About Me

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I am a 53 year old wife and mother living in west central Illinois. I was diagnosed with CIDP in July 2021. This blog is my outlet for all the ups and downs and craziness that is associated with this disease. And to maybe teach people about a disease that is not well known. I plan to be frank and honest and also throw in humor, which, quite frankly, is needed to deal with CIDP and the crap that comes with it.

Sunday, February 5, 2023

WHY DID I WAIT SO LONG TO DO THIS???


 

WHY DID I WAIT SO LONG??

I think I mentioned before I am not such a good patient when it comes to starting an IV. I can’t watch for sure. If they have to poke more then twice or “dig around” to get flow, I tend to get lightheaded and have to lie down.  I was poked many, many, many, many, times when we went through fertility treatments to have our daughter. I learned these things about myself. So, sitting for hours with an IV in my arm was less than pleasant.

I learned through the FB group, that some members had opted to have ports installed. I was intrigued but a little leery. I have had things leave my body before, like my wisdom teeth and giving birth, but the idea of implanting something IN my body frankly freaked me out. I did go so far as to meet with a surgeon about what exactly it entailed. The length of the tubing was frightening. The surgeon was a bit of a comedian. In listing the possible complications, he told me nicking my lung was a small possibility, but he rarely had that personally happen and it was mostly skinny women who smoked. I was neither of those but I still was apprehensive. I decided to just put that on the back burner.

Until the infusion I went in for that took seven tries to get a good line. It was horrible. They had three different people come in to try. I was near tears. It started to really make sense why the pharmacy waits until an IV is good before they mix the meds. I was wondering if I was actually going to get my infusion that day. Getting a port started to sound like a really good idea.

So, I did. I have had it now for a year and I love it. The procedure was short and had no complications. I was sore there for a few days, and it was definitely strange to see this bump under my skin. I was scared to touch it. I was scared to bump it. The surgeon had to guesstimate where my bra strap would lay and he was close but not perfect. But it didn’t really matter. Nothing bothers it. Over time I feel it has got a little more prominent and you can see the three little bumps they triangulate between to find where to insert the needle. There has never been an issue getting blood return and be good to go.

I was lucky, there are horror stories about port issues. Infections are a big thing. Sometimes it works for awhile and then problems start. I still am glad I did it. It makes my infusions smoother and even shorter. The pharmacy is willing to start the mixing procedure when I arrive since accessing the port literally takes two minutes and is never an issue.

It is one of the best decisions I have ever made.

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