Cellulitis - Lessons Learned

I just got out of the hospital for my first episode of cellulitis.  It is an experience I had hoped to avoid but now that it has happened, I wanted to share what I have learned.

First lesson learned:  In spite of being vigilant with skin care, wearing compression garments, getting regular MLD and being careful not to injure the arm, cellulitis can still occur without any easily identifiable entry site for bacteria.

I really did believe that short of a massive injury I would never get cellulitis since I tried so hard to "do everything right".  I have found that there are no guarantees.  I still encourage everyone to follow the standard protocol and preventive tips because your risk of developing cellulitis will be much greater if you do not.  I may well have had multiple episodes by now if I had not taken as good care of my arm as I have. There were no obvious cuts, burns, bites or injury to my arm to account for this infection.

Second lesson learned: Cellulitis is an emergency situation and should not be ignored.  Early treatment is essential to quick recovery, reduction of further damage to the lymphatics and prevention of more serious systemic septicemia.

Even though I am well informed about the seriousness of cellulitis I still found myself only mildly concerned when I had a 2-3 inch tender red spot on my upper arm.  I kept thinking that with cool packs, neosporin ointment (even though I could not find any broken skin to apply it to) and close monitoring it might go away. 4 hours later when I observed that the heat and redness was deepened and that I now had spreading pain down my chest wall I decided it was time for a trip to the ER even if it was 3am in the morning.

Third lesson learned:  Be proactive and keep a current antibiotic prescription filled and ready as needed in the event you have an episode of cellultitis when on vacation or away from home.

Since my original LE diagnosis 2.5 years ago, I have had my primary MD write me a script for Keflex 500mg PO 4x daily for 10 days.  I fill the script and carry it with me wherever I go.  I actually used it for the first time this week when I took my first dose prior to heading to the ER.  While in many cases a mild case of cellulitis can be cleared up with oral antibiotics, the crucial factor is getting them started very early on.  Even then, it may not be possible to control a raging cellulitis without getting the stronger IV antibiotics.  Having a script already filled saves you some time in starting to fight the infection and also gives you some protection while you head to a medical treatment center.

Fourth lesson learned: Be your own best advocate and know that you can help direct your own medical care by being prepared and knowledgeable.

I had decided by 2:30am that I was going to the ER.  Before I left, however, I took 15 minutes to pack my medical history summary (which I had requested long ago from my doc), my LE night time sleeve, my LE Alert wrist band (obtained from Peninsula Medical - free for the asking), my printed out article on Cellulitis from E- Medicine and a recent article from the NLN on Infections with Lymphedema.  I also made sure I had my daily medications and other essential items I might need if I was admitted to the hospital.  These items came in handy for a rapid admission process and I was not lacking necessary items once I learned I would be admitted.

Fifth lesson learned: Become familiar with the presentation, symptoms and progress patterns of cellulitis so you are better prepared to identify another episode in yourself or others.

Granted, each person's experience will vary, but there are some basic similarities that should be heeded and respected.  My cellulitis first presented in the evening while I was out to dinner with my husband.  I had a deep achy feeling in my upper arm (Deltoid area) very similar to how it feels a few hours after having a flu shot.  I was wearing my compression sleeve and glove as usual and the pain in my upper arm was bothersome enough that I took some motrin.  I was attributing it to the fact that I am in the middle of a kitchen remodel and have been removing wallpaper, unloading cabinets and probably just "overdid it". The motrin helped, but a couple hours later while rubbing my arm through the sleeve I felt a new tender spot further down on my arm.  I removed my sleeve and found the irregularly shaped red blotchy area that was warm to the touch and tender when pressed on.

 This is when your mind starts to play games.  I was initially in a state of denial even though I knew logically that these were symptoms of infection.  I used cool compresses, marked the red area with a permanent marker so I could determine if it was spreading over time, and thoroughly examined my arm for any signs of breaks in skin.  I adopted the "wait and see" attitude for a few hours.  I did not yet take my first Keflex capsule because I knew once I started I would have to complete the full 10 day course and I wanted to "be sure" it was cellulitis.  As I said... I was in denial.

Only about 4 hours later when I started to feel chilled, my left shoulder area was hot to touch and I saw the beginnings of tender red blotches on my chest wall did I know that it was time to face reality.  Within 2 hours of getting to the ER my cellulitis has spread down my left side, small red streaks were running from my collar bone down my left upper chest and large red blotches were popping up on my back at the left shoulderblade.  I went from feeling so hot I wished for a fan to feeling so chilled my teeth shook and was covering up with anything I could find.  In spite of this wide variation in my body's perception of temperature, my actual oral temperature never did get higher than 99.8F.  If there had been bacterial spread to the blood stream, high fevers would have been much more likely.

After the first 24 hours of IV antibiotics the improvement was remarkable.  I still had red blotches all over my arm and chest but the heat was dissipating.  After 48 hours the blotches themselves were fading and becoming less tender.  Labwork was drawn to verify no major bacterial infection in the blood. (cellulitis infection can spread through the lymphatics themselves and is called lymphangitis. Left untreated long enough the bacteria can reach the blood stream and cause serious damage to other organs.  Typically a bacteremia/septicemia is much more difficult to treat and can result in not days, but weeks in the hospital)  Fortunately, my cellulitis was treated early enough to not result in more than a 2 day hospital stay.  I am now on a 10 day course of oral antibiotics and will be seen by my PMD next week to be sure everything is cleared up. 

I hope sharing this has been beneficial.  I certainly feel I am now better prepared to recognize and accept the presence of cellulitis than I was before.  I certainly do not want someone to walk away from this post, however, in a panic and worry every time they get a minor break in their skin.  I can tell you that I have had skin breaks, bug bites numerous times that never resulted in an infection.  Still, I have a newfound respect for the fact that the potential for infection is always there in spite of my best efforts.  That knowledge still does not negate the importance of practicing the best prevention habits and learning to recognize when urgent treatment is needed.

Hope, my LE has never had large volume increases but I did quickly become Stage 2 LE with lots of fibrosis early on.  My LE arm has about a 9-10% volume increase compared to my normal arm.  I have been basically at maintenance level for the last year, which always involves a certain amount of swelling and persistent fibrosis since my arm will never revert to normal.

I want to mention a couple more important aspects of dealing with a cellulitis episode.  Once you have an active infection with areas of redness, swelling and pain, the general consensus is that you should no longer wear a compression garment or participate in MLD sessions for fear of more rapidly spreading the infection.  While there is still debate about this topic, I have been told by knowledgeable therapists that they recommend holding off compression garments until you have had at least 24-48 hours of antibiotics in your system. 

My physician concurred with this idea and allowed me to donn my sleeve and glove after the first day of antibiotics was completed.  I was instructed by my therapist, however, that I should abstain from MLD for at least a week and all areas of redness/heat should be resolved first.  Hopefully, this will be an area that further research can clarify more specifically for us in the future.

Hi Jinky   I think overuse can certainly increase our risks of infection because there can be more swelling and more high protein content LE fluid in our arms just waiting for a bacteria to come floating by.  But I believe there has to be a source of bacteria from somewhere to initiate the infection process, so just increased LE fluid alone should not cause infection.  The less hospitable we can make the environment for bacteria the less likely a major infection will take root.  All the more reason to try to keep our LE at peak maintenance.

Binney, my suspicion is that bacteria from an outside source has found its way through as you say "micro-cracks" or a route not easily visible to the naked eye.  There is a theory about bacteria entering from around our nailbeds and the tiny open areas often found around our cuticles.  I have heard that the location of the red, hot inflamed area is not always the site where the bacteria entered the body, but just the location where the bacteria stopped to replicate and cause an inflammatory response.  Perhaps this might account for most cases of "spontaneous infection". 

Otherwise, it is also true that our bodies house many forms of "good" bacteria on an ongoing basis. If the natural balance is thrown off by immune system problems or use of chemical agents such as antibiotics, chemotherapy etc., certain bacteria or fungus already naturally in our systems can grow wildly, unchecked by the bodies usual system of balances and create an infection.  Just a guess on my part.

Bumping this up for Hamie1.

Hope this helps!