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?

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?

@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

Hi Justin. My deepest apologies for not responding sooner. I see that it has been many months since your question. I guess I just did not see it. Yes, I did connect with a group here in Nashville who follows post ICU patients. Sadly, I spent an afternoon going through their clinic expecting some feedback/recommendations at the end, but there were none. I have pretty much given up on having someone listen. I suppose I am just too much of a complainer. I do have various medical specialties looking after the post sepsis problems (ie, some kidney impairement, blood pressure instability, etc), so I feel good about that. I guess so much time has elapsed since my episode with sepsis (actually 2 hospitalizations, only one lengthy ICU stay) that everyone thinks all is okay. Maybe the fatigue, lack of energy, and total crash at the end of each work day is normal. One interesting experience I will point out for those who are going through it or who have been through it. When they finally realized I was spetic, I remember a small army of nurses jumping into action. One was inserting a large guage needle for another IV line in the other arm, one was raising the feet and lowering the head of the bed, one was checking BP, one very nicely said "honey, I have to do a foley" (at that moment, I did not know what a "foley" was. I quickly leared), and I was being wisked off to ICU. In all that flurry, I never felt like I was in immediate danger. I kept telling them to calm down, it would be okay. They said my BP had crashed and I remember telling them not to worry, I have high BP anyway, so it will come back. Of course, i really was feeling horrible and it only got worse. Once in ICU, they came running to insert a PICC line. You know, I really did not realize the seriousness of what was going on until, after things calmed somewhere around midnight, the hospital chaplain came in and asked me if there was anything I needed to talk about at that tiem. When that woman left, it hit me. I did not know that the doctors were telling my wife that I may not survive the night and the next few days would be critical. She spent several days being told daily that she needed to prepare the kids. Yes, it was a traumatic experience once I realized what was truly happening. In the first moments, I had no idea my kidneys would fail and I would go through several sessions of dialysis over the coming weeks. I did not know that my cardiac enzymes had shot sky high that night and they were concerned about heart damage. So, I guess those of us who have undergone such things should not feel badly that we feel bad chronically. Unfortunately, I do not believe that the medical community understands, and they do not want to hear it.

@tbaxter33 thank you for sharing your experiences. i personally love my pcp (and he loves me) for listening to me and supporting or refuting my understanding. for example, when people started telling me I might have chronic fatigue he explained that chronic fatigue is a description but not a diagnosis, and I certainly did have it and there were multiple reasons explaining that fatigue. If only more people had such good discussions with their physicians.

You may be right about your situation and there is nothing more the doctors can do at this time. I encourage you to keep asking and searching. New information and solutions are being discovered all the time. Best to you.

I found so much help through the PULSE clinic at University of Michigan Medical Center

I had a similar experience though no kidney issues, just an inablity to find a Rx that works. UTI recurrent for a few years but this one gave me no symptoms so went in late. Bed IVs 8 days in ER hospital unit, IV home 6 days. After a week I thought I was back to normal. Wrong. I kept finding more and more things after each week of optimism, things I had not even noticed were gone. My mind is still not functioning normally after the onset of sepsis in November. I forgot to cook for over a month, just ate what my partner brought home, and snack bars. Also gained weight with junk food and peanut butter cravings which is not like me. Exhausted by 10 am, fall asleep at the computer or at TV or reading. The exhaustion come later each day and now I am just lacking energy but I can function all day. About a month ago, I started getting UTIs again non stop, on antibiotics with no response, This with a new specialist, and now we are on the right track, an old med that kills everything for three days, then a maintenance of methanemine every day the rest of my life he believes. It's a tried method of some bloggers on Mayo's baldder page. I finally starting just doing leg lifts in the chair, very mild knee bends when brushing my teeth, then stretching, and now I can use the treadmill slowly up to 30 minutes if I have a good book in front of me. I don't want to go anywhere, even though I end up enjoying socializing when I do go out. I prefer to only go out to feed the bird feeders. I just found today this post ICU syndrome and realized I am in grief over having lost all this and feeling youth is what I lost. I was a very very active 78 yr old woman, now just a 78 year old woman. Not only do doctors not know what to say, but our loved ones and friends don't grasp the realness of our woes. Thankful to be alive, but not happy yet. You are not the exception, by far!!!! Post sepsis syndrome is a real diagnosis, we just don't get it from most doctors. Stick with this site and read, maybe learn, grieve, get angry then get over the anger and wait till you can do something physical but at your chosen pace. My appetite has evened out finally, yours will too after you are able to take any action that leads to more energy. You were through a huge amount of trauma, friend. So was your body, every cell was affected. That's a lot of healing to make it through. I don't tell anyone that I have a regimen so if I slip, I don't get told it's not good to put it off. I just do it as I am able, and you will eventually be better. I don't know if we will ever feel back to normal, aging doesn't get us fit as easily. You have fewer years than I so I have good hopes for you. Go easy on yourself, guilt is a no no. Blessings. Vicki

Absolutely, me too. I was intubated for severe double pneumonia & Sepsis. The hallucinations i experienced were so haunting & disturbing. I was only lucid/ rational for short periods of time & I spent it doing nothing but begging God to please take me.