When I went to visit Damon, the 9 year old boy who had an ostomy, in the hospital last Sunday, the issue of a picc line or central line came up. When I asked how he was sleeping the response from his moms was so incredibly familiar. They told me that every time the door opened, he felt an enormous amount of anxiety because he was so afraid that someone was going to need to take blood (again) or attempt to start an IV. This was a bit eerie because the first seven years or so of my illness, every time the door to my room made a sound I swear my heart rate was through the roof. It is amazing how something that seems so small like a door opening can have such an enormous impact on not just me, but so many other people while they are patients in a hospital.

I have extremely tiny veins that roll which is what I tell every single medical personnel I come across and their response to me is usually some type of chuckle followed by how amazing they are at taking blood or starting IVs. Then they take a look at my hands and arms, poke me a bit and just say “wow.” I wish I was kidding. After going through so much, one anesthesiologist had the sense to ask me if I wanted to have a central line put in before surgery. I had a number of picc lines which is basically a “long, slender flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access.” (WebMD) I had picc lines when I had blood transfusions, tpn, nine months of antibiotics at home, and just when it was clear I was going to be in the hospital for a while. I was even able to wear it while I was in school. Here is what a picc line looks like:

But a central line was foreign to me. When I heard the anesthesiologist ask me that question I perked up and asked him to explain to me what it was after my surgeon gave him the OK. He basically told me it was similar to a picc line only it would be in my neck. But other than that, he said, it was pretty much the same kind of thing. There were multiple lumens which meant that they could use one to take blood, one to give me medication and one would be left open for fluids or in case they needed an extra for some reason.

I had my first central line about five years ago (I think) and since that day, I demanded it every time I had surgery. I am not going to BS anyone… a central line isn’t comfortable. It is an IV in your neck. But honestly, not having to worry about constant blood draws or going through four IVs a day or needing to ask about the consistency of every single medication you are getting to make sure your tiny veins can handle it makes it all worth it. This is what it looks like:

When I think about all of the pain and mental anguish that could have been saved if someone early on had mentioned a central line after my surgeries, I just want to scream. I am not naive to the risks of having a central line or picc line. If you have good veins and can get through a hospitalization or surgery with just your regular average IV than that is way more preferable to having a tube inserted basically reaching the veins in your heart. But, the people who are generally in the hospital often are usually the ones who need to have blood drawn more frequently. They are usually the ones whose arms and hands have had to have way too many IVs in them. Those people tend to be the ones who need a picc line or central line the most.

After going through so much, I have become all about doing everything humanly possible to make myself as comfortable as I can be. I didn’t care that it wasn’t the “norm” to put a central line in. It was what I needed for my body if anyone was going to get any blood out of me or give me any medication or fluids. It was what I needed to have a chance in hell at not being petrified every time someone would walk into my hospital room.

When I had that picc or central line in, that was one less thing I had to worry about. Or rather, a few less things. I didn’t need to worry that the IVs wouldn’t last and I didn’t need to worry that I would have to undergo additional pain other than what I was already dealing with. I didn’t need to be concerned with who was going to attempt to stick me. It was one less thing I had to fight about. It just made things easier even though picc and central lines do come with risks, even though it is a procedure to get them put in, and even though central lines are not the most comfortable.

Anyone who is currently in the hospital, knows someone who is in the hospital or is a frequent hospital patient, please please think about this. I have spent almost 350 nights at Mt. Sinai Hospital and most of the hell I had to go through could not have been avoided but things like this COULD HAVE. I would hate for anyone to suffer needlessly like I did for so many years and visiting with Damon reminded me just how important it is to be knowledgable about this part of a hospitalization in particular.