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“I remember you. You’re a hard stick.” That’s how I used to be known among the many nurses at our local hospital, not only because I was there so often dealing with my myasthenia gravis (MG), but because they would remember how difficult it was to get an IV in me.

I have always been a “hard stick.” Since I have a form of dysautonomia, my veins are too “stretchy.” It could take 6 or 7 tries of being poked over and over to be able to get an IV in one of my veins. But when you get home infusions, the nurses are only allowed to make 3 IV attempts. In a previous article, I discussed my intense infusion schedule and that infusions are a common treatment for MG patients.

I get infusion treatment every week at home. For years, I would have to go through the challenge of getting an IV in my arm every few days and the stress of wondering if we were going to be able to find a vein that would work. Having to go through this stressful experience constantly was overwhelming and painful. My arms and hands were often covered in bruises for years, which made me self-conscious.

Read about therapies for MG

All of the IV failures created scar tissue so my veins were even less cooperative, and infusion medications can be irritating to veins. Even if my nurse could get an IV in my arm, it would only last a day or so, and then we’d have to find a new vein.

There were times the infusion nurse had to leave, and I could not get my infusion because we couldn’t get an IV to work. It was becoming a crisis, and I knew getting a port was my only solution. I talked to my MG specialists and my primary doctor about the process and whether this was the right choice. They agreed that it could be beneficial for my treatment.

Port surgery is a common procedure for cancer patients, but it seems less so for rare diseases. I had some trouble finding information about getting a port for treatment related to my specific disease. I have friends with MG on social media who have ports, so they were my main source of information.

In August 2020, I had elective surgery to place a port in the right side of my chest. The idea of having surgery to place a device under my skin that I could see and feel was a little daunting, especially during the pandemic. But I knew it would be life-changing. Knowing I wouldn’t have to go through the stress and pain of trying to get an IV placed every few days far outweighed my fear about the surgery. It did not take as long as I expected for it to heal, and the port was ready to use not long after surgery.

It has been life-changing. Getting my port accessed and being able to start my infusion right away is simpler and significantly less stressful. My port stays accessed through all the days of my infusion. It’s important to know that a port still requires specialized care and has a risk of infection.

I always think it’s important that patients are engaged participants in their care, and since having a port comes with more risk because it is connected to the heart it’s essential to know how to avoid infection. Because my port is accessed so often, it can be sore regularly so I’ve had to get new clothes that make accessing it easy. It’s a learning process, but it is a normal part of my life now.

It’s been nearly 2 years of having my port, and it’s difficult to remember what life used to be like before I had it. Now I hope to be known as an easygoing patient instead of the patient with uncooperative veins.