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Thread: Tune up

  1. #1

    Tune up

    Hi guys. Well after having pft drops since December and finishing a two month round of bactruim, my son is going in on Monday to start IV antibiotics. He has a port and the plan is for him to stay inpatient for 2 days to be sure he's not having any side effects and go home and continue them for 2 weeks. After 2 weeks repeat the pft and if his FEV1 is up to the number they want he's done. If they aren't, then they will continue them until they are.
    I do all of his g tube stuff, but until now have never had to mess with the port, thank God. I know they will teach me everything, but just wondering how big of a deal it is for me to continue his care. I have never flushed his port, much less run antibiotics. It's either done at the hospital or a home nurse has done it. I'm sure I'm just getting nervous for nothing, but I'm stressed a little, lol.
    I know there are lots of pros on here with ports who may be able to share their experience. Thank you so much. Jshet

  2. #2
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    My knowledge of ports isn't first hand, rather the ward nurse at the infusion center I use. In Christy's opinion, she believes that the port has many advantages over IV or a PICC line or IV. She's been doing this for some 20 odd years and she was of the opinion that doctors don't often consider the damage done by exhausting IV use and use of a PICC line in cases where the evidence points at an inevitable installation of a port line.

    I haven't had the amount of infusion many CFers go through but I have had enough IV infusion to have some seriously annoying peripheral neuropathy in my arms. I'm probably not going to need a port in my lifetime, hopefully, but if it is obvious that it's going to be a necessity the patient or parents should advocate for a port before the veins and nerves that inevitably run in close proximity to the veins are permanently damaged. I am paying a high price for this little factoid.

    That's the good news. Consider a port as if you were putting in an IV. Everything is sterile when you puncture into the port "button". This is a little more than a vein puncture but it's great advantage is also the reason for good maintenance. The port is grafted to a big vein going directly to the heart meaning that anything being instilled into the bloodstream is rapidly diluted, it's best feature. A port is exactly that, a direct opening to the blood stream in the form of a short length of artificial vein attached like spur line in a rail yard. A spur line is a dead end. In the rail yard it is often directed to a loading dock where freight is loaded before being sent into main tracks. The issue is the fact that blood isn't flowing through the portal and it therefore requires purging it after each time it's used. Nurses do the same thing with an IV, or buffalo cap. You have seen the basics of what you need to do. Sterile technique, swabbing the skin before and after inserts and as you said, they're going to be teaching you how to maintain the port. Respect for it is 99% of a no worries port. Following the protocol is simple. I'm sure some experienced port owners are going to be sharing.

    Good luck,

    LL
    66 yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism appears to be virulent.

  3. #3
    Thank you LL, I appreciate the info. I'm sure I'll learn everything i need to know. I know keeping things sterile is number one priority. I'm just nervous, lol. Thanks again.

  4. #4
    Super Moderator
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    Hey Mom: I'm assuming you've done PICC lines at home? We haven't done a PORT yet and I just did DS first PICC in April and I was a complete wreck that I'd screw it up especially with the sterility. DS started by saying what a horrible nurse I was but by the end I got an A-. Sooooo...while not the same, the emotion/worry probably is and you'll be a pro by the end too! Will say some prayers to get you through the first few days. Hugs & Prayers
    Love

  5. #5
    Thank you for the encouragement Aboveallislove. I appreciate it. I'm sure i'll get the hang of it. I'm just glad he only has to stay 48 hours. He gets stressed when out of his environment and schedule, but I have had time to prepare him. The port has been be of the best decisions we have made. He loves It and no longer needs to be held down to get an IV or blood work. Thanks again.

  6. #6
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    yes... if it weren't for getting out of the hospital early there'd be no way I'd be able to do it!! You'll do great!!

  7. #7
    You'll get the hang of it pretty quickly. Just make sure you follow sterile procedure. Ports are so much nicer to have at home than regular IV or PICCs. There are also some terrific Utube videos online that you can look at to refresh your memory and help learn the process. My port has been a godsend. So much less painful than other methods and a non-issue in-between IV runs.
    DDf508, 46 years old, 2 daughters (ages 16 and 12), PA, SA, Aspergillus, Achromabacter, GERD, CFRD, Asthma, Married 20+ years, FEV1 25% or lower, FVC 54%, living in Durham waiting to be listed at Duke.

  8. #8
    mom2two, thanks for the YouTube idea. We do have an amazing visiting nurse that I'm sure will be quite helpful

  9. #9
    Just wanted to add a quick update. After 4 days inpatient with no improvement on pft's , they let us come home to finish up his antibiotics. I feel completely comfortable giving his Meds and flushing his port now. They were planning on a bronch but after his pft's today, that is no longer an issue. His numbers are better then they have been in over a year and he still has 6 days left on his antibiotics. I could not be happier.

    So since he hasn't really grown much on his throat culture the last couple times, am I safe to assume that he in fact does/did have bacteria in his lungs thst wasn't showing because they can only ever get a throat culture on him? I mean he really wouldn't of had such a big jump in his pft's if the antibiotics weren't killing some type of bacteria right? Thanks so much

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