The Unpredictability of Living with Failing Lungs
I’ll be transparent: Living with a chronic illness sucks, regardless of the disease you deal with. It’s not easy learning to navigate life while sick, and unfortunately, there is no rulebook to study.
I can only speak for all the difficulties that come with having idiopathic pulmonary fibrosis (IPF). I received my diagnosis in early 2016, and since then I’ve been trying to navigate life with lungs that are gradually failing me as my disease progresses, which leads to a lot of unpredictable scenarios and emotional reactions on my part.
Living with any chronic illness means you will have both good and bad days. Each morning when I wake up, I try to be hopeful that day will be a good one, and that I won’t have any respiratory issues. These issues can range from coughing fits to needing to go to the hospital for increased oxygen support. I never know what each day is going to bring, which complicates regular aspects of my life, such as maintaining a career or a social life.
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My oxygen needs differ from day to day, often without warning. Sometimes I need my supplemental oxygen, and other times I don’t. As of late, likely due to the high humidity of the summer weather, I have needed it more often than not. When I don’t have it on, people often ask why I am not wearing it.
My ability to cope with my illness is also unpredictable. Some days I can openly tell others about my disease and manage the day-to-day difficulties of living with it, while on other days I dissolve into a puddle of tears if someone looks at me the wrong way. Unfortunately, I cannot always control this (it can be a response to medication changes or steroids) and I seek to reject judgment and instead find compassion, understanding, and empathy on those days.
I have become pretty good at withdrawing myself from social situations when I feel emotionally unstable so that others don’t have to “deal” with me. However, that isn’t always possible because I still do full-time work.
Lastly, my ability to complete physical tasks fluctuates. I can often get groceries on my own, but on other days I am so exhausted and short of breath that I can’t get down the stairs alone. I take my dog for a walk in the evening when the weather cools down, but sometimes I need to use a wheelchair at the end of a long day because my legs and lungs are so tired. One of the most frustrating things about IPF is that no one can see how I am feeling inside, and I often feel misunderstood.
What are some of the things you can no longer predict since being diagnosed with IPF/PF?
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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.
About the Author
Comments
P.T. Ummer Koya
Let me permit to share the same sentiments, agony and feeling as a patient of PULMONARY Fibrosis for more than 10 years. My condition became worst only 2 years back.
Charlene Marshall
Hi P.T.,
Thanks for reading my columns and for getting in touch. So sorry to hear that you've been dealing with this cruel disease for 10 years and that things worsened for you a couple of years back. Wishing you as great of health as possible!
Warm regards,
Charlene.
Charlotte Harvey
Great article and exactly how it is. I wish every morning when wake up that it’s a good day ?
Charlene Marshall
Hi Charlotte,
Thanks so much for reading my columns and connecting via the comments. So glad you found my column helpful, and that you can resonate with it. I also hope each morning that it is a good day. Cheers and positive wishes for many good days ahead for us both. Keeping you in my thoughts!
Warm regards,
Charlene.
Moses Samson
I can totally understand your situation Charlene. I myself suffering from IPF. Im 36, software professional based out of India. I was diagnosed with ILD in Jan 2018. Initially doctors said its just lung infection and gave me few antibiotics. My cough got aggravated and breathlessness increased eventually.. even after getting my HRCT scan, doctor did not identify my problem.. Later when i went for second openion , it was confirmed that its IPF. Yet my doctor did not discuss what kind of problems i am going to face.. I learned it through internet. Meanwhile my symptoms were getting aggravated. I was given pulse Therapy followed by steroids. This caused weight gain and skin allergies even on face. For a person living in tropical climate and having skin allergies is really big deal. I could not attend Office. My stamina was getting reduced day by day. Its mentally, emotionally and physically a testing phase. Sometimes i feel lonely even while I am in the midst of my loved ones. Sometimes nobody could understand what I really going through.. So far i did not use supplemental oxygen yet, walking 10 feet distance itself looks like major journey. I do not know what life is going to look like in coming days. But it certainly took a toll on my living. I no longer can walk with my colleagues, cant climg stairs, cant have peaceful night sleep without coughing. On top of all this facing challenges at workplace is another pain. I really hope God answers our prayers, and gives the enough courage to face the future.. keeping everyone with IPF in my prayers
Charlene Marshall
Hi Moses,
Thank you for reading my columns and for getting in touch via the comments. I sure wish that it wasn't IPF that brings us all together, but it is so nice to hear from others living through a similar experience. It is even more helpful to hear from someone in a similar age bracket as me, as I will be 31 this year - although so sorry to hear you're living with this cruel lung disease as well. Do you suspect your ILD and subsequently, IPF, developed as a result of the lung infection you had earlier this year? I couldn't agree more how mentally and emotionally draining this disease is for everyone, especially young adults who are trying to navigate a social life, career, young family etc. It really doesn't feel like anyone understands at times! Keeping you in my prayers as well Moses, and please don't ever hesitate to reach out. You're among friends here who truly "get it" - that's for sure. Hang in there!
Warmest regards,
Charlene.
Linda menzies
Hi Moses I was diagnosed 4 weeks ago after another stint in hospital with double phnumonia I now have to wait 3 months to get into the major professor who heads transplants in adelaide and I'm on top cover with medical insurance my original GP did t offer any advice and went to another doctor in same practice who read my results from the hospital said that this is a very serious illness untill I saw him I had no idea about PF now FTEs going online I'm really scared.
Charlene Marshall
Hi Linda,
Thanks for getting in touch with us, and reading my columns. So sorry to hear of your experience with pneumonia, that sounds awful and I hope you're on the mend now. Are you in Adelaide, Australia? I was there last summer and loved it. I don't think Adelaide does lung transplants though, the closest center I think is the Alfred in Melbourne or a hospital in Sydney. I could be wrong, and I'd love to know if I am as I didn't think Adelaide hospitals were big enough for a transplant program. Hang in there, and please feel free to write any time!
Kind regards,
Charlene.
Linda
Hi Charlene yes in adelaide got in with head of transplants in two weeks he must have looked at my lung tests and luckily I'm going to him today I do not know if they do them in adelaide and didn't know anything about this illness untill I was diagnosed
Charlene Marshall
Hi Linda,
I hope your appointment with the transplant team in Adelaide went well? I was in your beautiful part of the world (I was visiting Australia from Canada in both 2015 and 2016 and stayed in Adelaide for a few weeks) and I loved it. I hope to return next year! Adelaide may have a transplant team, but I don't think the actual surgery for lung transplantation is performed there. I think the closed to you would be the Alfred in Melbourne, but I could be wrong. Please let me know how you make out if you think of it :)
Warmly,
Charlene.
Patricia Hayden
I too was diagnosed about 10 years ago but at that time the disease was progressing very very slowly. In October of 2018 it seamed like I stepped off a cliff. My breathing became very labored and within weeks I was on oxygen 24/7. I truly believe that all the fires around us in the spring and summer of 2017 did the dirty work with it's smoke and ash. I had almost forgotten I had PF and then this happened. I have always been a very independent and sufficient woman. Not anymore. I am blessed to have a wonderful loving and caring husband, but I can tell at times I get on his nerves. I get on my own nerves. This is the first time I have posted my situation on the internet. I would like to continue but we shall see. Charlene, I admire you for giving us all a sounding board and you are inspiring in your truthfulness.
I am hoping (I think) to get on a lung transplant list. Pretty scary stuff. So is dying. I have completed some of their hoops but more to come. They are very thorough.
Best of luck to all,
Love Patricia
Charlene Marshall
Hi Patricia,
Thank you so much for reading my columns and for getting in touch via the comments. Although I wish it wasn't PF that connected us all, it is nice to hear about others' experience with this disease. It must have been so encouraging for the disease to progress so slowly for 10 years, and then on the flip side, be disappointing to have things change last October. I can't imagine how frustrating that must be for you, especially because it may have happened as a result of environmental triggers beyond your control.
So glad to hear that you have a loving husband who is helpful in caring for you. Please know that you are among friends here who truly "get it" and what it is like to live with IPF. If you want to share more about your experience, on a secure platform, please don't hesitate to join our PF forums: http://pulmonaryfibrosisnews.com/forums/ .. there are some wonderful people on there who have been extremely helpful to me. Thank you so much for all of your kind words!
Fingers crossed that you can get on the lung transplant list, and best wishes for the upcoming tests.
Kindest regards,
Charlene.
Donna Murray
My sister has IPF and emphysema at age 67. She just completed chemo for lung cancer and is now cancer-free but the treatment left her with severe peripheral neuropathy. I subscribe to this newsletter to try to better understand her disease and the best way to approach giving her the support she needs. We live about 6 hours away, but talk on the phone at least once a day, so I'm not a caregiver, per se, but part of her support system. I was happy to find this site.
Charlene Marshall
Hi Donna,
Thanks so much for reading my columns and for connecting via the comments. So sorry to hear of your sister's IPF and emphysema diagnosis - that must be so tough for both of you. It is so upsetting to know that the treatment to cure one disease is so toxic that it causes other issues.
Glad you've found our website, and that it is helpful for you. If you're interested, both you and your sister are also welcome to join our PF forums:http://pulmonaryfibrosisnews.com/forums/ There are a lot of wonderful people on that site who truly understand what it is like to live with IPF. They've been a great source of strength and comfort for me as well, so please don't ever hesitate to reach out. There is also a section for caregivers, as you are definitely a big supporter to her even over the the phone. Thanks for reaching out and wishing both you and your sister nothing but the very best.
Kindest regards,
Charlene.
leather sofa
Helpful info. Fortunate me I discovered your site by
chance, and I'm stunned why this accident
didn't came about earlier! I bookmarked it.
Charlene Marshall
Hi there,
Thanks for reading my columns and connecting via the comments. I'm so glad you found our site, hope you find it helpful in future.
Cheers,
Charlene.
Kathleen desramaux
Hello Charlene
I have been reading your blog now for awhile. I would like to comment on the drug esbriet. I find that it burns my throat when I take it. I have to drink milk, more likely I will still have burning. So then must have milkshake, ice cream or both. Therefore I avoid taking the drug especially at night. Often I will not take the esbriet for a week or more. Then I find that my breathing is much worse. Does anyone else have the problem of being more short of breath when I don’ t take the esbriet? Of course I feel guilty and wonder if I am hastening the progress of the disease
Charlene Marshall
Hi Kathleen,
Thanks so much for reading my columns and for connecting via the comments. I always appreciate others who read my work, although I wish it wasn't this cruel disease that brings us all together. Hmm... what an interesting reaction to Esbriet, I've not heard of this before. Has this always happened to you since starting this drug? I wonder if you have a slight allergy to it, or are developing one. There might be something that a doctor could help to combat this, such as an anti-acid as I can imagine the nighttime dose is not comfortable. I hope you're able to find a solution for the burning in your throat, as it is important to maintain taking Esbriet regularly to maximize the benefits of this anti-fibrotic drug. Have you spoken to your doctor about this? I'm not familiar with it being a common side effect, however, that doesn't mean it isn't and I am actually on OFEV (not Esbriet) so I might not be super helpful for you. I hope someone else might be able to contribute more experience for you! My first suggestion though would be bringing this forward to your doctor for sure, they may have a very common solution for you. Hang in there!
Charlene.
JUDY KRASOVEC
I really enjoy your column I have found many helpful things to help deal with IPF and COPD.I really like my lung dr. My husband died in Jan with liver cancer, was diagnosed in Nov. Very stressful. Have been sick since lots of test and etc. Now have neuropathy and my feet are numb. It just seems like one thing or another. Still no relief for pain. I guess this is one of those pity party days. Thanks for your time
Charlene Marshall
Hi Judy,
Thank you so much for all of your kind words re: my column, they really mean a lot and I always appreciate hearing from those who read it. That said, I certainly wish it wasn't IPF that was bringing us all together, and I'm so sorry to hear of your IPF and COPD diagnosis! I am glad you like your lung doctor, that is important. I'm so sorry to hear of your husband's diagnosis too, that would be incredibly difficult and stressful. I think all of us are entitled to those "pity party" days and if they didn't exist from time to time it would be unusual. Hang in there though and know that all of us are "here" for you via the forums.
Warmest regards,
charlene.