Looking for a Sepsis Survivor's Support Group

Posted by EW @ew62, Jun 10, 2023

I am interested in finding a support group for Sepsis Survivors. Are there groups out there?

Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.

Profile picture for timwife @timwife

I'm looking for as much information as can be provided on recovery of sepsis. My husband needed some kidney stones lasered, urologist said they were large and if they suddenly moved, it would involve major surgery. To avoid this, it was suggested they be blasted into small pieces with an out patient surgery. A stent would stay in for ten days. All went well. There were no antibiotics prescribed either before or after the procedure. Husband had some discomfort urinating the first few days home. Pain became more unbearable in his right stomach area where the stent was located. Within 2 days he was lethargic, had a temperature of 103. Rushed to hospital where it was determined he was in sepsis and needed antibiotic IVs ever 6 hours for the next 5 days. His cognitive ability was cloudy and I was told in a matter of days he would be back to his old self.
Infection cleared and I brought him home. 10 day dose of 3 times a day amoxicillin . It's been a week since he's been home and he is not himself. Often appears to go in a day dream state, has a tough time in conversation, and falls asleep many times during the day. My frustration is not being given any information on this ! I've learned some things through the internet, that's where I found this site, but why when we left the hospital no one felt the need to explain what is presently happening?? I've made an appointment with my husband's primary care doctor. He was not part of the urology diagnosis. I just want some advice, answers, and support. The urologist has not checked on my husband. Stent will be removed in 8 days. Please share anything about sepsis you have experienced or witnessed. Thank you.

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@timwife, how is your husband doing? Has the stent been removed? How are YOU doing?

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The stent was removed today. He's on the days of amoxicillin as a precaution. We are feeling much more positive than we have felt in quite a while!! Thanks for checking in!!!

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I am a recent sepsis survivor and looking for a support group.

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Profile picture for lori18245 @lori18245

I am a recent sepsis survivor and looking for a support group.

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@lori18245, welcome. I'm bringing fellow members like @timwife @erikwebb @ew62 @lonna72789 @amylee1111 @plexiclone @vlbondon @lonna72789 @snapper8182 @cindylb @yvonne55 @tanner0515 to share with you.

You might also be interested in these related discussions:
- Sepsis: What's your experience recovering from sepsis? https://connect.mayoclinic.org/discussion/sepsis/

- Post Sepsis and ICU Syndrome: There are days I feel so down https://connect.mayoclinic.org/discussion/post-sepsis-and-icu-syndrome/

Lori, what is your experience with sepsis? How are you doing now?

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How do you prevent getting Sepsis again?

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Profile picture for lori18245 @lori18245

I am a recent sepsis survivor and looking for a support group.

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Lori, like you, I'm a recent (March '25) survivor of severe sepsis. Not to take anything away from Mayo Clinic (I'm a fan!), I also belong to Sepsis Alliance https://www.sepsis.org/, which has many online zoom support meetings for peer sharing. In addition to general support, they have online groups for specific aspects, such as amputees. The topic that attracts me is "Invisible Disabilities After Sepsis." There are many other topics. Also, the Sepsis Alliance website has information resources. Wishing you well. - Sharon in Texas

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Profile picture for EW @ew62

Have you checked out Sepsis Alliance? They have a lot of good information about Sepsis and recovery. I had sepsis in 2022 which came from a perforated bowel during a hernia surgery. I became very ill and was in the hospital for 33 days, two weeks of it in the ICU. During my time in the ICU I also had pneumonia due to aspiration from being intubated. I was a mess. Recovery is a slow process, so give yourself time and grace. I feel like I am still in recovery as I fight fatigue and confusion from time to time.

If you have any questions, please feel free to reach out!

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@ew62 I got sepsis about 3 weeks after a spinal fusion with implementation (titanium rod & screws) it was a 5 hour operation and they almost lost me. I had been warned about getting a blood infection but not warned about becoming crazy. I had a fairly new boyfriend as a caregiver. Evidently I'd had a fever of 102° - 104° F for a couple of days but refused to go to the hospital. I finally went because the pain was very bad. From then on it gets fuzzy and it's a long story and kind of awful. I'm interested is talking or communicating with others who were partially delusional and feel the need to know what actually happened. I'm missing big pieces of my experience. I know it was traumatic and i want to know how i can help myself about this

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Profile picture for jann47 @jann47

@ew62 I got sepsis about 3 weeks after a spinal fusion with implementation (titanium rod & screws) it was a 5 hour operation and they almost lost me. I had been warned about getting a blood infection but not warned about becoming crazy. I had a fairly new boyfriend as a caregiver. Evidently I'd had a fever of 102° - 104° F for a couple of days but refused to go to the hospital. I finally went because the pain was very bad. From then on it gets fuzzy and it's a long story and kind of awful. I'm interested is talking or communicating with others who were partially delusional and feel the need to know what actually happened. I'm missing big pieces of my experience. I know it was traumatic and i want to know how i can help myself about this

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@jann47
Welcome to Mayo Clinic Connect.
WOW! You went through A LOT. As if spinal fusion was not enough to go through, the sepsis really got to you!
I have posted some links below for you to check out, two of them are from right above your post and I just want to be sure you saw them.
The second link is especially interesting, as it has a link to the Sepsis Alliance group:
Sepsis Alliance https://www.sepsis.org/
When you responded to @ew62, it was from a post several years ago, and I do not know if they will get back to you.
Have you had a chance to read the posts in this discussion?
There is also a recognized trauma from just being in ICU, called PICS (Post Intensive Care Syndrome) that is something else to help identify where some of your feelings are coming from.
https://connect.mayoclinic.org/comment/1278075/
https://connect.mayoclinic.org/comment/1378557/
https://connect.mayoclinic.org/comment/876807/
What you have gone through is something that not everyone can identify with, so finding others who have is a blessing, because you are not alone. And just knowing that can help you so much.

How are you feeling now?
Are you taking good care of you?
Eating well, resting when tired?
Is your support person (newish boyfriend) still in the picture?

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Profile picture for Debra, Volunteer Mentor @karukgirl

@jann47
Welcome to Mayo Clinic Connect.
WOW! You went through A LOT. As if spinal fusion was not enough to go through, the sepsis really got to you!
I have posted some links below for you to check out, two of them are from right above your post and I just want to be sure you saw them.
The second link is especially interesting, as it has a link to the Sepsis Alliance group:
Sepsis Alliance https://www.sepsis.org/
When you responded to @ew62, it was from a post several years ago, and I do not know if they will get back to you.
Have you had a chance to read the posts in this discussion?
There is also a recognized trauma from just being in ICU, called PICS (Post Intensive Care Syndrome) that is something else to help identify where some of your feelings are coming from.
https://connect.mayoclinic.org/comment/1278075/
https://connect.mayoclinic.org/comment/1378557/
https://connect.mayoclinic.org/comment/876807/
What you have gone through is something that not everyone can identify with, so finding others who have is a blessing, because you are not alone. And just knowing that can help you so much.

How are you feeling now?
Are you taking good care of you?
Eating well, resting when tired?
Is your support person (newish boyfriend) still in the picture?

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@karukgirl Thank you for your kind response. I am fine and healthy. The experience I went through was so awful that my life feels like a gift now. I find joy in physical labor because of the years I was in pain and couldn't do it! I'm pretty sure I was traumatized. My worst fear is losing my mind (which was part of sepsis) and I fear all hospitals. It seems incredible now, but I was never in the ICU. I remember it as kind of a storage area but i can't rely on all those memories.
The new boyfriend is still with me. We've both been married before and are happy as we are. We live together most of the time. Thanks for asking. I will definitely persue conversation with others that have gone through this. I am at an age (78) where I want to warn people and give them advice because I've seen a lot and people really ought to know about these things.

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Profile picture for lori18245 @lori18245

I am a recent sepsis survivor and looking for a support group.

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@lori18245
I am a sepsis survivor. The Sepsis Alliance is available for survivors and the whole family, too.
They offer support groups online and education for medical people, survivors, family members.
Just put Sepsis Alliance in your browser and you will be taken to their homepage.

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