Posts Tagged ‘Power Port’

Injectable Power Port to treat Dysautonomia; The First Month

July 9th, 2013 by Carrie, the Just Mildly Medicated gal

I was waiting to sort out how I felt before writing about the things that are currently happening. That was when I remembered the quote I love so much and decided I need my laptop to help me sort it all out.

“I write because I don’t know what I think
until I read what I say.”

Flannery O’Conner

My last post was about my first week with my power injectable port to start regular IV therapy as a preventative treatmentfor Dysautonomia, specifically the Orthostatic Hypotension aspect of it. I’ve had a few emotional swings about the port as well as the IV therapy itself and was hesitant to share my feelings because it may not be well received by many who believe it to be the coveted treatment option.

To go back to where I left off in the first week of IV therapy; the first dressing (massive sheet of tape that goes over your accessed port) bothered me so much that in the wee hours of a Sunday morning with absolutely no sleep I began to understand why wild animals gnawed at their own wounds in a grotesque fashion. I was one strip of sanity away from doing just that myself.

I called my home infusion company at 8 am that Sunday morning and begged them to get word to my nurse to please come help me before my sister in law who was visiting was going to have to check me into an institution. They sent someone right away and the nurse actually said I should have called hours ago when it was first making me insane. She was set to change the dressing but I wanted it out, the bandage and the needle. I needed sanity and didn’t think I could achieve it while accessed.

The next time I was accessed we tried a different dressing tape that was an improvement and then a third that hasn’t bothered me at all. YES!

Me while NOT in the throes of insanity with the second bandage type.

However going through 6 liters of saline a week I was still at best mildly dehydrated. I am still playing catch up and have yet to reach a point where I am ahead of the dehydration. I don’t yet feel like I have reached a point where I am truly using this as preventative. I have spoken to my doctor and we are adjusting how many liters a week I should do and if a few saline bags infused with vitamins might help me get ahead of this.

During the first month of IV therapy I have had the same number of episodes, some convulsions and others syncope or what I refer to as a pretty intense pre-syncope (a very hard time keeping conscious with slurred speech and very disoriented but remaining conscious) . I have been able to do more and I can sit up or stand for longer before feeling dizzy. By longer I would say that before I had five minutes or on a great day 15 minutes, now I have more like 15 to 25. However I am hooked up to an IV for six hours three days a week for those extra few minutes.

I will say though, I have done a lot more this month than I’d normally have done. My husband left town the day after my port placement and even with the help of family and friends it has been more taxing. I also went on vacation, my parents did the driving but I was in the car for a 10 hour trip and away from home. Not to mention the stress of learning everything to do the IV therapy at home but to do it at an unfamiliar place was different.

My current belief is that this is a lot of work for an extra few minutes before Dysautonomia grips my blood pressure and pulls it down. I am still  early on and trying to find the amount of saline that works for me as well as the speed at which it is best infused. As you can see my review is mixed at best. I hope to find the right balance for me soon.

infusion day

Injectable Power Port for IV therapy to treat Dysautonomia

June 5th, 2013 by Carrie, the Just Mildly Medicated gal

As much as I hate it when I read a blog post that starts with “So it’s been awhile…” or “Sorry I haven’t posted in a long time…” this is kind of that post.

I’ve been super busy. Okay not really, but I’d say super busy for someone who considers making lunch, checking the mail, and doing the dishes a pretty full day.

Okay kids gather round and I’ll tell you about the first week of having an Injectable Power Port for IV therapy to treat Dysautonomia…

Quick basics for those who are not familiar; a power injectable port is a small medical device that is just beneath the skin usually put in the upper chest, just below the collar bone, mine is on the right side and goes into my jugular vein. Medications can be given and blood can be drawn from the port. Ports are mostly identified with people receiving treatment in the medical area of oncology and hematology.

Dysautonomia patients can often opt for port usage for proactive treatment to combat frequent dehydration and elevate blood volume to hopefully avoid syncope (fainting) and the need for multiple IV treatments post syncope.

Okay, now back to me!

This is an image of the Smart Port power injectable port that is in me
I had no preference in the brand of port and left that to the
surgeon who performed the procedure

 

(BTW I am a total newbie at this so the terminology is new to me. This is my first few days with the port)

So it started with a call to my Dysautonomia Specialist. I had passed out again and had a hard time coming out of it. It was that syncope that wanted to take you over, you start to come to and sit up slowly and BAM your vision gets blurry and you go right back out. I had no issue getting the IV at the ER but in the past they have said no, or admitted me for observation instead of the IV my body was so thirsty for.

My specialist and I agreed it was time to be proactive with regular IV therapy but I wasn’t sure how I wanted to go about it. There are a few options.

  • You can just have a new IV done each time but my doc wanted the therapy three times a week so that was not a first choice
  • The PICC Line is the next option and has some huge pros. It isn’t a surgical procedure and they can be used for anywhere from 2 weeks to 2 months before needing to move location. The cons for the PICC Line were from people who have used them mentioning the inconvenience of having something sticking out from you at all times and you cannot get it wet (increased risk of infection) and the covering for it sometimes let water through.
  • The next option was a power injectable port. It is an out-patient procedure although sedated enough to take the edge off you don’t need to be put under and the port can last for many years. While accessed it does need to be covered but when not accessed the port is under the skin and though it can look like a small dome it is not as noticeable as having something like a PICC Line accessed all the time.

I went for the port which was what my specialist had wanted. Their office called it in and within 2 weeks I was scheduled for my port placement.

The procedure:

I was scared, like really scared. I am someone who would prefer to be knocked out for dental work let alone something being inserted in my neck/chest. When I got to the hospital they put me in my room and did some labs to make sure my clotting was up to par then I waited.

I passed the time reading Game of Thrones until my mind started to wander. Am I sick enough for this? Ugg I hate the train of thought when I admit I am too debilitated by my illness to do normal things, like shopping for clothes or make it from the car to the baseball fields where my sons play but I also know there are people much more debilitated than me. I battle for quality of life other people are battling for life.

Then they came in to wheel my bed off to the OR… ahhhh! I’ve changed my mind, forget it I am going home… Okay I was thinking it but I didn’t say it. They went over the procedure and we got started, well they got started, I just laid there.

If you are considering this procedure, as many Dysautonomia patients are, the worst part is the injection to numb you, it kind of feels like the dentist numbing you only maybe ten times as bad and in your neck (sorry being honest). All and all for a surgical procedure it was not bad. After 3 hours bed rest I was about to start the discharge process. Although I think when I watch movies where someone gets truth serum injected into their neck I might have some PSTD flash backs.

Me during the first 24 hours. A former plastic surgeon did my
port placement, I know you’re jealous ;)

I was so sore the next day I wanted to kick my doctor and every one of my spoonie peeps who said they loved having a port. By day 4 I wasn’t very sore at all, which was good because the nurse came to do my very first IV therapy. Now even with the port you have options as to what needle and how much nursing assistance you’d like and how much you feel you can do on your own.

This day 4 post-op before being accessed, the 22 gauge Huber,
and then accessed for the very first time
Me getting accessed and my first port lesson

 

I will have therapy M-W-F so I have opted to have a nurse come on Monday to access me (put the needle in and dangly IV connector and cover the area) and stay accessed until Friday. As of now the nurse will come on Friday to remove everything and I will be free of it until she (not being sexist, the company has 3 female nurses so it’s she) comes Monday to access it again. On the in-between days I do need to flush the port with saline and then heparin. I did the flush of the port with the nurse yesterday after my first IV therapy and today, my off day, by myself.

The big questions from fellow Dysautonomia peeps…
“OMGosh WILL YOU GET TO THE PART WHERE YOU TELL US IF IT WORKED???!!!”

I am only doing one bag Tuesday and Thursday of this week, my orders are up to 2 bags 3 times a week, so I am working up to finding my sweet spot right amount. I hoped to feel energetic after the bag was done. I didn’t. I was cold which led me to lay under a blanket on the couch which left me feeling tired. I also felt a bit fuzzy after standing up and moving to a better chair to unhook the IV and do the flushing. I will add that I didn’t sleep the night before.

A few hours later was dinner time. I made dinner, we ate, we (kiddos and I, hubby is out of town) cleared the table, and then I packed lunches for 2 of my 4 kiddos for summer session at school. Afterwards I sat down and realized I hadn’t taken a break leaning over the counter which I normally would have done.

However when I did orthostatic numbers that night I was just as all over the place as a regular good night with readings of my HR being 67 to 92 and BP from 139/80 to 119/75. Again, not “bad” number fluctuations in the world of Dysautonomia just that they are the same in fluctuation as I’d have a good evening before proactive IV therapy.

Next week I’ll do a bag and a half M-W-F and will hopefully have great things to report.

Want to know more about Dysautonomia click here

If you have comments or questions on anything I always read the comments posted. I will answer, even if its “I haven no idea” and reply so you can stop back to see the response or I think you can click something to see responses. I also love you more when you comment… it’s true.