a week I started having a side effect. nothing pretty about it….but the folks on this site have a good sense of humor, even for the most embarrassing issues. I experienced what I called “battery acid diarrhea”. Flame throwing out the posterior. I asked for help, and I did receive the perfect solution which actually worked. Every morning with breakfast Ihave some probiotic yogurt…Yoplait. It is almost like a desert to me. Within 2 weeks the flame was out and all was normal! The big thing here is, to ask for help and stick with the program as sometimes time will resolve everything! Good luck!

tommagic1