Behind my clear crystal blue eyes and my gleeful smile, you did not see the pure terror I was feeling, my mind that was in turmoil unraveling at the seams, my heart hammering against my chest, my lungs working harder than necessary, my pulse racing a mile a minute, or the indecision plaguing me and causing me to lose focus.
If you saw me Monday morning, I looked normal. I arrived at work and went to work almost immediately. I said hello to people and carried on normal conversations. Unless you spoke with me, you probably did not know that I had spent the morning on the phone with my husband, mother, and physician trying to determine when and if I had to go to the Emergency Room for the brewing cellulitis infection in my finger.
Until this past Monday, I had been fortunate enough that I had not been hospitalized for a cellulitis infection since my initial hospitalization when I was thirteen. This had been no easy feat. For the last eight years, I practiced proper skin care, using lotion and Neosporin when necessary, and I kept prescribed oral antibiotics in the house in case a suspected cellulitis infection reared its ugly head and warranted medical intervention.
Unfortunately, as you can assume, my lucky streak came to an end this week when I was hospitalized overnight for a cellulitis infection in my middle finger on my “lymphie hand.”
Last Monday started off like any other typical Monday. I woke up, showered, and dressed for work. Before leaving for work, I did not notice anything unusual with my right hand or fingers.
While driving to work, which is only 25 minutes away, I noticed that my middle finger was suddenly very red, swollen, warm, and painful to touch. What was barely noticeable when I left my house, was suddenly very uncomfortable and becoming painful.
When I arrived at work, I called my physician who treats my Lymphedema. We discussed my options: Emergency Room or prescription oral antibiotics. But, she wanted me to go to the Emergency Room immediately to be seen. I, on the other hand, was stubborn and did not want to leave work.
Over the next thirty minutes, a metaphorical fog had descended, which clogged my ability to think, reason, and make sense of the situation. I was unable to focus on anything except for the cellulitis infection.
What if I did not go to the Emergency Room and the infection progressed? What if I went and they laughed at me because it is a small infection? What if I did not go and the infection caused my Lymphedema to worsen? What if I went and did not finish my work? What if I did not go, the infection escalated, and I became septic? What if I went and I wasted my time? What if I did not go, the infection worsened, and my arm or hand had to be amputated? Although it seems dramatic, these were all possible outcomes.
I went back and forth in my head replaying my options until I was nauseated and ready to vomit. Finally, I spoke to my husband, my mother, and a colleague. But, by the time I finished speaking with them, I realized that my cellulitis infection was progressing. It was no longer at the top of my finger. Instead, my finger was more swollen and painful, it was getting hotter by the minute, and it was spreading farther down my finger.
I ultimately made the decision to go to the Emergency Room. If they laughed at me, they laughed at me.
You see, a cellulitis infection for a non-Lymphedema patient can be a serious medical condition, but for a Lymphedema patient, the smallest case of cellulitis is our worst nightmare.
Here is some background information regarding the correlation between cellulitis and Lymphedema:
According to the National Institute of Health, the lymphatic system is a network of “tissues and organs that produce, store, and carry white blood cells that fight infections and other diseases.” The lymphatic vessels carry lymph and white blood cells. “Lymph travels around the body through a network of vessels in much the same way that blood travels around the body through the blood vessels. Whereas the blood carries nutrients and other substances into our tissues, the lymph vessels drain fluid from the tissues and transport it to the lymph nodes. These small gland-like masses of tissue filter out and destroy bacteria and other harmful substances. The bigger lymph vessels then carry the cleaned fluid back into the vein called the superior vena cava, where it enters the blood stream.”
According to the National Lymphedema Network, the lymph fluid in a Lymphedema patient with a compromised lymphatic system, becomes “trapped or ‘stuck’ without a drainage pathway.” Additionally, the “lymph nodes (which help fight infections) are compromised or missing in most patients with lymphedema.” Since lymph fluid is “a favorable environment for the growth of bacteria,” infections can often escalate rapidly and “can be severe by the time they are detected.”
Cellulitis is a bacterial skin infection, which can be quite serious, and even life-threatening. It is often associated with swelling, redness, and pain in the infected area with skin that feels hot and tender to touch. Left untreated, cellulitis can spread to other parts of an individual’s body, and it can enter the lymph nodes and bloodstream.
According to an article entitled Challenges of Cellulitis in a Lymphedematous Extremity: A Case Report, the stagnation of lymph in a Lymphedema patient “limits the clearance of bacteria.” Since Lymphedema patients are unable to properly combat bacterial infections, they “experience prolonged bouts of cellulitis with longer and more intense systemic inflammatory responses,” which “in turn, worsens swelling and adds further damage to their lymphatic system placing the patient in a vicious cycle.”
Pure terror is the only way to characterize the emotional response which occurs to a Lymphedema patient when they suspect they may have cellulitis. How long do I have before it progresses? Can I wait and try oral antibiotics? Do I need intravenous antibiotics? Will the hospital believe me? Will the hospital staff even know what Lymphedema is? Will the hospital staff even understand the correlation between Lymphedema and cellulitis?
On Monday, I was fortunate enough to encounter several medical professionals who knew and understood the correlation between Lymphedema and cellulitis. From the moment I walked into triage, the staff validated my concerns and treated me with the utmost respect. Ultimately, we decided the best course of action was to keep me overnight with intravenous antibiotics. Before I was discharged, I was able to have three rounds of antibiotics administered. Upon discharge, I was given a prescription for oral antibiotics, which I am still taking.
But, the question of the week: Did I really need to go to the Emergency Room? I truly believe I did. After each round of intravenous antibiotics, my finger immediately became less red and less swollen. However, hours later, the redness, swelling, and heat would return with a vengeance. This cycle persisted for a couple of days, but slowly the antibiotics began to win.
For Lymphedema patients, cellulitis is frightening and unnerving. It can also be life-threatening.
As I am learning, it is not something to mess around with at all. If you suspect that you have an infection, it requires prompt medical attention before it worsens.
As there is a lack of awareness surrounding Lymphedema in the medical community, you may need to advocate for yourself. Do not be afraid to find your voice and use it. It just may save your life.
Connor, Matthew Pierce, and Richard Gamelli. “Challenges of Cellulitis in a Lymphedematous Extremity: A Case Report.” Cases Journal 2 (2009): 9377.PMC. Web. 30 Apr. 2017.