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…
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.
So then I didn't like how
deep I was thinking so I opted to Google songs that I thought would make great
theme songs. (A conversation with Vicky over at The Pursuit of Normal)
In case you were wondering I didn't change my theme song choice,
mine is Truck Yeah by Tim McGraw. I did consider the part of Honky Tonk
Badonkadonk where Trace Atkins says “Left, Left, Left, Right, Left”. It would
be a good reminder of cadence to help me when walking. It is decided, I am totally
adding You Tube links for those who either have it in their head now or those
who have no idea about American country music and need to know these things.
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
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.
So proud of you for being proactive! Go Girl!
ReplyDeleteSo that means you'll help me flush and hook up over vacation ;) Just kidding, I got this... I think...
DeleteI think it's amazing that you have done this! I'm praying for great things to follow!
ReplyDeleteOh Leo, you are so sweet. I just want to rub your ears and snuggle with ya!
DeleteWow, 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-
ReplyDeleteThanks Pamela!
Deletelet 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
ReplyDeleteI have the flush down. My nurse cracks up because I looooove the saline in the flush! The pump itself, accessing, and deaccessing are still intimidating but its only day 2.
Deleteokay, you are officially my new hero! sounds like a lot to go through - i hope having the port helps you feel better!
ReplyDeletehero haha more like willing guinea pig
DeleteYou 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?
ReplyDeletePam
Hi Pam,
DeleteI 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.
Sounds very hopeful :).
DeleteWhile I'm thinking of it, I was wondering if you had ever looked into this procedure?
ReplyDeletehttp://articles.courant.com/2013-05-27/features/hc-mommy-minute-20130527_1_summer-program-new-kid-miracle
Pam
Awesome, that is the first I've seen of it. I am on the wait list to go to Mayo so maybe I will learn more!
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ReplyDeleteFirst off, you look terrific in all the pictures. Second, I hope all goes fine for you.
ReplyDeleteThanks Red! Trying to figure how much and how often. Work in progress ;)
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ReplyDeleteThanks so very much for sharing. This was so informative and yet personal. So very easy to identify with. Hope this helps u!!
ReplyDeleteThank you Heidi!
DeleteHi 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
ReplyDeleteHi Cindy! Glad to have you here.
DeleteI 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.
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ReplyDeleteJust had my Power Port surgery today. Lots of pain, more than I was expecting? Also the tube from the port up to my jugular sticks out. Will that go away? when does the pain subside? I'm having trouble getting out of bed :( any advice would be great.
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