Questions about PICC line infections

Hi to everyone,

I'm new to the site and am thrilled to have found Oley. I have lots of questions regarding my two and a half-year old son who has pseudo-obstruction and severe gastroparesis (also needs catheterizing every 4 hours). He has a PICC line and a g-j-tube as well. One of the topics I'm interested in is about line infections. Dominic (my son) has had his same PICC line in for nearly a year now (thank God)! I'm curious to know what peoples' experiences are with frequency of line infections, early symptoms to watch for (e.g., just fever and redness at the site?) and primary causes (e.g., water?). Any feedback and reassurace is appreciated. I feel like we're just one line infection away from tragedy sometimes. That said, Dominic is an EXTREMELY happy guy and my husband and I feel beyond blessed for the opportunity to love up this little boy.

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I've had a PICC line for a couple of years, only having to have it replaced once because of a tiny crack in it. I would recommend a product called DryPro. They make PICC covers that make showering, bathing, and even swimming a breeze. Here's the link if you're interested: http://www.drycorp.com/

Hope everything works out!

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Thank you SO MUCH! My husband and I thought that Dominic would never be able to go swimming. That's awesome! We'll definitely be ordering that cover for him.

Thanks again!

Adrienne

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I had a PICC line for about 3 years (I had it changed on a yearly basis). During the last couple of years I had 3 seperate infections. Each time I suffered the same symptoms: fever, very exhausted, and vomiting. Flu-like symptoms, that wouldn't go away.

During these infections my PICC site looked fantastic, if it wasn't for the symptoms I would not have known about the infection. We discovered the infections by doing blood cultures after I complained about feeling so crumby.

The cause of these infections are unknown, one was yeast in my blood. Yeast is found on our skin. I was surprised by the infections because both my nurse and I were very, very careful when it came to cleanliness and dressing changes.

Each time I had the infections I was forced to replace the PICC line and undergo IV antibiotics- which can become expensive if they are not covered.

As a prevention, my doctor started doing weekly blood tests and monthly blood cultures. Because I live in Canada these tests are covered. I do not know how this works in the US. However, If your son comes down with unexplained flu-like symptoms, I would suggest having your doctor do blood cultures. If you don't know, Blood Cultures are like a blood test, the nurse takes your blood, it then goes into 3 bottles. The blood is then watched over a couple days to a week, to see if anything grows.

I hope this is helpful,
Shannon

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It worries me that fever is such a big sign... I ALWAYS have a fever from my cancer! Today by some miracle of god I am fever free - but that is pretty rare.

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Definitely get the shower cover from DryPro for the PICC line. I highly recommend it.

I've had many PICC line infections, one that I almost died from. Everyone is different. Sometimes, before an infection, I feel like I am going to pass out. Especially after the line is flushed. But usually, when I get an infection in the bloodstream, I would get severe, severe headaches, spine pain, joint pain, and fever. It would come on suddenly for me and now I know that is my queue to go to the ER.

Has your doctor suggested maybe a Hickman or Broviac catheter? I know have a Hickman catheter and it's much better than having the PICC line. I think a year seems a little long for a PICC line. The PICC line I had when I went into septic shock was in for 5 months.

Mimi

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Pancreasgirl,

I too had cancer, frequently nutrapenic and developing infections. When i got a line infection, there was NO question that something different was very wrong. I would guess that you would also feel a big difference. Bodies fighting cancer have to work harder to retaliate to infections: chances are that your temp will rise above it's current average! Good luck to you!
Mary

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Mimi
It is amazing that you have survived all that you've been through. The more of your posts that I read about all your past complications, that it's it just blows my mind-and yet you still send words of encouragement to me and everyone else!

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A big thanks to everyone for all of your posts. All of the information is really helpful!
Fortunately, our insurance covers for a home care nurse to come weekly to draw labs so we're on top of it that way. Our docs at UCSF also told us that if Dominic ever gets a fever above 100.4 then he needs to go to the hospital for blood cultures. We've done this twice but there ended up being no infection (just cold-related).
Thanks for the straightforwardness as well. We like to have all the information we can, regardless of how difficult it may be to hear. It just helps me to remember not to future-trip and just take one day at a time. We've got an incredibly happy and otherwise healthy little boy and we're having a blast with him!
Also, please know that your are all in our prayers daily.
Take care,
Adrienne

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Hi Dominic's Mom,
I am Courtney's Mom, who has had a Hickman line for just under 5 years. In all that time, she has never had an infection that she developed from home. Every infection she has gotten has been when she is in the hospital. Our Doctor requires her line to be replaced or changed every 4-5 months because over the years of medical care, all of her upper body line sites have collapsed from PICC lines.
Like your son, my daughter developed bowel obstructions and they decided to operate to see if they could determine the cause, Unfortunately, Courtney now develops adhesions from the surgery which require surgery to remove them. She too suffers from pseudo obstructions, so she is on TPN for 12 hours every day. We also try to supplement her with eating by mouth to stimulation the salivary glands, which stimulates the digestive system. Some times it works, other times it doesn't. We too tried the J-tube, but it didn't work, so now we have just a G-tube to vent her stomach when she is obstructed.

As far as infections, she has had yeast, bacterial and MRSA. The only way we know she has an infection, she usually gets a headache, fells tired and spikes a fever really quickly. Our Doctor's rule of thumb now is, she has a fever we do a blood culture immediately and she is put on a broad spectrum antibiotic until the results are back. She even had an diagnosed ear infection a couple of weeks ago, and they did the blood culture because of a low grade fever.

When Courtney's line was first placed, they had us draw blood weekly, however she becomes anemic very easily, so we now do it monthly. She also has a problem with maintaining her platelets, so to deal with that she has to have iron treatments through our HMO's Oncology Clinic about every 6 months. Some Doctors allow the iron infusions at home, but our HMO doesn't - yet they do allow me to draw her blood? In addition to limiting regular blood draws, our Doctors also limit the blood draws while she is Hospitalize as there is a cumulative effect on her iron and platelets.

On a lighter note, our Doctors won't let Courtney swim in public pools, but have allowed her to use our person spa and to swim with the dolphins at Discovery Cove in Florida. She also has swam with sting rays, sharks and coral reef fish. We just use extra careful procedures on the lines prior to the swim and afterwards. We always use a wetsuit on her too, as we feel it filters the water and holds our line protection in place better than just a swim suit. She has never gotten an infection from the salt water swims. AND SHE LOVES IT! She also snow skis, bowls and many other sports and has no trouble with it. We live in Colorado and we are not allowed to take her in the rivers and lakes because of e-coli, but really, that isn't a favorite of hers anyway. So I must say, that she basically lives a pretty normal active life, except she doesn't eat much by mouth and at night she and her cats sleep with a backpack with a pump giving her TPN.

Good luck to you and I hope they find the reason for Dominick's psuedo obstructions!

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Hi LizAA:

Thanks for your kind message. I sometimes wonder what kind of impact these infections will have on me long-term. I guess I'm like a cat - I have 9 lives!

Hope you are well!

Mimi

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Adrienne:

It sounds like you and your doctors are on top of things! Just look for anything out of the ordinary with your son. Kids are so resilient, but if he complains of anything new, even if it seems far-fetched, check his temperature because it could mean an underlying infection. But it sounds like you are taking fabulous care of him and it sounds like he leads a very normal life. I hope he continues to do well!

Mimi

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I've had a few infections and generally I can say it was my fault. It always has happened after surgery when my body is weaker at fighting off infections and when I am low on energy and thus sometimes miss out on key elements of line care. I find the best thing is just to make sure you do everything, and then check to make sure again! I've gone for 2 years without a line infection when I'm doing well and checking everything twice. Nice thing about the PICC is as Jameson has said you can buy the product from drycorp, which is a godsend. I'm currently with a hickman but I get to have it out once a week so that is when I go for a swim.

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Can we have a little talk about key elements of line care? What do you consider the most crucial elements? I am always interested in what others have been taught!

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Well, the visiting nurse draws my blood and does my dressing changes. With the TPN, my GI doctor wants me to wear gloves, even though the home care companies will say you don't have to. I also use lots of alcohol to swab the catheter tip before I use it. I've had fungal infections that have almost killed me, so that's why we are so careful. Also, when the nurse changes the catheter dressing, I turn my head or wear a mask.

Mimi

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Symptoms of infection, and other central line/PICC complications, are listed on the Oley HPN Complication Chart (see http://www.oley.org/charts/newHPN.pdf).

You can order a free copy online at www.oley.org/orderform.html, or call (800) 776-OLEY.

Roslyn Dahl
Oley Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY

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This message thread sure touched a nerve with me. My husband had mesanteric artery blockage that ended in ischemic bowel and three surgeries, ileostomy, etc. We just found out he doesn't have enough small int left for a take down. His picc line gets infected constantly and for no apparent reason. It is a revolving door, come home for two days, get infection, return to the ER, do not pass go and forget the $200. He stays in the hospital for 7-10 days. This has been going on for about 7 months. He's exhausted, I'm exhausted. We hoped the take down would eventually lead to the picc line being removed--doesn't look like it now. Oh, and about changing them, they change it every time it is infected.

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Courtney's Mom - what kind of cover for the PICC do you use when Courtney is bathing and swimming? I like the wet suit idea = bet she thinks that is pretty cool!

Thanks,
Carol

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hey my daughter has a picc in at the mo, on 4th in 6 months and lost a portacath too, been in hosp for that time, an caught all her infections thier. she'll be coming home on tpn, so i hope with me doing her line cares she wont catch as many infections, poppys 3 an has pseudo too, severe colitis,her stomach dosnt empty so she has a drainage bag free draining from a gastrostomy, an has a seperate jej to, which was prev used for feeds continously. she'll have 16hr tpn, and 8 hrs with maxijul and dioralyte at 10-15mls a hour just to keep her blood sugars up as she has hypoglycemia. im in the uk.

poppys symptoms of sepsis are always very severe, she'll have a rigor, with temps over 40, heart rate shoots in the 200, vomiting blood, grey, an lethargic. i get her cultured straight away and start broad spectrum antibiotics until we know the growth.

hope to get to know you more! kim x

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brickett --
your husband is having similar experience to my husband. he now uses ethanol lock 3x/week -- no infections for nearly a year!

also, be sure to read all the oley postings about line care. there might be ideas to tweak what you and he are doing.

and in the hospital -- watch everyone that touches that line and don't be shy about stopping someone who might not have (for example) washed hands with soap and water in your sight. better to be unpopular and sure of sterile technique.

take care,
cp

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Thanks CP:
He finally has been home for 12 days with no infections. Can you share what happened with your husband? I really haven't been able to talk to a soul going through the same thing I am.
Thanks for your reply.

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