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Gregory D. Recipient

Driveline infections

Lets get to it. The worst thing that can happen to an LVAD user is a drive line infection. It can put you in the hospital many times over and cures with the various antibiotics may or may not work for you. It can lead to extra surgeries for debridement and in some cases make it worse. In my case I have had my Heartmate II for over 4 years and 4 months prior to having any infection. I traveled, worked and lived in the Far East and the EU. Never a single problem. Come back home and bam!!! A Pseudonymous A infection through my drive line and 4 instances of sepsis and bacteremia. Since this past May I have been in two different hospitals and taken both pill and IV Antibiotics. No cure, the major reason is that the bacteria creates a biofilm that keeps them safe from the antibiotics. So they grow and spread principally to and around the pump and canela lines. So its a case of ahh dammed. However... being that I am a person that never says I give up or in I have found the following things that help and very probably kept me from getting an infection any sooner than I did. Here is a list of things that are a must for Drive line and site management. 1. Purchase a UV lamp from Amazon or who ever. Use it for 1 minute prior to closing your new dressing on the drive line entrance location and a long the exposed drive line. 2. When washing or showering use -ONLY- your soap. Do not use soap that others in your home may be using in the shower. 3. Wash daily. Make sure that the drive line exit sight is clean and dry prior to placing your patches. 4. Use the Silver impregnated foam at the drive line exit sight and cover with a 4" optifoam pad. 5. Be sure to change your foley retaining clamp at least once a week, to ensure it will not allow the drive line to move up or down or be caught on something. 6. Wash your hands with soap and warm water prior to changing your dressings. You can use gloves or not your call. 7. Use a small amount of Iodized salt at the exit site. Salt kills Bacteria and when placed at the exit site will keep any bacteria that is on the drive line from entering the body. Might sound old school but it does help. 8. Keep your appointments with your team. The sooner an infection is detected the sooner it can be treated or worked on. Now for those of you who are wondering ok, well if this worked for 4 years plus, then what do you do when it does not. The answer is and is not simple. Work with your team and -DRIVE- your Infectious Disease Doctor to look outside of the normal or limited box of treatments that they have. YOU are your best advocate. If the ID doctor cannot look outside of the box, find one that will. In my case, I have taken 18 different Antibiotics with little success apart from holding this at bay. Until now. I have found an ID Doctor who does think outside of the box and am following through with the FDA on and various laboratories on the use of Bacteriophage treatment. This type of treatment has been around since the turn of the century and does prove to have a more positive outcome than others which still require going under the knife. Here is a list of "off the wall" items I and others have found that do work but are not approved for use in the US by the FDA. Currently the FDA is only allowing study cases. http://www.phagetherapycenter.com/pii/PatientServlet?command=static_phagetherapy High intensity Red & Blue Light https://lighttherapyoptions.com/blue-light-mrsa-treatment/ Proton Therapy Radiation Therapy Narrow Beam UV 240 to 280nm Gallium maltolate: Very successful in the UK and EU. Studies in Washington state showed cures for various CF patients who had varying infections. Hemopathy Possibilities Essential oils. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346404/ Used throughout Eastern Asia with great success, for hundreds of years. So all in all, be aware that you will very probably get an infection. It is not the end to end all. Work with your team, advocate for yourself and look outside of the box. And if all else fails, be thankful and grateful for the extra years you have received. The LVAD was not intended to let us live forever, just to get us where we needed to be.
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Paul B.

What are the initial symptoms that an infection is starting? Obviously you would look for discolored seepage.
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In reply to by Paul B.

Gregory D.

There was some seepage, but the real tell all was a skin matrix growing up the drive line. Originally my team used Silver Nitrate swabs to control it. However the more they did the more it headed back down the drive line into my chest.
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Henry R.

Thank you very much for your insight, suggestions and discoveries. Excellent! I am using a far infrared sauna which, among many benefits, can help with any possible infections. I go in once a day For 20 minutes at 120F degrees only. I pack my gear in an insulated bag with cooler insert. It is like the UV lamp all over. Good luck with your treatment, and keep us informed. Thanks!
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Ann G.

In my experience, the drive line starts seeping mucus, the area surrounding the drive line becomes red and shows up like a rash. The stomach looks like it is growing and the patient becomes pale, no appetite and no energy. In my husband case, he has been on 2 types of antibiotics through the IV for the last 9 weeks, he still has to continue with the antibiotics for another 3 weeks. The antibiotics kicks the hell out of the patient, nauseousness, lack of appetite, tired all the time. Some people become allergic to the chlorhexidine swab used to clean the drive line which would also cause infections. In my husband case when I first started using the swab, we noticed that after 5 months the exit wound was not healing and there were red discoloration all over his stomach. The LVAD team made recommendation to stop the swab and start using Saline, the exit wound has since cleared up. Taking the antibiotics through IV really disrupts the patient social and mental being. I understand that most patients who has an infection takes antibiotics for the rest of their life, can someone confirm this for me?. Hope this information helps and gives some insight to anyone experiencing an infection.
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Stan C.

WOW!! You my friend sound like most of this is personal experience but also a ton of research. Thank you for the information as I will save it for future use. I'm 16 weeks post surgery but have had 2 episodes already of possible infection. Both times the cultures came back negative but was put on antibiotics just in case and it did clear up. My wife and I have discussed this with my LVAD clinic and they want to try a few things. Sorry, I am not knowledgeable enough yet to say exactly what we are doing but did change the pad that covers the would the last time, it cleared up, and they want me to go back to the original pad and see if it happens again. Damn scary to me but at least we are working on it.
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Cindy R.

Thanks so much for the information, I love your attitude! I had an infection when my 1st lvad was 4 years in. I was treated and released from the hospital, and all was well .. Until 3 years later, the exact same infection came back. It came back with a vengeance, and I had a fever and pain. Since the infection stays with the non-organic material, my choices were few. The best and greatest option for me was not hospice, but replacing the entire lvad. This was a 3rd chance for me and I am very grateful. I will talk to my awesome lvad team about your solutions. I have super sensitive skin and cannot use the biopads, it is almost like acid on my skin. Due to skin irritations because of biopads and tape, I did not change my dressing every day, but every other day. As time went on, due to poor circumstances and laziness, the days extended to 4 or 5. Shame on me now, and it will never happen again. There is no reason in the world to not change your dressing every day. I wish you so much luck, and am again grateful for your sterile information. Could a new system work for you maybe? Thanks again
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Gregory D.

I have completed the Bacteriophage, (Phage) experiment with UCSD. Should anyone like a copy of the case\experiment file as a pdf. Please let me know. It shows promise but more for those who have the Pseudonymous A detected early rather than long term. Please share this with all of your medical ID groups if you do care for a copy.
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In reply to by Gregory D.

Eileen S.

I would like a copy. Can you please email to me at stantoneileen@gmail.com? Thanks
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Anonymous

My email is rbrickwedde@brickwedde.com. I have a heartmate II and a driveline infection. Could you please send me the info. thanks.
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Maurice S.

please email me the info...Wsife has MRSA infection in driveline and biofilm on device also, willing to try any and everything!!
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In reply to by Gregory D.

Maurice S.

sorry ABOUT THE EXTREME Late response! My wife has been hospitalized several time since i was last on here. Sloan_5151@hotmail.com is my email address can you please send me what you have on the trial you went through!? we have been forwarded to palliative care and as of now the current team has completely slacked off for lack of better word! Still trying to get in a whole different lvad program but seeming to be quite hard with out private insurance
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In reply to by Maurice S.

Gregory D.

I sent you the files they are both .pdf to your e-mail Also have a friend that just went through this also except his infection was Golden Staph and now after two weeks is free of infection is being placed on the transplant list.
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Heather Y.

I know it may seem gross asking if anyone has photos of the infection but my husband is 5 wks post op and our biggest fear is an infection. I am his caregiver and change his dressing every night. I wear the mask, use surgical soap for my hands and wear gloves. My husband has the Heartmate III and all of this is very new to both of us. There is so much information that it is a bit overwhelming so every time I change his dressing I take a photo of it so if I think he is starting to get an infection I can email or show the picture to his team. I was just wondering if anyone else had photos of an infection they have had just for reference. Thanks, heather
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Larry B.

There are many ways to get a driveline infection but the number one reason by far is trauma to the driveline. Above all else, protect your driveline. I’ve heard of women getting them just by picking up one of their children and straining themselves while doing so. Any pulling on the driveline can also cause one. Doesn’t have to be major damage and you may think nothing of it but it can sneak up on you for sure.
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Maria C.

Im a caregiver for my son who has had an lvad for 3 1/2 years

This year

he went through 4 months of a driveline infection with multiple hospital stays and a pic- line for antibiotics at home for a few weeks. They released him from his check up  and was said to be free of infection 

his blood work looks great

He feels  good with a little sensitivity at the site...

His driveline has been trying to heal

but it just doesn’t seem to heal up, last week  he bled through 3 dressing changes in 1 day with an INR of 3.2

but then it stopped bleeding 

also ABOVE the drainage site he has a reddened area that looks irritated and seems to be getting worse on the top of his skin

we use betadine and saline to clean his dressing as he’s allergic to  chlorohexidine

Any ideas   Of what we can do ?