Chronic illness

Getting A Port: What I didn’t know

So I got the port and let it heal. I have just started IV treatments at home. And through out this whole process I have learned things that I didn’t know before. Things that I couldn’t easily find on the internet.

Like the fact that a doctor has to refer you to a surgeon before you do anything. I know that may sound obvious but the process of getting the referral was not so easy for me. I started by asking my neurologist what she thought of me getting IV treatment. She continued to tell me that I should be drinking the 2 liters of water everyday on my own. At the time, I was struggling with eating one meal a day. I was so nauseous and fatigued all the time that I couldn’t keep myself awake for more then 5 hours a day.

I was hoping that this last solution would actually help me, even in the slightest. My neurologist didn’t believe in IV treatment. She wanted me to do everything necessary for getting better on my own. But she was only looking at the POTS. She didn’t understand that I have 9 other things effecting my health as well. She agreed to let me try it. Then she saw it was helping so she agreed to me getting the port.

(I’ve had many problems with my neurologist. Not thinking it was important if I was tested for EDS because “you can’t do anything about it anyway.” Her thinking that my treatment I receive from her is making me better and healing me. Even though she’s only treating me for POTS and migraines. Also thinking I shouldn’t be put on disability because I’m too young and I’m “getting better.” She doesn’t want me to be on it forever and I don’t want to either. But I’m 20 not able to go to school or get any job. I need assistance and if I do get it, I hope that I can get to the point where disability is no longer needed. Right now it is very needed. I didn’t know that dealing with doctors would be so difficult.)

I also didn’t know that, once approved, the surgery would be scheduled so fast. I went from getting approval to going to surgery in the matter of a week or so.

I also didn’t know that I would be awake during the surgery.

After prepping the day before by not eating or taking my medication the day of, I got to the hospital. The nurse went over everything I needed to know or let him know. He told me how to take care of it and let me feel a tester so I would know how it would feel under my skin. He made everything very easy. Once the doctor came in to introduce himself, he let me know that they would be giving me something to make me a little loopy and that the site would be numbed. I went in with oxygen and a hair net. The exposed my top half, just until right under my breasts. So yes I was exposed for a short time. But they put blue sheets over me making a square around the place where the port was to be placed and the bottom of my neck. They covered me in blue disinfectant that took days to come off. The doctor gave me the shots to make it numb and told me to look in the opposite direction. I only felt the pressure from him pushing the port in and the pressure of him pushing the catheter into my artery. In less then an hour it was over and I was at home icing and popping Tylenol.

The healing process took longer due to my EDS but once it was over we had a nurse come. I didn’t know that when getting fluids through a port, I would have a needle in the port for the whole time. They put the needle in and it stays there for a week. They come back after a week and take out the needle and then replace it with another one.

So I will have a needle in me until I decide to stop getting fluids. I will also have the patch over it with the tube.

I also didn’t know that I would be setting up the equipment and giving myself fluids.

Yes this is me in my home getting fluids. I hooked myself up and everything. There is a service that gives you everything you need each week. A nurse comes in, inserts the needle and teaches you and who ever would be setting it up how to do everything. The nurse taught me, my mom and my caregiver. The nurse then comes back in a week to change out my needle.

If you have any questions feel free to comment or ask me through social media!

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