A Guide to Items Pulmonary Fibrosis Patients Pack for Trips

Charlene Marshall avatar

by Charlene Marshall |

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As I continue to recover from an acute health setback I wrote about earlier this month, I’ve been seeking ways to prioritize and improve my mental health. While I’m not completely alone, it has been tough to remain indoors and away from the many people I love, especially as the summer weather emerges.

In an effort to prioritize my mental health this week, which has been particularly poor after another short hospital admission, I decided to spend some time at our cottage. I am happy to work from here, and I anticipate the change of scenery will help, along with calm walks on the beach at sunset. For safety, family members are close by at their cottages, but I’m happy it’s just my dog and me spending time away from the chaos of the city.

Since being diagnosed with IPF in 2016, I’ve focused on advocating for patients with this disease and spreading awareness about this terminal lung disease. I have been privileged to do that at Pulmonary Fibrosis News, the Pulmonary Wellness Foundation, and the Breathe Support Network. Through these platforms, I’ve been able to interact with patients and publicly share stories of my experience as a young adult with IPF, which has helped others better understand the disease over the years.

In line with these goals, and following a conversation with a friend while packing to go to the cottage earlier this week, I decided to share the supplies I need during a trip or anytime I’m away from home for an extended period. After the conversation, I realized that many people might be unaware of all the precautions and preparations people with IPF need before leaving home.

Following are items that likely wouldn’t be found on the packing list of someone who is healthy, but are common for those of us living with IPF.

  • Thermometer: A thermometer is important because I regularly have low-grade fevers, which often are the first sign I’m coming down with something else. I have several thermometers around my house and check my temperature several times a day. The cottage is hours away from my local transplant center, so it’s important to be proactive in monitoring fevers. I rarely leave home without a thermometer, and I packed it for my week away from home. 
  • Inhalers and refills: After falling ill last month, I now depend on multiple inhalers. I’m not sure how much my lungs have been damaged by that illness, but I do notice a difference in how I feel. I now need multiple inhalers at various times throughout the day to keep my IPF cough under control. Ensuring I had all eight of these, along with refills, was an unusual sight in the suitcase I packed for the cottage.
  • Extra nasal cannulas and tubing: While organizing these items, my friend asked why I was taking more, since I already had a nasal cannula connected to my portable oxygen concentrator (POC) and oxygen tank. The reason is that if anything punctures the cannula I am using, my ability to get oxygen through it would be compromised. Also, it occasionally gets caught under something and breaks. I always need to pack extras as a precaution.
  • Extra oxygen tanks: Along with my POC, I also have multiple small oxygen tanks with me in the event I lose power. While my POC battery keeps it going for awhile, an extended power outage is not uncommon at the cottage, given our proximity to the lake. Having oxygen tanks here reassures me that I will have enough oxygen during a power outage, or at least to give me time to reach another power source if needed.

 What are some unusual items for your packing list as a patient with IPF/PF? Please share in the comments below. 

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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.

Comments

Chuck Harrison avatar

Chuck Harrison

Hello my more than special friend,
To say from February till this very day has been my favorite time of my life with this disease would be the first lie I have writtin to you ! A lot has happened to me in this time period it just boggles the mind . I have slipped so far so fast it's almost comical , in fact it is . But in this letter I'm going to spend time with you , by reading of late you have had a rough ride , is something you can speak about or you wanT to hold off , Charlene I'm going to do something I usually never do . I am on messager I would like to know if you would contact me so I anD you talk privately , let me reassure there is nothing in the shadows here . If you wish I'll be waiting
Your friend as always

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Chuck,

Thanks so much for writing my friend! I'm sad to hear that the disease progression continues for you, and that it's been a tough few months. IPF is so awful! I'd love to correspond with you -- I don't use Facebook messenger a lot, but I will email you and see if we can connect that way or another way that works. Would be happy to keep in touch my friend!
Charlene.

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Dave Caldwell avatar

Dave Caldwell

My name is David. I have had ipf for 10 years and have recently started on ofev. Just starting my third month. Very expensive. Had a heart attack 3yrs ago. Diabetic and 76 years old. I am the poster boy for the corona virus. My good friend died last October after a failed lung transplant. He was 2 years younger and he only found out 2 years ago that he had the disease. Its frightening needless to say.

Reply
Charlene Marshall avatar

Charlene Marshall

Hi David,

Thanks so much for reading my columns and reaching out via the comments. I certainly agree with you re: the cost of Ofev, it is a very expensive drug. So sorry to hear of your friend's unsuccessful lung transplant outcome. Will you pursue this route, Dave? It can be very scary to compare our experience/diagnosis with those of others, but important to remember that IPF "behaves" so differently in everyone. I hope you continue to do as well as possible with it. Thanks for writing!
Charlene.

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Joy Hoffmann avatar

Joy Hoffmann

My main problem is the worry.
I have not had a breathe test since being diagnosed in March 2020 and on OFEV since that time as well
I will have a test in November 2020.
I follow all health suggestions
Eat right..exercise..walk...OLEV gives me no side effects. I have not had the much discussed cough.
I see no benefit in monitoring my oxygen level.
It seems that there is so much research being done with no cooperation among the researchers.
It behooves the scientists to not find a cure because then how do they earn their keep?
The FDA always drags their feet because that is their bread and butter.
We all know that so much of the money goes to administrations costs.
Yes, a cure could be found quite quickly if that was in their best interests
As we know the rich get richer and the sick suffer.
Cynical.you say?
I say honest and realistic.

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Joy,

Thank you so much for reading my columns and reaching out via the comments. I'm glad to hear you're tolerating OFEV and that you're focused on eating right and exercising where you can, that's important. I know the worry and pondering can be overwhelming, and I hope your upcoming breathing test goes well. I don't know if you read my column after I attended the PFF Summit in Texas last year but my frustrations were eased a lot when I realized how many good people are "in our corner" and wanting to find a cure for this disease. Hang in there, I know it can be discouraging but there are a lot of people working hard for us.

Take care,
Charlene.

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Pamela S avatar

Pamela S

Joy Hoffman,
If you do not monitor your oxygen levels, how would you know if you needed to increase your rate on your POC ? You didn’t say that you were on supplemental oxygen, I just assumed. I believe as the disease progresses, an increase is
warranted, if I’m not mistaken. I am taking the Ofev, and started at 150mg twice a day. However, I had several side effects, one of which was vaginal bleeding. I’ve not had a
uterus nor tubes, ovaries for 25 yrs, so this was quite alarming. My total hysterectomy hadn’t caused any problems previously, so my Pulmonologist wanted me to be checked by an OB/Gyn to make sure nothing else was going on. Nothing, so my Dr decreased my Ofev amount to 100mg twice daily.
My side effects were greatly reduced. I have had a cough all along. I take an over the counter
tablet daily, that is supposed to thin the mucous from my cough. That helps, but my nose begins to run occasionally. I’m interested to learn more about this disease as time will go on. I’m 64 yrs old, and my pulmonologist hasn’t a clue how my
journey will go. Every case is different she said. I have read that the fatigue increases as time goes on. And, perhaps I’ll have to give up driving later on. Does anyone know if your vision is affected? Seems like mine is changing.
Thanks for any other information you can give me, Joy or Charlene

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Pamela,

Thank you so much for reading my columns and reaching out via the comments. That said, I'm so sorry to hear you're dealing with this cruel disease and the terrible side effects of Ofev. I've not heard of a couple of them before, were you able to get into the OB/Gyn to find out more about these side effects of Ofev? If you're comfortable sharing, I'd be curious to know. It sounds like nothing, but I didn't know if you'd had any further issues or follow up since so I thought I'd ask. The cough is definitely frustrating and unfortunately the runny nose, throat clearing and congestion can sometimes be common for IPF patients. Every case is different, but I always encourage people if their doctors aren't familiar with IPF (and many aren't) or they want more information, to get a second opinion. This was a popular discussion topic on our forums just recently, which you're most welcome to join. It's free and its an amazing platform of supportive patients and caregivers alike. Here's the link if you're interested: https://pulmonaryfibrosisnews.com/forums/

Take care and keep in touch.
Charlene.

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James Dawson avatar

James Dawson

I have tried both of the recommended pills for IPF. I had bad side effects from both of them, so my Doctor put me on Micophenolate Mofetil. I worked up to 6 pills per day. I have been on the 2 years now and no side effects. The pills say they are used for lung transplants, but in my case it slowed down coughing, tremendously. Ask your doctor about it, if you can’t tolerate Ovey or Esberit.

Reply
Charlene Marshall avatar

Charlene Marshall

Hi James,

Thanks so much for reading my column and reaching out via the comments. Hearing members' experiences is so valuable, as we can learn so much from one another. I know a lot of people cannot tolerate Ofev or Esbriet, so keeping this option in mind is really helpful, thank you for sharing. I'm so glad it slowed down the coughing in your case!
Take care,
Charlene.

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Gita avatar

Gita

Hi..my name is Gita
My husband is 66 years of age twice he had prostrate cancer .the first treatment was the brackkie therapy3
3 Years ago he once again had prostrate cancer and having
Hormonal treatment yet
He can not leave cigarettes now both his lungs he was diagnosed with ips

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Gita,

Thank you so much for reading my columns and reaching out via the comments. However, I'm really sorry for your husband's diagnosis of IPF. Are you seeing a pulmonary specialist for his diagnosis? They should be able to help you/him cease smoking if this is something you're striving for. There are assistance programs out there. How is he doing with the IPF, does he have any symptoms?

Charlene.

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Anthony avatar

Anthony

Hi my name is Anthony .
I just turned 60 a few months ago and for my birthday I received my diagnosis of IPF .
I’ve been complaining about not being able to breathe right and have uncontrollable hypertension for years (2014) . I had a cat scan done and I didn’t hear anything about it until I passed out while kicking a soccer ball with my 15 year old daughter. I was told that I have IPF and proceeded to listen to my options and although limited for people who have IPF, I was started on all day oxygen and Ofev and the tests continue I.e. pulmonary function tests nuclear medicine , cat scan with contrast ect. They also mentioned a lung transplant since I’m still relatively young enough . The last couple months have been playing with my mind (depression/anxiety) . I’m a very optimistic person and one who believes in miracles, this is the first time I’ve ever spoken about my disease other then with my doctors and pulmonary team.
I thank you for sharing your story because it’s giving me a chance to let me know that I’m not alone. God bless all of you.

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Anthony,

Thanks so much for reading my columns and reaching out via the comments. So sorry to hear of your IPF diagnosis on your birthday - how unfair! That must have been a few scary moments leading up to your diagnosis, I'm sorry that happened to you and your family. I'm glad you found us, and have a platform to speak about your story as needed, please feel free to reach out anytime. It can be overwhelming to try and manage on your own. Hang in there, and continue to believe in miracles and be positive when you can :)
Sincerely,
Char.

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Dr Manisha Allk Chourey avatar

Dr Manisha Allk Chourey

Hello
Everybody lot crying and recognize and face the truth at age of 47 i am having IPF just before Diwali 2020 , though have fever first with long company of artritius from 2004. I am quite aware about this but it comes this way not at all sure.
Hope how many years ....months....days....

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Dr. Chourey,

Thanks so much for reading my columns and connecting via the comments. However, so sorry to hear of your recent IPF diagnosis and the young age of 47. Hang in there and be gentle with yourself; the time following our diagnosis can be tough. Seek out credible information on this disease from websites that can be trusted: Pulmonary Fibrosis Foundation, etc. There is a lot of scary information online and much of it isn't accurate either. No one can really tell us how many years/months/days.... do you have a good medical team involved in your care? That is important too.
Charlene.

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Jill Thornton avatar

Jill Thornton

I have been on Ofev since July and have trouble with side effects. I usually have a 2 week break every couple of months and am on the lower dose. What baffles me is that I dont have any cough, just breathlessness when going upstairs or hills. I'm asthmatic so am used to that. The only symptom I have is the tiredness. I've been couped up since lockdown in March and cannot wait to have vaccine and then I can be free again. Thank you

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Jill,

Thanks so much for reading my columns and reaching out via the comments. So sorry to hear you're enduring the difficult side effects of Ofev; it took me ages to adjust to this medication as well. I had to go off it completely a few times and then titrate back onto it very slowly. I'm managing now but sometimes the side effects still happen sporadically and are very frustrating. I can't wait for this pandemic to be over as well, and have some freedom given back to all of us. What a tough year this has been - here's hoping 2021 is much better! Thanks for writing and keep in touch.
Sincerely,
Charlene.

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Paul E. Gardiner avatar

Paul E. Gardiner

My name is Paul,
I'am a 72 year old military veteran where in 2014 a CAT scan identified lung scarring. This past year I complained to my Primary Care Physcian shortness of breath. Pulmonary function test and a CAT scan showed some concerns for IPF. My Pulmonologist sent me for a lung biopsy. After several more test the result was a diagnosis of IPF. Dr. started me on Ofev, which I had severe side effects. I stayed with the medication for six months hoping I would overcome the side effects. After losing 50 lbs and in agreement with my Pulmonologist we stopped the Ofev for six months. Recent CAT scan and pulmonary function test reviewed IPF was getting worse. We agreed to start on Perfenidone and inhalers. So far no side effects. It has been a long road, I miss my grandchildren, but out of respect to my condition and the Covid-19 they face time me.
As everyone can not wait to be able to get back out and play golf again.

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Paul,

Thanks so much for reading my columns and reaching out via the comments. Sorry to hear you're also dealing with this cruel lung disease! Ofev sure can be a tough drug to adjust to for many, that is often a topic of discussion on our PF forums: how to manage the side effects of Ofev. That said, I'm glad your Pulmonologist was open to Esbriet and really happy to hear so far you haven't had any side effects. I hope that continues! Here's hoping things will improve soon regarding COVID-19 so we can all go back to enjoying the things we love again, like golf and spending time with family.
Thanks for writing!
Char.

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Graham Hirst avatar

Graham Hirst

I was diagnosed with I. P. F. two years ago.
I take OFEV capsules which do me no harm.
I have recently been diagnosed with kydney cancer and am awaiting a decision from my consultant to decide if I can have my water pipe and kydney be removed due to me having I. P. F.
This is a tense time.

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Graham,

Thanks so much for reading my columns and reaching out via the comments, however, I'm sorry to hear you're also dealing with this cruel disease. I'm glad the OFEV isn't causing any issues for you, that can be a tough drug to adjust to. Having IPF always seems to complicate necessary surgical procedures, doesn't it? I'm sorry you're having to make the decision about the water pipe and kidney, I hope your doctor can guide you in a helpful direction. Take care of yourself and thanks for writing.
Charlene.

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Pamela Seastrunk avatar

Pamela Seastrunk

Hello, My name is Pamela,
I’m going to turn 64 in April. Three years ago I had an episode at work where I couldn’t breathe. After about 15 mins of physical lifting, it felt as if I had a inter tube around my rib cage, squeezing more and more. I thought I was having a heart attack, actually. My co-worker helped me to a chair, as I was very dizzy, too. My oxygen level was in the low 80’s, so I was brought to the hospital, still thinking I was having a heart attack. A lot of tests were run and, as it turned out, I was diagnosed with pulmonary fibrosis.
I was relieved it wasn’t a heart attack. (Little did I know, IPF was just as bad.) My pulmonologist gave me the information and options. Oxygen 24/7 and She wanted me to begin Ofev, which I did. I had the side effects, so after 4 mos, she lowered my prescription dosage of that.
I am having anxiety/depression bouts now, usually once a month, lasting a week at a time. Trying to be optimistic that I have a few more years left. But, fatigue and rest doesn’t leave me much time to enjoy life. I’m gonna make the effort though. More sunshine and warmer weather will make it all better, I’m sure. Thanks for posting how others are getting through this disease. It helps I’m not going through it alone. My kids don’t want me to talk about the inevitable. They are gonna be positive and wish this away. Haha! Good luck with that, eh? Tired of being alone.
At home. Away from the covid. Feeling fatigued. May stop the Ofev. Not sure it’s working. But, who would know? Thanks for listening.

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Pamela,

Thanks so much for reading my columns and reaching out via the comments. So sorry to hear you're dealing with this cruel disease too, and are now dealing with anxiety/depression. Unfortunately, that is quite common with many of us facing this life-threatening lung disease and it can impede with our enjoyment of other life activities. The warmer weather and sunshine does help, but talking to a professional does too remember. Sometimes it just gives an opportunity to get our fears outside of our head by talking, and professionals can help validate and/or problem-solve strategies with us too. Please do know you are welcome to write us any time and if connecting with a group/community of people who really "get" what it's like to live with IPF, we'd love for you to join our forums: https://pulmonaryfibrosisnews.com/forums/ .. there's a lot of really amazing people on there. Take good care, and reach out anytime.
Charlene.

Reply
Bruce Rupert avatar

Bruce Rupert

I was diagnosed with IPF in 2017. I am a Vietnam veteran who was exposed to Agent Orange. Since that time I have become aware of a significant number of Vietnam vets who have IPF or who have died from it. I know there are many who did not have exposure to Agent Orange who have IPF but wondered if any nexus to date has been discovered. Tried OFEV did not work for me. Thank you

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Bruce,

Thanks for reading my columns and reaching out via the comments. Sorry to hear of your IPF diagnosis, and exposure to Agent Orange. This is discussed on the PF forums (https://pulmonaryfibrosisnews.com/forums/) as a few other patients were exposed to it as well. That is a great platform to get information as well. Sorry to hear you didn't tolerate Ofev.
Take care,
Charlene.

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