Facing Reality and Letting Go with PF
Letting go of something or someone is hard for all of us. We often face forks in the road where we realize we need to let go of people, expectations, plans, relationships, pain, and a whole lot more. This is especially true for pulmonary fibrosis (PF) patients and their loved ones.
As our disease progresses
Over time, this disease forces us to let go of our health, independence, mobility, career, ability to breathe without supplemental oxygen, and eventually our lives. That is a shocking list, I know. Our disease also causes our loved ones to let go of their plans, expectations, independence, and a future with us.
Each time our health worsens we have to let go of something else. Refusing to let go results in pain, disappointment, and bitterness as we try to deny the reality of our diagnosis. It also stops us from making adjustments that can make our lives easier. Reality can be hard to face.
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Believe me, I know
Two weeks ago, I wrote about my recent exacerbation. My health has worsened to the point that leaving home is exhausting. The amount of oxygen my body can take in has decreased by 20 percent in the last six weeks, resulting in my need for increased supplemental oxygen. I am on a very high level —10 liters per minute (lpm) while sitting and 15 lpm while walking — so getting around is difficult, and did I mention exhausting?
I’ve had to face the progression of my disease. This has involved letting go of some activities and responsibilities. Most of my limited energy is used up on routine tasks like dressing, eating, paying bills, and light housework. Even walking around the house is a struggle and I’ve had to let go of some activities I love.
Facing reality
I retired two years ago from my career as a marriage and family therapist due to PF. Letting go was painful for me. I wanted to continue to make a difference in the lives of others, so I focused on my online writing career, which includes this column, my blog, and authoring three books about self-compassion, including the latest for PF patients and their loved ones. I’ve also enjoyed interacting with patients through social media.
This recent exacerbation has convinced me that I can no longer interact in all of the ways I love online. I’ve already deleted two of my social media accounts and put a hold on two others. I also have decided to stop updating my blog. I plan to continue writing this column for as long as I can, and stay active with my PF friends on Facebook, as I am active in several groups that provide support to patients and their families.
Grieving letting go
Letting go is hard to do: It involves facing reality, making appropriate decisions, and grieving new losses. This process is healthy but challenging to go through. I’m adjusting to my new normal, and it is rough. I recently had a very scary experience at the grocery store that made me realize it was time to start ordering my groceries online — one more thing to let go. It’s hard, but necessary, to adjust to reality as our disease progresses. I try to stay balanced as I grieve by enjoying what I can still do and noticing all the good that’s left in my life.
I’d love to hear from you!
How have you struggled with letting go as a patient or a caregiver? Share your tips on what has helped you? Please leave a comment below and share with those who could benefit via email or on social media.
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Robin Ives
Dear Kim - I so understand this letting go...... both George and I are busy letting go of things that are just too exhausting for him. I realize that the time has come for us to sell our camper - we haven't camped in a couple of years and this year will be no different. It feels nearly impossible to travel and that is ok but still very sad to process. George is just much more comfortable being home. We go to our children's houses for a few hours here and there but much more than that is just daunting - especially in this cold. I leave for work each day and say goodbye leaving him all tucked into bed. Of course, there is no reason for him to get up with me anymore - especially with me leaving between 6 and 6:30 a.m. But again - hard to let go of having a cup of coffee in the morning together. Each day is a gift and we must adjust to our ever changing worlds. I am sad that you're feeling this exhaustion too. I pray that one day very soon we will awaken to a cure.... HUGS!!
gloria bessell
Thankyou for your column, it is comforting to know how you feel as my partner has Pulmonary fibrosis.We used to love traveling, but sadly this isn't possible now, just having a shower and getting dresses is exhausting!Walking is such an effort now without getting breathless.
I have often wondered how he really feels having been a sportsman most of his life, he spends most of his time reading,doing jigsaws or using his laptop.
Keep writing, you are helping so many people.
Donna Kinard
I have just learned 6 most ago I have pulmonary fibrosis my children are in denial I want to spend more time with them they say ah mom your not going to die youve been misdiagnosed
Michele Hohendorff
Hello Donna
I too have just been diagnosed with PF 2 months ago and I'm only 49. Thankfully it has been caught early with just minimal scarring so far. I'm still being tested for chronic cough and laryngitis so the discussion of PF has not truly been had with my Pulmonologist until these additional tests are completed. It is just starting to hit me of what this diagnosis means. Im not ready to fully take it all in yet. My family does not know what PF means or is and I'm not ready to have that conversation yet either. I'm glad you commented about your family's response. Thanks for listening :)
Cindy Carrubba
My whole family acts as tho I’m exaggerating the seriousness of my disease . I did point out things I wanted them to read so they would understand how I felt . I guess it’s denial and I know a little bit about that myself.
Anne Morris Tincher
Hello, Kim, and thank you for sharing your journey with the world because I, too, have pulmonary fibrosis. It's been a hard road for me giving up my passion of camping with friends with our horses! What has helped me the most is ACCEPTANCE! I can't change things as they are so why be miserable. I am blessed to have an angel for a daughter that helps me. However, I tell her all the time how much I love and appreciate her. I try very hard to keep her less occupied in my affairs. It's only "fair" to her! She's a newlywed, works hard at her job, and would want to get pregnant for the first time.
Please keep the faith, Kim! You are an angel, too, for continuing to help yourself to help others!
John
I have been lucky so far as I am still not using any supplemental oxygen. I was forced into retirement 7 years ago by my employer and have since then had to give up some things that were becoming too taxing to continue with, so your post really hits home.
Kim
My husband has IPF and has had significant decline in lung function over the last approximate 18-24 months, after being quite stable for about 7 years. He had said previously that he doesn't want to consider lung transplant back in the early days of us dating when he first told me about his diagnosis, and I'm trying to honor that decision. But I'm also struggling, now, to not ask him one more time, about 5 years later when we've been married for 3 of those, if it's something he would consider when so much has changed in his life. It's so hard for me right now, with the latest assessment from his doctor, to emotionally balance being fully supportive of his decisions, and yet to so very much not want to lose him and want him to at least consider all of the options available... I don't think it's fair of me to tell him that I really want him to consider transplant to the point of listening to the team on what all is involved, and to at least accept the referral to have even just that initial appointment with the transplant team. And yet I want to know if he truly has decided, that his decision has not changed that this is not the direction he wants to take. It's just days after finding out how much lung function has truly declined, and I think that we're still both processing what this means and how we feel about it, so we haven't talked about it yet. But I love him so very much, and I'm not ready to face losing him...
Eileen Kaller
Dear Kim, I am so sorry that the disease is progressing for you. You have been an inspiration to me. Your columns and especially your book are a source of important information that only a patient can know. It also reminds me that my husband is suffering as a byproduct. Your emphasis on being kind to yourself is invaluable and I am so glad that you are being kind to yourself and letting go of some things. I too am letting go and it is not easy. Guilt sets in as well as sadness. Prayers, hugs, and good wishes. Eileen
Jean-Michel Fourrier
Thank you for sharing Kim. I do hope that you'll be strong enough to continue publishing. I'm in the early phase of IPF (diagnosed Jan 2017, now I fully accept the situation (considering IPF as as a roommate with whom I have to live. I'm directed by two guidelines. The first one is to enjoy life having only positive thoughts, being 100% active as long as I can. The second one is to prepare myself to the next phases (supplemental O², Lung transplant). I Don't know when it will come, but time will come and I want to be prepared as serenely as possible. For this your and and testimonies are key.
Thank you a lot
(sorry for my american language, I'm french ;-))
Barbara
I wanted to share my experience as a caregiver of my mother. My mom was diagnosed with pulmonary fibrosis and also severe pulmonary hypertension one year before she passed away. She was diagnosed at the age of 83. In the beginning she was able to do what she normally did since she was in excellent health before this disease occurred. She would go to church, grocery store, bingo with her friends, etc. Gradually things changed and I would pay her bills, grocery shop, take her to all of her appointments and drive her everywhere she wanted to go. During the last month she got to the point when just walking to the bathroom or heating her lunch got almost overwhelming for her. She would take naps constantly and be extremely fatigued. On her last day, she stopped breathing and went into heart failure while I was with her. She was rushed to the hospital but died that evening. Even though I was not ready to let go, I’m glad she did not have to suffer the struggling for air at the end of her life which I know some patients do. I believe God spared her a lot of suffering. She was in such good health before this terrible disease took over that I thought she would live to be 100 years old.
Evelyn Hudson
Dear Kim,
Thank you for continuing to share! I pray you know that in your struggle you are helping so many. I was diagnosed with IPF in 2014 and placed on supplemental oxygen 24/7. I was placed on the transplant list in 2016, with a low score number. Since I need a double lung and I'm 70 yrs old, my chances are not very promising. I have been trying to get the Ofev medication but with insurance my co-pay is $2,400 per month. I can't afford that so I'm trying to get other assistance. It is challenging as I learn to let go and focus on what is important. I'm encouraged by your strength!
Donna
Evelyn,
If your doctor hasn't given you a list of foundations that provide grants to cover the cost of the copay, please do ask. This is the only way it is possible for my mother. At 83, with IPF, she is doing amazingly well, better than expected. We're in year 3 of her taking Esbriet, the other drug now available that also slows progression. They make it super easy to secure the grant with a phone call and little paperwork. The following year, it is literally a 2 minute phone call to provide the grant for that year. Please don't delay not to risk unavailable funds. If one foundation is out of funds they will recommend others to call. Wishing you love and peace with this challenging battle and many prayers that science is well on its way to stopping this disease altogether. It hasn't been that long that even these drugs have been available, so plenty of work and study is being done as well speak. While hope is not a strategy, it is a very good reason to keep living with enthusiasm. My beautiful mother sings to her country music and even dances despite the 24/7 oxygen. Singing is an incredible exercise for the muscles that take in air. I fully believe this, along with the Esbriet, is the reason she is able to do as much as she can, pacing herself according to the task. All the very very best to you, but get that information and get that grant!!
Piet Potgieter
Dear Evelyn,
Why not import Esbriet (Pirfenex) from India? It costs me less than $50 per month. I was diagnosed 2 years ago, have been taking Pirfenex for just over 18 months and there is no deterioration in my condition.
Pat
Barbara, thank you for sharing your experience with your mom. I'm going thru the same things with my 86 year old mom who was diagnosed over 3 years ago. Just using a walker to get around in the house is exhausting as is taking a shower with her oxygen on. I do the cooking for her and she just needs to heat the meals up, but we have had to hire help to come in and do that for her. I am the only caregiver, only child with no family of my own and I work full time. I'm exhausted most of the time, but have no regrets when it comes to helping mom. I can only pray that when her time comes, she has a peaceful end. I too thought my mom might bake it to 100.
Stefani Shaner
I am surprised by my own survival since diagnosis in 2006. I have given up much of the housework. I will do smaller tasks, here and there. I will soon be a grandma again (my daughter wasn't even engaged back then). The biggest tool I have in my arsenal for coping is family, and meditation/calming exercises. I don't take special medications other than a statin, blood pressure medication and NAC. I am 70 and do not want a transplant. I still dress and bathe myself, but I have to plan and pace myself. My husband and I plan outings with the kids when they visit and then recover after they have left. We have a northern residence for summers and a South Texas residence for the winters. They are simple homes that work for us. Still have problems with medical, but there is so much wrong with the US healthcare system. On that note, I should go do some yoga. ?
Peter davies
Hi Kim I've had I p f since 2012 after havin lung resection it's now 15 months since I had to give up work (tough) am now on oxygen 24 /7 , nearly at the stage of doin nothing was blessed with an angel when I married my wife tracey who near enough does everything for me now this is such a debilitating disease am on the double transplant list but hard being patient .ithank you for all you do for us all certainly been a great help 2 me please look after yourself lol Pete Davies from England
Susan
We are new to this community. My husband at 80 has just been diagnosed. We are hopeful that the right treatment and drug regimen will slow the progress of the disease. It helps us to understand the impact of the disease and how it differs from one person to another. Thank you all. From Canads
Thelma Thibodeau
I am also new to your community living in Montréal, in Québec, Canada. Rhumatoid arthritis is the cause of my PF and I am also dealing with Sjögren's Syndrome - dry eyes, very dry mouth and nose and recently ear infections, and osteoarthritis and recurring spinal stenosis. I now have oxygentherapy at home (since last Friday) and immediately started using the Secaris lubricating nasal gel. Unfortunately, yesterday, nose was very irritated and when I used warm water to clean and soothe it, found blood. Used a bit of Polysporin gel and did not sleep with oxygen to give nose a rest. Is there someone out there battling Sjögren's? Are you using perhaps a lubricating nasal gel under prescription?
Dear Kim - I have been reading a lot of comments from your followers and wish to thank all of you. I have just bought your book Pulmonary Fibrosis Journey....Bon courage Kim.
Letting go is indeed very difficult to do. I am learning slowly how to deal with all of this and am very thankful that I was always very active and continue to work out at home at least an hour a day after following respiratory rehab at the Mont Sinai Hospital here in Montréal.