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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.

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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)
Profile picture for Teresa, Volunteer Mentor @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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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)
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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 | Apr 29, 2018
In reply to @hopeful33250 "@suzmay How wonderful. I live in SE Michigan and go to U of M for certain..." + (show)
Profile picture for Teresa, Volunteer Mentor @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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Thank you for your personal story and experience with this med. I am still unsure about starting it, as my symptoms improve if I can just have more relaxing time.
I am hoping I can heal with just a lot of rest, gentle exercise, nutrition. I will
Give it another week before I start the med

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grandmaR | @grandmar | Apr 29, 2018
In reply to @hopeful33250 "@suzmay How wonderful. I live in SE Michigan and go to U of M for certain..." + (show)
Profile picture for Teresa, Volunteer Mentor @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!
The spelling is close "VENLAFAXINE". I know it as EFFEXOR. I've been taking it for year for anxiety, although it is also used for depression. I find it a great help!!! Like so many other meds of its kind, it takes a while for it to work (up to 2 months) and I had a dull headache for a while (which went away).

Several years back, my PCP tried to take me off Effexor because I was doing so well. I was taking 2 pills at a time (can't remember the dosage). I was getting off it slowly. After a very brief time, with one pill cut out, I started having severe anxiety attacks. I attempted to go back on the full dosage I was taking, but it didn't work.

My therapist sent me to a psychiatrist to regulate my meds. It was at that time that I was told that once you start to lower your dose, you can't just build it up again. She took me off the drug and attempt a couple of others. After about 3 or 4 months, I asked her to put me back on them. By then, she said we could try. I've been on it ever since but it never worked quite the same way.

It is many years later and due to 'life', I've had to up the dosage. I am now at the top and I worry what will happen if it stops working. I find it works great for anxiety, but not for depression. I lost 90 pounds over the last 1 1/2 years due to weight loss surgery. Because of the surgery, my body does not absorb the way most people do. I went from extended release to regular release. That does make a difference. I have to make sure I don't have burst of feelings from the meds and that I stay on an even level.

This is probably more than you wanted to know, but I hope it helps.

Ronnie (GRANDMAr)

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suzmay | @suzmay | Apr 29, 2018
In reply to @gatorpaul "Wow, another thing for me to do research on. I suffered from septic shock/sepsis in early..." + (show)
Profile picture for gatorpaul @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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Wow; I’m sorry you lost your leg, but I’m happy for your life and thank you for sharing. I needed to be reminded that I too intend on making the most of this 2nd chance at life. I have just been feeling so tired, so frustrated because I can’t do much, grieving old person that I was...

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suzmay | @suzmay | Apr 29, 2018
In reply to @hopeful33250 "@suzmay How wonderful. I live in SE Michigan and go to U of M for certain..." + (show)
Profile picture for Teresa, Volunteer Mentor @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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Thank you so much. It is venfalaxine I think is the spelling. Are you familiar with it? I haven’t started them yet. Am hesitant but probably should

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Moderator
Lisa Lucier, Moderator | @lisalucier | Apr 26, 2018
In reply to @hopeful33250 "@suzmay How wonderful. I live in SE Michigan and go to U of M for certain..." + (show)
Profile picture for Teresa, Volunteer Mentor @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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That really is great news, @suzmay, that most of all, you were heard and validated. So glad to hear that, and that the doctor supports your getting better yet before going back to work.

What antidepressant is the doctor looking at for you?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 26, 2018
In reply to @hopeful33250 "@suzmay How wonderful. I live in SE Michigan and go to U of M for certain..." + (show)
Profile picture for Teresa, Volunteer Mentor @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

Jump to this post

@suzmay Yes, I'm sure that the road to recovery will take a while. Give yourself all the time you need.

Did your doctor recommend any particular physical or occupational therapies that might help?

Teresa

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suzmay | @suzmay | Apr 25, 2018
In reply to @hopeful33250 "@suzmay How wonderful. I live in SE Michigan and go to U of M for certain..." + (show)
Profile picture for Teresa, Volunteer Mentor @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

Jump to this post

Thank you Teresa. They emphasized the need for rest, and self-care. And when I stop pushing myself so much (I have always been very active), I realize how exhausted I am still. Truly this is a long recovery

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 25, 2018
In reply to @hopeful33250 "@suzmay How wonderful. I live in SE Michigan and go to U of M for certain..." + (show)
Profile picture for Teresa, Volunteer Mentor @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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Hello @suzmay

I so appreciate you letting us know how your appointment went at the Pulse Clinic. That is just wonderful news! I am glad that you can take the worry about going back to work off your plate for now. It is so good to be understood, isn't it?

Keep in touch. I look forward to hearing from you again and hearing about your progress.

Teresa

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