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.