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.

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29 Responses

  1. Linda Wilson says:

    So proud of you for being proactive! Go Girl!

  2. I think it’s amazing that you have done this! I’m praying for great things to follow!

  3. Wow, I made it through that post and must give you credit for the procedure and all your challenges. I don’t know much about Dysautonomia but I’m here to learn! -Pamela-

  4. Anonymous says:

    let me know if you need help with the flush or access issues on inbetween days:) Glad to hear you were able to do dinner and pack lunches all at once…I was impressed as I was reading and glad you noticed it! You know which neighbor it is:P

  5. Lindsay says:

    okay, you are officially my new hero! sounds like a lot to go through – i hope having the port helps you feel better!

  6. Anonymous says:

    You are a brave young lady and this BETTER work out for you :)!! Keeping my fingers crossed :). Will you be keeping up with drinking lots of water? Will you still need to? I’m thinking…yes? How long do you think it’ll be until you’ll be able to notice if it helps? Were you given any indication of what to expect in that regard?
    Pam

    • Hi Pam,
      I am starting at about half of what my doc has said I can do and I feel tired at first but then I have done more in the evenings without as many breaks. I think one bag seems to last me about 18 hours. Then I start showing signs of dehydration again.
      I am drinking 64oz of water now instead of trying to hot 80 and no change in my meds.

    • Anonymous says:

      Sounds very hopeful :).

  7. Anonymous says:

    While I’m thinking of it, I was wondering if you had ever looked into this procedure?

    http://articles.courant.com/2013-05-27/features/hc-mommy-minute-20130527_1_summer-program-new-kid-miracle

    Pam

  8. First off, you look terrific in all the pictures. Second, I hope all goes fine for you.

  9. Thanks so very much for sharing. This was so informative and yet personal. So very easy to identify with. Hope this helps u!!

  10. CIndy says:

    Hi Carrie, I too has this dreadful Dysautonomia as well as AAG-Autonomic Autoimmune Ganglionaopathy. I go tomorrow to see if a can get home IV therapy. I am so tired of having to get my husband to get off work to come get me and take me to dr just to get fluids. I too am opting for the port. I loved reading your blog and so glad that I stubbled acrossed it on the web. I was dx with Neurocardiogenic Syncope a year ago tomorrow. Yeah, a birthday celebration. I think not, anyway. Wanted you to know that you help me make up my mind on the port. Would love to follow you and talk with you more. Good luck. And as they say, Don’t be doing any gravity challenges. Cindy

    • Hi Cindy! Glad to have you here.
      I am getting more familiar with the part and all the equipment, doing a big part on my own has made me feel in charge of things. I will say I am disappointed in how quickly the hydration seems to wear off.
      Are you going forward with the port? Keep me updated.

  11. Yes, embrace the spam… some is entertaining… this one was not though. Do better next time ;)

  12. Erin says:

    I love that you are at least trying different things….That’s a huge step and While I don’t deal with this specifically…HEart issues…but…still best of luck to you

  13. Jenni says:

    Congrats…I too have a port for my Hyperadrenergic Postural Orthostatic Tachycardia, MCAD, and Hypovolemia. It has saved my life.

  14. Jennifer Roberds says:

    So glad you shared thank you..I got my power port almost 2 years ago and at times it’s been my life saver

    • michelle says:

      i have been getting hydration therapy at home by home health agency nurses in south FL, most of the just dont want to put an iv in or can’t and they agency drops me. now this one nurse stuck me many many times i didn’t care i just wanted my 2 bags of salne. i think she really was just trying to get me to agree to this port. since i have moved here i have had some very bad medical care. i am afraid of another blunder. so far i have not responded to ant treatments for 5years i also have an auto immune and am afraid of infection. i have 0 life for the last 5 years. (i had a bad dr put in in a pacemaker that was un planned and not needed and proven it was unnecessary by another dr who wants it. i really need my fluids do i dare take another chance. thank you for your story. i am still not clear if you are really happy with it. i cant see me doing and taking care of this myself since my brain is dead and i get confused so easily. i am by my self and if i had a problem i would not know how to handle. i live in a state where were i am not from have been homebound for 5 years don’t have a good doc. could you please tell me what you really think and how the port affects your life. i am sick of going to the er for fluids and getting even more dizzy from laying on the gearny, i don’t know why but that dizzyness comes from my neck. if any of you have any thought or docs to recommend in my area please please let me know. i drink tons of smart water with ice constantly but i still burn up inside. thank you all so very much. God Bless

      • Michelle,

        If IV therapy works for you I strongly suggest you talk with your doctor about having a port placed. You would be able to have the IV therapy consistently without damage to your veins.

        For me my expectations were high, very high. I wanted to receive a bag of saline and then be “normal” for 24 hours afterward, and we know that is a bit unrealistic.

        I have had my port for almost 2 years now and receive 3 to 5 bags of saline every week without issue.

        I have a nurse come access it once a week and I am able to run the fluids myself at home. Once you do it a time or two its very easy. For some time I have the nurse come back out at the end of the week to take the needle from the port but I am now able to do that myself. A slight pull and its done.

        Disadvantage, you can’t get the port wet when you have the needle in. Showers are very difficult (too difficult for me) to take without getting it wet. I have found a routine that works for me of showering before getting accessed and then mid week washing my hair in the bathtub faucet, then when I take it out I can shower again.

        Hope you’re doing well today!

        Carrie

  15. Tanya Pankow says:

    Is this IV therapy something people have to do for the rest of their life? I’m assuming so, which I would do just to have a somewhat normal life.

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