Tuesday, October 25, 2016

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, the 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.

"At what point did you decide on IV therapy?" 

The first step of the home infusion process is the decision on whether or not IV treatments are a beneficial treatment. There is no "golden rule" to knowing it is time to begin IV therapy. Every patient has different circumstances. 

In the realm of infusions, I have experience with doing the following at home:  

Coming from a medical team "anti-line" because of their risks, IV therapy was very much contingent on life and death and was decided after the failure of other treatment options. There was no other recourse. 

The condition that IV therapies were started for was primarily for my Mast Cell Disease. Once triggered significantly enough, reactions began to rebound. Severe symptoms accompanied the reactions, but the aspect of them that becomes the most dangerous is the heart involvement with a resting pulse over 200+. The cardiac symptoms leave me prone to Kounis Syndrome, which is a heart attack resulting from an allergic reaction, and was evidenced from a monitor showing Myocardial Ischemia (partial blockage of artery) during a reaction. Other symptoms of my full blown reactions: swelling, flushing, tremors, seizure activity (tremors, flashing colored lights in vision), dystonia, low or high blood pressure, nausea, diarrhea, etc. They would progress out of control, to the point where reactions were induced over all food, water, J tube feedings, and oral/tube medications. Obviously, it is futile to subsist in this manner. 

To break the anaphylaxis cycles, my doctors would put me on gut rest, complete with TPN and IV medications. The IV medications, up until September 2015, were administered in a bolus - meaning large doses spread over the course of hours. For example, Benadryl was given 25 to 50 mg every 4 hours. While I already had a line in for the IV nutrition, I ran 1-2 L of saline every other day to improve Dysautonomia/POTS symptoms. The gut rest anywhere from 2 weeks to 3 months would give the mast cells in my GI tract time to stop being as easily triggered from ingesting food, water, feeds, and medications. 

The above protocol eventually did not break the severe reaction cycle. The bolus administration of medications did not work for me. They would lessen the reaction, but within an hour it would return. To maintain stability, the doctors began the continuous administration of the antihistamines, Benadryl and Pepcid. This saved my life by allowing me to run J tube feeds without anaphylaxis. 

See the list above for posts about these treatments. 

"What type of doctor writes the orders for home infusions? How often are they renewed?"  

Home infusion cannot transpire without orders. Ordinarily, the orders are prescribed by the primary physician overseeing the totality of a patient's care. The main doctor who treats the condition(s) that require home infusion treatments can handle the orders too, which shows that the type of doctor to prescribe the order(s) can vary. For example, my oncologist is the doctor who writes and refills the intravenous home health care prescriptions.

"Did you begin IV therapy at an infusion center?"

Most patients do begin IV therapy at an infusion center. Whichever treatments are needed are then trialled using a regular IV line in a controlled setting. An infusion center ensures that any concerns or unusual  responses can be addressed with a medical professional. If all goes well and the treatment is beneficial, the medical team can facilitate a permanent line placement and home care setup.

I did not begin IV therapy at an infusion center, but inpatient at the hospital instead. This was only because the first therapy I started was TPN, which takes a couple weeks of tweaking to avoid refeeding syndrome. The continuous medication infusions were also initially done in an inpatient setting because they are uncommon treatments with the potenital to cause atypical bodily responses. 

"What IV access(es) have you had? What do you have currently?" 

Line placement is the next logical step in the process. Home infusions cannot be done without long term access. Achieving intravenous access is possible through a central line. There are multiple types of central line options. See the post: Types of Central Line Access for a brief overview. The PDF, An Overview of Central Venous Access Devices, is available for download. 

A PICC line was initially inserted into my arm to begin the home infusion treatments. A noninvasive placement and removal makes PICC lines great to begin with, as they are less surgical commitment than the other lines. They are ideal for shorter spurts ( one year ≤    ) on home IV treatments. They can also serve as a trial run, so to speak, by giving an accurate depiction on how the body will respond to treatment prior to undergoing a surgical line placement.

Pictured above are (2) examples of past PICC lines. 

  • Traditional PICC (LEFT)

    On the left is an older version, accompanied by extensive bruising from Heparin toxicity acquired by an overdose at an out of state hospital.

    My stent with this line was brief. This PICC constantly clotted off from both blood and the lipids in TPN. Overall, it was poor quality.
  • Bard Power PICC (RIGHT)

    The remainder of my PICC lines were by Bard. In comparison to the "stone age" PICC line, these are excellent! No problems. 

After nearly 10 PICC placements, the doctors advised a more longer term option like a tunneled hickman. Read about the pros and cons of each type of line in Types of Central Line Access.

Pictured above are examples of both my past and current hickmans stitched in place and with and without a dressing.  

  • Bard Power Hickman

    There are a few reasons the Bard Power Hickman was chosen over other lines for my particular situation:

    Plastics are a common Mast Cell Disease trigger and central lines are composed of various plastics. The Bard Power Hickman, with the exception of the cuff, is composed of the same plastics as the PICC lines we already knew I tolerated. Choosing another line option made of different materials was not worth the risk of a potential reaction to a plastic my body had not previous been exposed to.

    Due to a past Heparin toxicity incident and reactions to Heparin, I am unable to heparin lock my line. With the Bard Power Hickman, no Heparin is required for line maintenance, providing the line is in use frequently.

    Read The Secret Weapon To No Heparin

    My line is constantly in use, whether for intermittent TPN or the CDI. My medical team did not feel it wise to opt for another line, like a port, for continuous use because the needle always in the same spot for access can lead to skin breakdown. In turn, that increases infection risk. TPN is also controversial in a port because the lipids tend to clog the reservoir, creating an ideal breeding ground for bacteria with the high dextrose content.

    Read My Experience On Total Parenteral Nutriton (TPN) With Mast Cell Disease

"What complications can occur? Infection risk?" 

Like with all treatments, there are associated dangers. Blood clots, thrombosis, embolisms are complications associated with central lines [ x ].

With any intravenous access there is the prospect for infection. Infections with central lines have the possibility of turning into sepsis. Visit sepsis.org to learn the signs and symptoms of a fatal blood infection.

Infection can develop in three ways:

  1. Site Infection

    The site of the central line can become infected externally. Redness, oozing, puss, and swelling are evidence of a site infection. Fever may or may not be present.

    Bacteria beginning as a site infection can spread to the blood and result in sepsis if not treated. The skin bacteria around the infected site has a path into the blood, as the central line is routed through a vein leading to the main artery in the heart.

  2. Blood Infection

    Outward signs of infection are NOT a requirement for an existing infection. More often than not, bacteria enters the bloodstream by contamination and is flushed into the blood when connecting to an infusion, flushing, etc.

  3. Translocation

    Other locations in the body contain bacteria that does occasionally spread to the line in immunocompromised patients. Gut translation is common. 
Line infections are serious. Proper line care is imperative to reducing infection risk. Even with impeccable line care, it can still happen. As my doctor used to say, "It is not if; it is when." So, it is up to the medical team and patient to determine if the benefits of a central line outweigh the risks.

"Once a doctor writes the prescriptions, who oversees the process from there? Is there a cost?"  

The orders from the prescribing doctor are sent to a home health company. Examples of home health care companies are Coram, Lincare, ThriveRx. Major hospitals usually have affiliated companies if the patient does not desire a large, nationwide company for their care. Cost is determined by insurance.

The home health company delivers the necessarily supplies to the patient's front door on a weekly basis. 

The norm is to have enough supplies delivered for a week. With my current company, the medications and saline come already spiked and in pre-dosed bags and syringes based on the doctor's prescription. This is sterilely done under the pharmacy hood by a pharmacist. It is the safer preparation method to reduce infection risk.

Unfortunately, depending on the home health company and medication regimen, this is not always able to be done. Certain medications are not safe prepared a week in advance under the pharmacy hood. It is not feasible for home health companies to deliver daily in these instances, so there are occasions where the patient has to spike and inject bags themselves in their home. While this is not as convenient, it does not necessarily leave you doomed for infection. 

"Did a home health care nurse teach you the basics? Is a nurse always required?" 

Of course, the home health care company does not expect a novice to automatically know how to maintain proper line care, check labs if needed, or prepare medications and fluids if not already done by a pharmacist. Home health care companies send a nurse to a patient's house to do that.

Directions for care were outlined by nurses and hospital staff. It was demonstrated to my family and I how to spike the bags for infusions, how to inject medications into dial-a-flow bags or home infusion balls, how to prep and inject vitamins into TPN or saline, how to draw up IV medications, and when to monitor vitals before, during, or after certain infusions.

Home health may be required for the unforeseeable future. In those cases, a nurse does not always need to be present to maintain line care and deliver treatments. If the patient is comfortable, the assigned nurse will watch the patient or their families complete the demonstrated tasks. When done correctly, the nurse will confirm that it is safe to manage home infusions without a professional.

While I am sure the majority of nurses affiliated with home health companies in other areas are fully competent, but in the state I previously lived in they were not. There were tasks that even my doctor advised not to have done from a home health care nurse, as they had to fire multiple nurses due to unsterile technique, improperly drawing labs, etc. This occurred with multiple patients. Because of the infamous home health nurses, I travelled to the PICC team at the hospital's outpatient clinic on a weekly basis for labs, a dressing change, and clave change.

"So, what does line care entail?"

Intravenous access demands upkeep. The home infusion company delivers supplies necessary for the line upkeep. 

Some of the tasks are daily, like connecting IV therapies to administer. This includes using an alcohol wipe for at least 30 seconds to kill bacteria before injecting medication into a bag or connecting an infusion to the line.  

Specific IV treatments are connected to pumps to infuse. The pumps are locked by the home health company by a code. They are locked in at the rate and dose prescribed by the doctor. This ensures that the patient cannot go against doctors orders. It also guarantees no accidental mistakes are made, like infusing a medication at a rate that could be fatal. There are different types of pumps. 

Electronic Pumps: 


    CADD pumps are a brand of electronic pumps that run off of batteries. They are my preference. They require a special tubing for the cassette that attaches to the pump, which the home health care company usually spikes in place prior to delivering the weekly shipment.

    The downfall of CADD pumps, especially the older version depicted below, is that they are incredibly noisy. They require a key to attach the infusion bag to the pump. 

  • Curlin (RIGHT)

    The Curlin is another brand of electronic pumps that run off of both batteries and a charging cord. The Curlin is not my pump of choice because it has an incessantly blinking light that I find annoying. The buttons on the pump are clearly labeled, making it easier to begin the infusion. There is not key to attach the bag to the pump like the CADD.

Non-Elecronic Pump Methods: 

Sometimes the home health care company cannot or will not provide an electronic pump to deliver the infusion, unless it is a therapy where a pump is 100% necessary (i.e. TPN, CDI, etc.). The cheaper option is to send other methods. 

  • Dial-a-Flow (RIGHT)

    Dial-a-Flow is a type of tubing that infuses by gravity. The bag must be hung to avoid getting air infused, rather than the treatment. These are often a less appealing option because it is so positional. They do not alarm if the tubing becomes kinked, which is problematic if it causes backup into the IV bag. 

  • Home Infusion Pump

    Home infusion pump is in the shape of a ball that infuses pump that recognizes when to start and stop infusions through means of a pressure system. The rate in which it infuses is dependent on the amount of fluid the pharmacist has in the pump with the medication dose.

    These are better than dial-a-flow tubings, but are strictly for medications. They hold 100 mL or less, which is not enough for saline infusions.

Flushing + Locking The Central Line:
A line has to be "locked" off when not in use. This can be done with saline, heparin, ethanol (to decrease infection risk), or even antibiotics. The frequency of "locking" the line is based on line type.

Other tasks for line care are done on a weekly basis.

Dressing Changes

To minimize bacteria exposure, central lines are covered with dressings (i.e. Tegaderm, IV 3000, Opsite, etc.).

The dressing is changed one time a week, unless there are extenuating circumstances. If the dressing is compromised, it may need to be changed before the one week time frame is up. Examples of the dressing being compromised are: water exposure, hole in dressing, not sticking well, etc.

Changing the dressing is a sterile procedure. A quick rundown of the process is explained by Bard Access Systems under the heading Site Care.

As part of the dressing change, products such as a Statlock are used to bring additional support to a tunneled line. The internal cuffs of the line naturally hold it in place, so a Statlock is not a requirement, aids in support too, but it does aid in support if the line were to get pulled on. 

Like mentioned earlier in the post, certain precautions can be taken to reduce infection risk. Placing a Biopatch, which is soaked in Chlorahexadine, near the line insertion site lessens the chance of bacteria entering into the blood stream, as well as preventing site infections.

Cap Changes

Terms for the caps at the end of the line are: claves, ultrasites, hubs...Regardless of what they are called, they are changed weekly. Claves are meant to reduce infection risk. Claves are also placed at the end of line extensions that do not come with fixed (attached) claves. 

The process of beginning home infusion is overwhelming. However, it does get easier over time, I promise! What seems foreign will eventually become habit. While having home infusion as a crucial part of treatment is definitely not desirable, it can be a blessing in disguise by reducing hospital admissions and improving quality of life for many patients.