Living a Full Life Despite Being ‘Very Sick’
Those immersed in the world of idiopathic pulmonary fibrosis (IPF) know how quickly things can change from stable to critical. Regardless of whether you are a patient, caregiver, friend, or advocate, it comes as no surprise to hear how serious this disease can be.
Numerous factors can contribute to declining lung function, and while most of them are known factors, others are unknown to doctors and unfortunately can just happen. As a patient with IPF, this is one of my greatest fears and, at times, that fear can be debilitating.
Known factors that can contribute to a patient’s rapid decline include inhaling secondhand smoke or other environmental triggers such as dust, pollen, and sand. Viruses and bacterial infections such as influenza, pneumonia, strep throat, bronchitis, and other upper respiratory tract infections can also be responsible for a patient’s decline in lung function and their ability to breathe. For a rare few, strong smells from things like candles, perfumes, and incense can also trigger a respiratory episode.
I am now aware of two patients who have had what appears to be a “random” loss in lung function, resulting in significantly deteriorating health. Being aware of the experiences of others, while knowing that IPF can become critical very quickly, is enough to keep a patient from living their fullest life. It is enough to warrant a patient wanting to curl up in the safety of their own home to avoid interacting with the risks of daily living, such as potentially coming into contact with one of the factors that could cause their deterioration. What quality of life is this for a patient?
While the potential of coming into contact with factors that could cause my lung function to decline quickly is very scary, I am trying to still live the best life I can. With that said, I get up and go to work every day and try to maintain as much of a social life as I can manage, offer support to others, and make plans for the future — such as to travel.
I had an unfortunate episode that sent me to the hospital via ambulance earlier this week after I accidentally breathed in the secondhand smoke of someone standing in the doorway of the store I was trying to enter. I was treated at the hospital by one of my favorite nurses, and we struck up a wonderful conversation about my future travel plans.
When a respiratory specialist on call came in, I was explaining what happened to precipitate my ending up in hospital. He was surprised when I told him I was picking up a prescription on my own, and even more surprised that I am in the midst of making travel plans for September. When he asked me about this after seeing the condition of my lungs, I shared my philosophy with him: Despite multiple factors that could cause my breathing and lung function to decline, I am striving to live my fullest life, and that includes traveling. The specialist commented on how “admirable” this was, although he added, “You are still very sick.”
I haven’t been able to stop thinking about the doctor’s comment. Am I wrong to think that this is the right thing to do? To suppress my fears of all the factors that could cause me to decline quickly, and still do the things I enjoy every day? I would love to hear from other patients. What are your thoughts?
***
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
Steve
Our family motto is, "...always an adventure!"
I was diagnosed with IPF 3 years ago, and am just returning home from UCLA, where I will soon be put on the transplant list (double lung). A year after I was diagnosed my wife and I traveled to Italy, with my POC on my back. I was a wonderful trip, albeit difficult at times due to the amount of walking we had to do (common in most of Europe). We still try to get away often, but over the past year I've declined to the point where I have to avoid walking as much as possible. I can barely get through a trip through a grocery store without having to make frequent stops. However, next month we're going back to Disneyland! The last couple times we've gone I've rented a scooter, and I can still have a great time!
Keep traveling as long as you are physically able... it's worth the challenges!
Charlene Marshall
Hi Steve,
Thank you so much for reading my columns and contributing to the comments.... I absolutely love your family motto! Life sure is an adventure, and I think receiving my diagnosis of IPF, this has been reinforced for me over and over again. It sounds like we're in similar stages of our disease, although my diagnosis was in 2016. Thank you so much for sharing your travel experiences to Italy with your POC. Europe is on my list this year and I will have to take my POC with me, which I am a bit nervous about but I know I can do it. I'm so excited for you that you are still able to travel, and I hope I can as long as possible as well as this just adds so much to my life. Not being able to travel was my biggest fear after being diagnosed. Renting a scooter is a really great idea! Thanks again for sharing and best wishes to you and your family :)
Charlene
Steve
It's all about the journey, not the destination! We can't to anything worrying about tomorrow, so we try to make the most of each day!
Blessings on your journey!
Scott Carpenter
I Love this philosophy!!! This is my philosophy as well!
Charlene Marshall
So great to hear Scott, thanks for sharing. I am a big fan of Steve's philosophy too!
Maureen
I was diagnosed Xmas 2017 , the first thing I thought of was I've got to get back to India , was there before and want to see the Ganges one more time. Then when all the longhaul is done I will then do Europe as I live in Ireland , Europe should be easy enough , write a list and do the far away stuff first, then you won't feel hard done by . Regards Maureen
Charlene Marshall
Hi Maureen,
Thank you so much for reading my column and contributing your comments! I am sorry to hear about your diagnosis, but I think your method for continuing to travel is such a great idea. Did you get back to India after all? I think I will plan my travels as you suggest, the long haul trips while I can then perhaps exploring my own country and doing domestic travels. Thanks for the suggestion :)
Charlene
Joyce Douglas
Hello Charlene. No, you are doing great planning to travel and unfortunately you had an incident with smoke that ended you up in hosp. Yes, you are still sick, but you are living life as you best can do it, and that is great. I ended up with a cold and ensuing cough that has knocked me down super fast. Now I do really understand that I need to be more aware of people around me who have colds and stay clear. If they do move too close, as happened last Tues. and I caught the cold, I need to ask them to not sit there, or I need to move. I need to be not afraid to say, this is unsafe for me so I need to move. I have learnt a hard lesson and am really planning to change my attitude and put me first for once. Thank you for your msg on how quickly we can become very ill.
Charlene Marshall
Hi Joyce,
Thank you so much for reading my column and for sharing your comments! I really appreciate your validation on the importance of my continuing to plan to travel and living life as best I can. Sometimes I fear I am being to ambitious (or perhaps unrealistic?) but if we don't plan for these types of things, I feel like my hope will die and I don't want to live in a place where I am not hopeful.
I am so sorry you caught a cold that that caused a decline for you. Are you feeling any better now? It is hard to ask people not to sit near you when they are sick, or after I hear people coughing a lot and I am closeby I often put on my Vogmask. This may make them feel uncomfortable but we have to put our health first, so I agree with you when you say that it is important for us to put ourselves first (as hard as that is). Thank you again for reading Joyce and I really hope you are on the mend.
Take care,
Charlene
Ray Hastings
My wife and i enjoy travel and even thl.it is getting moe difficult,, we still continue as long as possible.
Some thing we have done to help travel
1.we bought a o2 contractor . You can use them on most air lines but you will need extra batteries the model i bought is called i
simply go'
2. i find it is pretty easy to rent cart in most airports. if they dont have cart rentals they will have wheel chairs. most cruise ports rent carts for use onboard ships.
you should arrange with airlines or ships to find their rules.
Charlene Marshall
Hi Ray,
Thank you so much for reading my columns and contributing to the comments! I really appreciate hearing your tips on what you have learnt makes it easier to travel. I also have the Respironics Simply Go concentrator! When you travelled with it, did you go overseas? I took it on a flight last year and didn't have any troubles, although it was within North America. I do worry about the airlines not allowing me to travel overseas with it, even though I can bring lots of batteries as I know I can't plug it in on the airplane. Did you find that you were able to travel easy enough with this concentrator?
This is a good idea too, I'll definitely be asking the airline to help me with rentals for carts or scooters. I really like the idea of renting a scooter that someone else suggested too. Thanks so much for your tips, I am so glad to hear you are still able to travel, even if it is getting a bit more difficult. Best wishes to you!
Charlene
Vic
My other-wise healthy 53-year-old husband was diagnosed in April 17 and was immediately eligible for a lung transplant. But he decided he did not want one after the evaluation in June 2017. The doctor (and scientific literature) stated he has only about a year left based on his already poor numbers showing 20% decline April to June, 30% decline April to September. Sound grim BUT, my husband and two children moved to our favorite place on earth in June (I live four hours away working for health insurance- visit every weekend and FaceTime daily). He is fully aware of the inevitability because we watched his mother pass from pulmonary fibrosis in 2011- but he says “I did not move here to die, but to live.” He has fished more, and spent more time with his children than working full-time ever allowed him. We known where this ends, but don’t let it drag us down.
Charlene Marshall
Hi Vic,
Thank you so much for reading my column and for sharing your story through the comments! I am sorry to hear of your husband's diagnosis and subsequent lung function decline. There is no simple way to say this, PF just sucks! That being said, I am so grateful for your sharing a bit of his story as his bravery and courage is so admirable. I love his comment about moving to his favourite place on earth to live, not to die and I am going to hold this motto close as I continue on in my every day activities with IPF. Please let him know that the way he choosing to live with his disease has inspired another patient, and I wish you all nothing but the very best.
Charlene.
Hiroo
My husband has IPF - his breathing is ok he is on Cyendiv for last 3 months but has severe body ache and fever fo last 2 weeks.
He has no energy - seen doctor , taken medicines
dont want to be hospitized
Don't know what to do
Charlene Marshall
Hi Hiroo,
Thank you for reading my column and for sharing your comments! IPF is such a hard disease to deal with and it impacts everyone so differently that is often difficult to know what to do when the patient falls ill. It sounds like your husband could be fighting something, and I can imagine he doesn't want to be hospitalized but with a disease like IPF, it is important not to avoid being seen and treated properly. The last thing we'd want is for a bacterial infection or virus to attack his lungs and have him become even more sick. Perhaps this would warrant a call to a family physician to see what they advise? Sometimes infections don't respond to just one round of medications. I hope he feels better soon and if in doubt, or you don't see any improvement, I'd really encourage him to seek medical advice again. Goodluck!
Charlene
Russel J Fabre
Charlene, go for it! Year 5 for me, my lung x ray looks like the wood grain on a walnut desk , FEV at 54%, on 6 - 10 lpm. I love to travel so I modified the RV to allow for travel. We drove through the Colorado Rockies at elevations exceeding 12,000 feet, just turned up the concentrator and valved in a spare cylinder using a "y" connector and off we went. During last week Olympics I stayed up until 1:30 A.M. to watch the American curling team (yes, some Americans love to watch curling). Why? Because we need to appreciate and savor every moment we have left. Along the way we get to bring a little joy to those around us. Like Hi-Fiving another wheel-chair bound Oxygen user as we are pushed by each other in the Hospital. Have I had scary moment? You bet but I hope God will give me the strength to weather those set backs and keep me positive. And when it's my time, so be it. Because I will go knowing that "I've had a good life all in all" (John Denver).
Charlene Marshall
Hi Russel,
Thanks for reading my column and contributing your comments. I find it so encouraging to hear from others who are 5+ years post diagnosis, as I believe I've said this before, but it really reinforces for me that the prognosis associated with this disease is just a number. Thank you for sharing a bit about your experience, you've given me a lot of hope.
I also couldn't agree more with you about the importance of savouring the time we have left, and focusing on bringing joy to those we love around us. I think many people can resonate with these wonderful words you share! I've gathered a lot of strength from your comments Russel, thank you again for sharing.
Best wishes to you!
Charlene
Scott Carpenter
I just found out that I have IPF this past December. I am 53 years old and love to travel. I am going to fly from Maine to Florida for a week in March and will be wearing a mask and carrying hand sanitizer and using it frequently. My whole family including my mother and some friends are taking a service trip to Safe Passage in Guatemala City, Guatemala this May for 9 days. I am planning to rent a POC so I can hike an active volcano while we are there God willing as well as have the oxygen I need while I sleep at night! As George Strait's song goes, "I ain't here for a long time, I am here for a good time"!
"Here for a Good Time by George Strait
I'm not going to lay around and whine and moan
'Cause somebody done done me wrong
Don't think for a minute
That I'm gonna sit around and sing some old sad song
I believe it's half full, not a half empty glass
Every day I wake up knowing it could be my last
I ain't here for a long time
I'm here for a good time
So bring on some sunshine, to hell with the red wine
Pour me some moonshine
When I am gone put it in stone, he left nothing behind'
I ain't here for a long time
I'm here for a good time
Folks are always dreaming about what they like to do
But I like to do just what I like
I'll take the chance, dance the dance
It might be wrong but then again it might be right
There's no way of knowing what tomorrow brings
Life's too short to waste it I say bring on anything
I ain't here for a long time
I'm here for a good time
So bring on the sunshine to hell with the red wine
Pour me some moonshine
When I'm gone put it in stone,
"He left nothing behind"
I ain't here for a long time
I'm here for a good time
I ain't here for a long time
I'm here for a good time"
Charlene Marshall
Hi Scott,
Thank you so much for reading my columns and contributing your comments. I love the lyrics to this song! I think I had heard it a long time ago but never really appreciated the words as much as I do now and I'm grateful that you reminded me of them. I think I'll have to download the tune too! Sorry to hear of your diagnosis, it just stinks but it does sound like you have an amazing attitude and outlook on dealing with your IPF. I wish you all the best for your upcoming trips, they sound wonderful and I hope with your POC you are able to do everything you want on your trip Guatemala :)
Best wishes always.
Charlene
Bill McFarland
As Rick Steves says, "Keep on travelin'"--I was in Hawaii using a POC on the plane and rental gas bottles when in the condo, but had a great time with my wife, our daughter and her family. I got a call from my transplant coordinator 8/2 saying that I should "get in line" for a transplant. The following Monday, I got in line and on November 8th got one new (or gently used) lung. I plan to "keep on travelin' in the future as long as God grants me the breath to do so.
Charlene Marshall
Hi Bill,
Thank you so much for reading my column and contributing your comments. I sure want to "keep on travellin" :-). Hawaii is on my bucket list to travel to in the next couple of years so I really appreciate hearing that you seemed to manage and have a great time with your POC and gas 02 rental bottles. This is wonderful. Was Hawaii absolutely beautiful? I've heard it is and I would imagine my breathing would actually be better there with so much sea surrounding the islands.
Congratulations on your lung transplant, that is amazing news and I hope you can keep on travellin' the world for a long time to come!
Cheers,
Charlene
Debra Apple
I would imagine my breathing would actually be better there with so much sea surrounding the islands.
Melinda Rivera
Scott and Russell, thank you for your encouraging words. I am going to get a different frame of mind and get up thinking "I can do this" instead of worrying about getting out because my oxygen will run out and it is easier to just stay home. I know I have to continue to live life.
Thanks, everyone's stories are just great to read with good advice.
Ayhisha
Hi, it’s so good to hear that I’m not alone in this journey and support do exist. I was diagnosed with PF April 2018, at 36. My doctors can’t same to tell me why so young. I live in The Bahamas where there is absolutely NO!!! support concerning PF. I feel so alone and helpless at times. I have a 10yr. old son and a 9yr. old daughter, they’re my only support group. I’m experiencing some changes and it’s very scary because I’m experiencing them all alone. I still have so much I haven’t seen, but im just living one day at a time, hoping and praying for more time to witness the continuous growth of my children. Thank you!!!
Charlene Marshall
Hi Ayhisha,
Thanks so much for reading my columns and for getting in touch via the comments. It is always nice to hear from others, as I agree, it's so important/helpful to know that we're not alone in this journey. So sorry to hear of your diagnosis, I remember how hard it is to hear you have IPF at such a young age. I imagine it to be even more difficult with two young kids! Do you have a treatment centre you could consult with as guidance for your treatment, even remotely, if nothing is available in the Bahamas? I've heard of others doing this if they don't have access to PF specialists where they live. Might be an option for you? Hang in there and feel free to write any time, we're here for you.
Hugs,
Charlene.