posted
My mom has has a port for eight years now, her's
was put in because of complications with her
veins and the need for IV rheumatoid arthritis
medication. Not sure if it is the same but.
The number one thing to look out for is infection.
This happened to my mom once, she ran a fever,
the port site was sore to the touch and also
became increasingly red at site (nurse drew
circle and by the time reach hospital the redness
grew larger).
Hers does not remain "accessed" all the time but
gets flushed once a month and used for medicine
once every eight weeks. This is different than
daily access, I'm sure.
Posts: 105 | From Mass | Registered: Apr 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks guys!
bettyg, will check that out! Maybe I should keep a log of what has been going on...
Wait, it would be a horror story!LOL
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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bettyg
Unregistered
posted
roy,
you could start a caring bridge posts too; just food for thought if you've got a large family/friends who are constantly asking you about what is going on.
this way once you get it up, send them a GROUP notice that it's up and to check there vs. emailing you privately.
food for thought only roy and katie! xox
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Wow, great idea. I hate talking on the phone and it would save me many emails!
Thanks for the help bettyg!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Hi Kreynolds,
I don't get on Lymenet as much as I use to, but I'm here. I have a port and have been doing IV with it since Aug. 1 of last year.
I haven't had anything serious wrong with mine yet although they were concerned about an infection at one point.
The culture came back negative so they found that I was actually having trouble with the tegaderm.
So at this point, I have to keep changing the kinds of bandages on it since I must be developing allergies.
As far as what to look for....if it gets red or hot to the touch, they definitely the doctor will definitely want to know about it.
Hopefully you are having a nurse out to access it weekly so she will probably we watching it as well.
As far as the caring bridge site.... if you do decide to get one, do let us know what it is and we will come visit you.
I'm in touch with many lyme patients on Caring Bridge and it's a nice family for support and information.
I use mine to keep family and friends aware of my lyme journey (much like a blog) but have started using it also for awareness to those that still want to think that a tick bite is nothing to worry about.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Cathy,
Thanks for sharing your experiences!
I too have bad reactions to the adhesive on the tegaderm.
So far, I love it.... I don't feel like wires are hanging from my arms!
Yes I have a nurse come once a week to pull the needle out and access it.
Thanks again for your help and I will be looking into a caring bridge site!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Kreynolds,
Glad to hear the port is working out well for you. I never had a picc line first, so I don't have anything to compare it to, but I understand there are definite pro's to the port.
If you need any info on the CaringBridge site, feel free to drop me a line. It's actually pretty dummy proof if I can do it.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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bettyg
Unregistered
posted
roy,
glad cathy found your post and you 2 connected
i left you a message on your NEW CARING BRIDGE SITE!!
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks tdtid and bettyg,
Yes it will be a great site!
I hope my family that lives in (NYC) will see what I am REALLY going through.....
Also it will be nice to connect with others and share advice!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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