Coping with Diagnosis Anniversaries

I was recently diagnosed with Interstitial Lung Disease. I am 88 years old and don't know when this started. I have lived a long and fairly successful life - retired from the Air Force 48 years ago - managed factories for 14 years and ran my own shop for the past 20 years. It was in my shop where I made metal parts for foam cutting equipment. It was also there where I inhaled metal grinding dust (without wearing a mask) which I suspect caused my current condition. I have an appointment next week at which time the doctor will tell me I am in the 3 to 5 years span of life expectancy. I can only suggest that anyone working in an environment where dust or chemicals are present to wear a protective mask.

That diagnosis for me was three years ago. I was as you were shocked that this was happening to me, and I like you lived a healthy lifestyle.
I have given up on some of the chores I used to to, but I still do all that I can. I have a garden and work in it and the flowers. Sometimes just sit out on the deck and enjoy the beauty around me.
I guess I am fortunate (?) Ones. I am not on oxygen. The only meds. I take are low dose (5mg) of prednisone And one Zyrtec a day plus vitaminsize and supplements. I live one day at a time.
My main concern is leaving my wife financially well off to live comfortably for the rest of her life and think she can.
I don'the fear dying but I don'the want to suffer. This is one thing I pray about is dying well.
I really enjoy life and honestly can say that I very seldom get depressed.
I will be praying for you and will share any information I may get.
I am trying to get into a clinical trial by Prometic life sciences of pbl-4050 starting mid year

Hello Charlene,

I just read your post and have great empathy for what you are enduring. I too was diagnosed in late April 2016. Some days are days where is just do what you did today. Except that i sleep or read or listen to music when i feel tired and mentally down. There is no rhyme or reason to why you and i find ourselves with this disease. Being a Christian, i know that God will bring good out of bad. A difference we have is age. I am 65. 28 is way too young to have to deal with something like this as you are doing. I can tell you that my wife died last June at age 50. My father and sister died in their 40s. So alot of this stuff doesn't make much sense to me. I send hugs to you and want you to know that I along with others are in this with you. For what my comment is worth, know that i care about you. Thank you for all of your posts here. They are always inspiring in ways i can't really describe. But they are. Thank you for your courage and for sharing how you feel.

Charlene,

I too remember the dates when certain
events and diagnosis occurred. April
13,2016 is particularly memorable
because it was the last time I
played golf. I had numerous SOB events
during the round. Although it's not a
diagnosis date, it's the day I
realized that something was seriously
wrong. I saw a Dr. the next day and
within the next 10 days was officially
diagnosed with COPD, emphysema, PF
and ILD. I have been on O2, 24/7, since April 23, 2016. At the time,
I really didn't know how my life was
about to really change from the life
I had known.

My prayers are with everyone I am 61 years old and have always been a very active person I was diagnosed 4/2/2018 I feel fine right now working,walking, etc I have a follow up CT in five months. I am so scared everything I have read about IPF is scary and sad my CT on 4/2 did not show any COPD or EMPHYSEMA thank you Jesus,but mild peripheral lung fibrosis and early interstitial pneumonia any advice I could get from others suffering would be appreciated

Charlene, I must admit I do not cope well with anniversaries and holidays any more. I lost my husband of 44 yrs in May 2016 after an 8 yr battle w/cancer and was diagnosed with IPF in May 2017. I think the stress and focusing on my husband's illness and not paying attention to my own symptoms definitely took its toll. It's a frightening and horrible disease and one that most ppl aren't even aware of; I know I had never heard of it, but now it is something that is constantly on one's mind. I almost wish they had never "looked under the hood" so to speak and that I was still blissfully unaware! I hope your day has improved and that you found the strength to better cope with the anniversary. I have found your posts inspiring as well as educational. Thank you for sharing your journey.

Charlene, I do not have PF but my father had it. His was not idiopathic and likely came from taking amiodarone for many years. I am working in drug research and always looking for new drugs to develop for IPF. While there has been progress, it has not been enough.

You seem like a wonderful woman and it seems so unfair that IPF has selected you. But I hope your journey with IPF will lead to positive outcomes. I have been inspired by your post and I am sure many others have as well.

Hi Charlene. April 2015 was my diagnosis if IPF. I was,also a healthy living, nonsmoking athletic woman...but 64 years old. I had been having symptoms, as I look in retrospect, since I was in my early 30s, and even underwent open heart surgery in 2014, due to increasing sob...I did have heart issues, but the breathing problems were my only symptom, and persisted post surgery. I had a brother and father die from ipf, and another brother has been diagnosed. I'm lucky. Pulm rehab, esbriet and daily swimming have kept me stable. I am grateful for every day and every breath.. but the future is scary. I tried to talk with my husband about what my demise will likely be like, and he just can't talk about it. I wish you well, and hope you survive for many years.

Hello Charlene,
I have followed the Pulmonary Fibrosis Newsletter as well as others like it for many years. It makes me sad when I read about young people, such as yourself, who receive this diagnosis. My IPF journey began in 2004 after a routine x-ray done during my yearly physical led to many follow up appointments at various Pulmonary offices.
My diagnosis became "official" the day after memorial day when I had an open lung biopsy done due to varying opinions by several doctors as to what the problem was. I received the news two days after my surgery that I was a "doomed man" (I was 56 at the time)and told I had 3-5 years. My condition "stabilized" more or less for a couple years with episodes where it declined dramatically. I was on oxygen by 2008 but continued to work as a staff member on our senior management team. 2010 saw dramatic changes taking place and by the summer of 2011 I was put on a transplant list. I received a single lung (by God's grace) in September on Labor Day 2011. I have been doing OK since then but still carry a lung that continues to be attacked by IPF (the one not removed).
My message for all readers is to never give up, never give in. I think my keeping a regular schedule each day and staying as active as possible, along with prayers, kept me in shape for the surgery.
I understand the fear and anxiety I hear from others as I had this everyday also. I pray for each of you for peace and healing.

Diagnosed with IPF 3/9/18 and started Esbriet 4/16/18, I have no anniversaries as yet. Hoping to have a long life, but only God knows our end. I believe this site offers the support needed by us. I count my blessings that I have had a long, healthy life, and only wish I had appreciated those years more. I am still dealing with the shock of the diagnosis and hope I will be here to celebrate many anniversaries, with minimal lung problems.

In reading tonight how the IPF diagnosis affected the lifestyles of its patients, I recognize as I approach 80 that my lifestyle changed greatly long before my IPF diagnosis 5 years ago. I'm not on any of the IPF drugs or oxygen, having remained on the well spectrum. In my 50's, arthritis made walking any distance difficult separate from being SOB. Soon spinal stenosis pain set in, aggravated by a fall that broke three bones in the lumber area of my back. Learning that lung disease can sometimes lead to heart disease, my current concern is AFib and being on blood thinners which led to a recent brain bleed. I've decided when you are fortunate to live this long, you have an abundance of issues. The AFib directly began after a round of radiation for a squamous cell skin cancer. I have always been proactive with my health care but too often I've found treatment for one thing leads to a new health issue. My heart goes out to the young people with this disease. The fatigue is relentless and I thank God for retirement. The encouraging thing I have to offer is that despite the high dry cough long before i was diagnosed five years ago, I have outlived the cough and others may as well with any luck at all. I am in a position to pace myself each day and do as much or as little as I'm able. Meal prep is my hardest task. I find it so difficult and painful that it is easy to simply settle for another sandwich and piece of fruit. I enjoy doing my own grocery shopping with the mobile cart and my errands although the following day may be spent mostly in bed. I do have family close who check almost daily and will run errands for me especially in the winter. I just received word, however, that I will lose my helper who comes 2 hrs/week and has been a God-send to me. Because such help will cease to be funded as of July 1, my cost will go from about $6/hour to $38.50 an hour. Because I live in low income senior housing, our apartments have a laundromat down a long hallway heavy with second hand smoke, laundry will become my biggest issue. My helper has saved me from assisted living since my diagnosis. If I were ever to pay $38.50/hr., I would want it to go to my helper who gets only $10, and not to an agency of sorts. Today I learned many seniors are affected by this upcoming change here in Dallas County, Iowa. To date I have only received a phone call. When I receive the official letter, I plan to take it directly to our local newspaper. Fortunately, my only losses in the February brain bleed were my patience and my FILTER for such issues as funds diverted from the disabled and from seniors.

Dear Charlene,
What a ride my wife and I have been on. I was diagnosed with IPF I 2007 following a lung biopsy and was given 3-5 years without lung transplant. At one point went through all the testing for lung transplant but was told I was too good and didn’t need one. In 2013 had open heart surgery. That same year it was determined that I had an auto immune disease, Sjorgens, that was causing my fibrosis. At that time, was given multiple medications. In 2017, I was diagnosed with pulmonary hypertension. I have gone from using 2 liters PRN to 6-10 routinely. I take an average of twenty four pills a day. My wife and I try to remain active. I am now 77 years old.

Does Black Seed Oil help or grapeseed oil extract?