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

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5 Responses

  1. Anonymous says:

    It would be SO much easier if a Mocha Vodka Valium Latte would just fix it all! much love neighbor.

  2. Lindsay says:

    that sounds awful. i hope you’re able to find the right balance soon.

  3. Anonymous says:

    Keep at it Carrie!! It does take time to find the balance. 5% Albumin or Lactated Ringers might be an option too.
    Anna

  4. Rusty Hoe says:

    Ugh hon. I wish it was a better scenario for you. It is hard. I know when I was doing my weekly ones it helped but it was by no means the be all and end all of treatment options. I appreciate your candour and I’m sure others do to. Balancing the pros and cons can be so hard. I hope you can find the balance you need and sooner rather than later. *hugs*

  5. Carrie, It certainly is frustrating when our treatment options are less than satisfactory. Sometimes, it just comes down to the lesser of two evils. I know all about the downsides of dehydration as my Dystonia meds turn me into the Sahara Desert! Love your spirit through it all. -Pamela-

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