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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