[Aishia Moaishia]

Hi everyone,

I am so thankful I have stumbled across this forum. am newly diagnosed with IPF and am still reeling and spinning from it. I am in a very positive and hopeful place for the most part but do have moments of fear and insecurity which I imagine is natural.  here is my story so far….

January 2015 I had pneumonia. My primary care physician ordered a chest x-ray and prescribed me antibiotics. Once I felt better she ordered a follow up x-ray which I procrastinated and finally went in for in March. That x-ray still “looked funny” to her so she sent me to our local pulmonologist group. In April 2015 I was seen by Dr. M my current Pulmonary and had PFT and an x-ray. He told me I had Interstitial Lung Disease, asked me a bunch of questions, and sent me for blood work.  I cam home and researched ILD but didn’t really think much of it. It looked like it wasn’t a good thing but I felt fine and had no symptoms so I didn’t think much of it. August 2015 Dr. M dud a high Resolution CT and a few days later I had a bronchoscopy with lung biopsy.  At this point the HRCT showed some sprinkling  of scarring in my lower lobes Mostly in my rt lung.

I have proceeded to follow up with Dr. M every 4 months and have had HRCT scans in both December of 2016 and 2017. My O2 saturations remain in the 90’s at rest and with activity (fast paced walking up and down the hall). My most recent PFT in November and my HRCT in December have Dr. M slightly stumped. The HRCT shows mild progression (define mild?) some honeycombing and now some scarring in the upper lung. My PFT result state my lung volume is 50% of capacity and my diffuse is 33% of capacity yet my O2 sats are good.

After this HRCT I did more research and in occurred to me that this is NOT good. We will skip over the part of my story where I completely lose it… Dr. M has referred my to Seattle to the UWMC Interstitial Lung Disease Clinic and my appointment is in 2 1/2 weeks.  Dr. M nailed down my diagnosis as IPF. I have no auto immune diseases, no environmental exposures, no familial history (my grandfather on my moms side died of PF but it was environmental, as far as we know). I hate to even admit this but I was a smoker for 25 years. 🙁 I was on my journey of becoming a non smoker beginning October of 2012 and can say I have been completely smoke free for 16 months. I will NEVER smoke again and it is the only regret I have in my life. Although most of what I have researched leads me to believe that ILD are not generally smoking related, or cause by smoking. I am not on oxygen, just started Esbriet last week and feel pretty good. I have been coughing a lot lately and get a little short of breath when walking a distance but I had sinus surgery in December and am still healing (lost of post nasal drip) from that.

I do not want to be my disease..

I am young at 40 years old. I work full time for a hospital as an audit coordinator in the business office.  I work with billing, medical records, health insurance, etc. I am very fortunate that I get to work from home. I also go to college full time and am finishing my Bachelor of Science in Public Health, Healthcare management and policy with aspirations to obtain my RN and Masters degree in Midwifery. I am passionate and fascinated with pregnancy, childbirth, and women’s healthcare. I have been married to my best friend and the love of my life for nearly 21 years. We have 2 awesome kids who are 21 and 20 years old. I look forward to being the best grandmother ever, although my kids aren’t even close to becoming parents. We have 2 dogs a 14 year old Golden Retriever/Blue Heeler mix and a 8 year old Boxer and 2 cats. I enjoy reading, yoga, traveling, art, interior design, cooking. My family are my greatest joy! I have so many dreams and aspirations. Sometimes I feel like this is a really bad dream.

I hope to have more answers after I am seen in Seattle….

 

 

[Aishia Moaishia]

Hi Charlene,

I am so happy that I have stumbled across the PF forums so early. The reason I take a full glass of water is because once upon a time I was taking a different medication (unrelated to PF) that also had stomach upset as one of it’s major side effects. Drinking a glass of water with it really helped to avoid the stomach issue so I thought I would try it with Esbriet. Typically I eat half my meal, take my med, drink half my water, eat the other half of my meal and finish my water with it.

As far as I know I have IPF. This is a very new diagnosis for me. I was diagnosed with Interstitial Lung Disease in 2015. Just recently (end of December) my pulmonologist has diagnosed me with IPF and referred me to Seattle, to be seen at the UWMC Interstitial Lung Disease Clinic and put me on Esbriet. My appointment is in 2 weeks.

[Aishia Moaishia]

Hi Shaw,

I am new to Esbriet as well. I just began taking it on Feb 4th. I am mid week 2, and taking 2 pills, 3 times per day. I am typically the type of person that if “stomach upset” is a side effect I will most certainly suffer from it. I have been so fortunate I have had zero problems.  I always take my medication with a meal and I eat 1/2 of my meal, take med, eat second 1/2 of my meal. I also try and drink a glass of water as well. I am hopeful that as I continue next week to 3 pills 3 times per day that my luck continues and I remain stomach upset free. I have been playing around with how much food to eat and just this morning my breakfast was a banana and a cup of coffee and I did not have any issues.

Wishing you the best of luck!