Sepsis: What's your experience recovering from sepsis?

Posted by sepsissister @sepsissister, Dec 12, 2011

Is anyone out there living with sepsis? My sister was admitted to the hospital on Nov. 1st with severe abdominal pain. Test found that she had a mass blocking her intestines. I will try to keep this short...she had surgery to remove part of her colon and large & small intestine and the tumor that originated in her appendix, (appendiceal cancer is rare) things were fine for a few days, until the sutures in the intestines let loose, the resulting bile leaking into the stomach cavity caused her to be septic. A colostomy was performed, and she survived the septic shock. She is now home, and trying to recover from the sepsis. She is very frustrated by the lack of strength and energy that she is experiencing. We know so little about this. We do know that it is extremely serious. Is there anyone out there who can share there experience with sepsis?

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

My husband suffered from Sepsis after surgery of the heart. Our heart doctor took one look at my husband and was furious. He could not believe the surgeon sent him home. It took several months. The problem with Sepsis is there was only one strong antibiotic. We prayed each time that the antibiotic was still working. That was a few years back. Maybe by now there is a better treatment. He passed away but not from the infection. It went away and cleared out of his body. They had taken him into surgery to clean him out again. The doctor called me and thought Oh no, he died. I got up there to the waiting room and the doctor said, they could not find anything and closed him up. A Miracle. Believe me I have seen a few. Trust God in ALL things.

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Wow, another thing for me to do research on. I suffered from septic shock/sepsis in early April 2016. I was on the floor of my apartment going in and out of hallucinations. After a welfare check conducted by the fire department at the request of my Mother and Brother I was strechered out and brought to the hospital. I was so bad that I was told if I had not been found when I was that I would be dead. Multiple organs shutting down, the works. all stemming from a wound on the bottom of my foot that I did not care for properly. One third of my left leg was amputated and the result of all the damage from the sepsis had me in ICU and the main hospital for 3 months, then a SNIF and a health/physical rehab facility until November. So all in all 8 months in the hospital. Long story short, I was attributing my being easily exhausted to having to maneuver my way through a house that is in no way ADA compliant. It is just the only place I can live for now. I can become exhausted easily. As for cognitive effects, I do not believe I have been slowed but I do find myself contemplating life and what has become of mine. I spend time thinking quietly, usually trying to figure out ways to make it easier for me to get around and do everyday tasks. After doing a little of the research leading up to this point, I realize that for how badly I was infected and overcome with sepsis, I should be dead. I am lucky to be alive and intend on making the most of the second chance. Finding groups like this where actual experience can be deseminated and compared is very helpful.

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Hello @gatorpaul and @kathrivnak1

I would like to welcome you both to Mayo Connect. I so appreciate your comments in our discussion group about Sepsis. We all learn from each at Connect and I appreciate that you both have shared your experiences!

So how are you feeling now? Do you currently take any antibiotics?

Teresa

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@oregongirl

My husband suffered from Sepsis after surgery of the heart. Our heart doctor took one look at my husband and was furious. He could not believe the surgeon sent him home. It took several months. The problem with Sepsis is there was only one strong antibiotic. We prayed each time that the antibiotic was still working. That was a few years back. Maybe by now there is a better treatment. He passed away but not from the infection. It went away and cleared out of his body. They had taken him into surgery to clean him out again. The doctor called me and thought Oh no, he died. I got up there to the waiting room and the doctor said, they could not find anything and closed him up. A Miracle. Believe me I have seen a few. Trust God in ALL things.

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Hello@oregongirl

I am so sorry to hear of your husband's death but I do appreciate your sharing his experience with Sepsis.

Is there anything else you would like to add regarding his experience with Sepsis that might help educate our Members on this important health disorder?

I look forward to hearing from you again.

Teresa

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@kathrivnak1

I am one year post septic shock and have found the Sepsis Alliance to be a great source of information and others who have gone through the same thing. There's also something called post sepsis syndrome a lot of us seem to share. I know I still don't feel like myself I don't know if I ever will again.

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Hello, @kathrivnak1 and @gatorpaul -- I wanted to add my welcome to Mayo Clinic Connect. You've both had some very challenging experiences with sepsis.

I'm glad this group and comparing experiences is helpful, @gatorpaul. Thanks for sharing some of your story. Glad you made it through your whole ordeal.

@kathrivnak1-- thanks for the Sepsis Alliance resource. I'd be interested in hearing more about your post sepsis syndrome.

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@tbaxter33

About 10 years ago, I had an onset of fever due to an infection in my foot (I was 50 y/o). Within a few hours, I was in full septic shock. Spent about a week in ICU then a week in regular room before going home. Had "cardiac event" due to low blood profusion, kidneys stopped working, etc. Had several dialysis sessions. Wife was being told to prepare for the worse for several days. I stayed home a week after release from the hospital, then went back to work. I can tell you that I am not the same person today. I tire so easily it is nuts -- and so frustrating. I have talked to doctors about this and have been "blown off" 100% of the time. I do not think they believe me when I tell them how badly I am feeling. I continue to drag myself in to work every day. I used to get to the office about 6:00 AM and work until 6:30 or 7:00 PM. Now, it is all I can do to get in by 8:00 AM and I am out as soon as possible -- totally wiped out -- at the end of the day. I have no stamina at all. The reduction of activity has contributed to weight gain, which I hate. I do not mean to be discouraging. Your sister will feel better, but I suspect she will never feel as good as before. Remember, I have not found one single member of the medical community who will talk about this. I continually get "lose weight and exercise" as the answer. I know I need to do both those things, but they do not seem to understand that I am totally wiped out when I am not at work. Perhaps your sister's journey will be brighter. I would love to know if others have had similar experiences, or if I am an exception.

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Hi Justin. My deepest apologies for not responding sooner. I see that it has been many months since your question. I guess I just did not see it. Yes, I did connect with a group here in Nashville who follows post ICU patients. Sadly, I spent an afternoon going through their clinic expecting some feedback/recommendations at the end, but there were none. I have pretty much given up on having someone listen. I suppose I am just too much of a complainer. I do have various medical specialties looking after the post sepsis problems (ie, some kidney impairement, blood pressure instability, etc), so I feel good about that. I guess so much time has elapsed since my episode with sepsis (actually 2 hospitalizations, only one lengthy ICU stay) that everyone thinks all is okay. Maybe the fatigue, lack of energy, and total crash at the end of each work day is normal. One interesting experience I will point out for those who are going through it or who have been through it. When they finally realized I was spetic, I remember a small army of nurses jumping into action. One was inserting a large guage needle for another IV line in the other arm, one was raising the feet and lowering the head of the bed, one was checking BP, one very nicely said "honey, I have to do a foley" (at that moment, I did not know what a "foley" was. I quickly leared), and I was being wisked off to ICU. In all that flurry, I never felt like I was in immediate danger. I kept telling them to calm down, it would be okay. They said my BP had crashed and I remember telling them not to worry, I have high BP anyway, so it will come back. Of course, i really was feeling horrible and it only got worse. Once in ICU, they came running to insert a PICC line. You know, I really did not realize the seriousness of what was going on until, after things calmed somewhere around midnight, the hospital chaplain came in and asked me if there was anything I needed to talk about at that tiem. When that woman left, it hit me. I did not know that the doctors were telling my wife that I may not survive the night and the next few days would be critical. She spent several days being told daily that she needed to prepare the kids. Yes, it was a traumatic experience once I realized what was truly happening. In the first moments, I had no idea my kidneys would fail and I would go through several sessions of dialysis over the coming weeks. I did not know that my cardiac enzymes had shot sky high that night and they were concerned about heart damage. So, I guess those of us who have undergone such things should not feel badly that we feel bad chronically. Unfortunately, I do not believe that the medical community understands, and they do not want to hear it.

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@oregongirl

My husband suffered from Sepsis after surgery of the heart. Our heart doctor took one look at my husband and was furious. He could not believe the surgeon sent him home. It took several months. The problem with Sepsis is there was only one strong antibiotic. We prayed each time that the antibiotic was still working. That was a few years back. Maybe by now there is a better treatment. He passed away but not from the infection. It went away and cleared out of his body. They had taken him into surgery to clean him out again. The doctor called me and thought Oh no, he died. I got up there to the waiting room and the doctor said, they could not find anything and closed him up. A Miracle. Believe me I have seen a few. Trust God in ALL things.

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My mother passed away from Sepsis which was caused by a tumor that ruptured her colon, as a result of her metastasized endometriosis cancer. I think medicine has come a long way in the past 16 years.

Years ago, someone who became Septic didn't have a fighting chance. When your whole body has an infection, i can see it taking a several months to get back to normal. My Mom was one very sick lady, fighting several issues at once. She didn't stand a fighting chance.

With today's medications, people are super lucky. Those people that are recovering from this illness, I am curious, have Dr's recommended a particular diet to help your body heal?

Like after my colon cancer surgery they were recommending a high protein diet to heal.

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@tbaxter33

About 10 years ago, I had an onset of fever due to an infection in my foot (I was 50 y/o). Within a few hours, I was in full septic shock. Spent about a week in ICU then a week in regular room before going home. Had "cardiac event" due to low blood profusion, kidneys stopped working, etc. Had several dialysis sessions. Wife was being told to prepare for the worse for several days. I stayed home a week after release from the hospital, then went back to work. I can tell you that I am not the same person today. I tire so easily it is nuts -- and so frustrating. I have talked to doctors about this and have been "blown off" 100% of the time. I do not think they believe me when I tell them how badly I am feeling. I continue to drag myself in to work every day. I used to get to the office about 6:00 AM and work until 6:30 or 7:00 PM. Now, it is all I can do to get in by 8:00 AM and I am out as soon as possible -- totally wiped out -- at the end of the day. I have no stamina at all. The reduction of activity has contributed to weight gain, which I hate. I do not mean to be discouraging. Your sister will feel better, but I suspect she will never feel as good as before. Remember, I have not found one single member of the medical community who will talk about this. I continually get "lose weight and exercise" as the answer. I know I need to do both those things, but they do not seem to understand that I am totally wiped out when I am not at work. Perhaps your sister's journey will be brighter. I would love to know if others have had similar experiences, or if I am an exception.

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@tbaxter33 thank you for sharing your experiences. i personally love my pcp (and he loves me) for listening to me and supporting or refuting my understanding. for example, when people started telling me I might have chronic fatigue he explained that chronic fatigue is a description but not a diagnosis, and I certainly did have it and there were multiple reasons explaining that fatigue. If only more people had such good discussions with their physicians.

You may be right about your situation and there is nothing more the doctors can do at this time. I encourage you to keep asking and searching. New information and solutions are being discovered all the time. Best to you.

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My husband developed sepsis following a prostate biopsy. The evening after the biopsy he suddenly developed terrific shaking, fever, chills, and shortness of breath. I had just stepped out of the shower, dripping wet, called 911

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@gatorpaul

Wow, another thing for me to do research on. I suffered from septic shock/sepsis in early April 2016. I was on the floor of my apartment going in and out of hallucinations. After a welfare check conducted by the fire department at the request of my Mother and Brother I was strechered out and brought to the hospital. I was so bad that I was told if I had not been found when I was that I would be dead. Multiple organs shutting down, the works. all stemming from a wound on the bottom of my foot that I did not care for properly. One third of my left leg was amputated and the result of all the damage from the sepsis had me in ICU and the main hospital for 3 months, then a SNIF and a health/physical rehab facility until November. So all in all 8 months in the hospital. Long story short, I was attributing my being easily exhausted to having to maneuver my way through a house that is in no way ADA compliant. It is just the only place I can live for now. I can become exhausted easily. As for cognitive effects, I do not believe I have been slowed but I do find myself contemplating life and what has become of mine. I spend time thinking quietly, usually trying to figure out ways to make it easier for me to get around and do everyday tasks. After doing a little of the research leading up to this point, I realize that for how badly I was infected and overcome with sepsis, I should be dead. I am lucky to be alive and intend on making the most of the second chance. Finding groups like this where actual experience can be deseminated and compared is very helpful.

Jump to this post

@gatorpaul Welcome and thank you for sharing. I am glad you survived your ordeal and sorry you lost part of an essential limb in the process. I am most interested in your comment regarding making your house more usable. If you would like to discuss this further, please respond with more information about the things that make your house difficult for you. I have worked with several houses for several people (including myself) in efforts to keep them in their homes with minimal changes. Good luck to you.

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