For many people living with Gaucher type 1 or type 3, enzyme replacement therapy (ERT) is the best treatment option. Getting an intravenous (IV) infusion for an hour or two, every other week can be essential for ongoing health and quality of life. It can even become routine.
But when treatment with IV therapy is lifelong, it’s vital to find the best infusion option for you, the disease, and your lifestyle. To learn more about how our community receives infusions, the National Gaucher Foundation (NGF) conducted a survey.
Out of 118 respondents currently receiving ERT infusions, about 47% receive treatment at an infusion center or a Gaucher disease treatment center. Approximately 43% prefer at-home infusion administered by a nurse. But Ben Berman—like 8% of the survey participants—administers his own ERT infusions. Self-infusion offers him the convenience and control he needs.
ERT has been part of Berman’s routine since he was three. Berman, now 35, is the fifth of six children—two of his siblings also live with a Gaucher disease diagnosis and two are carriers. Berman has received infusions in a clinic setting and at home (administered either by a nurse or his mother, who happens to be a doctor). As a young adult living away from home, Berman relied on many different people for infusions. He would travel back home sometimes. Other times, he relied on medically trained family and friends.
“It was inconvenient for me to have to always find someone to give me my infusions, and working around other people’s schedules was not ideal,” Berman says. “Eventually my brothers Brian and Joshua both said, ‘This is ridiculous. Just learn how to do it yourself.’”
It’s been 15 years, and Berman has never looked back.
Benefits of Self-Infusion if You Live With Gaucher disease
The thought of administering your own IV therapy may seem daunting—it was for Berman. But there are benefits to self-infusion, including:
- Convenience: Self-infusion allows you to receive your treatment in the comfort of your own home on your own schedule. “Convenience is the main reason I do this,” Berman says.
- Control of the infusion: Administering your own medication allows you to control the tempo of the infusion. “You can ask the nurse to adjust the infusion speed,” Berman says, “but with self-infusion, you have 100% control over how quick or slow you want the infusion.”
The cost of self-infusion may differ from the cost of receiving treatment at an infusion center or having a nurse come to your home. Reach out to your insurance provider to understand the expenses involved with each option. Learn more about financial support available for people living with Gaucher disease.
What You Need to Know About Administering Your Own IV Therapy
Your healthcare provider or infusion nurse is your best source of information about self-infusion. But from a patient perspective, Berman recommends some things to consider if you are thinking about self-infusion for ERT:
Self-infusion is not right for everyone
Not everyone is a good candidate for self-infusion, so it’s important to discuss the possibility with your physician or infusion nurse. They may or may not recommend self-infusion depending on your veins. They may also consider your comfort level with blood and medical procedures.
“I have pronounced veins on my arm and hands, so I feel very confident in my ability to find a vein,” Berman says. “But if you are a person who does not have such pronounced veins, I would imagine there might be some hesitation about self-infusion.”
Inserting the needle may be scary at first
The infusion part of self-infusion may not be the scary part if you’ve had IV infusions before. But inserting the needle into your own arm or hand may inspire fear. The first few times, you’ll want to do it under the guidance of a trained professional, but it comes down to you.
“The most difficult aspect of self-infusion is knowing you are in control of putting the needle in your arm,” Berman says. “No one can tell you what it feels like. I found that the only way to get over the fear is to try it and learn what it feels like.”
You’ll need training in how to administer an IV
Before you begin self-infusion, you’ll need to learn what to do before and after the infusion. An infusion nurse or healthcare provider can teach you vital steps, which may include:
- Sterilizing equipment, work area, and skin
- Reconstituting (mixing) the medication
- Filling the syringes and priming IV tubes (to remove all air bubbles)
- Preparing your arm or hand, finding a vein, and inserting the needle properly
- How to remove a needle and bandage the site
“At the beginning, it’s mostly about remembering the steps,” Berman says. “But once you’ve done it three, four, or five times, I can’t imagine anybody who would want to go to an IV center or medical practice instead of self-infusion.”
Remember, IV infusions are relatively safe when administered correctly. But they aren’t without risk. Your healthcare provider can teach you the signs of a problem. Side effects associated with IV medication include:
- Air embolism, a rare complication that occurs when air enters the bloodstream because of air bubbles in the syringe, tubing, or medication bag
- Infection, which can occur if infusion equipment is not sterile (germ free)
- Phlebitis, inflammation of the vein typically caused by irritation or vein damage (which can happen if you regularly insert needles into the same vein at the same spot)
- Superficial vein thrombosis (SVT), small blood clots that can form when the vein wall gets irritated
You’re responsible for everything that goes along with infusion therapy
When a nurse administers your infusion, they provide all the equipment they need. When you are responsible for your infusion, you need to coordinate with whoever provides your medication. You need to work with a home infusion therapy supplier or specialty pharmacy to ensure you have everything you need.
“Every couple of weeks, they’ll email you and ask what equipment you need. You need to know the number of syringes you have, how much saline solution you need, and if you’ve run out of alcohol wipes,” Berman says. “Ideally, you should keep all your meds and supplies in one area. That way you can easily track what you have in inventory and what you need to order each time.”
Confidence is key
The more times you administer IV therapy, the more confident you will be in the process and your skills. Berman’s confidence came from relying on his lifetime of infusion experience and the skills he learned by doing it himself.
“The idea of blowing a vein (when the needle ruptures the vein, causing it to leak blood) was scary for me. But the truth is, it happens all the time. I know from experience that eventually the vein heals and all the blood recesses to where it’s supposed to be,” Berman says. “Once I got over my initial fear and realized how much I already knew about infusion, I was able to do it confidently. I’ve been doing it now for 15 years.”
How the National Gaucher Foundation Can Help
If you or a loved one lives with Gaucher disease, the National Gaucher Foundation is here for your family. We offer resources to optimize your health with Gaucher disease and connect you with the support you need.
- Healthline – Intravenous Medication Administration: What to know—https://www.healthline.com/health/intravenous-medication-administration-what-to-know
- J Clin Med—Air Embolism: Practical Tips for Prevention and Treatment—https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5126790/
- Sage Journals—Catheter-related venous thrombosis—https://journals.sagepub.com/doi/full/10.1177/1358863X18779695