The Daily Impact Pulmonary Fibrosis Has on Patients
There is no question that living with pulmonary fibrosis is exhausting for patients and caregivers alike. Those who may not have any experience with PF might assume that it is only a physically limiting disease. I would have thought the same before my idiopathic pulmonary fibrosis (IPF) diagnosis in 2016. Unfortunately, what I grossly underestimated after my diagnosis was the emotional, mental, and social impact it has in addition to physical implications.
When I try to explain this to close friends and family, I see confusion on their faces. What they tend not to realize, through no fault of their own, is that even the smallest daily activities can take a toll. As our disease progresses, so do our physical limitations, which also affects us socially, mentally, and emotionally.
Some days are good, and I have learned to embrace them. Unfortunately, difficult days happen as well, and this is when I need to remember to be gentle with myself. I wrote a column about this, and it is a good reminder for me to revisit it from time to time.
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Some might wonder how simple daily activities can be so impactful for a patient living with IPF. So, I wanted to take some time to outline the toll that daily activities can have on us. Feel free to share this with others within your network who may need reminding from time to time.
- Emotional impact: Learning you have a life-threatening illness is emotionally exhausting, especially at first. For me, the long-term emotional impact is that I likely won’t get to live as long as my peers and the people I love most. It is painful to think about and always at the back of my mind. However, regarding daily impacts, what gets to me most are the things I used to be able to do each day and no longer can. I see many of my friends enjoying their lives to the fullest, and I know a day will come when I can no longer do the things I love, such as travel, earn my own income, drive, etc. When I think of my peers and all they can accomplish in a day, it has a significant emotional impact. I can no longer buy groceries or do other activities after work because I am too tired. I have to plan to complete things, unlike my peers, who can do things sporadically. IPF stole that flexibility from me, and it is infuriating.
- Social impact: I used to love being social and would spend hours on various committees, in volunteer roles, or hanging out with large groups of friends. While I still enjoy this occasionally, it exhausts me and I need a few days to recover. This is hugely impactful because I think to myself: What young adult needs to spend days in bed after hanging out with friends? As a result of limiting my social activities to only weekends, some friends have stepped away because I can’t spend as much time with them, and this is something that IPF took from me.
- Mental impact: This is probably the most detrimental impact that IPF has had on me, which I was blissfully unaware of until my disease progressed. I used to be cognitively sharp, remembering meetings or appointments without writing them down, navigating various technology devices, being capable of innovative thinking, and paying strong attention to details. Unfortunately, none of these apply to me anymore, and I need several tools to help me remember different tasks throughout the day. This has significantly affected my employability and my ability to feel confident at my job. While others say they don’t notice a significant change in my abilities, it is something I feel in every aspect of my day, and it has had a huge impact on me mentally.
- Physical impact: This one is easier to understand from an outsider’s perspective; any lung disease is going to impact someone physically. Instead of being busy from sunup to sundown each day, I now require naps to maintain my energy level. Things that used to come easily, such as driving, have become exhausting. I realize that this will only worsen as my disease progresses, so I try to embrace doing what I still can. But it is tough when I see my peers and know that I can no longer keep up with them.
How does your disease affect you on a daily basis? How do you respond to complete the tasks you need to each day?
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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
Anne
much the same, fortunately I no longer have to work. It would be a disaster. Lately coughing has taken a huge toll. I'm not sure what the problem is. It's the same damn dry cough. I see the doctor tomorrow maybe he'll have some words of wisdom.
Charlene Marshall
Hi Anne,
Thanks so much for writing to us, although so sorry to hear about this pesky cough that has taken a toll on you. Some days I wish I had a productive cough, at least there would be some relief when getting the crap in my lungs out. Unfortunately this isn't the case with the chronic dry cough, and it is exhausting isn't it? Do you have any puffers to relieve the dry cough at all? I know some people say it helps and others don't but maybe worth a try. Hopefully your appointment went well at the doctors and he could offer you some potential relief.
Take care and thinking of you.
Charlene.
Thomas Bivens
Hi I drink tea with honey and squirt of lemon in it.
I also got a prescription of coigh syrup eith codeine in it.
I only take that before bedtime 5 ml.
Cough is terrible at bedtime and again in morning from laying down at night.
Choking part is the worse , my O2 level plummets to 60's each after/during these spells.
Charlene Marshall
Hi Thomas,
Thanks for reading our columns and getting in touch via the comments. I know Anne will find your reply helpful, as have I. Do you find the cough syrup with codeine helpful? We've been talking a lot about the discomfort that comes from a cough triggered by laying down a lot in our forums. Have you tried a raised bed at all, to see if the cough can be eliminated a bit based on your positioning? Hope this helps a bit and that you can find some relief to the pesky cough. Thinking of you.
Charlene.
Marcelo Saliba
try to dissolve 70% cocoa black chocolate in your mouth. See if your cough improves
Charlene Marshall
Hi Marcelo,
Thanks so much for reading my columns and getting in touch via the comments. I've never heard of this before, fascinating! If chocolate might help my cough improve, I am in :) Just kidding, I know it is important and I am going to share this tip with our forums community to see if it helps anyone else. Thanks again for sharing!
Charlene.
Kenneth Overby
Dear Charlene,
I hope you receive this. I was just typing and my entry just was wiped out and unretrievable. Being the caretaker of a spouse that has Pulmonary Fibrosis and Chronic Pulmonary Hypertension, I can relate to your issues with depression. I am an exhorter--one who edifies (builds people up) and gives people hope, and I have spent a lot of time and energy trying to keep my wife feeling positive. We were not pleased and taken back by the dismal prognosis she received. But my reaction was not to accept that prognosis.
I have stressed first to put our trust God and not our confidence in man [Psalm 118:8] because He is the one who is really in control of things. Secondly, I feel that the power of visualization is very important. You have to see in the spirit where you want to be because everything starts with our thoughts. If you want to be well, you have to see yourself well. You also have to speak words that back up how you see yourself. Because as a man thinketh, so is he. [James Allen] What you speak will eventually manifest itself in the flesh. Third, be pro-active. This does a couple of things. Your research shows your pulmonary specialist that you are interested in your body, and this will motivate him or her to be more interested. Also, your findings may assist your specialist to reconsider your prognosis and approach to your illness or disease. I could also add to be specific when you tell your doctor how you feel. It could result in adjustments to or in the elimination of certain medications you take. So, ask questions if something isn't clear, and if you feel strongly about something, make recommendations. Remember, your doctors don't know everything, and many are fishing in the dark. Your input is crucial to resolving your condition. In the future, I plan to share many of my findings with you in the hope that it will motivate you to do the same.
Charlene Marshall
Hi Kenneth,
Thanks so much for getting in touch with me and for reading my columns. As always, it is great to hear from you! I appreciate your thorough and kind words within your post, lots for me to consider and think about. I especially like the reminder to be proactive in researching my disease and what might help me, hopefully encouraging my pulmonary physician to do the same on my behalf. So important to speak about our feelings as well, and be constantly re-evaluating our medications, as nothing is worse for me then being on more medications than I did. Really good reminders! I'd really like it if you did share your findings with me, and I'll do that as well for anything I find. Appreciate your intake on this, and thanks again for writing Kenneth. Glad you're part of our PF community!
Cheers,
Charlene.
Marcelo Saliba
Dear Anne,
I have taken black tea and several herbal teas which decreases inflammation, but I do not know if fibrosis inflammation decreases. I use a ground root called saffron from India, I have eaten a lot of broccoli, I read that the metiformine hydrochloride used for diabetics decreases inflammation of the lung. I have noticed that when I am at sea level I have almost no cough. I live in a city in Brazil at 1390 meters of altitude of the sea level. I believe that at sea level the oxygen is richer. I made inhalation with boiled eucalyptus leaf. The plants I drink in the form of tea are: Olives, elderberry tea, mirtilioco, chia, malvarisco, cat's nail, celery, horsetail, rosemary, vegetable, sage, vegan. sweet potato, pineapple, laurel + honeysuckle. The black chocolate
60% of cocoa or more has a component called flavonoids that is anti-inflammatory, and cough reduces. You could collect data likely causes of fibrosis. which everyone used in common, as medicines, if everyone had reflux, what diseases each had in common with everyone who has fibrosis. We even found some variable common to all. I took an antiplatelet remedy called Clopidogrel bisulfate and aspirin for some time I believe it may have triggered my fibrosis, it is that someone in the group has used these drugs and has fibrosis. Let's create a statistic group to filter out likely variables.
I do not know if in the USA you can do a test to detect a protein named decorin, it talks when it detects this protein in the blood when it appears the pulmonary fibrosis I
Marcelo Saliba
I researched and found this subject, on telomeres that are the same line of research of Maria Blasco in Spain. where she is discovering the cure of pulmonary fibrosis. Here in Brazil together with USA believe that male and female hormones
substance Danazol increases telomeres may heal or not let go
I'm sorry if this story is not of interest to this group.
Human chromosomes (gray) closed by telomeres (white)
One of those responsible for the research, professor Rodrigo do Tocantins Calado of Saloma Rodrigues, from the Hematology Sector of the Medical School of Ribeirão Preto (FMRP) of USP, says that the telomere "works like the plastic of the shoelace." It protects the end of the chromosome so that it does not wear out. But that, during the cellular divisions, the telomere undergoes a natural shortening.
Calado worked with a clinical protocol in which he sought to reduce the rate of shortening of the telomer by administering for two years the substance Danazol (male hormone) to patients with very short telomeres and carriers of diseases such as aplastic anemia, pulmonary fibrosis or cirrhosis of the liver .
But the results surprised; the "goal was to reduce the shortening of the telomeres, but what we observed was its elongation in almost half of the cases. Diseases that affected patients, such as aplastic anemia and pulmonary fibrosis, also improved. This was the first demonstration that elongation of telomeres is possible in humans with the use of a medication, "says the researcher.
The study was conducted in the laboratories of the Center for Cell Therapy (CTC), located in the Hemocentro of Ribeirão Preto, in collaboration with the National Institutes of Health (NIH), and had shown that sex hormones - both male (androgens) and (estrogen) - stimulated the enzyme telomerase (telomer repair).
With this information that sex hormones repair this type of cellular damage, scientists are hopeful for the new possibilities that open up for treatment strategies for other diseases associated with telomere shortening, such as cancer and cardiovascular disease.
We can not forget that the aging process itself causes this shortening as the cells of our organism live multiplying. But, "the possibility of interfering with this telomerase mechanism does not impede the aging process. There is no elixir of youth or at least until today we do not discover it. However, there is a possibility of reducing the aging of some cells that may decrease the risk of development of various chronic diseases, "recalls Phillip Scheinberg, co-author of the research and head of the Hematology Service at Hospital São José, of the Beneficência Portuguesa de Sao Paulo.
A new study in the same line, testing for another male hormone, nandrolone, is being carried out at Ribeirão Preto USP's Hemocenter, funded by FAPESP, CNPQ and the Ministry of Health.
Fountain of Youth?
Structure of parallel quadruplexes that can be formed by human telomeric DNA - Photo: Wikimedia Commons
To understand what the telomeres represent, it is necessary to understand that the aging process begins at birth. Professor Calado says that "aging is a complex process involving biological changes of cells, organs and tissues and accompanies us throughout life; and that one of the components of this process are telomeres. "
These structures of the cells, the telomeres, serve as protection to the genetic material. However, with the aging of the cells, they become smaller and smaller, reaching a critical length. The result is the inability of cells to multiply or even cell death. In practice, the size of telomeres allows one to gauge the "age" of a cell, which can be measured in the laboratory.
Some cells can manage this aging. By means of an enzyme, called telomerase, they notice the shortening and lengthening telomeres, keeping the multiplication of capacity and "youth".
The incidence of many diseases increases with age, such as cancer and cardiovascular problems, and studies have shown that people with shorter telomeres are more prone to these diseases. The pathological telomere shortening caused by genetic defects, is also responsible for pulmonary fibrosis, cirrhosis and aplastic anemia (characterized by reduced production of blood cells by the bone marrow).
As generally, these people have a lower life expectancy, the possibility of preventing the shortening of telomeres in humans has become the research target of several research centers in the world. The goal is to prevent premature aging of the cell and mitigate the undesirable effects of this process.
Carla Clayborn
Do any of your followers take OFEV medication to slow down the progression of IPF? I have been on it almost two years and have had very little progression.
Charlene Marshall
Hi Carla,
Thanks for reading my columns and getting in touch via the comments. Yes, there are many folks on the Pulmonary Fibrosis Forums who take Ofev to try and slow the progression of the disease, some with success, others less so. You can read about their experiences here if interested:http://pulmonaryfibrosisnews.com/forums/forums/forum/ofev-nintedanib/ :) I also am on Ofev, so feel free to reach out if you have any questions.
Warm regards,
Charlene.