Telling your family

[Wendy Dirks]

Hi, Michael – That’s a tough one. I put off telling my adult son immediately but after a couple of months I realised I had to do it. Since my dad died of IPF, my son knew immediately what the outcome would be. Unfortunately, he died before he got the chance to see me while I was still alive. Neither of us expected that. I think it’s best to tell them as soon as possible so they have plenty of time to process it in advance – and because life is full of uncertainty.  Are you receiving palliative care? My palliative care team are incredibly helpful and experienced with all of these issues and if you are, they might be able to help you plan a strategy.

[Darcy]

Hi Michael,

I just saw my doctor today and was diagnosed with IPF. I had an inkling I had it because of an earlier CT scan that showed fibrotic changes although I had received no follow-up for that so today was the day I really knew. I don’t know what your situation is but my disease is still mild. I told my kids I was seeing the doctor today and told them I would group text them the outcome and then talk individually. So, I sent it immediately. I just felt they are all adults and we have to handle this together so no point pussy footing. I accentuated the positive news and let them know I am likely to have a few good years left so let’s just enjoy them. We can deal with the more difficult stuff when it manifests. If your disease is more progressed then it might be harder to talk about with your kids right now but I bet they would rather know so they can be a support. They are probably tougher that you think and might even get upset if you try to hide it. At some point we won’t be able to hide it, will we? So, better just tell them in the most honest way you know and let them know you love them.

[Patricia Osback]

Hi Michael

i was diagnosed with IPF and I told my oldest son right away. I told him what it was and the eventual outcome, but- I also assured him that I was strong and medical science is always changing and there might be a cure or medications to halt the fibrosis hopefully in the near future.   He understood and he and his kids spend a lot of time with us.   Please tell them soon so they can process it and accept it.  Stay strong and keep the faith.

[LARRY]

Itold my children as soon as I was diagnosed . The first thing i had them do was to look up what it is, how it can be treated and last and probably most important that many patients live for over 20 years with this and that i would be able to take Esbriet to slow down the progression of the disrase. I keep in touch at least once a week with updates. 1 year on Esbriet and my deteriation was only 2%
As long as you keep in touch and are honest with them, they will understand

[LARRY]

You must tell them. I told my children right away. I also told them to read up on it before jumping to any conclusion. I have had IPF for a little more than a year now. I started Esbriet 2 year ago and my oxygen tests inhaling and exhaling had only deteriorated 2% in 2 year. It is helping slow it down. Make sure you call them regularly, I would recommend weekly, and update them. My dr. Is very optimistic. Says I could maybe last 20 yrs. Not on oxygen yet. Hope your children can be positive and optimistic.  It sure has helped me. I am 65

[Marianne]

Hi Michael –

I have 2 adult children.  My youngest, a son & his wife, were with me when I received the diagnosis from my pulmonologist.  I was diagnosed in May 2019 after 8 months of testing.  One bright spot on my diagnosis day before my appointment they told me I was going to be a grandmother for the first time in January 2020.  My grandson arrived in December 2019.  My children, now 35 and 40, still don’t like to discuss my disease.  They know it is a serious, chronic disease.  My youngest was really concerned and upset when I had to start oxygen in March 2021.  He and his wife had recently lost her grandmother to lung cancer.  She had been on oxygen for a few years.  Right now my disease is stable and I only use oxygen on exertion.  I do not yet need it at night.  Both are aware of what this disease does to people.  My oldest, my daughter, a veterinarian, has many friends in the medical field who she frequently reaches out to find out extra information about IPF.  She actually reached out to a local cardiothoracic surgeon before my lung biopsy.  She lives in different state than me.  Hope this helps.  I think the sooner you tell your children is better.  Good luck.

Marianne

[Kevin]

I was diagnosed February 2020 after about three months, after I accepted what it meant, I just sat down and called each of our children and told them. I said that for now I was ok but this was progressive and would at some point would probably need help. That was the hardest part because I always was the one to give the help and assistance, I believe this one of the hardest part of IPF.

[James]

My, next to telling my bride, telling the children was really hard… no, rough to do.

My son and his wife, my two daughters and their husbands, each got a phone call as they live many miles away.  I made sure their spouses were with them as I told them… as an engineer I tend to be frank, which I feel lessened the shock of a flowery explanation.  I could hear the sobs from each… it tore me up.  There is no easy way, but a necessary one.

[fred-schick]

I was diagnosed nearly five years ago and my wife was present.  We knew from the radiologists report that I had Pulmonary Fibrosis.  Part of the testing, to determine if eligibility for OFEV or Esbriet, required testing by a Rheumatologist, who both of us knew.  He was harshly candid in his assessment and we wondered if we should stop at a funeral home on the way home.

The Pulmonologist, who made the official diagnosis, was very kind and assured us that he had patients  who lived far beyond the 3 to 5 year statistic that frequently appears on the Internet.  He also insured me that he would keep me comfortable during my IPF journey and he has.

My first year was very depressing.  Both Ofev and Esbriet made me very ill. Eventually, both the doctor and myself agreed that quality of life was more important to me.  When this decision was made, we  shared it with my adult children and ultimately with grandchildren.  I joined a pulmonary rehab program and a support group.  I also became an Ambassador for the Pulmonary Fibrosis Foundation. I walk 1t least 40 minutes every day, with my beloved dog, and stay active.  For the past several years, I have sought to limit activities to once daily.

I love the support I get from my family.  Everything is scheduled so that I can have an afternoon nap. I try to be as “normal” as possible by participating in local government, counseling new IPF patients, fund raising.  In closing, I recommend telling one’s family as soon as possible.  All of us need as much support as we can get!

 

 

 

[antny]

I’m with you Fred. I’m 78 and was diagnosed in April 2020. I tried OFEV but couldn’t tolerate the side effects . My sons know what I’m dealing with when I said that I’m in the fight of my life . However one son said “Dad, we know who the eventual winner is…the only question is …how long is the fight?” Truer words were never spoken. Telling your kids is up to you. Dealing with that topic is as personal as dealing with IPF…it’s an individual journey. Just like your decision to forgo OFEV due to quality of life issues, telling your kids is in the same camp…do what you can handle .

[Midge Sanford]

I was diagnosed in July 2019, at age 77, and did not tell my adult children for over a year. I agonized over this decision, but realized that being honest was the right thing to do. I called each of them and they very much appreciated it. I told them the name of the disease but did not go into detail about the seriousness of pulmonary fibrosis and how long I might live — who knows, anyway? They could look it up themselves if they wanted more information. My sister and my mother both died of a lung disease, but since I had always been so healthy, they were shocked (as was I) to find this out. My only symptoms are a dry cough and breathlessness when walking uphill (which I avoid!). Generally, when I think about making a decision I decide if I would regret it if I went in a certain direction and not the other.  I felt that my children would be even more upset if when I died I hadn’t told them. You have introduced them to the fact that you have a lung condition, which is a good first step. Best of luck!

[Christie Patient]

@holly might have some thoughts..

[Karen Martin]

Everyone needs time to take in this diagnosis, even your children.  I am in the camp that says tell them ASAP.   I’m also old enough to remember Sargeant Friday’s “Just the facts, ma’am.”  As was pointed out, they can (and very likely will!) seek out details on their own.  Each one has the opportunity to do that at their own speed and comfort level.   You may need their help down the line, so they will probably be thinking about that as well. None of us really know what is in store for us.  Live each day as best you can, rest when you need to do so, exercise as much as possible…and love the hell out of your family!  Good luck to you.

[Holly]

Hello, everyone. After a year of varying diagnoses and testing, my pulmonologist told me that I did have IPF. He tried to soften the blow by telling me I was an excellent candidate for lung transplant. I immediately began taking the necessary steps to qualify for the transplant list. This led me to talk to both my sister and brother, as I knew I would need their support as caregivers,  post-transplant. One positive result of these talks was a quickly arranged family reunion in Hawaii, which was wonderful. My siblings were ready for whatever was to come. Though my pulmonologist guessed that I’d have two years before needing transplant,  in fact it was only four months. So, be aware that stability only lasts until it doesn’t, and exacerbation can come without warning at any time. My husband was aware of the diagnosis, of course, but he seemed unable to really take it in, which may be a common reaction for spouses. I did not tell my daughter, Christie, moderator of this forum, though she was aware of ongoing lung problems. My decision to leave her temporarily in the dark stemmed from her own struggles with mental health issues at that time. Varying stresses in her life had come together to the point where I felt she might be unable to handle this piece of devastating news. I still believe this was the right course of action at that time, though when events unfolded, she did in fact handle the situation beautifully. She handled the crisis, and became my highly valued caregiver. In general, I agree that family need and deserve to know, and you deserve the support that only family can give. But, there can also be circumstances that might lead you to hold off for awhile. Best of luck to you all, and please consider transplant!

[Christie Patient]

Normally I’d say tell them as soon as you can and get past the uncomfortable and scary parts, and back to living. But as our case illustrates, it’s really situational. I was in crisis and extremely unwell when my mom was diagnosed. I found out when I had to, and I was in much better shape to handle it at that time. Part of me wishes I did know sooner, but I also wasn’t totally ignorant. I knew she was sick, and I was worried regardless of knowing the actual diagnosis/prognosis as soon as she got it. Anyway, it sucks no matter what, and it’s uncomfortable, but I think you’ll know what’s the right timing for you.

[Michael B Smith]

Thanks for all of your kind comments.  I haven’t quite figured out how yet, but I will be telling my daughters soon.

[Christie Patient]

Best of luck @michaelbs.  If at any point, they would like to speak to another daughter who’s been through this, I’d love to support them. Reach me at [email protected]

My column might also be a good resource for them.

[Michael B Smith]

Thanks Christie

[Jackie Kalina]

Strangely enough I just watched a biography of Jackie Collins, a women’s book author.  I had never read her books or realized how famous and wealthy she was.  The point of all this is she had breast cancer and never told her children the severity of the stage she was in.  She went back to London to visit her children and left saying “I’ll see you at Christmas” knowing full well she was very terminal.  Of course she died way before Christmas.  At the time, I thought “How cruel of her.”  Not giving them a “heads up” this was their final goodbye.  To be able to somehow embrace and savor every last word with their mother was denying them the gravity and finality of the moment.  She robbed them of that.  I have experienced the loss of most all of my family including my two adult children.  Oh, how I wish I could have imparted my deep love for them.  At the same time, one can not not process the finality of death until it happens.  Please don’t deny your children the chance to say goodbye.  Just my thoughts.  I’m an 81 year old and I tell those that come into my life and also ask them not to dwell on it. Much hope to you, Jackie

[John Kane]

I was diagnosed in May of 2019. My wife was with me for the post testing discussion with the Pulmonologist. We agreed that it would be best to tell both of our adult kids right away. Very glad that I did and have updated them after each testing testing since then. At this point our friends and relatives also know, the support has been unbelievable.

[MikeC]

Hi Michael, I think your children should know, for your sake as well as theirs. I was diagnosed with IPF in March 2020 and heard the terrible prognosis “3-5 years”. I made an appointment with the pulmonary department at the University of Michigan who confirmed my diagnosis of moderately severe IPF, but told me that 3-5 year expected life expectancy is outdated and started me on OFEV immediately. My wife was with me for both appointments and we decided after the second to tell my two daughters right away. I stopped working with the support of my employer and began spending as much time as possible with my children and grandchildren. It was difficult to talk about initially, but we got it out of the way and now I feel so blessed to have this time with them. Please don’t hesitate any longer, your children will help make the reality of this disease tolerable.

[Tim]

After my diagnosis I researched IPF and found that many of us live with it longer than
much of the literature shows. One of my daughters is a nurse and was with me when we
got the diagnosis. She has been quite helpful in explaining this disease to the other
adult children. They all took the news like adults. I think partly because I’m
81 and have survived 4 heat attacks, a 5 way bypass, 3 bouts with 3 different cancers and
a number of other maladies and am still here. I guess they figure IPF is not going to
take me down very soon as long as I’m careful. So.. I’d say that if your children are
adults they will probably take the news ok. I think its better to let everyone know
so they won’t feel so much pain if the end comes quickly and they wish they had known
while you were still here. Remember when you start each day that yesterday is gone
and tomorrow may never be yours.

Tim J.

[Randy]

You need to tell your kids right away. If they are adults, they will understand the severity of the situation after you explain to them the whole picture about the different stages. Another thing is I have read some articles that this disease can be passed down. You need to have you kids know this and when they go for their yearly physicals to be checked for this also. If caught early, it can be slowed way down and you are more eligible for a transplant.

[JackCrumbley]

My father died of pulmonary fibrosis at age 64. So when I was diagnosed with IPF at 75 I knew what was coming. You must tell your children everything so that they will not squander the time that they have left with you. I still have a long list of things I wish that I had thought to ask him before he died. They deserve to know so that they will have a shorter list.

[wimp]

I told my family the moment I found out I had IPF. They are my support team. Don’t let this disease keep you from enjoying life. No one knows when death will come only God because he is in control. My faith is in Jesus.

[Rod Branham]

Hi Michael. Once I had a true diagnosis, I told my kids individually because it is hard to get everyone together. I felt that they needed to know and they also know that I have always told them if I had procedure that was to be done and since this will impact them a lot, it was very important to me that they know what is going on. Then they can see the progression and know what is going on with me. They truly appreciate that

[Jaymead]

Went through this with my dad. He hid the severity, and it hit us hard later. Honesty early on would’ve helped us all. Keep it simple: tell them it’s a serious, progressive lung disease. Let them ask questions. You don’t have to drop everything at once, just start the real conversation. It’s better than leaving them guessing.

[John14392]

I am a born again Christian who walks his talk. For me, death lets me go to my forever home – Heaven. My family are born again Christians who know they are going to Heaven as they also have made Jesus their personal Lord and Savior. So although their hearts hurt when I told them, in their heads they knew they would see me again in Heaven. I am 69, married and have 2 children with spouses and 2 young grandchildren by my daughter. My kids live in far away cities so we don’t see all of them as often as we’d like – I still work full time – my clients have become close friends (who I’ve not told yet), I am a sole practitioner as a CPA and Atty. Before PF I was thinking I’d retire in a few years, now with PF I want to work full time as long as I can to leave my wife as much money in the bank after I’m gone as I can and I really like seeing my close friend clients. But even working full time for 5 years I’ve been able to take off 3 months a year in 3 visit family vacations. My granddaughter is 5 and my grandson is 6 months, we live in Oregon and they live in Pennsylvania, my son and his wife live in Idaho. I began taking Ofev a short while after diagnosis. My diarrhea side affects were no joke, but I’ve gone from 168 to 138 now, and I figure full dose was for anyone’s weight – even up to 300 lbs, so I cut my dose in 1/2 and the diarrhea was gone, thank God !! Randy Alcorn’s book called Heaven is the definitive book on Heaven, read it – you won’t be sorry you did, I promise you – you need hope too..<div>

Look into getting on one of the 2 slowing scar progression drugs. They are very expensive, but much cheaper from the Canadian drug store – like 1.38 to 2.30 per pill. They are reliable you can check prices at their website before you order, then have your pulmonologist print out a prescription to fax or email to them when you place your order. President Trump is working on limiting out of pocket drug costs to $2000 a year and working on having drug companies charge us the same prices they charge those who live outside the USA.

Ask your pulmonologist how to get on the lung transplant list when you get under 2 years to live, I did and I’m getting listed this week – all of a sudden my wife and kids who found it too painful to talk about my PF will freely discuss a lung transplant with me.

In their despair of losing me, my Ofev and transplant listing gave them a little bit of hope. So when you tell them of your PF, tell them you are looking into life extending drugs out there and even a transplant down the line. I just read about a woman who has just passed her 30 years post transplant, but the ave is 6-7 years but if you do everything the transplant doctors tell you too, many are living many, many years beyond those 6-7 years.

Another help is to pray to God to show you how to tell them, He knows them and knows what and how you should tell them, if you pray to Him he will give you what to say.

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