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.

@oregongirl

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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I hope your husband is better now. It has not been easy that’s for sure! I’ve had rheumatoid arthritis since I was a child. I was diagnosed at 2 years old. I started having joint replacements when I was around 37. I had my left knee replaced in 2010 and it got infected inside. It was too risky to do a revision so they tried treating it. During the past 7 years my leg broke twice. I’m used to pushing through hard times but this I really had to reach back for. I’ve worked and taken care of myself my entire life. It’s only been a little over 3 months since I got home so I’m still figuring things out. The 8 months in hospitals was horrible at times but my family is truly amazing and helped get me through.

REPLY

my sister-in-law who would do anything for anybody in this world has been in and out of the hospital with this infection for over a year. She receives an antibotic each time but it seems to cause CDIF (sp.) in her stomach. Are there other antibiotics that can be used ? Is there anything else that can be done, she keeps this to herself because she does'nt want to be a burden on anyone

REPLY

Hi @larrywerner1 and welcome to Connect. You may have noticed I moved your post to this existing discussion on sepsis so that you can connect with others who have experience with it. Simply click VIEW & REPLY and you can find your post and read what others have said in the past.

I also wanted to share a link to this discussion on C. Diff so that you can gain support from them as well. https://connect.mayoclinic.org/discussion/c-diff-1/

I'd like to introduce you to fellow Connect members @oregongirl @suzmay and @triley916 as they may be able to offer you support.

What antibiotics has your sister been on so far?

REPLY
@larrywerner1

my sister-in-law who would do anything for anybody in this world has been in and out of the hospital with this infection for over a year. She receives an antibotic each time but it seems to cause CDIF (sp.) in her stomach. Are there other antibiotics that can be used ? Is there anything else that can be done, she keeps this to herself because she does'nt want to be a burden on anyone

Jump to this post

Welcome to our conversation @larrywerner1. It sounds like your sister-in-law has had a very difficult time recently. I am hoping you can connect with others on here who can provide you support and guidance. If you would like to share more, we are here to listen.

REPLY

I had sepsis in 2013. Prior to that, I looked like a model. I was always extremely health conscious, could run up to 3 ½ hours in one run. I never had an eating disorder in my life. I was 5’5 and weighed between 120-123 lbs. When I had Sepsis I was 47 years old. I believe I was misdiagnosed as having “adult onset asthma” (which I never had before the Sepsis... but had after) or allergies. I went to my doctor for about 4-5 months complaining of feeling like I had the flu. I had a cough that sounded like Bronchitis. I would wake at night gasping for air. I kept going back to the doctor, and each time I was treated as if this was all in my head. I was told that my lungs were clear, and even insisted on having an X-Ray prior to flying off to Chicago for a weekend for my disabled son’s 13th birthday. The radiologist said my lungs were clear. I COULDN'T BELIEVE IT! I felt as though I was living with horrible Bronchitis, and I probably was, all of those months, at the very least!!!
Upon my return, 2days later, I woke with a sudden high fever, and vomited in the car for two hours to the airport. The staff of the airline kept refusing to let me on the plane, but I managed to talk them into the 45 minute flight home. My spine felt like it was on fire, and I felt a floating feeling as if liquid was in the top of my head. I also had a migraine as if my head was going to explode. When I arrived home, I began to spit up blood, and my mother brought me into the hospital, where I nearly collapsed upon arrival. I was running at least a 106 temperature and my blood pressure was dangerously low. They rushed me into the ICU where I had about seven doctors surrounding my bed. I kept repeating to them, with what little speech I could offer, that, NO, I didn’t have aids or any infectious disease. Yes, I’d travelled out of the country twice within six months. They definitely concluded that I had Sever, complicated double lung bacterial pneumonia, as well as possible meningitis. I refused a spinal tap, so to this day, I still don’t know if I also had meningitis, however the CT scans and/or MRI suggested that my brain did not fit the pattern of having Meningitis. Next thing I knew I was told I was going into Septic Shock. The hospital began THREE antibiotics at once. Every time they would introduced antibiotics that were not working, they would try a bunch more. They found I was resistant to all but ONE! By God’s grace that last and strongest antibiotic started to take effect. In the meantime, without me knowing any of this, the ICU told my parents I had approximately three days to live.
Although I felt as if I was literally being held underwater, with only a half of an inch to breathe, I refused being put on life support. I only refused this because a very close brilliant doctor-friend of mine said to try to fight this with all the faith that I had. He told me not to go on life support because I would be too weak to survive if they took me off.
I was always a woman of strong faith. I had been through many traumas in my life already to prepare me for that day. As a single mom with two children and an abusive ex husband I mustered up the will to live (although I do remember one moment, begging my mother to let me die.) After being told about four times that I needed to go on life support, yet continuing to pray and suffer, I ended up being miraculously discharged after 3.5 weeks in the ICU. I had to learn how to do everything all over again, as if I were a toddler learning to stand, go to the bathroom without the aid of a bed pan, etc. I was on oxygen for approximately at least a month at home. My life didn’t really begin for seven months after that. Yes, I was able to leave my house to see fireworks 2 months out of the hospital, but I didn’t start feeling myself until about the 7 month mark.
I WAS HAPPY JUST TO BE ALIVE. At first, I lost weight while in the hospital. But EVER SINCE I RETURNED HOME I HAVE BEEN LIVING WITH EXHAUSTION AND WEIGHT GAIN. I have to tell you again. I am one, tough cookie. Believe me. As I stated earlier, I was all about nutrition, juicing fruits and veggies, and eating salads, lean fish or chicken. I ran every day and I was the picture of health and “now” I realize how beautiful I was. (I wish I knew it then.)
Every year after about 2014, I gained anywhere between 10-29 lbs. sometimes I would gain 10 lbs within 6 months. I couldn’t stop the weight gain! I went from a size 2 to a size 16, in the past 6 years!! Yes, I contribute exhaustion to being defeated in being able to exercise even enough to keep my weight stable. It was a fail-fail. Then I fell into depression, because my entire life was turning upside down because I could not even manage my house anymore, my bills, proper eating due to fatigue and laziness, etc. I have fought the good fight and I’m terrified that I will soon be so obese that I will in the next two months be over 200lbs!! I am currently 188 lbs! I have complained about my weight gain for years, and everyone just says to ficus on diet and exercise and minimizing stress. We know this already, but that is not working!!! The most I was able to lose was 23 lbs in practically a 10 month period. And I felt like I was going to have a heart attack doing it. Literally. There MUST BE A LINK TO SEPSIS AND WEIGHT GAIN! All my bloodwork looks good. Miraculously even my organs are testing that they are fine! It seems impossible, because after having Sepsis, I have developed chest pains and irregularities in heart beats. I have had 2 mini strokes. Yet, again, after extensive testing, my heart looks fine. But I FEEL like an 80 year old woman!!! I live in Buffalo, NY where medicine is not too fabulous. I have exhausted every avenue of doctors here to know what is going on. I already feel like a lost cause soon to be a chair bound or bed bound obese woman. If anyone out there knows what this weight gain is linked to, PLEASE PLEASE contact me! I have always been a fighter, but this is a monster that hasn’t been figured out yet. I know that I should just be grateful to be alive, but the after affects has honestly taken my life from me. I have seen a counselor for years, and also have been on antidepressants. I don’t want anyone out there who is reading this to think that their lives post-sepsis is doomsday. However we NEED to speak up and GET THE WORD OUT. I haven’t been able to work, or even get my life back. I am declining and there has to be medical help for this out there.

Sue from Buffalo

REPLY
@tickleme1

I had sepsis in 2013. Prior to that, I looked like a model. I was always extremely health conscious, could run up to 3 ½ hours in one run. I never had an eating disorder in my life. I was 5’5 and weighed between 120-123 lbs. When I had Sepsis I was 47 years old. I believe I was misdiagnosed as having “adult onset asthma” (which I never had before the Sepsis... but had after) or allergies. I went to my doctor for about 4-5 months complaining of feeling like I had the flu. I had a cough that sounded like Bronchitis. I would wake at night gasping for air. I kept going back to the doctor, and each time I was treated as if this was all in my head. I was told that my lungs were clear, and even insisted on having an X-Ray prior to flying off to Chicago for a weekend for my disabled son’s 13th birthday. The radiologist said my lungs were clear. I COULDN'T BELIEVE IT! I felt as though I was living with horrible Bronchitis, and I probably was, all of those months, at the very least!!!
Upon my return, 2days later, I woke with a sudden high fever, and vomited in the car for two hours to the airport. The staff of the airline kept refusing to let me on the plane, but I managed to talk them into the 45 minute flight home. My spine felt like it was on fire, and I felt a floating feeling as if liquid was in the top of my head. I also had a migraine as if my head was going to explode. When I arrived home, I began to spit up blood, and my mother brought me into the hospital, where I nearly collapsed upon arrival. I was running at least a 106 temperature and my blood pressure was dangerously low. They rushed me into the ICU where I had about seven doctors surrounding my bed. I kept repeating to them, with what little speech I could offer, that, NO, I didn’t have aids or any infectious disease. Yes, I’d travelled out of the country twice within six months. They definitely concluded that I had Sever, complicated double lung bacterial pneumonia, as well as possible meningitis. I refused a spinal tap, so to this day, I still don’t know if I also had meningitis, however the CT scans and/or MRI suggested that my brain did not fit the pattern of having Meningitis. Next thing I knew I was told I was going into Septic Shock. The hospital began THREE antibiotics at once. Every time they would introduced antibiotics that were not working, they would try a bunch more. They found I was resistant to all but ONE! By God’s grace that last and strongest antibiotic started to take effect. In the meantime, without me knowing any of this, the ICU told my parents I had approximately three days to live.
Although I felt as if I was literally being held underwater, with only a half of an inch to breathe, I refused being put on life support. I only refused this because a very close brilliant doctor-friend of mine said to try to fight this with all the faith that I had. He told me not to go on life support because I would be too weak to survive if they took me off.
I was always a woman of strong faith. I had been through many traumas in my life already to prepare me for that day. As a single mom with two children and an abusive ex husband I mustered up the will to live (although I do remember one moment, begging my mother to let me die.) After being told about four times that I needed to go on life support, yet continuing to pray and suffer, I ended up being miraculously discharged after 3.5 weeks in the ICU. I had to learn how to do everything all over again, as if I were a toddler learning to stand, go to the bathroom without the aid of a bed pan, etc. I was on oxygen for approximately at least a month at home. My life didn’t really begin for seven months after that. Yes, I was able to leave my house to see fireworks 2 months out of the hospital, but I didn’t start feeling myself until about the 7 month mark.
I WAS HAPPY JUST TO BE ALIVE. At first, I lost weight while in the hospital. But EVER SINCE I RETURNED HOME I HAVE BEEN LIVING WITH EXHAUSTION AND WEIGHT GAIN. I have to tell you again. I am one, tough cookie. Believe me. As I stated earlier, I was all about nutrition, juicing fruits and veggies, and eating salads, lean fish or chicken. I ran every day and I was the picture of health and “now” I realize how beautiful I was. (I wish I knew it then.)
Every year after about 2014, I gained anywhere between 10-29 lbs. sometimes I would gain 10 lbs within 6 months. I couldn’t stop the weight gain! I went from a size 2 to a size 16, in the past 6 years!! Yes, I contribute exhaustion to being defeated in being able to exercise even enough to keep my weight stable. It was a fail-fail. Then I fell into depression, because my entire life was turning upside down because I could not even manage my house anymore, my bills, proper eating due to fatigue and laziness, etc. I have fought the good fight and I’m terrified that I will soon be so obese that I will in the next two months be over 200lbs!! I am currently 188 lbs! I have complained about my weight gain for years, and everyone just says to ficus on diet and exercise and minimizing stress. We know this already, but that is not working!!! The most I was able to lose was 23 lbs in practically a 10 month period. And I felt like I was going to have a heart attack doing it. Literally. There MUST BE A LINK TO SEPSIS AND WEIGHT GAIN! All my bloodwork looks good. Miraculously even my organs are testing that they are fine! It seems impossible, because after having Sepsis, I have developed chest pains and irregularities in heart beats. I have had 2 mini strokes. Yet, again, after extensive testing, my heart looks fine. But I FEEL like an 80 year old woman!!! I live in Buffalo, NY where medicine is not too fabulous. I have exhausted every avenue of doctors here to know what is going on. I already feel like a lost cause soon to be a chair bound or bed bound obese woman. If anyone out there knows what this weight gain is linked to, PLEASE PLEASE contact me! I have always been a fighter, but this is a monster that hasn’t been figured out yet. I know that I should just be grateful to be alive, but the after affects has honestly taken my life from me. I have seen a counselor for years, and also have been on antidepressants. I don’t want anyone out there who is reading this to think that their lives post-sepsis is doomsday. However we NEED to speak up and GET THE WORD OUT. I haven’t been able to work, or even get my life back. I am declining and there has to be medical help for this out there.

Sue from Buffalo

Jump to this post

Hi Sue from Buffalo. Your situation sounds complex. As tough as it is, you have to tap into your fighter personality to get good medical care. Are you able to get a second opinion?

REPLY
@tickleme1

I had sepsis in 2013. Prior to that, I looked like a model. I was always extremely health conscious, could run up to 3 ½ hours in one run. I never had an eating disorder in my life. I was 5’5 and weighed between 120-123 lbs. When I had Sepsis I was 47 years old. I believe I was misdiagnosed as having “adult onset asthma” (which I never had before the Sepsis... but had after) or allergies. I went to my doctor for about 4-5 months complaining of feeling like I had the flu. I had a cough that sounded like Bronchitis. I would wake at night gasping for air. I kept going back to the doctor, and each time I was treated as if this was all in my head. I was told that my lungs were clear, and even insisted on having an X-Ray prior to flying off to Chicago for a weekend for my disabled son’s 13th birthday. The radiologist said my lungs were clear. I COULDN'T BELIEVE IT! I felt as though I was living with horrible Bronchitis, and I probably was, all of those months, at the very least!!!
Upon my return, 2days later, I woke with a sudden high fever, and vomited in the car for two hours to the airport. The staff of the airline kept refusing to let me on the plane, but I managed to talk them into the 45 minute flight home. My spine felt like it was on fire, and I felt a floating feeling as if liquid was in the top of my head. I also had a migraine as if my head was going to explode. When I arrived home, I began to spit up blood, and my mother brought me into the hospital, where I nearly collapsed upon arrival. I was running at least a 106 temperature and my blood pressure was dangerously low. They rushed me into the ICU where I had about seven doctors surrounding my bed. I kept repeating to them, with what little speech I could offer, that, NO, I didn’t have aids or any infectious disease. Yes, I’d travelled out of the country twice within six months. They definitely concluded that I had Sever, complicated double lung bacterial pneumonia, as well as possible meningitis. I refused a spinal tap, so to this day, I still don’t know if I also had meningitis, however the CT scans and/or MRI suggested that my brain did not fit the pattern of having Meningitis. Next thing I knew I was told I was going into Septic Shock. The hospital began THREE antibiotics at once. Every time they would introduced antibiotics that were not working, they would try a bunch more. They found I was resistant to all but ONE! By God’s grace that last and strongest antibiotic started to take effect. In the meantime, without me knowing any of this, the ICU told my parents I had approximately three days to live.
Although I felt as if I was literally being held underwater, with only a half of an inch to breathe, I refused being put on life support. I only refused this because a very close brilliant doctor-friend of mine said to try to fight this with all the faith that I had. He told me not to go on life support because I would be too weak to survive if they took me off.
I was always a woman of strong faith. I had been through many traumas in my life already to prepare me for that day. As a single mom with two children and an abusive ex husband I mustered up the will to live (although I do remember one moment, begging my mother to let me die.) After being told about four times that I needed to go on life support, yet continuing to pray and suffer, I ended up being miraculously discharged after 3.5 weeks in the ICU. I had to learn how to do everything all over again, as if I were a toddler learning to stand, go to the bathroom without the aid of a bed pan, etc. I was on oxygen for approximately at least a month at home. My life didn’t really begin for seven months after that. Yes, I was able to leave my house to see fireworks 2 months out of the hospital, but I didn’t start feeling myself until about the 7 month mark.
I WAS HAPPY JUST TO BE ALIVE. At first, I lost weight while in the hospital. But EVER SINCE I RETURNED HOME I HAVE BEEN LIVING WITH EXHAUSTION AND WEIGHT GAIN. I have to tell you again. I am one, tough cookie. Believe me. As I stated earlier, I was all about nutrition, juicing fruits and veggies, and eating salads, lean fish or chicken. I ran every day and I was the picture of health and “now” I realize how beautiful I was. (I wish I knew it then.)
Every year after about 2014, I gained anywhere between 10-29 lbs. sometimes I would gain 10 lbs within 6 months. I couldn’t stop the weight gain! I went from a size 2 to a size 16, in the past 6 years!! Yes, I contribute exhaustion to being defeated in being able to exercise even enough to keep my weight stable. It was a fail-fail. Then I fell into depression, because my entire life was turning upside down because I could not even manage my house anymore, my bills, proper eating due to fatigue and laziness, etc. I have fought the good fight and I’m terrified that I will soon be so obese that I will in the next two months be over 200lbs!! I am currently 188 lbs! I have complained about my weight gain for years, and everyone just says to ficus on diet and exercise and minimizing stress. We know this already, but that is not working!!! The most I was able to lose was 23 lbs in practically a 10 month period. And I felt like I was going to have a heart attack doing it. Literally. There MUST BE A LINK TO SEPSIS AND WEIGHT GAIN! All my bloodwork looks good. Miraculously even my organs are testing that they are fine! It seems impossible, because after having Sepsis, I have developed chest pains and irregularities in heart beats. I have had 2 mini strokes. Yet, again, after extensive testing, my heart looks fine. But I FEEL like an 80 year old woman!!! I live in Buffalo, NY where medicine is not too fabulous. I have exhausted every avenue of doctors here to know what is going on. I already feel like a lost cause soon to be a chair bound or bed bound obese woman. If anyone out there knows what this weight gain is linked to, PLEASE PLEASE contact me! I have always been a fighter, but this is a monster that hasn’t been figured out yet. I know that I should just be grateful to be alive, but the after affects has honestly taken my life from me. I have seen a counselor for years, and also have been on antidepressants. I don’t want anyone out there who is reading this to think that their lives post-sepsis is doomsday. However we NEED to speak up and GET THE WORD OUT. I haven’t been able to work, or even get my life back. I am declining and there has to be medical help for this out there.

Sue from Buffalo

Jump to this post

The weight gain is why I hopped into this group. The day before I got sepsis- I walked 12000 steps - used my Nordic Poles and was at my perfect weight. I’m only 5’ and have always worn P8 or P6. I’ve gained so much weight ( log all of food and eat 1000-1100 calories/day). I am too scared to weigh myself- but I had to get 14P jeans and I don’t want to leave the house because of how I look. I’m confused by the weight gain and embarrassed at the same time. My sepsis was 18 months ago.

REPLY

I'm wondering if you are not retaining fluid. If you have access to a mini trampoline try just bouncing on it for 15-20 minutes a day. It is a great way to help drain your lymphatic system. Keep your feet on the fabric and just bounce. You will have to work your way up to 20 minutes. If this is no problem, doing it a couple times a day would be great. Don't cut back on your drinking fluids. Just a suggestion.

REPLY
@kateia

I'm wondering if you are not retaining fluid. If you have access to a mini trampoline try just bouncing on it for 15-20 minutes a day. It is a great way to help drain your lymphatic system. Keep your feet on the fabric and just bounce. You will have to work your way up to 20 minutes. If this is no problem, doing it a couple times a day would be great. Don't cut back on your drinking fluids. Just a suggestion.

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Thank you for the suggestion... will try!

REPLY
@carolmiletti

The weight gain is why I hopped into this group. The day before I got sepsis- I walked 12000 steps - used my Nordic Poles and was at my perfect weight. I’m only 5’ and have always worn P8 or P6. I’ve gained so much weight ( log all of food and eat 1000-1100 calories/day). I am too scared to weigh myself- but I had to get 14P jeans and I don’t want to leave the house because of how I look. I’m confused by the weight gain and embarrassed at the same time. My sepsis was 18 months ago.

Jump to this post

Until Sepsis, I was always at my perfect weight as well! Then by body just derailed!! I was 120 lbs. and I am now 190 lbs. wearing 1X! I avoid leaving the house and certain events because of this as well. Diet and exercise has been a losing battle. I truly believe there is a correlation to post sepsis and obesity. I hope to hear from a doctor in response to my post. I feel as if I lost my life at 48. I’m now 53.

REPLY
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