My local hospital is undergoing an accreditation review this month and I've been helping by auditing from a challenging patient's perspective*.
Last Saturday evening, I noticed a reddish spot on my upper arm and when I checked again Sunday night, it was no better. I wondered whether to start taking antibiotics for what appeared to be developing cellulitis (I have a course of antibiotics on hand, but they are intended for secondary respiratory infections not skin infections), so I decided to check again Monday morning to see if a doctor's appointment was required. Just 7 hours later I was stunned to find a red streak from the infection site all the way to my armpit lymph nodes, so I made an emergency appointment and was admitted to hospital and on IV antibiotics that morning. I've now learned a new word - lymphangitis, and have been given plenty of time to catch up on my reading.
Seriously, if you see a red streak from an infection especially if you are neutropenic, don't delay getting urgent medical attention. Caught early enough, prognosis is excellent, but if the bacteria inflaming the lymph vessel (and causing the red streak), get into your blood stream, the resulting sepsis can prove fatal very quickly. Usually the initial skin infection and resulting lymphangitis are painful, but I haven't had any discomfort, raised body temperature or other symptoms until today, when I was hoping to be discharged. The initial infection is now tender and looking more inflamed, so now I'm on a different antibiotic and continuing my auditing efforts . I'm confident my new hospital will do well, based on my experiences.
* Severity level 4 neutropenia (ANC of 0.4) and a penicillin allergy make me a challenging patient...
Neil
Photo: Skin infection and lymphangitis on day 4 of treatment.
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Hope you are recovering well and out of hospital as soon as possible.
Your photo looked very familiar. My husband has had several such infections following insect bites in the past. Only made sense when his CLL was diagnosed 2 years ago. So far he has not had such a response to bites since he had FCR. However he takes no chances and covers himself head to toe when cutting the lawn!
A frightening experience Neil but no match for your expertise in early detection. I do think this is taking patient participation to a new level though because clearly the challenges you've given your hospital will help their accreditation immensely!
This condition is seriously sobering stuff because particularly in the neutrophenic, opportunistic infections are obviously very dangerous. I'm so relieved you caught yours early but sorry you haven't managed to get home today as anticipated.
You take good care of yourself and hope it all settles down now.
Thanks for this important early warning information on this potentially dangerous condition too Neil.
(And thanks for your support to me too from your hospital bed when I was convinced the norovirus I picked up from my mum this week was going to finish me off!)
Neil Thanks for continuing to support everyone while you were in the hospital and were going through this over the last few days, so glad you have shared what you are experiencing with everyone here.
An important lesson, boy you do go to some extraordinary lengths to provide these
That is indeed scary stuff! Thanks for continuing our educations and as mentioned previously, we are no longer in a position to "wait and see what it looks like tomorrow!" Best be contacting a Dr today. Get well soon, you are in our prayers.
I have heard of this because I recently had an abscess and Googled it. Presently, I have cellulitis on my lip, which I am watching closely. I am on antibiotics, prednisone, and antihistamines.
It appears that we are prone to these things, and I wonder why.
Thanks for posting this, Neil. It's a good lesson for us all... The photo is VERY helpful, and is now imprinted on my mind. I remember photos much more than words...
Hope the Australian dawn sees sees a big improvement in your condition. You do a great job in educating us, just wish this was something you were able to tell us about without trying it out yourself.
Get well soon Neil. Thank you so much for taking the time to share this important information with us. Thank goodness you were on the ball and got appropriate treatment quickly. I'll be thinking of you and hope you get home soon.
Many years before my CLL diagnosis I got a mosquito bite on my arm (zapped her while she was sucking my blood) which swelled up more and more until my arm was hot,mired, and swollen from my fingertips to my elbow. Fortunately I did not get to the point of red streaks. A doctor friend convinced me that this was not just an allergic reaction and that I needed to see a doctor. Fortunately a few days on Keflex and it cleared up.
Looking back, knowing what I know now, I wonder if I was already immune compromised, as I have had trouble with infections since I was very young. I certainly so casual about any red, swelling area now. I'm glad that you got yourself in to get checked before things got worse. There are easier ways to expand your medical vocabulary, though. I hope you get out of lockdown soon!
Many thanks everyone for your support; it has been much appreciated.
Here's some excellent advice for anyone experiencing neutropenia on how to stay safe - from the UK Lymphoma Association: lymphomas.org.uk/about-lymp...
(Remember, CLL/SLL is a Non-Hodgkins Lymphoma )
Please take this advice seriously; it could safe your life - or at the very least save you from a week or so in hospital, which is NOT a good place to be if you are immune compromised - as many of us know from personal experience.
I've been on this new antibiotic for 2 days now and have had no adverse reactions. My doctor is pleased (as am I) as we now have a greater range of antibiotics available for future use when needed. He was prepared to arrange for a culture at my suggestion, but decided against it when the second antibiotic started to work. Once less skin puncture (and into a bacteria infected area) I guess. Biggest change in my blood test results was a near doubling in my C Reactive Protein (CRP) result, which provides an indication of the level of inflammation in your body. It was still well within normal limits and would have been MUCH higher if the infection had become widely established.
My arm infection finally feels sore when probed or knocked, but given I feel fine and my temperature has remained normal, my doctor is satisfied that the infection has been stopped by the antibiotics. It's my other arm that's more uncomfortable, as it now sports multiple cannula sites and other punctures - it's a bit frightening how many skin punctures have resulted from a small puncture, probably from an insect or spider that I never noticed...
Neutrophils have a primary role in removing dead and dying body cells in addition to providing our first blood borne defence against infection. Naturally that essential process of clearing away cells killed by bacterial infection is slowed when we have neutropenia, so my doctor's concern now is that the infection site may become ulcerated and put me at risk of further infection. I've been regularly applying a cold pack today at a nurse's suggestion and that appears to be helping with the healing process by improving blood flow to the site.
If you haven't yet done so, DO read this or at least bookmark it or take a copy of it for future reference: lymphomas.org.uk/about-lymp...
I'm now much more aware of how great a job our skin does in keeping bugs out and how great a job medical staff do ensuring that any punctures they make are kept sterile.
I hope you are feeling better Neil.Thank you for the information,I am not surprised that you are still looking out for all of us while in the hospital. that is just who you are! Wishing you the best,Pumpkin
Sorry to hear you’ve been unwell Neil. Thanks for posting this piece of important information and keeping us updated on your progress. Hope you’re back in the comfort of your home before too long.
Sorry you needed another antibiotic, Neil, but it's a relief that it's starting to work...
I've just read the link you gave, and it's VERY helpful and easy to read. ( lymphomas.org.uk/about-lymp... ). I thought I knew a lot about neutropenia, but I learnt more from that site - largely because it is presented so clearly.
Thank you so much, for all the very practical lessons you're giving from your hospital bed...
Everytime I look at your arm Neil as I scroll down the HU list I cringe... hopefully it is getting better and you can repost with a much improved arm photo... 💪🏼💪🏼💪🏼
I'm feeling good and have been out of hospital now for nearly 2 weeks and plan to keep it that way. Infection site is still fading, but that's expected as one key task of neutrophils is removing dead and damaged cells and I don't have many of them.
Patty Duke died of sepsis - 'Sepsis, a reaction to infection that leads to systemic organ failure, kills more than 258,000 Americans every year, according to the U.S. Centers for Disease Control and Prevention, making it the ninth-leading cause of disease-related deaths in the country.
:
The signs of sepsis can be broken down in a simple acronym, notes the CDC.
S - Shivering, fever, or feeling very cold
E - Extreme pain or general discomfort, as in “worst ever”
P - Pale or discolored skin
S - Sleepy, difficult to wake up or confused
I - “I feel like I might die”
S - Shortness of breath
...time is of the essence when it comes to sepsis treatment. A 2006 study analyzing over 2,000 septic patients found that over six hours, each hour of a delay in treatment was linked to a 7.6 percent decrease in survival, but treatment within the first hour of a documented drop in blood pressure, a tell-tale sign of sepsis, was linked to an 80 percent survival rate.
:
“If you get sepsis, you have a higher chance of dying than if you have a heart attack, stroke or trauma,” Dr. Craig Coopersmith, professor of surgery at Emory University School of Medicine said. “There is no question that increasing awareness of sepsis would save lives.” '
Note that the article points out that an abnormal white blood cell count (such as caused by neutropenia), needs to be taken into context when assessing whether a patient may have sepsis.
With thanks to Dennis Pinkard for posting about this to the CLL ACOR forum.
Given the worryingly high uncertainty diagnosing sepsis, I hope there are improvements in detection. Hopefully CLL patients produce enough monocytes for the test to work too. Mine are undetectable most of the time, though they were detectable when I was in hospital - the highest result in nearly 2 years.
I understood those symptoms to be the sign of severe sepsis Neil. According to the Mayo Clinic link, these are the presenting symptoms of sepsis which has 3 stages, sepsis, severe sepsis and septic shock;
To be diagnosed with sepsis, you must exhibit at least two of the following symptoms, plus a probable or confirmed infection:
Body temperature above 101 F (38.3 C) or below 96.8 F (36 C)
Heart rate higher than 90 beats a minute
Respiratory rate higher than 20 breaths a minute
I had all 3 symptoms when I rang the 111 number to ask for urgent medical advice. The doctor took 2 hrs to ring me back by which time it was the middle of the night and she was quite content for me to wait until morning to go to hospital even though I gave her all the data which clearly indicated sepsis (as a result of pneumonia).
I've become increasingly aware that doctors do not always take into the account the absolute urgency attached to sepsis or the mortality rate which as you say, increases by over 7% for every hour untreated (I suspect it's higher for immune compromised patients).
So glad you're on the mend Neil and I apologise for introducing my own experience into this but I'm doing so to urge my fellow CLL'ers to be very aware of the signs of sepsis and invest in a good digital thermometer and preferably a b/p monitor which measures pulse. I had tachycardia of 143 on admission and a temperature of 38.4. My b/p had started to drop dramatically.
Please please be sepsis aware because we are at risk of it.
Your most concerning experience with the doctor being quite content for you to wait until morning despite the apparent seriousness of your condition, truly underlines why we may have to clearly say "I'm immune compromised and am very concerned I have sepsis" and say that you know time is of the essence.
In the middle of the night, it's very tempting to accept the option of staying home in bed. My post was meant as a warning; I wasn't anticipating another member having such a frighteningly close brush with death. I really couldn't have done much better in managing my close call but still required 9 days in hospital. If I'd turned up at Emergency late Sunday evening with just the slightly raised red infected spot on my arm, I'm sure I would have been told to go home. What frightened me was how fast the bacteria moved up the lymph vessel in my arm overnight and then waiting out the resultant worry of whether my blood had become infected.
I was diagnosed in the ER with cellulitis on my groin after a few days of fever, pain, and alot of redness. I was given 12 days of antibiotics, and sent home. 12 days go by, and i was getting a bit better, but two days after i ran out it came back. We were going to Oregon for something, and my parents didn't Care. When we got to the hotel, i noticed i was very confused, my heart was racing at 146 BPM, i was getting psychotic, was getting sharp pains in my groin, and kidneys/liver, wasn't urinating much. I go to the bathroom and noticed, there was a reddish line going to my leg, and the whole area was way too hot. I told my mom and she said i was just crazy and didn't care, again. I started taking Diphenhydramine and an older antibiotic with echinacea, and as much water as i could have safely drank. Surprisingly, after i got a bit sicker that morning, by the evening i was starting to get better. I continued doing what i was for a couple of weeks, and by the time i was home, all symptoms were gone, and my groin was only slightly red. I am very lucky, i was quite sure i was going to die, i had never felt that bad before, witch says alot.
So sorry you are going through one more hurdle in your CLL life. Thank you for letting us know of this condition and how quick treatment is necessary. I’m sure you may have saved a few life’s today.
I don’t know if you are a praying man. But I’ll b praying for you. Xx
I’m afraid your post doesn’t meet the remit for this site Ivy which is for people affected by blood cancers. Also you’re not old enough to post on here if you’re under 16.
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Any way to shrink lymph nodes without full treatment?
Greetings from The Christie 
Diagnosed with Monoclonal B-cell lymphocytosis (MBL) and scared!
TREATMENT OPTION FOR TRISOMY 12
