Why I Enjoy Having Nothing to Do Since My Diagnosis

Hi Charlene. This is Don in Vancouver. I can totally relate to everything you feel. I have the same struggles and we probably have the same fears. I know what it's like to wake up feeling glued to the mattress, so tired you can't get up. You're not alone. Hang in there! Embrace the experience and know that this is just one step in the experiences of our eternal progression.

I pray for your continued strength dealing with this ugly disease. Stay strong and healthy. Friday morning I lost my husband of 42 years. He too had IPF. The last couple of months were a struggle. He developed pneumonia at Christmas and had a hard time recovering. He had Hypoxia with Syncope the last few weeks. During an episode he broke his leg. Surgery was done to place a plate and screws. He passed away 2 mornings later. I thank you for your blog. I will keep you and all of your followers in my continued prayers. God Bless you. Catherine

This is me, but I never knew how to explain it. My relationship ended due to the fact that they don't understand why I never wanted to do anything. I really enjoy quiet time,reading,watching TV. I try and preserve all my energy for my full time job of 22 years and my 16 year old daughter's volleyball games which has are draining but that time together is the highlight of my life and I won't give it up because she will be off to college soon. My ex wanted lots of my time and attention for her to go do all this stuff but there was no energy left.

Hi Charlene...great column. I can truly relate to this. I still work full time and I've come to the conclusion that my weekends are spent resting up so I can make it through another work week. I'm a single parent (daughter 20 in college full-time) and I need the health insurance so I have to work as long as I can. I lost my job of 29 years last year and started a new one shortly thereafter. I tried to keep my disease a secret as long as possible but once I had to use my o2 at work for walking around, mostly going to the 2nd floor, I had to tell them. Needless to say I was quite concerned over telling them and what they would think, but they have been supportive and now I just backpack up and walk where I need to go. My O2 Odie (the name I gave my o2) is right here by my side. Once I go on it fulltime I'm not sure what will happen. I still do stuff on the weekends, but it too tires me out. I feel bad for my daughter, who is now my caretaker and my boyfriend who are pretty understanding but I feel guilty putting them through this disease (I met my boyfriend during the diagnosis stage and was upfront with him). I don't feel it's fair to him to deal with this disease. Most men at my age are looking for retirement and going and doing things and I'm going to be limited at what I'll be able to do. If my boyfriend decided he couldn't handle this anymore, I've decided to remain alone. Unfortunately, I don't have a close circle of friends like you. Thank you for your articles, I enjoy them very much and I'm sorry that someone so young has to deal with this nasty disease. P.S. Sorry I went off subject! :)

Hi Charleen,
Thank you for your really insightful columns which give me the opportunity to read what other PF patients have to contribute as well. I am new to this site and very impressed with the generosity and honesty in each of the posts I have read. It really is a comfort knowing others are trying to make the very best of their lives in the most comfortable ways for them while continuing to relate as well as possible with friends, family and co workers. It seems we are a pretty tough group who occasionally can come here to be real. From my heart, thanks to all.
Karen

Hi Charlene;

This is my first time posting to a board. I am also a fellow Canadian but now reside in the northeast in the US. I really enjoy your writing. Trying to figure out if I should move back home. I am new to all of this so it takes me a little while to digest.

Continue writing for I enjoy your writing.

Kenny

I was just diagnosed with pulmonary fibrosis. I had never heard of it. My doctor put me on steroids which is terrible. I’m also on oxygen which is very helpful. I told my doctor I need to stop taking the steroids because it makes me so sick. She said I can’t stop taking the steroids because it will make me sick. I plan to get a second and third opinion on how to treat this disease. I’ve had the CTScan . I live in New Jersey and so far I haven’t been able to find a good pulmonary fibrosis doctor, I have seen three and they were terrible. If any one that live in New Jersey know of a good pulmonary doctor, I would be greatly appreciated.

Hello Charlene: So sorry you are having to deal with the IPF.

I'm a old guy with IPF but there are things to do. Water faucets dripping. Car brakes to replace. I did hire a yard work guy. That's a bit much for now but sure wish I could do it. Its good exercise you know.

I have been dealing with this IPF for five years I'm sure. Diagnosed two years ago this month and went on Oxygen 24/7 soon after. I mostly want to let you and the others know about PFWarriors.com. lots of info there with some videos. I get to go to a support group at UT (University of Texas) Southwestern in Dallas, Texas, and hear lectures from doctors and other specialist. Thought I would share this info. Last Saturdays video not posted yet. Maybe soon I hope.

The best to you. Hang in there.

I must also say I hope all are ready for our end time. I need to tend to the funeral things. I'm a Christian and continue Bible study. There is no anxiety here. As I understand Scripture, I'm in good shape for my end of life here. My hope is that all others have this same hope and peace of mind without anxieties. Cheers!

Hi Charlene,

Last week (4-8-18) I moved to the single large brown 801 mg Esbriet tablet after finishing the initial dose of the 267 mg white tablets. All was going quite well with no side effects. On the 4th day (4-14-18) a rash developed. I contacted my Pulmonolgist and we decided to to stop Esbriet for now. I may go back to the 3 small white tablets 3x/day once the rash subsides.

The rash got progressively worse turning into a case of full blown urticaria (hives). I went to my Dermatologist who gave me an injection of Triamcinolone, a Triamcinolone cream, Hydroxyzine HCl for nighttime itching and recommended Allegra taken in the morning. After another 2 days with no relief and further progression of the rash I went to my primary care physician (4-18-18) who gave me an injection of Dexamethasone and prescribed a 2-week regimen of decreasing doses of Prednisone.

I am seeing some relief but having trouble sleeping due to the itching and some acid reflux which I get from time to time. I decided to go down to my den and lay on the strato lounge and turn on Pandora to the Enya station. I find the music soothing and relaxing when stressed.

I noticed that you visited Australia. I found out when I was 16 that my birth mother who died in a car accident when I was 2 was Australian. My father remarried several months later. The accident occurred in Germany where my father was stationed. He and my mother were out celebrating as I took a turn for the better in the hospital as I was suffering from pneumonia.

I assume because of the guilt and pain my parents didn’t tell me until I was 16 that who I thought was my mother was actually my stepmother. This was a great shock to me. I remember going straight to my bedroom, lying down and turning on the radio. The first song playing was “There Will Never Be Another You,” by the Australian Group, The Seekers!
It wasn’t until about 15 years ago when I was about 55 that I found my Australian family in Melbourne. After entering my mother’s maiden name into the National Australian phone book on the internet, I came up with a list of 25 names and addresses. I wrote a letter including personal information about my mother and sent the letter to the first person on the list - asked if the information was familiar to write back, or send my letter to the next person on the list.
About 10 weeks later I got a thick envelope from my mother’s cousin. The letter was thick because she photocopied 10 pages from a family book that was published in the 1970’s. It contained my section of the family tree. You can not imagine how blown away I was when I came across my name with birth date!!
What I didn’t realize was that there was a second thin letter postmarked from Australia. It was from the sole surviving youngest sister of my mother. My Aunt Win who will be turning 90 next year received my letter on her 70th birthday!
A few years later I made the trip to Australia and met Aunt Win and my 3 first cousins and my mother’s cousin, who everyone calls “Babe”
This was truly the most emotional, heartwarming event in my life. We were treated like royalty everywhere we went as we met relatives in Melbourne, Geelong and my mother’s birthplace - Horsham.
I kept a diary each day of the trip along with photos. My Aussie family knew about me and kept memorabilia that they gave me. I found out that my Australian grandmother wanted to take care of me after the accident, but my father’s mother also wanted to take care of me and as it turned out I grew up in the USA. I wonder how different it would have been if I had grown up in Australia.
I know now that it would have been among a loving family Down Under.

I could go on but wanted to leave with one final amazing item. My first cousin John has a mirror image of my family. He has a wife quite similar to mine, an two sons that are each a year younger than my two daughters. My daughters tell me how similar I am to John, my laugh, demeanor and sense of humor.
We had many phone conversations and emails before the trip. I found out that John’s wife’s favorite singing group is The Seekers. She has attended many of their live concerts. She sent me a live version with artists commentary of “There Will Never Be Another You.”

It still gives me chills as I write this. Who knew when I penned what I might call “A Message in a Bottle,” would return a treasure of love!

Kind regards,
Al