Everything is harder with a relentless disease like IPF
How the lung condition complicated my recent knee surgery
I do not typically use my columns as a platform to complain about my idiopathic pulmonary fibrosis (IPF). Usually, I try to inform or inspire others; however, that’s not always possible with this cruel and unforgiving disease.
I was diagnosed with IPF in 2016 and have been living in a state of limbo ever since. Sometimes my symptoms feel well-managed, but then there are periods that involve numerous trips to the hospital, appointments, and tests. Being a young adult with a lung disease that causes severe shortness of breath and exhaustion is hard, both physically and emotionally.
Because IPF is considered a rare disease, I often get questions about it. I’m regularly asked what the hardest aspects of this disease are, and while there are many things I could say in response, I always give the same reply: its relentless, unforgiving nature.
IPF never takes a break. I explain that having this disease isn’t like breaking a bone or spraining an ankle, where you can rest, ice, and elevate the injured limb. Your lungs are always working, and the condition gets progressively worse, not better. If I’m having difficulty breathing and lie down on the couch to rest, I don’t get a reprieve, because my lungs can never take a break.
In August, I had major reconstructive knee surgery. IPF made both the surgery and my recovery much harder in the following ways:
Lugging around oxygen
For many IPF patients, shortness of breath leads to oxygen dependency. While I’m not fully dependent on supplemental oxygen, I require it when I’m active. I also use it at night.
My recent knee surgery left me with 51 staples in my left leg, requiring a brace and crutches to get around. As a result, everything felt harder, and I was significantly shorter of breath. I couldn’t lug around an oxygen tank, so I had to find an alternative. This involved using a walker so that I could put my concentrator or a small oxygen tank in the basket while moving around. I also relied more on my D-sized tank that I could put in a backpack, keeping my hands free for the crutches.
Sedation requirements
During my preoperative appointment, I spoke with the anesthesiologist about IPF. We decided the safest bet for me was not general anesthesia, which could put me at risk of a pulmonary collapse. Instead, I received three different types of sedation, including a spinal anesthesia that has left tingling and numbness in part of my knee. I was told this was a small risk, and I’m hoping it won’t be permanent. Thankfully, the sedation combination worked, and I got through the surgery without any damage to my lungs — but IPF certainly complicated the process.
Increased blood clot risk
Blood clots are a risk for anyone having surgery; however, those with lung diseases are at an increased risk. I talked about this extensively with my surgery team, and thankfully, I had no issues with clotting.
However, I did lose a lot of blood unexpectedly. It was replaced over the next few days with transfusions, which increased my risk for blood clots even more. I am now required to take an anticoagulant for three months post-op.
Added exhaustion
It’s not uncommon for people to experience fatigue after surgery, but IPF patients already experience physical exhaustion regularly. It feels like my knee and my lungs must now compete for my body’s attention, leaving me behind in my recovery. The relentless, unforgiving nature of my disease is exhausting and takes away from my ability to rehabilitate my knee.
How has IPF complicated your life? Please share in the comments.
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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
olivia "betty" thompson
I was hoping to have total knee replacement but my pulmonoligist did not approve as surgery too risky. So I will continue injections every 4 months. I am 84 and diagnosed with IPR 2.5 years ago.
Thanks for your article.
Betty
Robert Arista
People are always asking how am I doing, and my response is usually “all right, it is what it is”. Most want to hear that you’re doing better. They don’t know that with IPF there is no getting better. The general public knows nothing to very little about IPF. So, I know my response may sound petty to some. Having the IPF community has been very helpful to me because I can see others understand what an IPF patient deals with physically every moment of every day.
Thank you for sharing, last year I went through the same experience following back surgery, that you did. It seemed that my back recovery was affected by my lung condition and visa versa. I certainly hope you can continue to keep your spirits high.
Skip Anthony
Charlene I read a lot of your post over the years. I to was diagnosed with IPF 2016 and have followed your inspirational post. My progression has pretty much matched yours. My O2 requirements the as you. I still do some golfing and try to stay positive. Thank you for continuing to post while we go through this disease.
J. Philip Jones
Charlene, your talk of how hard it is to deal with IPF reminds me of when my wife and I first discovered she had IPF. That spring she had increasing shortness of breath but we thought it was just an unusually bad hay fever season that was causing her allergies to get worse, Then one night she collapsed as she was trying to go upstairs to the bedroom. At that point she turned to me and asked "Why is everything so hard now?" I didn't know the reason, but told her that she had to see a doctor the next day. The next morning a doctor at the emergency care clinic immediately sent us to a hospital where my wife and I heard of idiopathic pulmonary fibrosis for the first time. Then, like you, she struggled with the disease and oxygen tanks until she got a lung transplant, but unfortunately she later contracted cancer, which ended her life. I hope you keep struggling until some cure of IPF is finally discovered.
Wendell
I also have IPF about eight years. I read most are taking the pill but my doctor which I am a vet said he would make the pill last thing. He has me using a nebulizer and a vest pump which help remove the mucus’s from my lung. Yes! I get short of breath and tired but everything at the moment is at a stand still.
Jim
I am in my sixth year with IPF and would recommend Pirfenidone. Still FVC at 69% and in my third study drug trial. Currently in the Fibroneer study. The pill at least slow down the progression of the disease and that is well worth the cost. I don’t recommend Ofev because it has more and worst side effects
Jim
Barbara Pantaleo
I was diagnosed with IPF 1 1/2 years ago. I am on oxygen 24/7 and use a rollator is walking outdoors. I think one of the keys to staying healthy is exercise ( breathing and physical ) The second key is a positive attitude which is difficult on some days. I try to go with the flow, active on good days and rest on bad.
I enjoy this type of forum and knowing I am not alone.
Brenda Colvin
Brenda Colvin. I also have IPF. I will be going into my 5th year in January. Yes the struggles are real. I only have o2 at night. Shortness of breath comes and goes. I still can do most everything but a slower pace. Praying we can all get some relief from all the research being done. Thankful every day for another breath!
Paul Caden
A fellow Canadian who has followed you for 5 years now since I got diagnosed with IPF. Have been taking pirfinidone for almost the entire time which gives me slight nausea from time to time but it's tolerable and has slowed down the progression. .You have been a beacon of Hope and we are all pulling for you. Wish you the best
Kathryn Maguire
I'm glad you are recovering slowly but surely. This relentless disease does make things challenging for sure. Wishing you the best.
Kathryn
Derek Starkiss
Charlene You are inspiration to all of us that suffer with this disease. Considering you young age your positive approach, I hope has and is making others realise it’s not just an old people’s illness! I’m 74 and was official diagnosed in 2019. However I knew at least a year before as my brother had contacted me to suggest I get tested as he had been diagnosed with IPF and noted on our fathers death certificate the he had died through IPF at 81. My brother died 5 years ago! I consider myself lucky that it was discovered nearly and I have been on OFEV since 2019 and at present remain steady though day to day can sometimes be very tiring. It helps to have on 2 trials with my specialist. So I get tested every 4 to 6 weeks. I recommend to anyone on the blog to inquire about trials as this is the way eventually ( We hope) a cure can be found.
Lorna Lancaster
I was diagnosed near the end of 2019 but was not prescribed Nintedanib until, March of this year. At that time I,was still pretty active
and just paced myself, resting until oximeter showed acceptable levels which did not take long. Sadly, that is no longer the case..In July things started to change and now just the thought of the slightest activity leaves me.so breathless I cannot move. Something tells me I
am about to confirm NICE's website statement that the median survival rate for IPF patients is 3 to 5 years from diagnosis.
In the meantime, does anyone use Carbocisteine to suppress mucus and if so when do they take it and does it do the job?
Bouleversee
Tammy Lewis
Diagnosed 3yrs ago ifp.This year,have had 2 flare ups.Furst in Jan.,no real problems,2 days in hospital.Aug was rough.6 days in hospital,now oxygen 5 ltrs,24/7.I have hypoxia also.I'm sorry for anyone going through this.I'm almost 64,and the least exertion.i stop and sit down for a few minutes.No more going to the store.This is rough.Prayers to all.