Cellulitis and Sepsis just released from the hospital

Two weeks ago I got cellulitis on my hand which quickly became sepsis. I was hospitalized for 6 days on IV antibiotics and was released on a long term antibiotic infusion. The recovery is very slow and a bit sketchy at this point because.....I am allergic to almost all antibiotics. Each one I try via oral pills sends me back to the ER with an allergic reaction. The infection seems to be improving but very slowly due to my inability to use the one thing I need - antibiotics. I have lymphodema in the arm/hand where is occurred. I thought is was mild but I think it was more of an issue than I realized (lymphodema from bi lateral mastectomy). Looking for anyone who may have experienced cellulitis and sepsis and might have some words of support or insights. I'm finding it hard to find any real information on what this might mean for my short term recovery and long term health. Scariest, worst thing ever.......

@cindylb, this must have been (and still is) a scary and harrowing experience. I'd like to bring @mamacita @karen00 @cootiesgirl1 and @annapocono into this discussion as they too have had experience with cellulitis, as well as @psd0972 and @charlena who are sepsis survivors.

Here is a couple of discussion about sepsis that you may wish to read too:
- Sepsis https://connect.mayoclinic.org/discussion/sepsis/

Cindy, As you well know, cellulitis can be life-threatening if left untreated. Which just seems crazy since it usually starts from a simple cut, scratch, insect bite or other break in the skin. What were the signs for you that the cut on your finger turned seriously bad and you knew you had to get to the hospital? Have you also seen a lymphedema specialist? What are you doing to treat the infection if you can't take antibiotics?

@cindylb, welcome to Mayo Clinic Connect. This is a gathering place of individuals who are trying their best to be good consumers of their own health care. These days, we really have to do our homework. Doctors are so busy, nurses, too, and often, there is miscommunication. So it is helpful to have a place to come where we can ask questions and get things sorted out in between medical appointments .

I am not a medical practitioner in any sense of the word. But our Director, @Colleen Young mentioned to me that you were going through a really tough time with Cellutis. She knows all about what both my daughter and my husband have been through with Cellulitis. Both are doing quite well, now. I am a Volunteer Mentor here at Mayo Clinic Connect. Mostly I hang out over at the Autism site, or at the Depression sites. Gratitude and Chronic Illness . All are valuable to me.

You did not mention Diabetes in your story. My husband and daughter both are Diabetic, and take strong precautions whenever they get a scratch or a cut. Their ability to heal is compromised by the excess sugar in their blood. My daughter has a difficult time keeping her blood sugar under control. So does my husband. I am Type Two Diabetic, and I am on a strict low carb diet. Yet, I still do not heal as quickly or as well.

My daughter has Lymphedema, primarily in both legs. Her recent bout with Cellulitis landed her in the hospital for a week, hooked up to IV antibiotics. Antibiotics in pill form had ceased to be effective. Her leg looked like it was about to be Gangrenous. Thank God her PCP sent her to the ER with orders to be admitted. She is doing just fine now.

My husband had cellulitis in both legs, several Thanksgivings ago. He had to have surgery to take care of it. The tiniest scratch or mark can send him into a severe case of infection. While you do not have Diabetes, the fact that you have Lymphedema puts you at a somewhat greater risk of infection. So you will need to be proactive in your routine of self care. Cold weather can cause some folks to have cracked skin. Chapstick, body and hand lotions will help to keep skin smooth and clear. If you have even the tiniest scratch, always make sure you keep it clean and covered with antibiotic ointment. Wear gloves to protect your hands from the elements.

Needless to say, if you suspect an area of skin is not healing as it should, do not hesitate to call your PCP. You may avoid another hospitalization if your wound is caught in time.

I am so sorry you have had to go through with this serious condition and all it entails. But you are not alone. Many other folks have this and although it is not easy, there is strength in numbers. We are here for you, and happy to lend an ear, any time. As we say often over at the Autism site, "We are better together."

Please let us know how you are getting along. We can learn from one another, and help each other.

Mamacita

@mamacita Thank you for posting valuable information, I don’t know if I have anything definable. I do know that as the neuropathic itching starts, I scratch my legs during sleep and have lesions to deal with in the morning. I do use an Rx for healing. Have comfort and ease today. Chris

PS, Will you lead a writing class someday? Just so well done.

@Chris Trout, Volunteer Mentor , thank you for those kind words! You give this little ol' Southern lady's heart hope! I used to be so terrified when I was in school. So many rules to remember. Then I found myself in an English Class for students suspended long term for criminal activity. We teacher type folks lovingly referred to this school as the "Last Chance Hotel." The lead teacher selected a book for the entire class to read. "All Over But the Shoutin'." Prize winning author Rick Bragg wrote about my South, where I had gone to college, where I had been proposed to by the handsomest man I knew. Where I made new friends who would challenge me.

Where I learned that it was a big world out there, much bigger than the small town I grew up in. Where I learned that love, home, friendship and family were the things of the heart that would stand the test of time. I met Mr. Rick Bragg when he came to our town to speak at the Princess Theater. He talked about writing from where you come from. Poor English grammar but you get the point.

Write about what you know. Speak from your heart. Let people know you mean well. That you care. Simple. To the point. As best as you can.

As it turns out, he is first cousins to some good friends of mine. And I tell you truthfully, I will not feel one bit of shame when I invite myself to the family reunion. Yes. I am a groupie, indeed.

Be in good health my dear, and take good care of you. You make me smile.

Love and light,

Mamacita

@cindylb, how are you doing now?

@cindylb, Good Tuesday morning to you. How are you and your family today? We "talked" recently about cellulitis and it's impact on our lives. Since my husband is so prone to get it, as well as my oldest daughter, I am somewhat familiar with it. At the very least, we watch for it, to make sure that any treatment for it is actuslly working.

I can relate to what you were saying about the various antibiotics that are used to treat this condition. As long as a sore is treated in the very beginning, my daughter does well with almost every antibiotic there is. Augmentin never works for her, no matter what it is prescribed for. Her PCP knows this, of course, and prescribes accordingly.

Most antibiotics work for my husband. The problem he had when he had to have surgery on his legs was because he did not realize how serious the infection was. The sores were painful to touch, but he could not actually see them. They were on the backs of his legs, where he could not see. It was only when I observed them, did I see the redness and apparent inflammation. At that point is when he made an appointment with his PCP.

Scientists tell us that there are, indeed, some antibiotic resistant bacteria roaming out there. Hand washing frequently generally takes care of most of those. Unfortunately, every now and then a few escape our best efforts. I had a spot on my knee several years ago that I thought I could take care of at home. I did go to my doctor, and he was able to lance it. The infection had burrowed down much further than I had thought.

Suffice it to say, I will be looking further into the readings concerning Cellulitis and Sepsis. This affects my family and yours. It affects many, many people. I thank you so much for bringing up this important subject. I believe you mentioned having severe allergies to various medications, and this limits the availability of treatments . Would you be comfortable in telling us a bit about this?

For us, after several days of using a particular drug to fight cellulitis, if there is not any noticeable improvement, we make another appointment with the doctor. We don't grit our teeth and bear it, like we used to. I am certain you feel much the same. We do, how ever, use warn packs to help with the pain.

I am thankful for medicine properly utilized that helps us live our lives. I wish you all good things and days as free of pain as possible. I hope that these past few hurdles are mere "glitches" on your road to recovery. Hugs and lots of positive energy sent your way.

Love and light,
Mamacita

Colleen, thank you for connecting me with these members who have experience with cellulitis and sepsis. As always, you are very helpful!
I had no warning, just a small cut and it evolved very quickly into sepsis. I only remember feeling a tiny sting of pain on my hand before bed and by 3am I was in big trouble. The lymphedema is resulting in a slower recovery and a more dramatic problem than it might if I didn't have the lymphedema. When I had my bi lateral mastectomies I was early stage and only lymph node was removed from my left armpit. However, there was surgical damage done and the lymphedema was the result. It was mild and I got both physical therapy and massage therapy and a sleeve for it. One year post mastectomy the doctors finally acknowledged the lymphedema (they said it was impossible and acted as if I was imagining the swelling...not helpful) and I had scar revision surgery to remove a large amount of tissue under my arm that was collecting fluid. Once that was resolved I had no more lymphedema symptoms until this cellulitis and sepsis. I have never worn my sleeve (not needed) but I will be doing that in the next couple of days on a regular basis to help resolve my hand swelling. Its important for all breast cancer patients to advocate strongly for information and treatment for lymphedema......I'm glad I did even though I really wasn't supported by my doctors initially.
I am using antibiotics but it's been very difficult for the doctors because the first line antibiotics for this are not available to me. Unfortunately, the antibiotics I have been and am using all carry "Black Box Warnings" for serious side effects and it meant a much longer stay in the hospital because it was hard for the doctors to get the right targets to kill the infection. I am going back to allergy for a consultation on what I can use in the future.
Thank you once again for all your support.

@mamacita Thank you so much for your reply. Once I was home and able to try and find more information on Cellulitis and Sepsis it was hard to find anything but the most basic information (and I need to understand my challenges to remain calm and focused). That is when I reached out to Colleen and she found you for me! I am a breast cancer survivor (four years) and developed mild lymphedema that I have been able to control easily, but it has created extra challenges for me with the cellulitis. I have been careful but something obviously slipped past me and I found myself with this horrible infection. It's very scary and so I feel for both your daughter and husband. I will be even more diligent now.
My extra challenge has been my allergy to almost all antibiotics. I was hospitalized and they found antibiotics that I could tolerate or where they could manage the side effects. I have been less successful while out of the hospital and have had to go to the ER for treatment twice due to allergy to the oral antibiotics. I will be going to the allergist again to see what my plan will be moving forward.
Although my sepsis was said to be 'mild' it was the most painful and debilitating thing I have ever felt. I developed problems with my heart, kidneys, platlettes and blood sugar while in the hospital. Of course my inflammation and infection markers were off the charts but it's all resolved now with the exception of my hand and arm swelling and a small abcess in my hand that was addressed yesterday with ortho and will be followed.
I am just now well enough and pulling my life back together to respond to your post BUT I read it right away and it gave me support and comfort and I thank you so much. I would like to stay in contact and learn from your experience and I welcome all of your suggestions.
Thank you for being there.
Cindy B.

I will share what I learn once I have done the allergy consultation. I'm allergic to everything and that brings it's own challenges. I take no regular prescription medications and couldn't tolerate any of the breast cancer follow up drugs either. There are some pain meds I cannot take as well and I'm even allergic to..........the sun.........yes, the sun. My hope is that the research into allergies and managing them will advance soon as my grown daughter shares my propensity for allergies.
The antibiotics I am using and very scary to me. I am tolerating this one now (Zyvox) but it is said to be at the top of the 'food chain' and kills MRSA and everything else (right now it's killing my stomach, sigh) but I'm managing that with probiotics as best I can. My fear and that of my doctors is that I will develop a resistance to even these antibiotics and I will have no options. I got the worst possible thing I could I guess. I tough out simple infections (or have) that require antibiotics all my life and try to get my immune system to work on it but my body certainly couldn't handle this one. I'm considering buying a large bubble and living in it - ha ha!!
Cindy B.