Alice C.
I lost my ability to sustain myself on my own in January 2018. This year has easily been one of the most challenging and discouraging periods of my life, yet through the most arduous moments, I have gained the ability to face adversity head on.
I had been in the hospital for two months and I returned home, stable and adapting to my new life. I had been given a feeding tube, which brought a sense of security in my life, as I no longer had to worry about malnourishment or dehydration. My doctors were optimistic, as my body could now be sustained as they continued to work to find a solution to my illness. This solution was quickly compromised after I was presented with a blood infection (sepsis) for the first time. From this point on, my body struggled to stabilize, leading to a larger battle.
From my first blood infection in June to now, I have been admitted into the hospital 5 times now, 4 times with sepsis, and 1 due to more severe septic shock. The cause of bacteria in my bloodstream is unknown, yet it is certain that it enters through my central lines. (Sepsis and Invasive Devices, Sepsis and Bacterial Infections) Due to the frequency of these infections, I have gone through 3 PICC Lines in my arm, and 3 ports in my chest. Without a central line, my body would remain a lot more stable, as I would not have the risk of bacteria entering my body through the line, but it is unfortunately necessary to hydrate me. Though I am able to absorb nutrition through my small intestine, my body continues to reject water from both my stomach and small intestine, therefore requiring the presence of a central line.
It is assumed that most patients with a central line, will at some point face infection, yet the frequency of mine is uncommon. Aside from bacteria entering my blood through the line, in the past 4 months, another issue has arisen. Due to the dysfunction of my autonomic nervous system, my body struggles to regulate most basic functions. One of the largest issues being the lack of connection made in between my nerves and my mast cells. Mast cells are a part of the immune system which are most frequently known for their prevalence in allergic reactions. When these cells do not work correctly, it results in random allergic reactions, typically occurring with the introduction to something regularly consumed or used. In my case, I have formed an allergy to the dressing that covers my central line, which is now a Hickman, which is similar to a PICC line, but coming out of my chest. (Sepsis and Impaired Immune Systems) This has proved problematic as with central lines, a dressing is required to avoid infection, yet in my case it increases my risk of infection. This reaction causes extreme irritation, which can lead to an infection on the skin around my Hickman, ultimately reaching the line itself, which progresses into the blood stream, resulting in sepsis.
The frequent risk of infection has taken away the sense of stability I originally had over my body. This issue in itself has been one of the most tiring aspects as there isn’t a simple solution, and I am in constant fear of being readmitted into the hospital for an infection.
I have now reached the one year mark of my illness and after going through a severe sepsis episode this January, I am now relying on almost daily visits to the doctors for IV fluids due to the major risk associated with a future infection and the damage sepsis has done to my body, I no longer have a line.
