Why Common Illnesses Pose Greater Risks for Those with PF
I am slowly emerging following several weeks of hospital visits and confinement to bed. I’ve been extremely weak and unable to eat thanks to bacterial pneumonia and the influenza virus.
Either of these illnesses alone is enough to kill a patient living with a chronic lung disease such as idiopathic pulmonary fibrosis (IPF), so I am thankful to be here and on the mend, albeit slowly. While I’m feeling a little better, I can’t help but wonder about the permanent damage these illnesses have done to my lungs.
Many patients living with IPF are immunocompromised because of the medications we take to manage our disease. We’re susceptible to catching bacterial infections and viruses, and when we do become ill we’re in danger of those illnesses causing significant harm. I’ve had multiple rounds of antibiotics, antifungals, fluids, and several hospital-based interventions. While those around me might be tired of hearing me advocate for the flu shot and the importance of staying home when you’re sick, my experience is a reminder of the importance of taking precautions, particularly when you’re in the vicinity of someone who is immunocompromised.
I understand that it is impossible to avoid exposure to illness entirely, especially during cold and flu season. However, it is essential that all patients and their caregivers take the proper precautions to avoid getting sick. While the acute symptoms of these illnesses are unpleasant for patients and may lead to hospitalization, I fear the permanent damage and risks associated with an IPF patient getting sick.
During the last few weeks, my life was at risk because of the symptoms of these illnesses. We don’t yet know if this episode has caused permanent lung damage. Here are some of the reasons getting sick is so risky for patients living with IPF:
- Inability to eat: A common symptom of a stomach virus is loss of appetite. While this might not be an issue for healthy people, it can be problematic for those of us who have to eat to take our medications. I am on Ofev (nintedanib), one of two antifibrotic therapies used to manage IPF. Unfortunately, the medication has gastrointestinal side effects. Eating a small meal when I take Ofev combats those unpleasant side effects, so being unable to eat means I can’t tolerate the medication that helps to slow fibrosis progression in my lungs. In the short term, this might not be an issue, but over longer periods without Ofev, my risk of disease progression increases.
- Vomiting while using supplemental oxygen: Vomiting is incredibly unpleasant. And getting particles stuck in the nasal cannula of your supplemental oxygen adds another layer of disgust. Oxygen tubing and cannulas must be changed frequently when we’re sick, to reduce the risk of reinfection. We have diminished lung function and, subsequently, poor oxygen saturation, which makes vomiting scary because of the risk of choking. My physician told me I was at risk of aspirating on my vomit when I had the flu.
- Irreversible loss of lung function: Viruses and bacterial infections often settle in the lungs of those who are immunocompromised. When this happens, the physiological damage to the lungs and loss of function are permanent and irreversible. For those with healthy lungs, a small decline in function may go unnoticed. But for those of us who already have reduced lung function, any loss is significant.
- Increased risk of secondary exposure: People with IPF are rarely able to fight off serious illnesses such as bacterial pneumonia on their own and will likely require a hospital admission. A hospital stay poses an increased risk of secondary exposure to other viruses. My medical team discussed with me the likelihood that I contracted influenza while attending a follow-up appointment to assess my pneumonia.
Contracting a virus or bacterial infection is risky for anyone. But the rapid progression of the illness for an IPF patient can be fatal if medical treatment is delayed. Doing your best to avoid illness as a patient is crucial because the risks with IPF can be permanent and significant.
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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
Wendy Dirks
I'm so sorry to hear this, Charlene. Everything say here is so important, whether we are young or old, if we suffer from any form of PF.
Charlene Marshall
Thanks so much for reading my column and reaching out Wendy. I so appreciate your kind words - yes, so important for us to stay as healthy as well. When I wrote this column I hadn't yet had a PFT to see the damage to my lungs, but unfortunately it was fairly significant, especially that FEV1 value. Thanks for writing - I am so thrilled to be on the mend, albeit slowly.
Warm regards,
Charlene.
Lorie
I experienced the flu following pneumonia thing this year as well. It was a scary time. I developed pneumonia while on a cruise and required care in the cruise ships infirmary. They confined me to quarters as soon as it was safe to do so, but I still had to return to the infirmary periodically. At some point in time, I was exposed to influenza A and became ill with this before I had a chance to recover from the pneumonia. Stuck on a cruise ship in the Greek Isles, very ill,far from home. We had not purchased travel insurance so this also became a very costly mistake for us that further limited our options for care. We will NEVER make this mistake again. This was my first major illness since diagnosis so we were unsure what to expect. This was all back in September. Here it is, December, and I am just now returning to my baseline. I'm just grateful to have finally returned to very near my prior baseline. I've now come to realize that cruise ships during cold and flu season and PF are not compatible. There are too many people out there that don't believe in flu shots.
Charlene Marshall
Hi Lorie,
Thanks so much for reading my columns and reaching out via the comments. Your experience sounds awful - I can't imagine being on a cruise ship and so far from home feeling like I did the last few weeks. It has wiped so much out of me, I can't believe it. I'm so sorry you went through that, and then to add the financial implication on top of it... that must have been so difficult! I am so glad you're doing okay now, even though I know the recovery has taken ages for you by the sounds of it. Such a scary time for me as well. Thanks for sharing your experience - I am also glad (and feel grateful!) that you've emerged through these two illnesses as well. Take care!
Charlene.
Hans Fink
Hello Charlene.
Sorry to hear of your recent situation with your IPF & health issues. Glad that you are back on the road to recovery. Regarding the side-effects when taking OFEV (I also take the same medication), have you considered taking the Chinese Herbs from Wei Laboratories? It definitely has helped me a lot. Incidentally it was on the forum that you administer that another IPF patient discussed these Herbs. I thought that with our IPF situation, what do I have to lose & it sure does the trick in keeping the side effects in check. Wishing you all the best in managing your health. take care.
Charlene Marshall
Hi Hans,
Thanks so much for reading my columns and reaching out via the comments. I am definitely on the mend, though it seems to be taking a long time and a lot out of me to recover. Usually when I can eat well, and regularly, the side effects of Ofev are very tolerable. I haven't tried the herbs from Wei yet, though I've heard a lot of positive things about them. The reason I haven't is because of the financial constraints - being off work for this long is going to be hard enough to manage everything and I've heard Wei is quite expensive. Really glad it is working for you to keep the side effects in check, that is wonderful.
Happy holidays and thanks for writing.
Charlene.
jaime l manriquez
Hi Charlene, I m so sorry you´ve been sick, It is so true what you said in your post , I´ll share my experience with you: in may 2017 I had a severe bronchitis for three months lots antibiotics taken, I was working by then, when I finished and got well, went for TC scann, The damage in my lungs was severe, since then can´t work, I get tired very easy, I think it damaged at least 1/4 of my lungs on top of what I already have. I agree with you , on how careful we have to be with infections when we have this terrible desease. Get well soon.
best regards
Charlene Marshall
Hi Jaime,
Thanks so much for reading my column and reaching out via the comments - as always, it is wonderful to hear from you! Thanks for your kind words on my post, yes it is so important we stay as healthy as we can. Sadly, this latest illness has caused irreversible damage to my lungs. So sorry to hear this was also your experience from your 2017 bout with bronchitis! So important we do our best to stay healthy, thanks for reassuring others of this with your story.
Kind regards,
Charlene.
Nancy Tyler
Could you say more about the Chinese herbs
Maureen Terhune
Hi Charlene,
I was so sorry to read what you had been through and it's terrible about your reduced FEV1. I hope you will regain at least some, if not all of your lung function. But I do appreciate what you are telling us about the dangers of catching illnesses. At this time of the year we have to make decisions as to whether to attend Christmas parties, concerts etc. How to get some good times over the season, without taking huge risks?
And my sympathy to Lorie for the really scary time she had on the cruise. I have been afraid to travel outside of Canada this past year as I can't get insurance because of all those "has to be stable, same medications for six months" rules and I guess we were right not to risk it - you never know.
Take good care of yourselves, Charlene and Lorie, and I hope you both start to feel better again.
Charlene Marshall
Hi Maureen,
Thank you so much for reading my columns and reaching out via the comments. I really appreciate your kind words about my recovery, specifically the FEV1 number. I too hope that with rehabilitation and gaining strength, my next PFT is a bit better with this value as I'd hate for this lung function to be my new normal. It would be such an adjustment for me because I can't use my portable concentrator on this litre flow, which would be hard to accept if it were permanent. I too was sorry to hear Lorie's story while on a cruise - I can't imagine getting that sick so far from home. I am really happy that she is on the mend!
Happy holidays and thanks again for writing.
Charlene.
David Swain
Hello Charlene. I’m so sorry to hear of your recent issues and thankful that you are pulling through. I’ve taken on board all your advice, although I myself haven’t had any problems with illnesses due to contact with other people. I started OFEV 2 months ago and haven’t experienced any side effects so far. Also I started the Wei herbs 6 weeks ago, but haven’t noticed any benefit yet. But I’m hoping there will be as they are very expensive. All that is positive, but my bad news is that we have had to postpone our visit to New Zealand, planned for January, due to my wife having a slight stroke, followed by extremely painful shingles. We are now hoping to go in March. Thankfully we had taken out travel insurance, which is so important for those of us travelling with IPF. (And those with them). Thanks for being so responsive and positive in this forum. It must have been really difficult while you were poorly yourself. Keep smiling and taking the pills. ?? David
Charlene Marshall
Hi David,
Thanks so much for your kind words, I too am grateful I am pulling through as I know pneumonia and the flu can be very serious for patients living with IPF. SO glad to hear you aren't experiencing any of the unpleasant GI effects from Ofev, that is wonderful news. Hang in there, it has been proven effective to slow down the disease progression but I know it is hard to tell that sometimes when we're aware of how we feel.
I'm so sorry to hear about your wife's stroke and shingles - what a tough time for both of you! Is she on the mend at all yet? I know it can take a long time. So sorry you have to delay your trip but glad you can go in March. Thinking of you and your wife and wishing you nothing but the best for the upcoming holiday season. Warmest regard, Charlene.
Ron Reynolds
Hi, Charlene
I also am a PF patient. I was finally diagnosed three years ago and we are at a stage where I can no longer fly, and of course, no cruises.
My wife and I are making the most of our time and although it is difficult at times we do discuss the future and we have prepared for the end stage.
I am 80 years old and have enjoyed a great life, we have travelled around Australia in a Motorhome for 7+ years and experienced many trips overseas. I guess what I’m saying is don’t let the condition define you, at times it will preside but not for long, we won’t let it!
Lastly while it has now limited some of our activity we are having fun, finding new smaller ways of continuing our life. And there will no song left when I leave, but I hope there will be echoes of laughter.
I hope you let us know when you visit us down under. Happy and a blessed Christmas. Ron.
Charlene Marshall
Hi Ron,
Thank you so much for reading my column and getting in touch via the comments! Sorry to hear you're also dealing with this cruel disease - man, it can be unforgiving huh? Glad you're making the most of your time with your wife. It is important for all of us (even those who do not have a life-threatening illness, I believe) to focus on quality time with those you love vs quantity. We never really know how much time we have left! With that said, I do hope to visit Australia in 2020! I have friends in Victoria, NSW and SA as I did some schooling "down under". I'll definitely connect as I plan my trip - I'd love to meet you and a few other forum members who so kindly write me about their IPF experiences. Warmest regards, and happy holidays!
Hugs,
Charlene.
Holly W Patient
Hello, Charlene. I am so sorry to hear of your recent illness and its consequences. I hope your recovery speeds up and ultimately reverses some of the damage.
Though I am now immunocompromised due to post- transplant meds rather than IPF, the points you make are also valid for me and our fellow transplant recipients. Thank you for the reminders to remain vigilant, to wear our masks, wash our hands, and avoid crowds. It's easy to become complacent when things are going well. For you to share your concerns for all of us during your own time of difficulty just reinforces what I've learned: that you are amazing!
Charlene Marshall
Hi Holly,
So nice to hear from you, thanks for reading my columns and connecting via the comments. It sure has been such a struggle to get over this virus! Glad the column reiterated the importance of using masks and being diligent when it comes to hand hygiene. It's so tough though, especially during this holiday season but I never want to endure the last 4 weeks of illness ever again, so I'll be better with this going forward. Thanks for your kind words, means a lot. I hope those new lungs are still treating you well!
Charlene.
Kay
Hi Charlene so sorry to hear of your ipf, my daughter was diagnosed with ipf at the age of 27, in 2008 we did have any idea wot it was at the time but ova the yrs we got to know more about it, my daughter went through so much pain she was such a happy girl didn't show it always tried to get on with her life best she could, she got so bad and needed a transplant in 2015 she got one it's only lasted 2 yrs, my beautiful passed away 2017 we were devestated I miss her so much 36 yrs old I hope you you are on the mend lots of luck to you Marie's mam xx
Charlene Marshall
Hi Kay,
Thanks so much for reading my columns, getting in touch with me and sharing a bit of your story. I am so very sorry to hear of the passing of your daughter. I can't imagine how difficult that is, and has been, for you and your family. IPF is such a cruel disease and it is due to stories like yours, that I am trying to highlight that IPF isn't just a disease of the elderly, as people assume. I will do this for your Marie! Thinking of you lots and sending you much love. Thank you for being so brave in sharing your story.
Charlene.
Eileen Lewis
So sorry to hear of your illness. This is such a risky time of year. I will be having PFT’s and a CT scan tomorrow. Cough is worsening and growing more SOB. May be a viral thing or maybe worsening of IPF. Sleep is interrupted too. Meanwhile I am inside a lot. My day consists of clearing a.m. phlegm, trying to exercise a little, reading and taking naps as I’m exhausted. Then the cough returns in force in the evening then phlegm clearing begins again. Hopefully I will have answers next week. While this may be a wonderful time of year for some, it is a real challenge for the IPF patient. I hope you are much better. Keep the faith. Eileen
Charlene Marshall
Hi Eileen,
So nice to hear from you - I hope you're doing as well as possible. As always, thanks so much for reading my columns and connecting via the comments. It is such a difficult time of year, risky for many of us due to the exposure to various respiratory viruses. I hope your PFTs and CT scan went ok, and that you have some answers for the worsening SOB and cough. That is so difficult, sorry to hear this! It sure can be a tough year for many patients, I agree. Hang in there and please connect anytime! Think of you often, Charlene.