Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I had my appointment with the hematologist today. The good news is that all my tests came back clear, nothing showed up as far as a clotting disorder. She is sending out for the records from Yale New Haven where I was told five or so years ago that I had some sort of clotting problem.
She is recommending a port for me. She said it is less likely to clot than a PICC. She is also recommending one mg of Coumadin a day just as a safety net, I don't even have to have my PT/INR checked or anything while on it. She said in reality, none of my tests indicate that I need to be on anticoagulation therapy, but since I did get the clot with the PICC, the one mg of Coumadin will be advisable.
So this is some real progress. Of course I'll be wanting to talk to all of you who have ports; but meanwhile I'm so happy to have some tests come out normal! I don't need to be followed by a hematologist, and I can move forward with getting a port set up! Woo hoo!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Good Tracy, glad things are progressing!
I will be interested to follow this thread too. I think there is something called a Hickman port that a lot of people seem to like.
I had a PICC in the past, and I wouldn't want one again. Having to be so careful with it, and always be so paranoid about infection was annoying.
I do know that my LLMD said to me that piccs and ports have come a long way, even seemingly since '03 when I had mine.
There is one where you can "de-access" it for a week or two, then you can do things like swim....is that the Hickman? (to anyone who knows)?
If so, that sounds great to me! Posts: 4590 | From Midwest | Registered: Jun 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
WEll, it looks like they can all be "de-accessed", I just want to know if I can do it just for a day? it seems it just involves having to do a needle stick into your skin to "reaccess" it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
Unregistered
posted
cathy, tdtid, has one and has posted her ENTIRE story on caringbridge site ... tells the good and bad things as they currently happen.
read her journal from beginning up to now ***********************************************
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tracy,
Wishing you luck with getting your port. I have had mine since July.
Yes, it can be de-accessed at which time you are free to take showers, swim, whatever. It will depend on the schedule the LLMD has your meds scheduled.
For awhile, I was on a 4 days on and 3 off so would have the three days of breather. At this time, due to the meds I'm taking, it is accessed 7 days a week since I'm doing two or three IV's a day, depending on which day it is.
As far as the needle, you will probably have to have a visiting nurse do it for you since you have to make sure it hits the port. In my case, the doctor wants blood work weekly, so that is done at the time the port is accessed.
Good luck to you and keep us posted on how it goes.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
That's wonderful news Tracy! Here's some reading material for you:
Anesthesia: -conscious sedation was used -additional anesthesia may be required in people who take narcotic pain relievers and are opioid resistant/opioid tolerant. This may cause additional nausea and vomiting during recovery, and made recovery longer than anticipated
First Access: -the port may be accessed by the surgeon while you're in the hospital and the first dose of antibiotics may be infused in the hospital, especially if you're discharged later than anticipated. By the time we were discharged, the LLMD's office had closed and it was a Friday night just before a holiday.
-the needle IS in the package with the port--Make sure no one throws the needle away; they usually toss the little packet containing the needle. Remind everyone you talk to to save the Huber needle...nurses, the anesthesiologist, and the surgeon.
-ask your LLMD if the surgeon should access the port in the hospital while it's numb. Some Lyme patients go straight from recovery to the LLMD's office for their first IV dose of antibiotic using the port
-you may have a lot of dried blood on your neck and in your hair after surgery
-you may experience nausea and vomiting after surgery
-the needle is usually replaced once a week when treating You can shower, bathe, or swim only when the needle is out (deaccessed). You MUST flush the port monthly when not in use.
-although a power port is made to withdraw blood, many feel strongly that doing so has caused their port to be ruined
-it took about 4 weeks to recover from the surgery; it was still tender then, especially when it had to be accessed, but bearable. Your doctor can prescribe numbing cream for application before accessing.
Hint: DO NOT get your port placed on a Friday afternoon or the day before a holiday. If you have problems, you may have a difficult time finding someone knowledgeable to help you.
The Huber needle is L-shaped with a slight bend in the short leg of the L. The long leg sits parallel to the skin, and can rest 1/8 to 1/4" above the skin. The short leg has the actual needle which is inserted into the septum ....like the L is tipped over to the right. Make sense?
Hint: The needle CAN stick up 1/8 to 1/4" above your skin, as long as it's firmly anchored in the port. You DON'T have to try to cram the needle all the way to your backbone to get the needle seated properly in the port...it will end up bent and will be very traumatic to deaccess.
Hint: Don't let anyone that seems inexperienced or hesitant TOUCH your port. Educate yourself on the proper way to use and access your port. This is an expensive device to replace...financially and physically. You're responsible for how it's handled.
Hint: If you have any problem with the port, you can have an interventional radiologist conduct a "dye study" to assess the functioning of the port. You do not have to remove the port to see if it's working properly!
**If anyone finds a way to keep the accessed port DRY during a shower, please let all of us know.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Wow.....thank you!!! I don't think I want to go a week without a shower, and I infuse every day.....so I'm hoping there are options!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I posted a thread on here because I want a port instead of a 3RD PICC.
Supposedly, there are ports that are needless, I will put the topic below.
A member Smiles has one and swims and does a bunch of active stuff with it.
About showers: you can take them carefully with the port accessed. Our infusion company sends us water-resistant (not waterproof) patches called Aquaguards. They are clear plastic squares with adhesive edges that fit over the dressing. They do protect it, but they don't waterproof it.
However, if you have a hand-held sprayer in your shower (easy to install), you can take a modified shower. You just have to be very careful around the dressing area.
Also, even if you infuse every day, your nurse can show teach someone how to de-access you after your last dose before your dressing change the next day (e.g., if the dressing change is on Mon., then de-access after your Sunday dose). That way, you can at least get one good shower in.
Viva
Posts: 532 | From southeast US | Registered: Oct 2005
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