Antibiotics came onto the medical scene at nearly the same time as the diagnosis “cystic fibrosis,” appearing in the 1930s and spreading over the 1940s. Given the susceptibility of mucus-laden cystic fibrosis lungs to infection, and the frequency of subsequent bacterial colonization, this timing was fortuitous.
Antibiotics have been a mainstay of CF treatment throughout the decades. This simple statement, however, obscures their various manifestations in the lives of people with CF. The principles may have been similar in 1950 and 1990, but the experiences were vastly different. Material culture illuminates the changes that textual references can obscure, as exemplified here by the objects of intravenous (IV) antibiotic treatment for CF lung infections.
The first point—and one that especially surprised me, as a veteran of such treatment—is that this IV route (where liquid medication is injected or infused directly into a vein) was not in fact routinely used for the first twenty years of antibiotic treatment for CF. The usage of IV infusion itself dates to the 19th century, used mostly for the administration of fluids in cases of severe dehydration or hypovolemic shock.
However, penicillin, the first antibiotic of major significance to common CF pathogens, was initially administered in its higher doses via injection—intramuscular (IM) injection, specifically. As the name indicates, such injections are given via needle into the muscle, experienced most commonly today via flu shots and similar vaccines. As opposed to the occasional stab of the vaccine needle, however, IM antibiotic treatment for stubborn CF infections necessitated many, many injections. A course of penicillin treatment might entail a shot every 8 hours for 8-12 days. With the recurrence of infection, these courses could require repeating every couple months. For Jerry Lee Marshall, a 12 year-old with CF in 1952 Indiana, penicillin treatment had already entailed over 900 shots since his diagnosis four years earlier, stopped at that point due only to antibiotic resistance (already a known issue). [1]
Jerry’s experience reminds us of another factor in the IM route. When appearing on charity-themed game show Strike It Rich in 1952, the host asked where the boy got all those shots. “Where do you think?” said Jerry. [2] Doug Lab, writing of his own experience as a young man with CF in the early 1960s, describes the experience of a course of IM injections more directly: “my rear end was so bruised I could hardly sit.” [3] Given the requirement of muscle mass for an injection site, which was often very limited in the sickness-weakened, often undernourished and underdeveloped CF patients needing the treatments, options were limited, and painful.
Colistin, an antibiotic developed in the 1950s, though especially effective against the common CF pathogen Pseudomonas aeruginosa, was regarded as especially bad. IM colistin hurt “like the very devil himself,” according to period CF specialist Dr. David Stern. [4] Patients would put off treatment at the thought of the shots. Children in particular punctuated the hospital halls with their screams on the prescribed 8-hour schedule. It was Dr. Stern in 1963, observing an agonized seven-year-old getting antibiotic injections while fluids for dehydration were being infused into her veins, who realized the two might be mercifully combined. [5] As ever more intensive and higher-volume antibiotics were introduced, ranging from difficult to impossible to tolerate and administer in IM form, the concept of antibiotic infusion took over. IM antibiotic injections were mostly gone by the 1970s, not only for people with CF but across the board.
Infusion of IV antibiotics, however, comes with its own drawbacks. Veins must be kept open, ie., prevented from clotting around the inserted needle. Continuous infusion of saline ensures this, but patient freedom is limited when one must be hooked up to tubing and a pole at all times. In the case of CF, physical activity has always been regarded as especially important, with the most astute CF medical professionals also cognisant of the importance of maintaining social activity through frequent hospitalization. This tension prompted the development of the heparin lock, where a flush of a low dose of the blood-thinner, precluding clotting, allows for the “unhooking” of the patient from their tubing between doses, mobile as they please. Speaking very much from experience, this is a saving grace of IV treatment, making multi-week (or, sometimes, multi-month) treatment (somewhat) endurable.
The issue of IV access itself is also factor in patients’ freedom of mobility. Earlier IV insertion relied on stainless steel needles, shrinking to the less intrusive ‘butterfly’ type by the late 1970s. These had to be kept mostly straight, sometimes with the use of boards strapped to the arm or hand.
Sites may or may not be chosen well; elbow veins, for instance, are terrible restrictors of both movement and blood draw access. Frequent IVs and general poor bodily health also result in increasingly difficult venous access, painful and frustrating for patients and staff. Here, the development of longer-term central access devices made a world of difference. Both PICC lines and port-a-caths were developed for multiple uses, especially the administration of chemotherapy to cancer patients, but were quickly embraced by the CF community as a way of reducing the restrictions and pain of innumerable IV needles and catheters.
These devices also helped fuel the increasing adoption of home administered IVs among people with CF. With the heparin lock allowing for greater mobility, the boundary between life outside and inside the hospital thinned. Teens and young adults with CF were quick to seize the opportunity to limit the disruption of infection on their lives. As early as the 1970s, a patient like 15-year-old Patty Gelin might step out of the hospital for a few hours to work her regular waitress shift, heparin lock wrapped in an ace bandage. [6] By the 1980s, the usage of home IV treatment for otherwise stable people with CF was widespread. 22-year-old Glenn Smith recalled being on home IVs the day he graduated high school, around 1981. [7] Will Bernbaum didn’t miss a shift through self-administration of home IVs in 1987—in his job as a doctor of internal medicine! [8] The ease of home IV administration has only improved since, with innovations such as small portable pumps that can be held in a shoulder bag and the even more recent (and nifty) elastomeric spheres. While exacerbations of CF lung infection can still disrupt lives in many ways, the ability to stay out of the hospital, stay active, keep up activities, and/or limit the pain of needles represents changes in IV antibiotic treatment at least as significant as the more-talked about drug discoveries.
One final note. In my last post, I shared a photograph of myself at my MA graduation. I was, in fact, on home IVs at the time.
Special thanks to Ian M. Fraser and Janine M. Schweitzer for their generous support of the 2022 Margaret Angus Research Fellowship.
References
[1] The Mitchell Bureau, “Boy, 11, is Stricken with Same Disease Which Claimed Three Other Lives in Family,” The Times-Mail (Bedford, IN), December 22, 1952: 1.
[2] “Jerry Lee Marshall Wins Maximum on Strike it Rich,” The Times-Mail (Bedford, IN), October 15. 1953: 10.
[3] Douglas Lab, My Life in My Hands (Labpro: 1990): 49.
[4] Robert C. Stern, “Intravenous Treatment: Where We Are and How We Got There.” In Cystic Fibrosis in the Twentieth Century : People, Events, and Progress (Cleveland, Ohio: Am Publishing, Ltd., 2001): 98.
[5] Ibid, 99.
[6] Ibid, 106.
[7] Glenn Smith, “A Patient’s View of Cystic Fibrosis,” Journal of Adolescent Health Care 7, no. 2 (March 1, 1986): 135.
[8] Henry I. Bernbaum, and Madeline C. Bernbaum, “An Impossible Dream.” In Cystic Fibrosis in the Twentieth Century : People, Events, and Progress, (Cleveland, Ohio: Am Publishing, Ltd., 2001): 189.
