• Not If, But When

    A repulsive, disbelieving gaze diverted to the lumens dangling from the upper portion of my arm. I never truly apprehended its meaning as the scratchy, repetitive noise of the portable IV pump resonated in my ears. It was a reminder that this was not supposed to happen. Central lines were for the patients who were really super sick, the ones who had exhausted all of their options. That could not be me, could it? But it was. I was airlifted via Angel Med Flight to a hospital out of state due to uncontrollable, severe reactions caused by God knows what. The first of my countless PICC lines were placed for TPN and high dose intravenous steroids. Oh, and Benadryl as needed. Eventually, we learned my reactions were a manifestation of Mast Cell Activation Syndrome. Total gut rest on TPN and IV medications lessened the severity and calmed the reactions down. I was later sent home to begin real life with a central line. Suddenly, the horror stories replayed in my mind—sepsis deaths, site infections, blood clots and DVTs. My doctor was less than comforting. He offered no consolations to ease my mind, only risks to stress the seriousness of the…

  • Tolerated Central Line Dressings & Antiseptics For The Allergic

    Itch. Scratch. Burn. Adjusting to life on IV therapy has its challenges. Between administering medications and learning proper line care, irritated and allergic skin should not have to be one of them. If you have a line, chances are you are aware that part of care entails changing the sterile dressing. On a weekly basis, the home health company delivers a shipment of supplies related to the weekly dressing changes required for a central line. They consist of antiseptics, dressing kits, a Stat-Lock kit, and other miscellaneous supplies. Sometimes, especially in the case of Mast Cell Diseases and related conditions, the supplies are not tolerated. It becomes an arduous process of trials to identify safe dressing supplies. Dressing Central lines are covered with sterile dressings to prevent infection. One to three times a week the old dressing is removed, the skin is cleaned, and a new dressing is applied in a sterile manner using the dressing kit provided by the home health care company. With adhesives continually in the same location, those with allergies and sensitives might suffer from skin irritation, itching, and breakdown. Thankfully, there are other options than the generic Tegaderm or transparent dressing in the kits. Tegaderm…

  • Types of Central Line Access

    You are inpatient at the hospital. The pump screams “occlusion” with the movement of your arm, which makes even browsing the web on your laptop a game of acrobatics. The intense treatment begins to burn your tiny veins. After the second IV in your mid-arm goes, the nurse plots the next spot of attack as her eyes scan your wrist. You await the reprieve of discharge, a relief. But then you learn that some patients do not have the opportunity to abandon all IV treatments at the hospital—you just never thought it would be you. Thankfully, enduring intravenous therapies at home do not entail dealing with finicky, painful, and unreliable IVs. There are numerous lines that are better suited. What line is best? Ports, PICC lines, Hickmans, Broviac—the terminology is initially overwhelming. With clarification, it will not be! PICC Line A PICC line is a small, IV catheter inserted into the middle upper arm and leads to the main artery (superior vena cava) in the heart. They are best used for short term, like when access is required less than a year. Pros Easier Insertion The procedure is done beside or in interventional radiology. General anesthesia is not required. Lidocaine…

  • 150,000+ Mg of Benadryl: Continuous Diphenhydramine Update

    Continuous IV Benadryl?! That thought is preposterous to most. It was to me too. However, for patients with severe Mast Cell Disease, like myself, it is a reality. While the basics of life on a continuous Benadryl pump remain the same, much has changed since I began the pump September of 2015. Over 150,000 mg of Benadryl has been continuously pumped into my veins over a year later. The continuous Benadryl pump vastly differs from regular intravenous bolus dosing of 25 to 50 mg every 4 to 6 hours. It is literally continuous! A pump administers medication up to 15 mg an hour, infusing little amounts at a time that eventually add up to the programmed hourly rate. Check out the post, Diphenhydra-what? The Continuous Benadryl Infusion, for an introduction of why continuous Diphenhydramine (Benadryl) is used as a Mast Cell Disease treatment, how the pump is started, what symptoms it initially helped with, and the beginning experience that molded my outlook 150,000 mg of Diphenhydramine (Benadryl) later! “What is your rate?” My rate of the pump has fluctuated depending on my med regimen. I began at 7 mg an hour, increasing half a milligram every few days until I reached a dose…

  • The Secret Weapon To No Heparin

    The title of this post might provoke a chuckle (or two), but when on the subject of central lines, Heparin is an inevitable topic.    Heparin is a blood thinner—”an anticoagulant that prevents the formation of blood clots.” [ x ]  It is used universally in patients with central lines to inhibit the catheter from clotting off from blood clots. As per line care directions, home infusions companies provide pre-filled syringes filled with Heparin. Patients are directed to flush with their central line after its use with saline prior to clamping the catheter. This is often termed as “Heparin locking” or a “Hep-lock.” The amount of Heparin the line is locked with is dependent on the length of time the central line is going unused. Following this protocol ensures the patient does not develop blood clots in the line or elsewhere in the body. However, there are unique circumstances that prevent Heparin use. Mine is one of them! As I am a moderator of the Facebook group, IV Therapies For Mast Cell Disease + Related Conditions, I get asked about my experience with Heparin quite frequently.   Heparin Toxicity During the admission I received my first PICC line, I was overdosed on Heparin…

  • Medication Madness: The Continuous Famotidine/Pepcid Infusion (CFI)

    Mast Cell Disease encompasses numerous conditions that impact the functioning and/or production of mast cells. To provide a brief synopsis, mast cells are a type of immune cell. They play a significant role in the defense against pathogens. [ x ] Mast cells release chemicals called mediators when triggered. The mediators cause a host of symptoms ranging from mild to life-threatening. Quite a few, but not all, are allergic in nature. Histamine (H1 + H2) blockers are a common treatment for Mast Cell Disease because histamine is one of the many chemical mediators released from mast cells. Diphenhydramine, the fancy term for Benadryl, is an H1 blocker. It comes in oral, intramuscular, and intravenous forms. In severe cases, the typical medication administration is ineffective. To reduce life-threatening symptoms, the severely afflicted patients sometimes resort to a continuous intravenous infusion of Diphenhydramine (Benadryl). Read Diphenhydra-What? Life On A Continuous Benadryl Pump to learn more about the Continuous Diphenhydramine Infusion (CDI). Similar to Diphenhydramine (Benadryl), Famotidine (Pepcid)n is also a histamine blocker. They just act on different receptors, making Famotidine (Pepcid) an H2 blocker. It is available in oral pill form or intravenous (IV). In February 2016, my doctors implemented the continuous infusion with Famotidine (Pepcid)…

  • Central Line Placement Without Sedation

    An additional medical ‘accessory,’ like a central line, is an intimidating thought. The processes involved prompt a plethora of questions. To avoid disease progression associated with anesthetics, my central lines are placed without drugs. Being fully conscious for my PICC and Hickman placements allow for much insight on the procedures. Hopefully documenting my experiences can clarify any unknowns that accompany line placement, post-surgery, and removal. The Procedure Over the years, quite a few central lines have been placed into my body. They have consisted of PICC lines and two separate Bard Power Hickman lines in my chest. PICC Lines PICCs lines are inserted into the patient’s arm. They are designed for short-term use. Every PICC I have had was done bedside without sedation and no lidocaine. There is the option for patients to accept twilight sedatives (i.e. versed, fentanyl) and numbing (i.e. lidocaine). First, the nurse lays a sterile drape on top of the body and arm once disinfected with alcohol. There is a clear window to view the spot on the arm where the line will be placed. Using ultrasound, the nurse locates the vein. If ultrasound is necessary again, sterile jelly and sterile plastic covering the ultrasound wand…

  • Home Intravenous FAQ

    A hospital in a home setting is definitely not an alluring arrangement. The idea is discomforting. However, in the case of disease severe progression, the intervals of time between intravenous treatments exceeds what is possible to manage through intermittent inpatient hospital admissions. They must be transferred to a home setting. I frequently receive questions related to my treatments. Specifically, the home infusions provided by a home health care company administered via long-term intravenous access. Throughout the years, my illness has required infusions as part of my daily care. Some were long-term, others indefinitely. Of course, infusion specifics are dependent on patient history, as well as the health condition being treated. Another patient’s needs could differ from mine, but this post serves as a Q&A based on my experience. “What type of home infusions do you have experience with?” In the realm of infusions, I have experience with doing the following at home: Saline & D5 Vitamins Electrolytes Total Parenteral Nutrition (TPN) – IV nutrition – My Experience on TPN With Mast Cell Disease  Medications in Bolus Administration: Steroids, Famotidine (Pepcid), Diphenhydramine (Benadryl) Continuous Diphenhydramine (Benadryl) Infusion – Diphenhydra-what? The Continuous Benadryl Infusion – 150,000+ mg of Benadryl: Continuous Diphenhydramine Infusion Update  Continuous Famotidine (Pepcid)…

  • Contaminates Begone: Thank You, B. Braun

    Skeptical medical professionals surround my flushed body in the treatment bay, their unbelieving glances induced by seemingly neurotic requests. This situation is a hallmark of Mast Cell Disease. “Please ensure the medication is preservative free.” “I can only tolerate this brand of that particular medication.” “That one must be diluted in 50 mL of saline, and pumped slowly over an hour.” “Administer fluids and medication slowly, or else I will react.” “Since the cells are already activated, I will likely react to that if given now.” “Is that saline bag latex, PVC, and DEHP free?” The above epitomizes the peculiarity of various Mast Cell Disease triggers. Although there are commonalities, triggers differ among patients and are mostly established on a trial-and-error basis. It causes Mast Cell Disease patients to appear, well, deranged. And at the least, slightly insane. After FINALLY recovering from a flare and moving from Florida to South Carolina, my body transformed into an 82 lb, swelled and hived, tachycardic, tremoring, blubbery mess. My mast cells continued to induce reactions in this manner for all of over 3 months! And administering medications intended to help only worsened a bad situation. “What changed?” Were the wise words from the…