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10 Tips for Organizing Feeding Tube Supplies At Home

by Mighty Well March 15, 2023March 17, 2023

Living at home with a feeding tube can be challenging, but with the right resources, information, and support, it is possible to maintain a good quality of life. One of the most challenging aspects is the myriad of feeding tube supplies required to administer it and live with a feeding tube at home. Organizing feeding tube supplies at home can make the tube-feeding process much smoother and more efficient. We’ll share some of the most essential feeding tube supplies and 10 tips our community members have shared with us about how to best organize them when at home.

What feeding tube supplies are needed when at home?

Tube feeding at home requires a number of vital supplies to ensure the process runs safely and without a hitch. Here are some feeding tube supplies that may be needed. Note that these vary depending on your tube and treatment plan:

1. Feeding pump: A device that delivers formula or food through the feeding tube. You may need an electronic feeding pump to facilitate an accurate feeding rate.

2. Feeding bags: Plastic bags that contain the formula or food and connect to the feeding pump.

3. Feeding tube: A long, flexible tube used to deliver the formula or food directly into the stomach or intestine. There are different types of feeding tubes available.

4. Extension sets: Small tubes that connect the feeding tube to the feeding bag or pump.

5. Syringes: Used to flush the feeding tube with water and/or to administer medications or additional water if needed.

6. Formula or food: Specialized liquid or powdered nutrition delivered through the feeding tube.

7. Water: Used to flush the feeding tube before and after feedings.

8. Gauze or bandages: Used to protect the skin around the feeding tube and absorb any leaks or spills.

9. Gloves: Worn during the feeding process to ensure cleanliness and hygiene.

10. Cleaning supplies: Soap, water, and alcohol wipes to clean the feeding pump, feeding bags, and the feeding tube site.

How do I organize all of these feeding tube supplies?

As you can see, there’s a lot to manage and store. Below are 10 tips for organizing your feeding tube supplies at home:

1. Designate a specific area: Designate a specific area in your home where you can store your feeding supplies. This can be a shelf, cabinet, or drawer, and it should be easily accessible.

2. Use containers and label them: Use plastic or fabric containers to keep your supplies organized (we prefer see-through plastic so you can quickly see available supplies). Label the containers to make it easy to find what you need.

3. Keep a stock of supplies: Make sure you have an adequate stock of supplies, so you don’t run out. This includes feeding bags, extension sets, syringes, and formula or food.

*Organizing feeding tube supplies in the Fluid Motion Backpack for on-the-go*

4. Mobile organization: If you have an electronic feeding pump and want to be mobile in your own house or need to go out for errands/social activities (we know you have a life outside of this), set up your feeding pump and set inside the Fluid Motion Backpack and you’ll be ready to roll.

5. Keep a schedule: Keep a schedule of your feedings, including when to replace your feeding bag and when to order more supplies. This can help you stay organized and prevent you from running out of supplies.

6. Store supplies properly: Follow the manufacturer’s instructions for storing your supplies. Some items may need to be refrigerated or kept in a dry place.

7. Free your floor space from the IV pole: The FreeArm holds gravity syringe feeds, pump feeds, and infusions at home and on-the-go. The FreeArm clamps easily to a crib, bed or table, freeing your floor space from that cumbersome IV pole. The FreeArm also clamps to rounded bars like on a wheelchair, stroller or rolling cart- organized with ALL of your feeding tube supplies!

*Pink FreeArm in use to hold syringe while connected*

8. Clean and sanitize: Clean and sanitize your feeding supplies regularly to prevent contamination. Use soap and water or alcohol wipes to clean your feeding pump, feeding bags, and the feeding tube site.

9. Create a checklist: We’re fans of checklists! Create a checklist of all the supplies you need and make sure you have everything before starting the feeding process.

10. Dispose of supplies properly: Dispose of used supplies properly to prevent contamination and infection. Follow your healthcare provider’s instructions for disposing of supplies.

By following these tips, you can keep your feeding tube supplies organized and ensure that you have peace of mind knowing where everything is. It’s important to keep all supplies clean and stored properly to reduce the risk of infection or feeding tube complications. Your healthcare provider can provide specific guidance on the types and amounts of supplies needed for your individual situation. If you have more questions, check out our Tube Feeding Resource Hub.

Living with illness and disability can be isolating. Thankfully, it doesn’t have to be. Sign up below to be in the know on our latest product and content releases, exclusive offers, and community events.

Multiple Sclerosis Uncategorized

Multiple Sclerosis Awareness Month: 5 Facts You Should Know

by Mighty Well March 9, 2023March 9, 2023

written by Mighty Well

March is Multiple Sclerosis Awareness Month – intending to raise awareness of this unpredictable and currently incurable central nervous system disease. To raise awareness, we’ve compiled five facts you should know about MS and how to bring awareness.

#1: Nearly 1 million Americans will be diagnosed with MS.

The National MS Society funded a prevalence study to understand the scope of people living with MS and to help get a better understanding of their needs.⁠ Once completed, the National MS Society realized the actual number of people diagnosed with MS was more than double the estimate – 913,925, to be exact. Read more about the study and the steps moving forward here.

#2: No two Multiple Sclerosis diagnoses are the same.

Since Multiple Sclerosis is a nervous system disease, nerves are affected by MS in various ways and show different symptoms in everyone.⁠ This is one of the reasons why MS is difficult to diagnose and treat.

#3: Three most common types of MS

According to yalemedicine.org, the three most common types of multiple sclerosis are:

Primary Progressive Multiple Sclerosis (PPMS): This type of MS accounts for the smallest number of cases; usually, a person is 40 or older when diagnosed. People diagnosed with Primary progressive MS usually do not have disease “attacks” but instead lose functionality gradually, becoming increasingly less able. Both men and women are equally likely to be diagnosed with this type of MS.
Relapse Remitting Multiple Sclerosis (RRMS): This is the most common type of MS, where people diagnosed may experience symptoms occasionally but then improve on their own or with some treatment. This type of MS is more common in women.
Secondary Progressive Multiple Sclerosis (SPMS): This is the most challenging type of MS for doctors to treat. It usually develops in a person previously diagnosed with Relapse Remitting MS after 10 to 20 years of having the disease. Symptoms of this type of MS will continue to worsen, and the person’s mobility will gradually diminish. ⁠

#4: Common symptoms of Multiple Sclerosis

Some of the more common symptoms of MS are:

numbness or tingling in the extremities
vision problems
Vertigo and/or dizziness
“MS hug”: a tightness or squeezing sensation around the torso
Fatigue
Difficulty walking
Loss in cognitive function (as Jenna Green puts it, “cog fog”)

While many of these symptoms can come up in many different chronic illnesses, it’s always essential to ask your doctor if you are experiencing any new signs.

#5: Uncommon symptoms of Multiple Sclerosis

Some of the more uncommon symptoms that come up with MS are:

Difficulties speaking
Difficulties swallowing
Seizures
Hearing loss
Loss of taste

For a more in-depth look at the symptoms of Multiple Sclerosis, check out the National MS Society. In honor of Multiple Sclerosis Awareness Month, we want to highlight Destiny’s story after being diagnosed with MS here.

Enteral feeding Infinity Pump in Mighty Well Backpack - Fluid Motion Backpack

Enteral Nutrition Medical Devices

A Helpful Guide to Enteral Feeding Pumps for Tube Feeding

by Mighty Well March 1, 2023March 3, 2023

written by Mighty Well

Enteral feeding is a method of delivering nutrients to the body through a feeding tube that is inserted into the stomach or small intestine. Enteral feeding pumps are devices used to deliver liquid nutrition through the feeding tube at a controlled rate. They are most often used for continuous feedings, overnight feedings, or on-the-go feedings to facilitate an accurate feeding rate. There are a few types of enteral feeding pumps available (but not many), each with its own features and benefits. In the past, we’ve looked at the different types of tubes available for enteral nutrition; in this blog, we will cover the options of enteral feeding pumps available in the United States:

A note from us: The pumps below are not arranged in any specific order. We added direct links to make finding relevant information easier, but Mighty Well doesn’t make a commission for any links added below.

Enteral feeding pump # 1: The Infinity Enteral Feeding Pump

The Moog Infinity is a small, lightweight pump that can run in any position. The latest version also has an “auto prime” feature, as shown in the video below. This is the most common feeding pump used by the Mighty Well community.

**The Infinity Enteral Feeding Pump** by Moog Medical

Key stats:

Manufacturer Name: Moog Medical
Link: https://www.moogmedical.com/enteral/infinity/
Weight: 14.4 oz (Less than a pound!)
Dimensions/size: Height: 4.05” | Width: 5.65” | Depth: 1.95”
Flow Rate Range: 0.1 – 600 mL/hr
Flow Rate Accuracy: ± 5%
Dose Range: 0.1 mL – 3000 mL, or infinite dose

More of a visual person? Check out this Infinity Pump features video. You can also see a quick video below of a Mighty Well customer setting up the Infinity Pump (Note that she’s using the former version: EnteraLite® Infinity) on the Fluid Motion Backpack:

@addeson.22 Sorry this video was so long 😂 but it takes me about 20 minutes to set up everything in the morning #ivfluids #feedingtube #gjtube #broviacline #formula ♬ original sound – Addeson

Enteral feeding pump # 2: Infinity Orange Small Volume Enteral Feeding Pump

The Infinity Orange Pump is the same size as the Infinity pump (shown above), but it is optimized for small-volume feedings, making it ideal for babies and young children. The Moog Infinity Orange pump can be used with bag sets that hold 100ml (about 3 ounces).

Key stats:

Manufacturer Name: Moog Medical
Link: https://www.moogmedical.com/enteral/orange/
Weight: 14.4 oz (Less than a pound!)
Dimensions/size: Height: 4.05” | Width: 5.65” | Depth: 1.95” (Same size as the Infinity Pump shown above)
Flow Rate Range: 0.1 – 300 mL/hr
Flow Rate Accuracy: ± 5%
Dose Range: 0.1 mL – 3000 mL

More of a visual person? Seattle Children’s Hospital created this video which walks you through step-by-step instructions on how to use the Infinity Orange Pump.

Enteral feeding pump # 3: The Kangaroo™ Joey

The Kangaroo™ Joey is larger and heavier than the ones shared above, but it also has more adaptable features. Kangaroo™ Joey bags come in 500ml (about 17 ounces) and 1000ml (about 34 ounces) sizes.

Key stats:

Manufacturer Name: Covidien
Distributed By: Cardinal Health
Feeding Formula Delivery Rate: 1-400 mL/hr (in 1 mL increments)
Tubing length: 9″ (From pump to feeding container)
Weight: 1.7 lbs. (2.3 lbs. with pole clamp)
Dimensions/size: Height: 4.1” | Width: 5.1” | Depth: 3.6”
Battery life: 18 hours

Want to see all the nitty gritty? See the manufacturer’s manual here.

More of a visual person? Cardinal Health has created several helpful videos which walk you through step-by-step instructions on how to use the Kangaroo™ Joey. You can also see a quick video below of a Mighty Well customer setting up the Kangaroo™ Joey on the Fluid Motion Back:

@septembersapphic Forgot I had this in the drafts. Feel free to ask me any questions 🙂 ft. @Mighty Well backpack! #feedingtubeawareness #chronicillness #tubielife #gtubelife ♬ Lo-fi hip hop – NAO-K

Enteral feeding pump name: Kangaroo™ ePump

The Kangaroo™ ePump is the biggest and heaviest feeding pump on this list. As its name suggests, this feeding pump features step-by-step prompts to guide programming and operation, and can deliver continuous feeding, bolus feeding, or automatic flushing/hydration.

Key stats:

Manufacturer Name: Covidien
Distributed By: Cardinal Health
Feeding Formula Delivery Rate: 1-400 mL/hr (1 mL increments)
Weight: 2.4 lbs (2.7 lbs. with pole clamp)
Dimensions/size: Height: 6.6” | Width: 6.4” | Depth: 4.6”
Battery life: 15 hours

More of a visual person? Cardinal Health has created several helpful videos which walk you through step-by-step instructions on how to use the Kangaroo™ ePump.

Want to see all the nitty gritty? See the manufacturer’s manual here.

Enteral feeding pump #5: Kangaroo™ Connect

The Kangaroo™ Connect is a quiet, compact, lightweight pump with continuous or intermittent feeding capabilities. It features a large, color LCD display with animated illustrations and wireless connectivity – it’s designed for use from the hospital to the home. The Kangaroo™ Connect pump can be used for both adult, and pediatric patients provided the patient can tolerate the flow rates and accuracy level of the pump.

Key stats:

Manufacturer Name: Covidien
Distributed By: Cardinal Health
Feeding Formula Delivery Rate: 1-600 mL/hr (in 1 mL increments)
Weight: 0.73 lbs (1.4 lbs. with pole clamp)
Dimensions/size: Height: 3.9” | Width: 6.1” | Depth: 1.6”
Battery life: hours

More of a visual person? Cardinal Health has created several helpful videos which walk you through step-by-step instructions on how to use the Kangaroo™ Connect.

Want to see all the nitty gritty? See the manufacturer’s manual here.

Which pump is right for you will depend on several factors, including your feeding requirements, nutritional needs, and ideal feeding cycles. Note that some suppliers also only carry one brand of pumps, and some insurers only cover one brand, which is important to consider since these pumps can be very expensive when paid out of pocket.

Whichever pump you end up using, having a good backpack to carry all of your feeding tube supplies is essential. Learn more about the Fluid Motion Backpack – the best tube feeding backpack specifically designed to give you mobility and freedom on the go.

Parenteral Nutrition Treatment and Care

TPN vs. PPN: What is the difference? Navigating Parenteral Nutrition

by Mighty Well February 23, 2023February 23, 2023

written by Mighty Well

Parenteral nutrition is a form of nutrition support that delivers nutrients directly into the bloodstream. This type of nutrition supports patients who cannot obtain adequate nutrition through the digestive tract. Parenteral nutrition can provide all of the nutrients a person needs or can be used to supplement the nutrients that a person can obtain from other sources, such as solid or blended food.

Two critical factors to consider about parenteral nutrition include understanding what nutrients it provides and how parenteral nutrition is delivered, which we will review below:

There are two main types of parenteral nutrition (PN):

total parenteral nutrition (TPN)
peripheral parenteral nutrition (PPN)

Both TPN and PPN provide vital nutrients, but there are some crucial differences between the two. In this blog post, we’ll explore the key differences between TPN vs. PPN so that you can make the best decision for your health.

1. Administration of TPN vs. PPN

The first difference between TPN vs. PPN is in how they are administered.

TPN is given through a central venous catheter (CVC), which is placed in a large vein near your heart. Common types of CVCs include Tunneled Central Venous Catheters, including Hickman™ , Broviac™, Leonard™ lines, and Peripherally Inserted Central Catheters (PICCs). You can learn more about CVCs here.
PPN is given through a peripheral venous catheter (PVC), which is placed in a smaller vein in your arm, either through a Peripheral Intravenous catheter (PIVC) or a Midline.

2. Nutrient solutions received on TPN vs. PPN

The second difference between these two types of parenteral nutrition is in the nutrient solutions that are used:

TPN solutions are typically more concentrated than PPN solutions, meaning that they can provide more calories and protein in a smaller volume. Additionally, because TPN solutions are more concentrated, they can irritate veins and cause inflammation. For these reasons, TPN solutions must be given through a CVC.
PPN solutions, on the other hand, are less concentrated and can be given through either a PVC or an infusion port. While PPN solutions may not provide as many calories and protein as TPN solutions, they are less likely to cause vein irritation or inflammation. Additionally, because PPN solutions can be given through a chest port, they may be a more convenient option for some patients.

Some of the candidates for TPN include the following:

Patients with paralyzed or nonfunctional GI tract or conditions that require bowel rest, such as small bowel obstruction, ulcerative colitis, or pancreatitis
Patients who have had nothing by mouth (NPO) for seven days or longer
Critically ill patients
Babies with an immature gastrointestinal system or congenital malformations
Patients with chronic or extreme malnutrition, or chronic diarrhea or vomiting with a need for surgery or chemotherapy
Patients in hyperbolic states, such as burns, sepsis, or trauma

Organizing TPN & PPN solutions and supplies

The TPN solution comes in a 2-3 liter bag, and most patients infuse one bag daily. The bag is often connected to an Electronic Infusion Device (EID) system, also known as an infusion pump, to “deliver the fluids at the correct rate and volume.” These infusion pumps also “include a variety of safety features including alerts for air and occlusions, a medication administration library, the ability to calculate infused volumes and back up battery power” (Anderson, Renée, et al. 2018).

The whole set fits nicely into the Fluid Motion Backpack, which can be worn by the patient or hung nearby throughout the infusion. This backpack can act as a replacement for an IV pole for increased convenience and ease of use for patients who are on an infusion schedule. The Fluid Motion Backpack is designed to help patients be as mobile as they would like to fit their lifestyle – while accommodating medical and personal essentials.

As covered, TPN and PPN are both types of parenteral nutrition that provide vital nutrients to patients. The main difference between these two types of parenteral nutrition is their administration and the nutrient solutions used. There is another type of alternative nutrition called “enteral nutrition.” You can check out this post to learn more about the difference between parenteral and enteral nutrition. As always, speak with your healthcare team to determine which type of parenteral nutrition is right for you.

Sources:

Anderson, Renée, et al. “8.6 Infusing IV Fluids by Gravity or an Electronic Infusion Device.” Clinical Procedures for Safer Patient Care, Thompson Rivers University, 31 Aug. 2018, https://pressbooks.bccampus.ca/clinicalproceduresforsaferpatientcaretrubscn/chapter/8-6-infusing-iv-fluids-by-gravity-or-an-electronic-infusion-device-pump/.

Doyle, Glynda Rees, and Jodie Anita McCutcheon. “8.8 Total Parenteral Nutrition (TPN).” Clinical Procedures for Safer Patient Care, BCcampus, 23 Nov. 2015, https://opentextbc.ca/clinicalskills/chapter/8-8/.

Adaptive Wear Chronic Illness General Wellness

The Ultimate Guide to FSA/HSA Spending Accounts

by Emily Levy December 12, 2022March 17, 2023

written by Emily Levy

At Mighty Well, our goal is to make our products accessible to our community. That is why we accept Flexible Spending Account (FSA) dollars to purchase Mighty Well products! For those who have FSA/HSA benefits, you use it just as you would a credit card at checkout. If you’d rather use your regular credit card, you can email us for an itemized receipt to file a claim. Check with your family’s primary insurance holder to see if you have this benefit.

It is important to note that your insurance plan/provider determines reimbursements. While most Mighty Well products are eligible, your insurance provider has the final say in whether or not you will be reimbursed. Mighty Well does not have control over what insurance providers deem as eligible for reimbursement.

Below is a simple-to-understand guide on how to use FSA/ HSA funds before the end of the year:

You can save a lot of money on healthcare by using FSAs and HSAs accounts. Many people often need help knowing when and how to use these accounts once they’ve set them up. The good news is they can be used for a variety of out-of-pocket healthcare costs, such as:

Over-the-counter (OTC) products like Mighty Well’s PICCPerfect^®, Self Care Case, Fluid Motion Backpack, and Masks
Medical testing
Copayments
Deductibles
Prescription drugs

Since it’s the end of the year, here’s a small reminder of what FSAs/HSAs are, who’s eligible, and how they help you save money.

HSA vs. FSA: What’s the difference?

HSA: Healthcare Savings Accounts

This is a tax-advantaged account to be used only for healthcare expenses
It can be rolled over in its entirety from year to year. Applicants must have a high-deductible health plan that covers at least $1,400 for individuals and $2,800 for families
Enrollment in an HSA is done via an employer or private insurance
You can contribute to a health savings account with pre-tax dollars, which reduces your taxable income

FSA: Flexible Spending Accounts

Similar to HSA, but less flexible
This is only offered as an employee benefit, and it doesn’t come with you when you change jobs
The IRS has set a $3,650 maximum contribution to an individual FSA and a $7,300 maximum contribution to a family HSA for 2022
This is the more common type of account
Younger, healthier people tend to be more conservative about their FSA allotment than people with chronic conditions that require ongoing treatment

Do I Lose my FSAs Dollars At the End of Each Year?

Unfortunately, Yes. Different from HSAs, unused balances in FSA accounts don’t usually roll over into the following year. You will forfeit any unused funds unless offered a grace period or your employer’s FSA plan explicitly allows a rollover. Just know the IRS limits this rollover to $570. For this reason, it is essential to consider how you contribute to an FSA based on your estimated medical expenses.

What does an FSA/HSA cover exactly?

There are subtle differences between individual plans for each FSA and HSA account. Frequent uses of the account are out-of-pocket medical, dental, and vision expenses, including deductibles, copays, and prescription medication. They also cover any number of OTC medicines, devices, and products, including several products from Mighty Well. Insurance premiums are not covered by FSA/HSA accounts.

Use your FSA or HSA card mightywell.com to take advantage of your benefits!

Living with illness and disability can be isolating. Thankfully, it doesn’t have to be. Sign up below to be in the know on our latest product and content releases, exclusive offers, and community events.

Chronic Illness

Gift Ideas For Chronic Illness Warriors & Friends in the Fight™

by Maria del Mar Gomez November 18, 2022February 2, 2023

written by Maria del Mar Gomez

From new PICC patients, chronic illness warriors on the go, and all the Friends in the Fight™ in between, we’ve got the perfect gifts for everyone this holiday season. Whether you are looking for a comforting present for a sick friend, someone who’s homebound, or a care package for a sick mom – pick one or more of our functional AND thoughtful gift ideas for chronic illness warriors.

For the new PICC patient:

Protection at its finest – gift everything they need to protect their PICC Line.

P.S.: PICCs can be hard to cover and protect, and they can not get wet! This pack will help with both and give your friend one less thing to worry about.

The PICCPerfect® PICC Line Cover protects and covers your PICC Line and brings dignity and comfort to your day! Perfect gift for new PICC Patient.

For the always on-the-go:

They don’t let anything stop them. Gift the tubie or chronic illness warrior in your life the gift of confidence, and ditch the IV pole.

Fluid Motion Backpack - Gift the tubie or chronic illness warrior in your life the gift of confidence, and ditch the IV pole.

For the organizational guru:

Color-coordinated medical supplies? Check. Give the gift of organization.

Peace of mind has never looked so chic. The Self Care Case is the perfect way to simplify your life and keep your wellness routine on track. It’s easy to customize, so you can add whatever essentials you need, and it’s compact enough to take with you wherever you go.

Self Care Case: Customizable Medical Organizer. Perfect Gift For Spoonies.

For the friends that still need space:

Still looking for protection from all kinds of viruses? No problem, we’ve got them (and you!) covered.

Stay safe this Holiday season with this stylish accessory. The Mighty Well Mask contours to your face for a perfect, comfortable fit, complete with an adjustable nose clip. Pick your favorite color today!

Mighty Well Mask by Mighty Well. Stay safe this Holiday season with this stylish accessory. The Mighty Well Mask contours to your face for a perfect, comfortable fit, complete with an adjustable nose clip.

Finally, something better than flowers or a fruit basket – these are gift ideas for chronic illness warriors – chosen by spoonies, for spoonies.

Mighty Well Ambassador Jordyn shows off her Fluid Motion Backpack

Chronic Illness Friends in the Fight The Undefeated

How I Pack My IV Infusion Backpack

by Jordyn C. November 11, 2022February 1, 2023

written by Jordyn C.

Hi! My name is Jordyn, and you may have seen me on Mighty Well’s social channels (here I am when I had a PICC Line.) I’m 21 and suffer from POTs, Ehlers-Danlos Syndrome, gastroparesis, hypoglycemia, and MCAS. I document my medical journey on Social Media Via TikTok, Instagram, and YouTube! Read on to learn more about using an IV infusion backpack.

Ditching the IV pole

I currently use Mighty Well’s Fluid Motion Backpack, which has given me so much freedom. I am usually hooked up for my IV infusion between 8 to 12 hours daily through my Hickman line. A Hickman line is a central line catheter similar to a PICC line but placed on your chest. Having to stay connected to an IV pole all day is exhausting. However, when I use this bag, I can go about my day normally.

Organized and accessible

The Fluid Motion Backpack has so much storage, so it’s very easy to keep everything clean and organized. I store many supplies and personal items in my bag, such as a medical folder for emergency information in case an accident arises, extra giving sets, dressings, blood pressure cuffs, and even my iPad! Being able to find something in a pinch is very helpful.

My favorite compartment

The larger back medical compartment is my personal favorite. I can have my infusion pump on one side nice and secure, thanks to the velcro flaps! On the other side, I have saline flushes and heparin. About a handful of these items will fit in the larger needle-safe pocket, which is awesome because sometimes, you’ll need extra supplies in a pinch!

In the two smaller mesh pockets at the top, I store emergency information cards (which I made on Canva, they are so cute!), an emergency glucose kit, extra alcohol swabs, disinfecting caps for the ends of my Hickman line, and Liquid IV! If you’ve been thinking about getting a Fluid Motion Backpack, I highly recommend it!

If you’d love to see more about how I use my IV infusion backpack and other days in the life of chronic illness, check out my YouTube channel. Additionally, If you’re interested in purchasing your own, you can use my code JORDYN10 at checkout for 10% off! My bag is customized by Rescuing Me Boutique.

Mighty Well co-founder Emily Levy shows off her deaccessed port catheter

Chronic Illness Medical Devices

15 Things to Consider When Living With a Port

by Emily Levy November 8, 2022January 31, 2023

written by Emily Levy

In the fourth installment of our port series, I’ll share my personal tips, essential considerations, and a few complications to watch out for when living with a port.

First: a few personal tips from me

After your port is placed, you will get a manufacturer’s information card. Keep this in a safe place! This card has information about your port, so make sure to keep it on you at all times. I would store mine in my Self Care Case or wallet.
There are many types of ports available. Know which kind you have. For example, I had a Medcomp Dignity port that was compatible with CT scans. I suggest asking for a port compatible with CT scans to reduce the potential of needle sticks.
It may be helpful to have a medical alert bracelet. This can help in case of an emergency.
The port can stay in your body as long as your caregiver believes it is necessary and no complications arise.
When it is time for the port to come out, an additional procedure will be done to remove it. This will be similar to how the port was put in.
The interventional radiologist who placed the port “owns” the device. If there are any complications, they are the first person that you should contact.

Second: port access is different depending on your location

In our previous blog, I broke down feeling empowered by knowing how to access and flush your port on your own, but things may be slightly different in a hospital, clinic, or if you have a home health nurse come to you.

In a hospital or a clinic, your port will be taken care of and flushed by a nurse.
If you are at home, a home health care or infusion nurse may give medicines and take care of the port. It may be possible for you to do this on your own if your nurse trains you and approves that you are able to take on this responsibility.
You or a family member can receive special training and directions for giving medications and taking care of your port at home.

In addition to receiving training from AVA-affiliated nurses, my home infusion nurse conducted two instructional sessions with my husband and me. She also empowered my husband to learn how to disconnect and remove my port after finishing my monthly IVIG treatment round. Most weeks, I would access my port on my own before my infusions.

Emily, with her emotional support dog, Olive, while receiving care while living with a port — Emily hanging out with Olive while receiving care for her port!

Finally: complications you SHOULD watch out for

It is vital to seek immediate care if you see the following:

Your port does not flush, or you are unable to get a blood return
New drainage or pus is coming from the incision
A foul smell is coming from the incision site
You develop swelling or increased redness at the incision site
You develop increasing pain at the port site, which was the reason my port was removed
You develop swelling or pain in the surrounding skin near the port (which also happened to me)

You may need to have your port removed if you develop a life-threatening fever that could be related to a central-line infection. Make sure to get help right away if you are not feeling well or getting worse.

What other topics do you want us to cover regarding ports? Leave a comment below or email us directly here.

Chronic Illness Medical Devices

How To Access Your Implanted Port

by Emily Levy November 1, 2022January 31, 2023

written by Emily Levy

In the third installment of our port series, I will break down the most crucial part of having a port: correctly flushing and accessing your implanted port by yourself.

I believe patients should be empowered to learn how to access their ports if they are in a mental and/or physical state to do so. Special steps must be taken to master this skill, but I promise that accessing your implanted port on your own will help you to feel more ownership over your care routine. Nurses trained me at the Association for Vascular Access (AVA) using a training dummy to teach and practice palpating and accessing IVADs (Implanted Vascular Access Devices).

What I learned about port access:

Before the port is accessed, a numbing cream can be placed on the skin. This helps to numb the skin over the port site. For best practices, put a transparent dressing over the numbing cream and let it sit for one hour before accessing. Some hospitals also have instant skin-numbing spray as an option.
A sterile technique is used to access the port to minimize the chances of infection.
The port is accessed with a specialized needle. My favorite port dressing change kit is the “Amanda Stabilizer” from BD. Only “non-coring” port needles should be used to access the port. Once it is accessed, a blood return should be checked. This is done by drawing back on the saline flush. This helps ensure the port is in the vein and the line is not clogged. You should be able to feel if the needle hits the port’s inner wall. Think of it as target practice!
If your caregiver believes your port should remain accessed, a clear transparent bandage will be placed over the needle site. The dressing and needle will need to be changed weekly or as directed by your caregiver. You can find all of my favorite IV supplies here.
If the port is left accessed, keep the bandage that covers the needle clean and dry. Please do not get wet, and follow the above instructions on how to shower when the port is accessed.
Always use a cap at the end of the line. My favorite options are Swab Caps and Curos Caps.

Mighty Well co-founder Emily Levy at the infusion clinic using her implanted port catheter for IV therapy — Emily, Mighty Well co-founder, receiving treatment through her port catheter!

Flushing your port:

To prevent your port from clogging, flushing is critical. Depending on your infusion type, a few factors determine how often the port is flushed:

If a constant infusion is running the port may not need to be flushed
If intermittent medicines are given, I would always flush between each medication using a method called S-A-S-H.
- S: Saline
- A: Antibiotic (of whatever your prescribed medication is)
- S: Saline
- H: Heparin (to lock the line and prevent clotting)
If the port is not being used, it is advised to flush it at least once per week

For Intermittent medicines, you will need to flush the port:

After each medication has been given
After blood has been drawn
As a part of routine maintenance

If you’ve been trained and instructed to flush your own port, follow your caregiver’s advice on how often, how much, and the type of flush to use. It is important to note that there are different units of heparin flushes. Additionally, tell your caregiver if you are allergic to heparin. You should mention if you are religiously opposed to heparin as it is derived from pork products.

What other topics do you want us to cover regarding ports? Leave a comment below or email us directly here.

Chronic Illness Medical Devices

What Happens After Port Surgery?

by Emily Levy October 26, 2022January 31, 2023

written by Emily Levy

Emily Levy shows her port catheter at the beach, after having several PICC Lines

In the second part of our port series, I am breaking down a little bit of what happens after port surgery.

A critical part of having a port is caring for the incision site after placement. My experience with getting a port implanted was far more painful than getting a PICC, primarily due to the larger incision and managing surgical glue and stitches. Additionally, an interventional radiologist (IR) doctor often does the surgery. In contrast, a PICC (or midline) can be placed at the bedside by a skilled clinician certified in PICC placement.

Incision Site Care:

Important things to know about caring for your incision site:

In most cases, the site is closed with absorbable stitches under the skin that do not need to be removed.
Small adhesive strips may be used to help keep the skin closed. Sometimes, no adhesive strips are used; instead, a special kind of surgical glue is used to keep the skin closed.
Make sure not to remove the adhesive strips used on the incision site. In most instances, they will fall off on their own.

My dressing was changed 24 hours after the procedure and then again a week later. Expect 7-10 days for the incision to heal. There will be a scar from the incision. I view my scar as a source of pride for my determination to improve my health.

Post-Surgery Care:

Emily Levy of Mighty Well post surgery with a port catheter — Emily immediately after port surgery!

The hospital may advise that the incision site may be sore for 1-2 days. However, I noticed that my incision site was sore for two weeks after port surgery. To help with the pain, talk to your doctor about taking over-the-counter acetaminophen and follow the directions on the bottle.

A Few Things to Make Life Easier:

I ensured I had easy on-and-off clothing options, like the Cocoon Cardigan. It was painful for me to put on clothing that went over my head during the healing process.
To shower, I recommend a handheld shower head or sponge bathing because it is critical that you do not get the site wet.
If your port is placed in your arm, I recommend our Waterproof Shower Protector with full hand coverage.
Other options include using a waterproof dressing on the incision site for at least a week.

It is essential to remember to never submerge the site under the water until the incision has fully healed. The transparent plastic waterproof dressing placed over the incision after the procedure should remain in place for seven days unless it becomes wet or dirty, in which case, it should be replaced as needed.

Have any other products that made your life a little easier with a port? Email us directly here!

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