Skip to main content

The Freedom of my Port

At the end of August I had a Bard Power Port implanted in my chest. After 8 months of weekly schedule infusions and about a year of have almost weekly IVs scheduled or not my veins were becoming less and less usable. I was exhausted too. I was exhausted from my weekly trips to the infusion center, in addition to my normal medical appointments. I was exhausted from still crashing only a few days later from POTS. And I was exhausted from the ER trips that happened when I crashed particularly hard. My cardio did not want me to have a central line but when I came to my appointment mid-August the PA saw my arms that were so beaten up from the failed IV attempts and blown veins coupled with exhaustion from my most recent ER trip and a port was ordered.

The port surgery was at the Hospital of the University of Pennsylvania (HUP), since that is where my cardio is. Unlike CHOP they were not as familiar with POTS patients (ironic since that is where I am treated for POTS), so they did not give me nearly enough fluids but besides for that it wasn't a hard surgery. Someone had told me it took them 3 weeks to get back to normal activities which freaked me our since I had plan to go to classes 3 days later since I was having surgery the first Friday of the semester. I knew that I would probably be fine and the doctor placing the port said to me after reading through me medical record this was no big deal compared to a lot of things I had been through. And he was right, not only was I fine to go to classes but I even went to a staff event for my job a couple days later.
When your surgical glue matches your shirt you know your outfit is on fleek

The port has been amazing. I am now getting fluids 3x a week. Every Monday a nurse comes and access the port, then I run the fluids myself and on Fridays I take the needle out. I can also do extra infusions as needed, which has saved me quite a few ER trips. I even can do them on the go. I have done infusions while in class and took all my supplied on trips with me. I really feel like I have gained a lot of freedom and control of my life with my port.

Comments

Popular posts from this blog

Feeding Tube Awareness Week Day 1

Today is the beginning of feeding tube awareness week! A year ago if you had told me I would be feeding tube dependent in less than 6 months I would be feeding tube dependent I would say that's crazy. Anyways here I am and its not super scary like one might think.


Day 1: Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary.
I am tube fed because I have gastroparesis and dysautonomia.
Gastroparesis: Delayed stomach emptying, which means I can not tolerate normal amounts of food because it doesn't leave my stomach as fast as it should. The symptoms include feeling full, nausea, and vomiting (there are many others, these are just the ones I deal with the most). Gastroparesis is caused by nerves not firing and telling the stomach to empty. Due to gastroparesis I can only consume a few hundred calories a day so I receive most of them through my tube that goes into my small intestines instead…

The Swollen Wrist

This morning I woke up to a red painful swollen wrist. My right wrist was not happy or useable for the better part of the morning. Of course my mom wanted to make a rheumatologist appointment for this week but I really did not think it is worth it. Since I am now in the 2 week period before my hip surgery I can not take anything but Tylenol anyway (no voltaren or fancy cream), so there is not a whole lot that can be done. We finally settled on me going to my GP (for the 2nd time in one week as I had a pre-op appointment with him on Monday), and I took a picture so I can show my rheumy at my next appointment.

I managed to get an appointment at 11AM because my GP was in the office this Saturday. By the time of the appointment my wrist looked pretty normal, although I had the picture so he could see something was up. He had it x-rayed just to rule out any issues non rheumatology related, and as we both guessed the x-rays came out normal.

I was left with the advise to call me rheumy Monda…

Cellcept, Methotrexate, and Rituxan, Oh My!

So while it has only been 3 months since I last wrote instead of 6 months, a lot of things have happened with my health. After student teaching I refuse to be on prednisone for a little while. That didn't go so well and there was a month full of ulcers. I couldn't talk, I couldn't eat, I couldn't sleep much. I was not a happy or pleasant human being, which is all the things I hate about being on it. At this point they were running down my throat and I could not swallow. So after a month of this it was time for camp and that meant I needed to be able to talk without wanting to cry and I gave in to the steroids and have been on the highest daily dose yet ever since. Also Behcet's now seems to be the responsible disease for at least this mess.


Meanwhile my ability to swallow liquids has also struggled. Most of the time it was pretty solid but more times than I would like I cannot seem to get the coordination down and it seems to go down the wrong pipe and cause a lot …