The ins and outs of IV access for saline to treat dysautonomia

In my last piece, I discussed practical approaches for building a case for IV saline to treat orthostatic and exertion intolerance, two primary features of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID (especially those meeting the criteria for ME/CFS). IV saline helps treat various forms of dysautonomia, including postural orthostatic tachycardia syndrome, orthostatic hypotension, low blood volume, and exertion intolerance. Many with this suite of symptoms also experience chronic dehydration despite efforts to hydrate.

One of the biggest stumbling blocks for getting saline is that IV access carries risks many doctors are unwilling to take. While sepsis is a serious concern, there are many ways to provide IV access, some safer than others. It’s as if doctors look at the worst-case scenario to inform their decision, which is often a “no.”

IV saline requires more oversight than prescribing oral medications. For this reason, a busy autonomic specialist at a university hospital might not have the luxury of managing a hydration order. Still, they can help diagnose different forms of dysautonomia that might help justify IV saline. Similarly, a busy cardiologist in a high-volume practice likely cannot oversee a hydration order. A supportive general practice doctor (GP) or specialist treating ME/CFS and long COVID might be a better bet, assuming first-line approaches (e.g., pharmaceutical interventions, compression garments, and electrolytes) for treating dysautonomia are not cutting it.

Understanding the ins and outs of IV access might help you to build a better case for trying saline. IV access requires a lot of responsibility for the patient and caregivers. Showing your doctor that you understand the risks and how to mitigate them might help tip the scales in your favor when requesting an order for IV saline.

Disclaimer: I am not a nurse but I speak from nearly two decades of personal IV experience. I highly recommend spending time in an Ehlers-Danlos Sydrome-focused IV support group before pursuing long-term IV access if you have EDS. Also, much of my advice is geared toward IV saline; some people have additional needs for IV medications (e.g., 24/7 access for mast cell medications, TPN), which might involve different decisions than I have faced.

Different types of IV access carry different levels of risk

Many doctors express concern about central lines (e.g., ports, tunneled central lines) or peripherally inserted central catheters (PICC lines) – like the ones many cancer patients use to infuse chemotherapy. They sometimes fail to mention that there are temporary ways to provide IV access that carry less risk and allow patients to determine the benefits of regular saline infusions.

A simple way to determine if saline is helpful is to get an order from a doctor for an infusion clinic. This would allow the prescribing doctor and patient to explore this treatment in the safety of a medical facility with staff trained in infusion therapies. If saline proves helpful, longer-term solutions can be found, assuming your doctor is willing.

One visit to an infusion clinic might not be enough to assess the benefits of saline. Other considerations include how much and how frequently saline is needed to provide a benefit. Some people do well with 1 L every week or two, while others, like me, need many liters weekly.

While going to an infusion clinic is a great way to do a trial with IV saline, leaving the house several hours a week might be untenable for those who are more severely ill, especially if needing more than 1 L every week or traveling to a clinic is onerous. Home nursing is the best option in these cases.

Temporary access

Temporary IV access is one of the safest ways to infuse saline. This can be done in an infusion clinic or at home with a nurse.

Butterfly needles: Butterfly needles are placed in peripheral veins; the risk is no more significant than getting a blood draw. The needle is removed after the infusion, meaning there is no further risk of infection. One benefit of butterfly needles is that they come in different sizes, including small ones for those with “bad” veins. While this method carries a lower risk, an inflexible needle can damage a vein, making it challenging for patients to keep their arms still enough during infusion, especially during prolonged infusions.

Heplocks: Most IV clinics use heplock (short for heparin lock) catheters because they are more flexible than a butterfly needle, which allows patients to move their arms a bit more during the infusion. Nurses use a needle to insert a small, soft, and flexible tube called a cannula or catheter into a peripheral vein, such as in the hand or arm. After insertion, they secure the cannula in place and remove the needle. As with butterflies, cannulas can be removed at the end of the session, making the risk of infection minimal. If you’ve ever had surgery or imaging with contrast, you are familiar with heplocks.

Heplocks can also be left in for a few days if they are heparinized after an infusion, though some clinics may not allow this (heparin is a type of blood thinner that prevents clotting in the line). With a nurse’s training, a patient can safely use a heplock at home. There are many facets to adequate training, such as how to keep IV equipment sterile, flush and heparinize the line, and recognize infiltration of saline into tissues (e.g., when veins “blow”). Taking a heplock home requires a commitment to fastidiousness and attention to detail. One downside is that you cannot shower or swim while the line is in.

IV catheters come in different sizes.

One of the best things about heplocks is that they offer temporary access. This means you have a few days a week to freely use your arms and hands and take a shower. The flip side is that you may not have IV access when you need saline!

There are some downsides to frequent heplock use, especially if you have Ehlers-Danlos Syndrome. I destroyed the veins in my upper and lower arms and hands with heplocks. If you have EDS, keeping an eye on your vein health is essential. Some signs of trouble include difficulty placing an IV (requiring multiple “sticks”), rolling veins, and heplocks that infiltrate or blow easily. Low blood volume can also exacerbate this problem, making it harder to find accessible veins, requiring several attempts or “sticks.”

Longer-term access

Butterflies and heplocks are excellent ways of providing IV access during a trial period with saline, but they are not ideal over the long term due to the toll these approaches take on peripheral veins. Don’t be like me and wait until your veins are unusable and difficult to access, even for simple blood draws.

PICC lines: A PICC line, short for peripherally-inserted central catheter, is inserted in a peripheral vein, typically in the upper arm. A PICC line is placed in an outpatient surgical procedure. PICC lines require additional layers of caution to prevent infections and clotting; PICC lines must always have a dressing/bandage covering the insertion point of the line and be changed weekly using a sterile field.

PICC lines need to be flushed weekly and never can get wet, including in a shower, unless it is securely covered. No swimming is ever allowed while a PICC line is in.

One downside for many is that the dressing adhesives can cause skin reactions, such as rashes and blistering. This can become a significant problem for those with mast cell activation syndrome (MCAS), a common comorbidity in ME/CFS and long COVID. This can be a problem for some because the skin can only breathe for ~ 10 minutes during the weekly dressing change. Some bandages are less allergenic than others (everyone has their own preference). I have never had a PICC line, but I supported a friend who had one for over a year. I know of a few people who have had their PICC line for several years, but most doctors consider them as a temporary form of IV access, around six weeks to two months.

My interventional radiologist said that PICC lines carry a higher infection risk than ports (see below) because the line exits the skin – this means that there will always be some risk of infection, demanding impeccable care while the line is in.

In addition to the risk of infection, difficulty bathing, needing to be accessed 24/7, and skin reactions, it would be nearly impossible for someone to change their PICC line dressing due to placement on the upper arm (you need two hands to change a dressing).

Ports: A port is a small medical device surgically implanted under the skin. The port is connected to a vein, typically the subclavian. The port has a silicon membrane with a lumen through which a special 90-degree needle called a Huber needle is placed, and IV medications can be delivered.

There are a variety of ports, including single- and double-lumen ports. A power port allows for rapid infusions, such as for IV contrast. Power ports come in several sizes, a lesson I learned the hard way; my first port was far too large for my slender frame (see below).

As with a PICC line, when a port is “accessed, ” a sterile dressing (bandage) is placed over it. Similarly, you cannot shower, swim, or get the port wet when accessed. The beauty of a port is that you can easily “de-access” it and go about your business, including taking showers and swimming. When de-accessed, the port looks like a little lump under the skin and is entirely enclosed within the body.

My first port was too large and superficial for my petite frame and started to erode through my skin. This one was the final days before having it removed. The three palpitation points on the port were about to break through the skin. It took about three months to figure out what was happening. Port erosion is not uncommon in EDS, I learned after the fact. My new port is tiny (see pic to the left)!

Unlike a PICC line, it is easy for someone to change their port dressings or de-access with the appropriate training and strict adherence to sterile protocol. However, many doctors and infusion pharmacies do not allow this.

As with PICC lines (and heplocks), infection is a real risk. It is essential to have safety protocols around port care and to recognize early signs of infection, such as redness, swelling, and streaking on the skin.

My new power port is much smaller than the first one. This port was tucked in above the incision shown here about a month before I took this photo.

A note to people with EDS: due to faulty collagen, people with EDS can experience skin erosion over the port. This recently happened to me, and I had to have my port replaced. I had the wrong port from the start – it was too big for my thin frame and caused the skin to erode. My new one is much smaller. Before getting a port placed, discuss the best option for your body and needs with your doctor, preferably an interventional radiologist with a lot of experience.

I also learned ports are not designed for frequent and prolonged access (e.g., the amount of time Huber needle is in) – a hard lesson for me. However, there are tradeoffs with accessing frequency, increasing infection risk. Be sure to discuss your IV access needs before deciding on the best approach for you.

Tunneled central lines: This type of IV access is essentially like a PICC line but centrally accessed (e.g., on your chest vs. your arm). According to my interventional radiologist, this type of access allows for frequent and prolonged use but also carries a greater infection risk than a PICC line (which is more significant than with a port).

When my port failed, I figured I would need to have a tunneled central line. This was before I learned that ports come in many sizes. If my second port fails, I may need to consider this option, but I worry about the greater infection risk and inability to shower or swim.

Patient responsibility

I cannot underestimate the risk of infection and sepsis with any form of IV access.

Having a PICC line or port means being in a relationship with it. In this instance, you cannot expect doctors and nurses to carry all responsibility. The buck stops with you.

The best way to protect yourself is to learn how to access your line, even if you don’t do it. Write out all the steps of creating and maintaining a sterile field and ensure that your nurse strictly follows the protocol. Minimize the number of people who interact with your port. Don’t hesitate to speak up if you see something amiss.

“Trust no one” (until they earn my trust) is my motto regarding my port.

My beloved nurse taught me a few things to avoid: never let anyone blow on your port or wave their hand across your skin to speed up the drying of the antiseptic used during the dressing change. When sterilizing the skin, always start over the port and work out using a circular pattern radiating away from the port (vs. wiping back and forth across the port). NEVER let anyone but an RN touch your port.

Before getting IV access, it is essential to read up on sepsis and how to spot its signs early. Sepsis is like a wildfire in a tinder-dry grassland; it happens fast and can be devastating, including death. Warmth and redness, followed by streaking around the port or PICC line, are signs of getting straight to the emergency department for a blood culture and antibiotics. Ports and PICC lines can also have more localized infections, such as cellulitis. It is essential to catch both systemic and superficial infections immediately. It could be a matter of life or death.

I thought I was prepared for a port infection, but a recent run-in made me realize I had work to do. When my port started to fail, it presented like cellulitis – red, hot, angry-looking skin. I thought I had a port infection. Antibiotics, such as Keflex, improved the situation but never resolved it. I also found it surprisingly hard to find resources online – the pictures were mostly unhelpful. Even now, I don’t have a great resource to share – I found all my help in the patient community. Urgent care, my GP, my specialist, my vascular surgeon, and my nurse were stumped, making it my responsibility to figure out the problem. It did not help that I caught COVID on the day when my port turned angry. I was a hot mess (and still am!). When in doubt, see an interventional radiologist because they are the ones who see ports and PICC lines day in and day out.

The other thing I invested in was an Oura ring. I figured it would serve as an early detection system for sepsis as it measures the main signs: elevated heart rate, high (or low) temperature, and a rapid respiratory rate. When I got COVID, I realized I rarely mount a high temp, which might throw off busy ER staff. As with many here, I have a low body temp (~97). The only measure I will likely have to indicate sepsis is a jump in heart and respiratory rate. The combination of redness, swelling, radiating lines, and an elevated heart rate will indicate a trip to the emergency department.

When in doubt, SEEK HELP.

I did not wake up with an IV saline order and a port one day. It took me years to get to the place I am now. Once I had IV access, it opened up the door to try other IV therapies. I hope that some of my experience may help others have an easier and more structured path to trying IV saline than I had.

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