Any other Sepsis Survivors?

[ReSomething]

I can’t recall half of my illness or hospitalization. I was at work and greyed out January 16. Did not quite lose consciousness. I’ve been told by DH that he took me to emergency where I was diagnosed with a uti, given a course of antibiotics and sent home. Shortly thereafter my pcp called for a test to see if perhaps my ibs was masking c. Diff. Test came back positive for c diff, and she stopped the antibiotics after a week and changed to vancomycin. Took that for two or three days, DH was getting ready to pack me in the car to go to hospital regardless when pcp called to urge him to get me to the hospital. Went into afib with hypotension. Local hospital not prepared to deal, they refer cardio.

Code 3 to larger Lexington hospital from the local hospital. THAT I remember. Must have been the noise. Spectacular hallucinations, would not eat, could not as I just vomited anyway, tore out iv’s and broke off my exterior pic fittings. Had fluid drained off my lungs twice, fevers up to 103. Cat scan, MRI, liver values way off and I jaundiced for a few days, I never saw the white light they talk about but I remember speaking to someone during one of my episodes of delirium and asking what I needed to do because I did not want to die, At that point I think I turned around but had lost muscle mass and had neurological deficits. Afib was intermittent, was sent to rehab hospital but transferred from there to the other large hospital, which has a good cardiology unit. Code 3 again. Two weeks and cardioversion later, plus I began to make myself eat to take advantage of their PT, was able to go back to rehab where I went back into afib, back to cardio unit emergency where I got a second cardioversion. DH was allowed to take me back to rehab in the car, I think. Still having intermittent hallucinations. About 78 days total for the whole mess, came home March 20.

In home support was excellent, OT, PT and nurse coordinated well and I was able to dump the wheelchair for my walker. Outpatient PT has been great, I went from the walker to a cane and can manage pretty well without that though I take it for safety reasons. I haven’t really stressed my abilities yet, haven’t tried to run and still don’t drive. DH is resistant to me driving, and I get it.
So the neurological and cognitive deficits are still lingering. I take heart medication where one of the side effects can be numbness, but it could just as well be neuropathy. Honestly I am thankful I still have all my appendages.

So I have found resources online for moral support such as sepsis alliance, but I remain baffled about how I would go about improving my cognitive abilities. I can see in some of my posts that I can’t spell and am disjointed. I scored 29 out of 30 on the OT test but honestly that test isn’t asking for much. I can type but barely write , do have trouble texting and accidentally touching the iPad screen, and have to really concentrate on math, enough that since I am over 60 with 20 I retired from my agency. Besides DH is positive that the duty changes, the mandatory OT, in the last year wore me down and made things ripe for the infections.

Has anyone else been in my situation with the cognitive function and have knowledge of resources I can bring to my pcp or access online? My mother did crosswords and games online to keep up her acuity but I get edema if I sit at the desktop and never had the patience for her games. I dug out the iPad so I can move about more. Also have a short attention span now, but quite a bit of the information out there just says “it will take time”.

This got long, and sort of disjointed, sorry.

[AKB]

My neighbor went through it. It took her at least a year to fully recover. There are cognitive rehab programs at many big hospitals. You may want to go and see what they can offer. Try to stay active and involved in things that you enjoy. Read, watch the news, take walks. When you feel able, volunteer at an animal rescue or other place where you will be able to help others.

[ReSomething]

Thank you, I have been planning to keep busy as soon as I have the driver license back. I think my old trainer has plans for me, she is involved with many good works for the food bank and animal issues.
I’ve been googling and speech therapy has cognitive components, as well my Fil had back surgery with a minor stroke and the same type delirium that I had so I am hoping to compare notes with him. We have talked a little and we compare notes. Between the two illnesses we didn’t make contact till Father’s Day.

I can’t recall usernames consistently now, zazu is it? AO always optimistic.

[Fillabeana]

ReSomething, I almost died of peritonitis (and it’s subsequent septis) from a ruptured intestine.

Initially, it was misdiagnosed…sort of… I had a kidney infection and a painful cystic ovary. And the doc thought that I was a whining hypochondriac looking for more pain meds…

A different doc caught it just in time and sent me for a CT scan. They were quite alarmed with the results of the CT scan and got me into surgery immediately. I was in dreadful shape, hospitalized for ten days. Surgery took a lot longer than expected, recovery was beyond miserable.

I don’t think the surgeon was terribly optomistic about me living through it.

I did not have cardiac issues. I also have not had major cognitive issues that I am aware of.

But I was not OK for a very long time after, 18 months before I was able to take care of my household and such.

[Zu_Zu]

ReSomething ~ I’m here to send you a horse van load of

((hugs)) laced with extra strength & patience to shore you up during this toughest of times ~

and of course : JINGLE ~ JINGLE ~ JINGLE
and

[B]AO ~ AO ~ AO ~ ALWAYS OPTIMISTIC ~

((hugs)) for you to feel the Coth friendship rally around you ~ [/B]

[ReSomething]

Zu zu. I will remember that now,lol! Thank you so much, and fillabeana thank you. I recall being quite baffling to my doctors as well and they seem to have been discussing my prognosis in front of me, delirious or not. I got mad I remember that, hated that hospital and the staff and they hadn’t done anything egregiously wrong. My body just was not responding well and long hospitalizations and bed rest are debilitating on their own.

Anyway my PT has nothing but positive things to say, supposedly I look normal and healthy (but I can tell, oh boy can I tell, I get tired, my blood pressure drops and I feel dreadful and soldiering through it is no longer an option) and I think I just have to learn patience. My FIL with his minor stroke will likely be doing exercises and he is wanting company so that is something I can do for the both of us. And practice patience, forgiveness and mindfulness.

This has certainly brought my mortality home to me, and DH got tossed in the deep end and managed to swim but still hasn’t made the effort to sit down and get together with an attorney to attend to estate issues, POA etc… Of course I was too busy before, we both were, but even without my issues one or the other of us could get hit by a car or something like that. Procrastination has always been my bane.

[MissCoco]

Not a survivor - but a researcher in sepsis and critical care. I’m so sorry you have been effected by it.
We are working hard to understand it better and improve treatments and post-treatment recovery.

It is true that recovery takes time, much more time than anyone would want it to take!
I have seen some literature that cognitive behavioral therapy (CBT) can help patients stay positive and prevent frustration with progress after concussions.

Have you looked into therapies for post-concussion syndrome? I know it is an entirely different issue, but there are many therapies that are utilized and recommended after concussions, and maybe some of those might be useful for you to bring up with your PCP?

It’s good that your PT is positive, and great that you have someone you can help right now. Those exercises can be such a pain, I’m sure he will appreciate your company!

Sending good vibes your way!

A suggestion for something to do to keep mentally stimulated without sitting in front of a computer: Podcasts! I really enjoy entertaining myself with these. If you want a bit of mental challenge, there are trivia podcasts like Ask me another, or Good Job Brain you could try.

[RMJacobs]

Many years ago, my sister was in the hospital due to sepsis. Seemed like she was there forever. I lived 1800 miles away and had a hard time getting good information. I suspect her husband was putting a positive spin on her condition, as he kept telling me not to worry and that I shouldn’t go there. Later, my sister told me she thought she’d nearly died, and that was the first time I heard it was sepsis. Had I known it was that serious, I would have gotten on a plane.

It seems like she bounced back fairly quickly.

We had at least a little knowledge about it because our stepfather’s best friend was hospitalized for a long time with it. He was much older and had a very difficult recovery.

Rebecca

[ReSomething]

Thank you miss coco for working in the field! From what I understand the death rate for sepsis can be as high as 50 percent if it gets to the shock stage and I now have an increased likelihood of dying anyway. Anything that can be done to improve those odds is a blessing.

My cognitive problems make it necessary to wait till my dd comes to visit to check out the podcasts as i have no idea how to access them. I can text a photo to someone and that was the primary reason I got an iPhone was to be able to accept photos from my coworkers out on the street regarding work related issues. The pantech I inherited from my daughter wouldn’t display with sufficient resolution for me to help troubleshoot. Thank you for the recommendations though. A lot of that stuff has gone the way of my passwords, I had two rotating complex ones to access work, wrote one down but not the other, and supposedly I locked up the phone in the hospital during an episode of delirium. DH had to go to att and have it opened again, I thought that wasn’t possible but it still has all my photos on it and text messages such as “xjjf” I", and “lights and sirens on the salty”.Youtube I can handle, I am currently binge watching episodes of forensic files and I can read paper books, I knock off about one a day, but even before the sepsis I wasn’t much of a phone/media person as we lived in a dead zone and have slow internet. Also don’t watch broadcast tv. Coth has some good discussions that teach me new things and make me think.

Insurance and the the specific requirements of those companies has been interesting to say the least. The multiple ambulance rides were billed to us and the we had to float the payments for a month maybe, then the insurance reimbursed at 100%. We had the twenty five hundred to float and I am thankful it was paid but gee whiz. And we are still getting bills or being called and told we haven’t paid, DH handled that but they don’t want to talk to him, I have had at least one very curt conversation where I end up lying and telling them I was in a coma and had no knowledge, send another bill. We also had a bill sent to the wrong town altogether, wrong address on the envelope, and returned by the post office.

I was not able to walk up stairs without help, i.e. Being shoved, but because the insurance had a fixed number of days at rehab, maybe ten days, and I was given the impression that private pay was far too much, I got to go home and be trapped in my house until I developed enough tone to go up and down our steps. There are far more visitsfor outpatient PT covered, I wasn’t able to get to rehab yesterday to inquire but if I have to have a diagnosis in order to take advantage of stroke/tbi therapy I dunno.

I have been been discussing this with a coworker and we agree that supportive family can be a lifesaver. She and her sister fed her c diff + dad his meals and generally assisted the nursing staff, my DH toileted me as the staff seemed to be eternally busy and I was not happy being allowed to be incontinent, for some reason I found it degrading and dehumanizing and it really colored my attitude towards certain staff, also made me work as hard as I could at rehab to use my walker to go to the little bathroom and take care of as much as I could, but for a while there DH was pretty handy with a bedpan, brought me things like chic filA that I might eat.

Although i I am hoping to go back and lesson I made the decision to rehome the horses because even now I dont think I could care for them properly and I didn’t want to make DH lose his health also. I can speak well, write fairly well but have difficulties with anything requiring spatial or motor skills, I got the trash cans down the driveway by myself today and rescued the one that fell in the rut and tipped over, but it’s only been recently that I have had the strength to tote feed buckets and I doubt I could do it day in and day out, along with turn out safely, clean stalls etc. Not driving has extended to mowing too:confused: , DH’s choice.

This has also gotten way too long, my thought has gotten even more linear, similar to my FIL who has some trouble switching topics now.

[ReSomething]

RM thank you, yeah as I said we never even thought about getting in contact with the FIL or even my DD, and I do wonder about that. For one thing it is all consuming, and also same old same old, so if my DD had flown in from overseas she would have been in limbo, I would still have been out of it but I would have felt guilty if I had known it was affecting her future career. She worked very hard to be competitive and be selected.Once I was out of the woods so to speak at the rehab hospital we told her and she will fly here in august when I hope to be able to walk for some distance and not have to take a nap every four hours,lol.

I recall that my dad didn’t want me to know he was hospitalized so I wouldn’t worry and instead I thought he was angry with me when he missed our weekly call as we had locked horns the previous week, it was very tense and I didn’t take his death well at all. If my DD had been in the dark about my illness and I died, that would have been terrible also. One of her friends had lost his mom to cancer in high school and she became, not clingy, but definitely more engaged. There Is no good way to determine what is the best strategy.

[Fillabeana]

Hang in there… probably a good idea to re-home the horses.

It was two years before I wanted to ride again. I sold my big Percheron TB gelding, as I found him the ideal home and he was also a whole lot of horse.

Yes, I knew that I almost died. In recovery, I knew that my mother and DH were at my bedside, and as I approached consciousness I became aware of a benevolent presence ''telling" me that going back to (consciousness) loved ones was going to be super difficult, and that there was a more peaceful option.

[ReSomething]

I keep missing them but it’s not fair to my DH, to the horses or even me as I fret over my inability to care for them and second guess DH. He always wanted a lake house so we bought property for the future, when he retires. I rehomed them to a local stable owner who probably flipped them but doesn’t sell at the auction. My trainer had no space or I would have boarded them, but I think it just worked out better this way. I never saw the white light, too much like my mother thinking I could somehow if I worked hard enough I could just make it come out my way.

Well it’s true I am going to have to work pretty hard.

[Justice_for_Horses]

I don’t see Sepsis anywhere expect is the thread topic. What caused the Sepsis? Was it the UTI or the C-Diff? What caused the C-Diff? Was it the antibiotics given for the UTI? I thought C-Diff was started by being in the hospital and getting IV that had bacteria or by taking a lot of antibiotics. It’s probably me missing something, but I’m trying to tie all these problems together to see if one thing caused the other or if they are all independent.

[ReSomething]

J f H it is a long story and I was not aware, generally delirious, during the period of time they were treating the c diff. at hosp #1.So heres a long story and if you go online there are many people like myself who have posted their stories and their individual experiences. Youtube has a couple comprehensive stories. Some should have been small infection that went nuts or even no infection at all.

Sepsis is caused by massive inflammation as a result of the body’s response to an infection or for some unknown reason. Doesn’t matter which one and most of the time it’s not expected.
I was likely one of those people who had a colony of c diff in my gut that was peacefully coexisting until the antibiotics for the UTI. Since my usual practice was to eat a cup of Activia greek yogurt every day any time I was undergoing an antibiotic course (and not seeking antibiotics unless necessary), I may have avoided a proliferation of the c diff several times. I know that I was exposed to it as my MIL was quarantined for it before she died in 2014 and at the time we were not ordered to gown up and it was in the back of my mind since then that I needed to be careful as c diff is now more into the community. She most likely picked it up in the hospital two years previous when she had a hernia repair and her home was undoubtedly full of the spores. I know when we cleaned up her apartment we were all gloving up and using gallons of bleach and throwing out items that had even the slightest chance of being contaminated but we had probably all been exposed beforehand.

I wasn’t eating at the time I took the antibiotics for the UTI, nor do I know if I got clindamycin which has a bad reputation for giving c diff a clear playing field, and DH wasnt aware of why I used the Activia and probably didn’t want me vomiting up yogurt anyway.

If anything the events were interdependent or a chain reaction. I have an appliance I wear internally to allow me to lift and we had a change at work that made me come in three hours early on a daily basis to meet a truck and unload a deck load manually, the increased workload on top of my weight gain over time caused the appliance to create a rub, which bled, I became anemic and we had just put me on Iron pills and were discussing an appliance change. That rub may have been the spot that allowed the bacteria from the UTI to migrate and proliferate, and the c diff was allowed to proliferate as a result of the antibiotics to get rid of the UTI. If we hadn’t gotten that contract or my boss had an extra person to meet the truck I might never have been in this mess.

I was also getting pretty tired as a result of my longer schedule which was usually over 11 hours in a day through out 2018 and by the time Christmas came along, our busiest season, I was working on autopilot, had given my dh feeding duties, was not eating and losing weight. Yes I was obese to start with but the circumstances weren’t good.

TBH it wasn’t neat and simple, it was a result of a number of things that caused me to crash in the way that I did. My liver having checked out and my heart going into Afib caused their own problems and I recall that I took dozens of pills daily to attempt to control my assorted symptoms and tests for every nook and cranny that might be causing the continuing diarrhea and fevers. I had pleural effusion and had to have 600 mils pulled off twice, I recalled both procedures but had no idea why I came to have this fluid.

No one seemed to notice I wasn’t eating but it certainly didn’t help.

I don’t think sepsis is one of those things you can test for and say oh look, she has sepsis, it is more a case of multiple organs starting to fail and eventually the overall syndrome is recognized as sepsis. There is a protocol called SIRS, systemic inflammatory response, where there are five things to look for as being on the progression to sepsis and septic shock. I think they use another set of criteria now as well.

So remember, c diff can be everywhere, wash your hands thoroughly during the day, after the bathroom and if you handle things handled by other people. The nurses in my room were told to wash with hot water and soap and scrub, the antibacterial hand sanitizers aren’t considered to get rid of c diff…

I am not a medical professional so if anyone is more curious talk to your doctor.

[Clark3709]

I am also a Sepsis Survivor and would be more than happy to help you navigate your “New Now”. I am four years out from my Near Death Experience from the flu/pneumonia with a myriad of complications that kept me unconscious for 8 days, in ICU for two weeks, inpatient at Rehab for 2 weeks, Outpatient at Rehab for 2 months. In the ER, my husband was told I would not live as I coded, but somehow survived–physicians were puzzled at my survival; during my stay I was attended by no less than six specialists. Early detection is key to Sepsis Survival and fortunately, Mission Hospital in Asheville, NC recognized my Sepsis Warning Signs and rushed me into the ER immediately. My husband drove me to the hospital, but I have no memory of arriving and the next 14 days were completely delusional. Like you, I did not see “the White Light” but I was in the Tunnel. My Mother-in-Law had passed six months prior and she hovered at the foot of my bed, commanding, “You MUST live!! Mike (husband) and Dillon (stepson) need you!! You cannot die!!!” My Father and Stepmother (both deceased) stood at my right side, not pushing or pulling me in any direction but ensconcing me in bright, white, loving support.

By day 13, Physical Therapy had me simply stand with assistance from two therapists; the next day I took two steps and that was enough to admit to an aggressive Rehab Hospital; otherwise, I would have gone to Long Term Care. My first day in Rehab, as I was fitted for a wheelchair I was overcome with nausea and knew I was going to vomit. The therapist asked if it my high pain level but I replied, “No, today I was scheduled to be in Raleigh to test ride a Dressage Horse but instead I’m being fitted to a wheelchair” and copious tears began to roll down my cheeks. She gave me anti-nauseau meds ASAP and fortunately, I didn’t throw up in front of all the other patients in the Rehab Gym. I had to learn to dress myself, feed myself, turn myself in bed, get up from the bed, stand, walk, etc.

After six months, my physicians advised me to apply for Social Security Disability, so I began that 2.5 year process. I still remain extraordinarily compromised. A phone call might be easiest, if you feel up to chatting? After two years of daily struggle, my Internist and Pulmonologist referred me to Hunter Hopkins Center in Charlotte, NC. If you are on Facebook, ask to join the Hunter Hopkins Private Chat page as you will find extraordinarily supportive and informed people there. It took a few months to obtain an appointment at Hunter Hopkins; it is private pay and in the range of $500 per hour. My first visit was five hours, but I was definitely diagnosed with myalgic encephalomyelitis, chronic fatigue syndrome & fibromyalgia (ME/CFS/FM). I learned a tremendous amount my first visit and testing confirmed what my husband and I suspected: I’d lost between 10-30 IQ points during my hospitalization. I’ve followed their regimen faithfully and have had some improvement, but have not been able to return to work or full-function.

We remain on our small working horse farm and four years ago, I couldn’t sustain more than five minutes of dressage work. I could manage an hour trail ride after several months. All physicians advised me to keep riding and I have; we do not have hired help, so I work on the farm daily as I can manage. Horses have been hugely therapeutic in my recovery, but my aspirations for a USDF Medal have receded as I continue to come to terms with my illness. My husband and I were both diagnosed with PTSD and I imagine you both are dealing with similar symptoms? Night terrors continue to haunt me routinely. Today, my typical schedule is out of bed between 9-10AM, coffee/breakfast/meds, chores/errands for maybe four hours interspersed with periods of rest, back in bed by 2PM-ish, back up around 6PM for evening feed and to spend the evening with my husband, back to bed between 8PM-10PM. Prior to my illness, I worked full-time, ran Airbnb, managed the farm, trained dressage and eventing, competed, rode Hunter Paces, traveled to events out of state, traveled nationally and internationally extensively, led a full social life with evenings out for dinner and live music…etc. It has been a bitter pill to swallow and a long hard road to navigate. Finding others who have “been there, done that” can be most helpful.

If you are on Facebook, you can find me as Sharon Clark Maxwell, Asheville, NC and our farm is on Facebook as The Newfound Place. We have it for sale as I’m accepting it is truly more than I can manage to my high standards with my limitations. My husband works full-time and he isn’t a farmer, so life on the farm remains a bit foreign to him (he’s an Air Force Brat, I’m an agrarian). IDK if you will develop ME/CFS/FM, but this page may prove helpful: https://phoenixrising.me. Gary Black is a Sepsis Survivor and his book helped me early on understand the complexity of Post-Sepsis Syndrome. https://www.amazon.com/Gyroscope-Sur…/dp/0741466880 My Critical Care Specialist explained that any patient who is in ICU for a prolonged time will most likely suffer from Post-ICU Syndrome. I hit the lottery as my diagnosis includes: Post-Sepsis Syndrome, Post-ICU Syndrome, PTSD, ME/CFS/FM.

In conclusion, I currently sit on our front porch: responding to your query, gazing at our horses in the field, hearing the creek babble, watching the birds fly and chirp around me, dogs at my feet and I lift my eyes to the mountain range across out valley and breathe my utter and complete gratitude for having survived Sepsis, most especially with no amputations. My Mantra remains “One Step at a Time, One Day at a Time” and to live in the “Now” in a state of Gratitude. Best Wishes, my Fellow Survivor!

[Chall]

Perfect timing. On tv now Diagnosis: dead or alive, season 1 episode 2 is on mollie who has sepsis. Discovery channel.
Im not sure it deals with recoveries though.

[ReSomething]

I’ll have to find the tv program somehow., thanks Chall. Clark I am so sorry that the condition cut short what looks like a productive and happy time of your life. I have hunted down your Fb page and made a friend request if you are able to find it.
My mom died of complications of MS and my cousin’s daughter is an MD and presented with Fibro during her graduate studies. My moms MS didn’t present until she had the hip replacement she had wanted so badly and sort of knocked her off the track for her retirement, which is what has happened to me. I was leaning strongly towards retiring right about now and looking forward to getting my life back, traveling abroad to see my DD, riding again, and it looks like I will get caught up on a lot of reading but being active and making long journeys is not in the cards. Not this year anyway. I chose to retire but not the way I had desired.

. My PCP tells me I have markers for auto immune disease, I just hope I am able to recover enough to have purpose.

[Clark3709]

So sorry to hear you lost your Mom to MS; it is a challenging disease. I think I located your FB Friend request as Jessica & sent you a PM to confirm. Thanks!