How to Tell Others You Have Pulmonary Fibrosis

[Karl]

I shared this post directly on Kim’s article and decided to re-post it here. It works for me; Maybe it’ll work for someone else.

Years ago I learned an important lesson when I was diagnosed with bladder cancer. I was reluctant to blast the news out to the family and asked my wife to let me share the news on my own time.

That was not the fair or right thing to do. She suffered greatly by having to bottle up the news. Knowing what she knew and not being able to share it with the family was tearing her apart. She needed support just as I did. When I finally woke up to the fact that I was being selfish and hurting the most important person in my life, I told her to go ahead. It was a sudden relief for her that made me feel much better.

That’s all long past and then I was diagnosed with IPF, this time getting the news from my Dr with my wife. When we got out of the office she was immediately on her phone texting our children while I drove home. We let them handle the grandchildren. We are both much better off taking this approach.

The trauma surrounding IPF diagnosis is enough without putting inhibitors on spreading the news with family. As a IPF patient I feel far worse for those that care and worry about me than I am about what I will/may eventually go through. We are all in a much better place because my wife shared the news quickly. Each family member handled the news in their own way and my wife is not a basket case from bottling up the news. I highly recommend the approach.

Handling friends is different. When friends ask the typical “Hi, how are you” greeting, I simply say “I’m ok, although I was just diagnosed with IPF. How are you?” When they ask “What’s that” I tell them it’s a fatal, incurable lung disease. When they start making the “I’m sorry” sounds I simply tell them, “That’s ok, it is what it is.” I’m not one that wants sympathy, just acceptance of reality.

The fact is we’ll all die of something. I know that if I don’t die of something else first, I’ll die of IPF. Frankly, I hope I’ll keel over and die of a heart attack mowing the front lawn first but I can’t control that. It is what it is.

[Charlene Marshall]

Hi Karl,

Thanks so much for your post, and sharing your experience with this very important topic. I hope to write a forum post about this today too, as I am actually fearing that being as open/honest/transparent about my illness hasn’t been the right thing to do, which has left me feeling very frustrated. Like you, I don’t think it is wise to keep it a secret – and it isn’t anyways, as my workplace, family and friends already know about it – but going forward it is going to be about finding that balance for me.

I so appreciate hearing the difference in your approach between sharing news of your bladder cancer vs. IPF (that said, I wish you never had to share either of these things) because this is a tough topic for me lately, so hearing about your experience has helped. I can imagine it has also been very helpful for your wife to share the news openly about your IPF, and have that support.

Were you still working when you shared your news of IPF with an employer? My employer had/has been quite supportive with the information, and making accommodations for me but as of late, they seem to be dangling it over my head about how much “work” its been to accommodate my illness, or I feel as though I am getting my hand slapped for needing them. Its really tough, and I don’t regret telling them but wonder if I shouldn’t have said as much? I thought the best approach was being as open and transparent as possible.

Hope you’ve had a nice weekend and thanks for sharing your experience with this very important topic.

Regards,
Charlene.

[Sandra Vanzyl]

Hi Charlene, I do hope you know that your employer cannot let you go because of your illness and they have to keep paying your benefits while you work through this IPF, are you looking into transplant at this point, as you know I am and have all my assessments done all with great results (meaning there is nothing else wrong with my body !) and my boss can’t wait for me to return to work which may be months still but if I can return that is my plan ….I loved my job , it was a huge part of my life Charlene….feel free to email me at [email protected] anytime my friend ….we will beat this together ….sending virtual huggs to you !

[Charlene Marshall]

Hi Sandy,

Thanks so much for your reply on this tough topic, it is certainly one I am having a hard time working through. They are being accommodating, but we’ve had different chats with my Manager that lead me to fear she they may be approaching the capacity at which they can make accommodations for me. That said, my doctors say I can continue to work so as far as I understand, yes, they have to accommodate me. It’ll be one heck of a fight if they don’t, cause I can’t afford to financially give up work right now I don’t think (that said, sometimes I really want to try). Sadly, I got so worked up/mad last week that I wrote my resignation letter but realize now it may have been a bit premature.

I am so glad to hear your assessment has gone well, that is wonderful news! Are you just waiting for the answer now from the transplant team? Let me know how things go 🙂

I so appreciate your sharing your email with me, I may end up emailing you about the work struggles if I fear they aren’t going to continue accommodating me. The good thing is, our HR Director is wonderful and she would know all the rules applicable to supporting me through a critical illness in the workplace, whereas my Manager might not know. One day at a time…

Hope you’re doing well and looking forward to the holidays!

Warm regards,
Charlene.

[Karl]

Hi Thom, You commented on my post above about how to handle the comments from people when you tell them you have IPF. Apparently you have just been diagnosed and have the same kinds of questions and feelings I had when I was first diagnosed 3 or 4 months ago. I’m 81 so my “normal” life expectancy is not huge. My diagnosis is “light, early stage”. I get short of breath easily but I’m not on oxygen at all. And yes, I just tell people “Hey, it is what it is”.

I have joined a Pulmonary Rehab group twice a week and I want to improve my strength and stamina while I huff and puff. I recommend rehab highly. Since I have none of the extensive issues most people with IPF have I was reluctant to start drug therapy at first like you. The thought the side effects of a life extending therapy did not set very well with me since it may or may not not extent my life. There are good statistics that say it will, but not at 100% confidence level. And I’m at a point in my life where I am not afraid of dying, it’s a fact it’s going to happen probably within 10 years anyway. Many of my friends are long gone. And since I have none of the extensive issues most people with IPF have, I have developed a rather cavalier attitude about my disease. I may regret that someday but for now it simply is what it is.

However, I started 150 mg Ofev mid October 2018. In the first week I had no side effects, none! After a week I began getting occasional Montezuma’s revenge and some nausea, more like an empty stomach feeling. My appetite is great and I’m not losing weight which is one of the concerns Drs have. Long story short my quality of life deteriorated to the point that I complained about it and my Dr reduced the dosage to 100 mg. I’m now on the 4th day of 100mg, still too early to see if the side effects return. But I have learned a couple of things others have suggested about taking Ofev. 1. Take it with protein foods (not supplements). 2. They want you to take it 12 hours apart. Try to adhere to that. I try not to allow less than 11-1/2 hours between breakfast and dinner. That’s inconvenient for me but I’ve learned I’ll pay the price if I allow less than 11-1/2. 3. I’m a foodie. I love spicy foods, used to eat too much fatty foods, etc. Don’t do that. I do violate that rule particularly at lunch but I’ve learned the hard way not to do it very much. 4. Snack between meals and stay hydrated!

There are a lot more people on the forum who have far more experience with these life extending drugs then me. And everyone has different side effects. I can’t speak to Espriet but don’t hesitate to take Ofev. Your family will appreciate the effort you’re making. They don’t want to lose you. That’s more important to me than my quality of life complaints. And I may change my mind in the future, but for now I’ll take Ofev.

I’m in Atlanta to answer your last question. Where are you?

[Charlene Marshall]

Hi Karl,

Thanks for such a thorough reply to Thom, I am sure it is appreciated and as always, I like hearing about how you approach life with your illness. I’ll keep my fingers crossed that side effects don’t develop with the reduced Ofev dose! Thanks for the tips on managing this medication too; really helpful reminder of staying hydrated too! This is something I often forget about and pay for it later.

I hope you had a nice Christmas, and wishing you all the best in 2019!
Charlene.

[NanaJane]

I asked this question somewhere else and then found this forum topic.  I was diagnosed with Advanced Small Cell Lung Cancer that had spread to my liver exactly one year ago.  This looked devastating and fatal at the time but somehow it was easier to tell people that I had SCLC – at least they knew what it was and realized without my saying it that I was probably terminally ill.  Immunotherapy and chemo from January to July successfully treated that however, and I was suddenly reporting that I was in really good shape and went on vacation.  We were all very relieved.  Then the coughing and shortness of breath started and by late September I knew something else was wrong.  A closer look at my CTscans from the past year showed that I had some minor PF (and probably had had it for years due to a previous work environment) but no one had looked that closely during my cancer treatment.  They were focused on the tumor which was much more obvious but once we looked we could see it blossoming each six weeks.   My Dr. explained that the treatment had actually kick-started the IPF as my immune system focused on the cancer cells.  So in October I had to go back to friends and family and deliver the bad news of IPF.  It’s been a roller coaster for all of us!  I tried to soft-pedal it with friends but because there is nothing else wrong with me and I look like a healthy, active 71 yr. old, they couldn’t understand when I begged off activities and started curtailing my participation on committees, weekends at the beach, etc.  As I try to explain that I am truly seriously ill and have a shortened life ahead, many don’t hear that message and I find myself constantly having to say no to unrealistic invitations.

I’ve always been a happy, optimistic person and feel a lot like Karl that I will do as much as I can but that I know there is an end in sight and that’s just the way it is.  As I’m learning more about how to live with this my Dr. and I are making choices that value quality of life over quantity – I am on Cell-Cept and Azithromycin  just to control the symptoms and possibly slow the progression but at the “severe” stage I’m not interested in trying the other drugs.  After six weeks my cough is slowly getting less troublesome and I can actually take somewhat deeper breaths.  I’ve asked two good friends who are retired medical folks to take over the job of explaining to others who insist on denying the reality.  That’s helpful….

 

 

[Charlene Marshall]

Hi NanaJane,

Yes, this is always an interesting topic for me as well because its tough to disclose a disease that many have never even heard of. On top of that it is one of those “invisible illnesses” for the most part, with the exception of when we’re using our supplemental oxygen. Sorry your friends are having a tough time understanding why you need to bow out of plans, or reduce your time socializing with them, that is such a tough position to be in.

I have unfortunately heard of different treatments for cancer causing IPF, which is so sad to me because people who endure that type of treatment shouldn’t be faced with a secondary problem like IPF that is also life-threatening. Sorry to hear this was your experience! It is so hard to try and explain the gravity of this disease when it is one others haven’t heard of, isn’t it?

I am glad you’re choosing to focus on quality of life vs. quantity, I think this is important albeit tough to do as well. Has your doctor then confirmed you are in the “severe” stages of IPF Jane?

Thinking of you and hope you have a nice weekend.
Charlene.