1. < Intensive Care (ICU)

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?

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suzmay | @suzmay | May 7, 2018
In reply to @tbaxter33 "About 10 years ago, I had an onset of fever due to an infection in my..." + (show)
@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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I found so much help through the PULSE clinic at University of Michigan Medical Center

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suzmay | @suzmay | May 7, 2018
In reply to @hopeful33250 "@suzmay How wonderful. I live in SE Michigan and go to U of M for certain..." + (show)
@hopeful33250

@suzmay

How wonderful. I live in SE Michigan and go to U of M for certain matters as well. Thank you also for recommending the Sepsis Alliance website. That is good information for our members.

I hope your appointment at the Pulse Clinic goes well and gives you some more information regarding your recovery and return to work.

I look forward to hearing from you again.

Teresa

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I have been in PT which is helping a lot. They recommended SSRI antidepressants which I finally decided to take starting yesterday. I have been very hesitant to start meds for the change in mentation but am finally realizing that my family needs me (I need) to be strong as possible and these can add support for this difficult time. I also see a counselor regularly which is tremendous helpful as well.

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Wisgrama | @wisgrama | May 7, 2018

I had sepsis from a perforated colon after a colonoscopy. I refused to have surgery every day she came in and mentioned it. I had a tube in stomach with a drainage bag. I had 2 high powered antibiotics running intravenously 24 hrs a day for 7 days. Had cat scans to monitor the infection. Was sent home with the stomach tube which was removed a couple weeks later. Was sent home with 2 oral antibiotics. It took 4to 6 weeks to get well and told me I could still have to have surgery if it perforated again. So far I have been fine and that was 4years ago.

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jenerprise | @jenerprise | Jun 6, 2018
In reply to @hopeful33250 "@suzmay How wonderful. I live in SE Michigan and go to U of M for certain..." + (show)
@hopeful33250

@suzmay

How wonderful. I live in SE Michigan and go to U of M for certain matters as well. Thank you also for recommending the Sepsis Alliance website. That is good information for our members.

I hope your appointment at the Pulse Clinic goes well and gives you some more information regarding your recovery and return to work.

I look forward to hearing from you again.

Teresa

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Mayo Clinic discharged me with sepsis after my da Vinci robotic surgery last summer. People must advocate for themselves and not trust the doctors. I spent the rest of the summer in icu with a colostomy bag too. There are serious effects like constant fatigue weakness pain lesser cognitive skills. @unplugthe robot

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jenerprise | @jenerprise | Jun 10, 2018
In reply to @hopeful33250 "@suzmay How wonderful. I live in SE Michigan and go to U of M for certain..." + (show)
@hopeful33250

@suzmay

How wonderful. I live in SE Michigan and go to U of M for certain matters as well. Thank you also for recommending the Sepsis Alliance website. That is good information for our members.

I hope your appointment at the Pulse Clinic goes well and gives you some more information regarding your recovery and return to work.

I look forward to hearing from you again.

Teresa

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Just curious, has anyone suffered sepsis after having a da Vinci robotic assisted surgery?

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Texas Freedom | @oregongirl | Jun 10, 2018
In reply to @oregongirl "My husband suffered from Sepsis after surgery of the heart. Our heart doctor took one look..." + (show)
@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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Hopeful...make sure the nurses was their hand as well as doctors. And think about this one, cleaning person going too to room. As it turned out 4 rooms with warning notices on their door. This is a well known hospital.. the head nurse and their hospil head nurse, refused to talk to me about it. We always got questionable care from then on. Nurses in ER were afraid of him. Times have changed thank God.

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Texas Freedom | @oregongirl | Jun 10, 2018
In reply to @gatorpaul "Wow, another thing for me to do research on. I suffered from septic shock/sepsis in early..." + (show)
@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.

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Oh wow gator. So sorry, but I know the suffering and hallucinations. My husband thought he was aboard ship and then he was driving a car.
I just hated watching him near death. I took him home. I cared for him. I wavobsessive with cleniness. I learned how to clean his feeding. I refused to let. Him go. He lived. Praise God.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 11, 2018
In reply to @hopeful33250 "@suzmay How wonderful. I live in SE Michigan and go to U of M for certain..." + (show)
@hopeful33250

@suzmay

How wonderful. I live in SE Michigan and go to U of M for certain matters as well. Thank you also for recommending the Sepsis Alliance website. That is good information for our members.

I hope your appointment at the Pulse Clinic goes well and gives you some more information regarding your recovery and return to work.

I look forward to hearing from you again.

Teresa

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Hi @jenerprise, welcome to Connect. As you read from other members, dealing with the serious side effects of sepsis really affect one's quality of life. What lifestyle changes have you had to make to deal with the fatigue, weakness and cognitive issues? Is the colostomy bag permanent or temporary for you?

REPLY
triley916 | @triley916 | Nov 2, 2018
In reply to @gatorpaul "Wow, another thing for me to do research on. I suffered from septic shock/sepsis in early..." + (show)
@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

Hi, I know you posted about 6 months ago but I’m just now finding this site. My story is very similar. I fought an infected knee replacement for 7 years. On November 11,2017 the infection won. I was taken to my local hospital ER that day having no idea I would not see my house again until July 10,2018! I was told if I was not Life Flighted to another hospital I would die. I ended up having 15 surgeries in a short time span. My left leg was amputated including the hip. I was in a coma type state for about 2 weeks during the process. I ended up with chest tubes and a trach. I was in various hospitals for 5 months then SNF’s for 3. I couldn’t sit up on my own or move my right leg hardly at all in April when I got to the 1st rehab. I was afraid my life would never be the same or even be worth living. I was sent home in June but was not ready so had to go back to rehab after a 4 day stay at home. My home was built in 1900 so hardly ADA ready. When I went to the hospital I was 115 lbs. I am now about 125 missing a leg. I know it doesn’t sound like an issue but it really is. Early on I was so blown up with fluids I looked like the Pillsbury Doughboy! My face and neck look nothing like the old me. The weight gain and my appearance are one of the hardest things I’m dealing with right now. Along with being somewhat dependent on others. I am extremely lucky to be alive and honestly should not have survived. However I did survive and am going to make the most out of the second chance I’ve been given. I got a prosthetic leg yesterday and I’m selling my car and getting a van. I’ve even stared working some from home again. I know this is long but I hope it can help others to realize they can overcome obstacles after surviving sepsis.

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1 reply
Texas Freedom | @oregongirl | Nov 3, 2018
In reply to @triley916 "Hi, I know you posted about 6 months ago but I’m just now finding this site...." + (show)
@triley916

Hi, I know you posted about 6 months ago but I’m just now finding this site. My story is very similar. I fought an infected knee replacement for 7 years. On November 11,2017 the infection won. I was taken to my local hospital ER that day having no idea I would not see my house again until July 10,2018! I was told if I was not Life Flighted to another hospital I would die. I ended up having 15 surgeries in a short time span. My left leg was amputated including the hip. I was in a coma type state for about 2 weeks during the process. I ended up with chest tubes and a trach. I was in various hospitals for 5 months then SNF’s for 3. I couldn’t sit up on my own or move my right leg hardly at all in April when I got to the 1st rehab. I was afraid my life would never be the same or even be worth living. I was sent home in June but was not ready so had to go back to rehab after a 4 day stay at home. My home was built in 1900 so hardly ADA ready. When I went to the hospital I was 115 lbs. I am now about 125 missing a leg. I know it doesn’t sound like an issue but it really is. Early on I was so blown up with fluids I looked like the Pillsbury Doughboy! My face and neck look nothing like the old me. The weight gain and my appearance are one of the hardest things I’m dealing with right now. Along with being somewhat dependent on others. I am extremely lucky to be alive and honestly should not have survived. However I did survive and am going to make the most out of the second chance I’ve been given. I got a prosthetic leg yesterday and I’m selling my car and getting a van. I’ve even stared working some from home again. I know this is long but I hope it can help others to realize they can overcome obstacles after surviving sepsis.

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How did you ever go thru this? My husband had a colonoscopy done by a non doctor at Kauser. Two yrs later infection and tares were somewhat healed. What caused your infection? Was it. MERSA? I feel so bad for you. Another time my husband got MERSA in his open chest surgery. Dr had a cold. I was nervous about surgery.

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