A Tale of Horrible Veins

Since I was a child, I have struggled with notoriously awful veins. My parents told me that when the pediatrician needed to draw blood, two or three nurses would be required to hold me down. I knew they would never get it on the first stick, and I’d go on and on, screaming and crying and making a huge scene (sorry mom & dad, I’m sure this was really embarrassing). Afterwards, my parents would treat me to ice cream with the hope that this pattern would change.

Spoiler alert- It did change

It had to change, because I reached a point where I had no other choice than to rely on IV medications.

Within the first year of getting really sick, I had been hospitalized several times, and during each trip IV after IV would blow, leaving me bruised and very unhappy. The nurses on the floor would need to page the oncology nurses or the neonatology nurses in order to wriggle the smallest possible needle into my veins and hope like hell they didn’t roll or collapse.

I always feared the next stick

During the years, this experience became increasingly frustrating. Direct admits to the hospital could not occur after work hours because there would not be a specialist nurse able to get an IV line in. I began using every trick I’d ever heard - drinking water (when I could keep it down), squeezing a stress ball, using a hot pack over my veins prior to access attempts, asking the nurse to place the tourniquet over my shoulder instead of around my upper arm, and utilizing a ‘vein finder device’ when available. None of these things helped. It got to a point very quickly where I began to struggle with the trauma of knowing what was coming when I needed to get an IV. Living with a life-long chronic illness, I always feared the next stick.

While no longer a child, I did not require holding down, but I did require anxiety medication. This was never going to be a long term answer. During some longer hospitalizations, I had gone through a few different picc lines. Unfortunately for me, they were not a good solution for my regular life outside of the hospital.

There had to be a better solution

In the summer of 2016, I began using Entyvio to manage my Crohn’s disease. Although the infusion itself was fairly short, it could take up to two hours for someone at the hospital to get an IV in. My doctor and I knew that this couldn’t keep happening. Several months later when I required to switch biologics due to a co-morbid condition, I was also requiring IV fluids once or twice a week. During a particularly rough day, I was stuck 8 times before the nurse was able to get a pediatric IV needle into a functioning vein. What I didn’t know until then was that peds IV’s are only able to handle a certain run capacity. This meant it took almost three times as long to receive fluids than normal.

The port

This was when my doctor prescribed the placement of a surgical port - also referred to as a power port or a port-a-cath. I did as much research as I could, and going into the procedure, my only concern was that I would get a fickle port. My body had already been an endless source of frustration to me, I wasn’t convinced this was going to go any differently.

I have to admit, I’ve now had my port for about 18 months, and I am incredibly grateful for it every single day. Each time I receive treatment (be that regular or in emergency situations), I don’t have to be anxious about or frustrated with my own levels of dehydration and potentially unfamiliar nurses searching blindly for a vein. This has made me a) less likely to avoid the hospital, and b) a much less hyper patient.

There have been a few bumps along the way

Now, to be transparent, I have experienced a few bumps along the way with my port. About six weeks in, my port would not give blood back, meaning it wasn’t safe to use for infusion. I thought this might be the end of the world. Instead, I learned about fibrin sheaths and blood clots which can prevent proper functionality of the device, and the way that cathflo, an anticoagulant which breaks up these barriers, can usually solve the problem. I’m not going to lie this has happened a few more times over the months, but I have come to understand that this is sometimes just part of regular port care.

In my next post, I’ll talk more about That Port Life.

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