Wrestling with the Reality of Our PF Diagnoses

This is a cruel illness, and what makes it even more cruel is the way it progresses. It's seeing my husband be stable, then rapidly lose a lot of ground, and what it does to him when I have to do what he can't do. Trying to get on a lung transplant list isn't easy, as we are finding out. I pray for everyone with this terrible condition.

Thank you for sharing your story, Kim. I have read some of your other stories. You are an amazing woman in the way you are handling your disease.

I was diagnosed with IPF in October of 2015. I am taking Ofev, and so far the IPF is remaining stable. I believe that because I was fairly healthy and was prescribed Ofev while the disease was in it's early stages, are big reasons for the stability. I try to do all that I can through exercise, diet, and staying away from those who are sick to stay as healthy as I can. I am 70 years old, and I know at some point in this disease I will have a decline. My husband is the one who thinks I am the exception and that my lungs won't worsen. My son doesn't want to talk about it. In the last few months, my daughter is finally understanding that I need to limit the number of activities I plan in a day, and can't do everything I used to do. Reality tells me that I will not always remain stable, but I am taking it one day at a time.

Thank you for reading my story. Take care.

Leslee

Kim:
It has been a blessing reading your column. I appreciate your honesty and openness talking about your journey. I have been through being on denial to being too blunt about my disease. Reading your articles has helped me communicate with my family and friends better.
I think of you and admire your strength and desire to help others. May God bless you and give you the courage to keep fighting.
Sincerely, Maribel

I would like to see an article on how to prepare your spouse and family, both emotionally and financially to be prepared to go on without you. It's difficult to find a way to bring this up for me and I'm sure for many others. A checklist of the issues to covered would be helpful as well as a template for a financial plan for the future of those left behind.

You wrote that all so Beautifully, Thank you for sharing your story?... I have Pulmonary Fibrosis, And I think I'm the exception ??.., lol... my husband copes with this by humor?, most can't understand that, but I do, and I love that he still makes me laugh.

IPF snuck up on us. My husband is a retired family practice doc. He refused to believe his breathing difficulty was more than allergies. Took a year for him to get it checked out. He needed 3 LPM oxygen then.
Before the lung biopsy he already knew what it was and told me he wouldn't be around much longer. I was angry and didn't believe it.

He's at 8 LPM now, just 5 months later. It's still hard to believe how short our time is. We're still waiting to get Esbriet, but know it's probably too late. He cancelled his July appointment at Vanderbilt and we started Hospice.
Hardest thing for me is to hear him say there's nothing that can be done and to accept it.
I watched my Dad die in 3 months from lung cancer after diagnosis. But he had been a smoker. Terry never smoked. I think that's what makes this disease so sucky. No known reason and no cure. He's not even 70!!!

I was diagnosed Dec. 2015, it was not until Jan 2017 that I had the reality of PF slapped in my face. Prior I thought of it as nothing more than a bad case of asthma. I just recently also found out that I have Sarcoidosis and my dr. is holding back on putting me on Esbriet until he goes over the blood tests and my last CT.
I am not sure what will be discussed and talked to my family that there might be a possibility that this additional issue might reduce the impact of being put on the Esbriet. My family does not want to talk about it, and say that I need to just wait until my dr. talks to me. But I try to explain to them that I have to acknowledge the possibility as I do not want to be blindsided by such news.
I know my family is scared but sometimes I wish they would just let me vent my fears without telling me not to get worried or talk about something that has not happened.
I don't think they totally get that I am dealing not only with my own mortality, but also wanting to make sure that they will be ok too.

Thank you Kim. I'm struggling with this now. My IPF is advancing quickly so I don't believe I'll make it to a transplant evaluation in time. My husband is my primary caregiver and we are finally at a point of having the hard conversations. I'm glad for that but sad at the same time. It's very hard to think of my family going on without me. I know it sounds very selfish but I've learned it's ok to have those feelings too. God Bless all going thru this.

Thank you so much for your article, I felt like you were writing my experiences thus far in my journey with IPF. I am very newly diagnosed by thoracotomy in August and began Ofev soon therafter. Everything is so new, the oxygen, the side effects from the Ofev, the difficulty my loved ones have in their acceptance of my and their "new normal". You spoke so eloquently to express both "patient" and loved ones emotional reponse. I often feel alone but do understand that it is in a way an expression of how much I mean to them in their inability to (at this time) talk about what is so real to me, it takes time to process and everyone processes at a different speed. God is still so good! I have a wonderful medical team and continue to work full-time as a nurse case manager, my oxygen is often an ice breaker with some clients. Thank you again for your blog it is a blessing.

I was diagnosed in 2016, but had it in 2015. I have been on Esbriet since July 2016. So far, the disease hasn't progressed. I can only take two pills at most meals, but they seem to be slowing the progression. Three pills really effected my quality of life, but I do take them occasionally.
As I am not on oxygen and look good, everyone thinks I am doing fine. I guess I am and have kind of been in denial. I haven't gotten done,everything I need to do. Praying I get to finish up things.I'm not really afraid to die I just don't know how my family can handle things when I am gone.

My grandmother, grandfather, three uncles, two aunts, my mother, and two cousins all died with PF. In every case, the disease caused them some difficulty but once they had the biopsy to confirm that they had PF, they went downhill fast and died within twelve months. We remaining siblings and cousins won't tell our doctors about our family history for fear they will request biopsies. We are all also afraid of losing our insurance benefits due to "pre-existing" conditions (once the law is changed). Two of our aunts refused biopsies. They lived with PF for about ten years and lived to be a little over 80. The others all died in their fifties and sixties.
My question: have any of you readers had the same experiences?

What a moving article Kim - you have really helped me cope better with my husband's disease. He worries a lot and some days it feels like we talk only about that. I try to encourage him and think positively but inside I find myself sick with worry. He has been on Esbriet about a year & 1/2 and the dr's say that his disease is about the same. I notice he is getting very thin and tends not to eat much. His disease is believed to be partially caused by acid reflux. We have just purchased a smaller home and are taking our time moving into this smaller, one story house. Financially once we sell the larger home and move, I will be able to handle the finances with my job and this will allow him a the flexibility to lessen his hours at work should he need to. The move is difficult and we are so thankful our grown children are there helping and we are so thankful that we are able to do it very slowly so we can do some things to the new home and move in smaller trips. Your articles have really kept me focused on the importance of my role and I am so thankful I found you!! You are a blessing to me.

Would like to know what you know of last stage. My husband has declined the last 6 months. Had 4-5 oxygen , lost 23 since march, no appetite, no energy, very depress, coughing increases, not being able to be around people cause can't talk much. having Ct to check for lung cancer. I have read so much but feel I don't know much. On top of this horrible illness he also has bad heart and clogged Artieries in the leggs. Just Trying to be strong at this point.

I am 60 yr old wife, mother and grandmother. I was diagnosed with IPF feb, 2013. Was put on OFEV. Husband's acceptance was- acting like I was making it up. Extremely hurtful to me. After me crying and calling the nurse to be sure I heard them correctly, doctor had a talk with husband. He was not much better but did admit IPF. We did learn to put my phone on video during doctor visit and just record what the doctor was saying so we could replay it later.
About six months ago, I became very depressed and was sick of having cannula in my nose 24/7 since diagnosed also dragging around oxygen. Husband pretty well leaves my care up to me. I stopped taking my OFEV thinking nobody cared. I finally told husband after I became sick. Recently we went to pulmonologist. After doing my PFT test, my lung volume has declined from 80 to 53%. I did not think that taking the OFEV meant that much but now I know it does! I am back on OFEV and going to counseling. I still feel alone in this disease. I wish there were some way to convey my feelings to my husband, but there is not. Guess I'll deal with it alone.

Enjoy your news letters so much. Has really helped me mentally. We have a large 2story house and big garden and yard which I have always taken care of. I do have a girl that moves for me. And She cleans my home once a month. I can tell the stairs are getting harder, my washer and dryer are in basement so need to go there and also my car is there too. I would like to go to something smaller on one floor but my husband has no plans to sell . He has started falling and I'm the one to get him up

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KIm,
I was diagnosed with NSIP in 2015, not on any meds, no rehab, just scans and X-ray , and the 6 min. walk at the beginning . What kind of exercise should I be doing , hospital says they don't do exercise for this only cardiac rehab. I will see my Dr. In Chapel HIll,NC in Oct. Don't even know what to ask him, husband and family think I'll be all right . I'm scared and don't want to wait and do nothing until it's too late.