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?

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

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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Hello @tbaxter33. Thank you for sharing your story. It sounds quite frustrating, and reminds me of some of the posts I have read in another discussion. I think it may be worthwhile to check another discussion regarding post ICU syndrome, where another member talked about her experience with sepsis. You can find that here, https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/.

@tbaxter33, you mention that you have not been able get a medical professional to listen to your concerns, have you thought about a second opinion, or have you already sought that out?

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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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I suffered severe sepsis in January of this year. I had pleural effusions, third spacing and low blood pressure but was able to avoid ICU. I had other organ involvement as well; the bacteria moved into my spine. In all, I am extremely fortunate to have little physical problems other than weakness and loss of stamina. I am not back to work yet, but am getting bugged about that. As a nurse who works 12-hour night shifts, I am not there yet I know, but yes I find it hard for even MDs to understand this difficulty in recovery. Also, the side effects which I hate to admit are cognitive, such as, just slowed thought processes, anxiety with things that never bothered me, nightmares. I am considering a second opinion prior to going back to work, which I am really
Nervous to do. What do you think?

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Hello, @suzmay, and welcome to Mayo Clinic Connect. Very sorry to hear about your severe sepsis.

Sounds like you are very aware of what is going on with your body, with the ongoing weakness, loss of stamina and some cognitive effects.

I'd like to introduce you to some other members who have talked about sepsis and may have some thoughts for you on getting a second opinion before going back to work, like @renarikiw, @duvie, @kateia, @lobeliablue, @rosemarya, and @muriel66.

How are you coping right now with the nightmares, anxiety and the slowed thought processes? Have you found anything that helps with these?

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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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@suzmay,
I agree with the idea of a second opinion. You are the one suffering these episodes, the doctors don't understand it. What do you have to lose? What do you have to gain?

Here is something to think about- Advice on a Second Opinion –
. https://connect.mayoclinic.org/champions/advice-on-second-opinions/?utm_campaign=search

Rosemary

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@lisalucier

Hello, @suzmay, and welcome to Mayo Clinic Connect. Very sorry to hear about your severe sepsis.

Sounds like you are very aware of what is going on with your body, with the ongoing weakness, loss of stamina and some cognitive effects.

I'd like to introduce you to some other members who have talked about sepsis and may have some thoughts for you on getting a second opinion before going back to work, like @renarikiw, @duvie, @kateia, @lobeliablue, @rosemarya, and @muriel66.

How are you coping right now with the nightmares, anxiety and the slowed thought processes? Have you found anything that helps with these?

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Yes, things that help are 1) rest, 2) gentle exercise, like walking, yoga. 3) prayer, meditation, psalms…4) reading something light hearted like a good book.
News is a bit too heavy; I can only handle it in very small doses; 5) good supportive people: like my husband, my counselor, my physical therapist, and last but not least a lot of compassion for what havoc this illness has wreaked in my body and life

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Hello @suzmay

I certainly feel for your situation. I can't imagine how difficult it would be to go back to work after such a serious infection and after being left with these kinds of symptoms. Since you had some spinal involvement have you considered an exam by a neurologist? They would check out the possibility of any neurological impairment as well as any cognitive impairment from this serious infection. A neuropsych evaluation might help provide and and your employer with some facts about the "cognitive effects" that might help your case regarding a return to work which might be too soon for you. This type of evaluation might also give you some concrete evidence if you need to apply for disability benefits.

Just something to consider. I look forward to hearing from you again.

Teresa

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I have an appointment with the Pulse Clinic at University of Michigan, which specializes in post sepsis and post ICU care, so I am hopeful they can direct my after-care more so than what I have received thus far. I have the same experience that few caregivers are familiar with the long term effects from sepsis. I am hopeful to have my work start date pushed back. I want to refer others a to the Sepsis Alliance website which is also very helpful. Thank you for your input and care

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@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 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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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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