Looking for a Sepsis Survivor's Support Group

@soby
Make sure you clean any cuts or bites on your skin. If you have flu like symptoms, go to a doctor for either meds that will protect you; or confirmation that the wound is not dangerous. Before you go to the dentist, ask your doctor for a one-time dose of antibiotic before your appt. Make sure your diet is healthy and you are getting adequate rest.

@loribmt I, too, suffered septic shock as I contracted double pneumonia. I was admitted to the ICU for 8 days, and ended up having constant migraines big-time heart issues and trouble breathing. I was in and out of ICUs for 3 months with the headaches. I use oxygen only at night. I am now medicated for migraines and various heart issues. I am still very weak 9 months later. Sometimes I feel like I may not make it, sometimes I am cheerful and productive. If I overdo it, I suffer for it - taking naps and recovering.

@sallylightfootd
Yes, I understand. It took weeks until I discovered it had affected my vision and that I had brain damage. I could not read for a year. The print would drip down the page. My brain felt like concrete, I couldn't do simple things I had done a million times. I had to leave my job and go on long term disability; never to return to work. I retired at 65 the normal age for me. I couldn't drive or stay on task at first. The healing is slow. I appreciated that you know the boundary of "too much". I know my limits and operate within them. Be good to yourself when you feel it is "too much" take a break and rest yourself. Good luck.

@sallylightfootd
Oh my gosh, Sally, what a traumatic experience you’ve gone through and still continuing with the aftermath! From what others have mentioned this is a very slow, but steady recovery. So I admire you for taking one day at a time and understanding your limitations.
Were your heart issues directly related to the septic shock?

@loribmt
No. Evidently not, although the two encourage one another into yet another health crisis

I am interested in finding a sepsis support group too. I posted to Mayo but I don't quite understand this website. I never saw my own request and I don't even know if this message will be seen (?)

@jann47, hi. Your messages are seen. 🙂 You have posted successfully to the sepsis discussion to connect with other sepsis survivors.

I can understand the need and desire to piece together the parts of your experience that you can’t remember. There will be gaps that remain. Of course your medical records can give you a run down on the care you received, medications, etc. But that is rather clinical. Was your boyfriend able to give his account? Or family members?

Hello @ratterjm, and welcome to Mayo Clinic Connect.
I'm so glad you found this online community and that Connect has been a good resource for your guide.
How wonderful that you are looking for ways to help patients who have gone through very challenging health conditions that they ended up in ICU.

I have had a little experience with post ICU issues after being on a respirator post open heart surgery. To this day, six years later, I still have to do a big-time pep talk to myself before I have my teeth cleaned! Just the feeling of having that suction thingy in my mouth, and not being able to swallow...brings back bad memories! And I had to have a root canal a few months ago, and thought I was going to have some kind of panic attack! All the prep before with the plastic tent, the mouth gaurd...ugh!! I powered through it though.
And my experience was NOTHING compared to others who are in ICU for extended lengths of time.
I had never heard of PICS, and it was not mentioned pre-op, but I knew what it was!

Unless you experience some things, it is so difficult to put yourself in that situation.
Knowing what to expect beforehand for the patient and their support group can be helpful.
But sometimes that is not going to happen, such as the case of multiple trauma, or other reasons a patient goes straight to ICU with no warning.

I have alerted our esteemed Moderator, @colleenyoung , to your search. She would be the person in the know to answer you.
How long have you been working on this project?
What made you decide to start this?

@ew62 Hi i would really like to chat as my husband has been treated for sepsis meaning infection is sorted his vitals are all ok just taking time to fully be awake and i desperately want to chat to understand as the Doctors just tell me to give it time. The strange thing is also his had various tests done and all came back normal...

@angelanathoo, it can be so confusing to care for someone recovering from sepsis. I'm glad to hear he is on the road to recovery. It does take time. Have you noticed small improvements the last few days? Is he home with you now or still in hospital or rehab for recovery? How are YOU doing?