Post sepsis recovery and syndrome

[Angelle]

First I would like to thank the community and everyone that posts about their experience. This has made understanding the processes and what my little sister is going through so much easier.

My sister is 27 and has been in the ICU since September. We were approached on the second week to take part in a probiotic research that they said could help her fight the infection. We agreed as anyone who has been in this situation knows you would do anything to save your loved one. Unfortunately this has come with its own sets of problems. We are no longer informed on what medications or procedures will be done. We just come visit her and she has a new band aid or a new operation. She was responsive and coming off her meds yesterday and today she has muscle spasms with foam Ike spit coming out of her mouth. Last week she was started on therapy then they stopped without telling us why. She was doing the tongue mouvements and opening her mouth and everything else the therapist asked. Today they are claiming the research doctor ( she was transferred to a hospital closer to home) said she is unresponsive. She responds to my sister and mother the most. She smiles, laugh, moves her limbs and is trying her best. The infection is gone, the pneumonia is gone, they said they have the delirium under control and she can breath on her own but they won’t remove the tracheotomy tube. We had both a CAT scan as well as an MRI and they both show no damage to the brain. I understand that she was under heavy meds for a month but now we feel like they just won’t give her the help she needs to rehabilitate and are trying to dismiss her as just being “sick”. Can someone tell me or send me a link to rehabilitation syndromes? What should we expect in terms of her slowly gaining her cognitive functions and memories back? How long did it take you guys? I know everyone is different I think I just need some hope because we all just feel helpless.

[Sepsur]

I don’t quite follow what has happened to your sister ( sorry 😊). I can try and give you a snapshot of waking from coma and rehabilitation- I still had several infections that they were battling to get under control - these flared up intermittently but regularly for another month after two month coma. It took 11 days to properly come to. Even then, I was unable to communicate properly for several days, my hands were too weak to write, trachy stopped me talking & my mind was still dancing off all the sedation drugs. These drugs can take months to FULLY leave system. The physio regime altered from passive mobility to trying to engage active use of all my muscles. Especially for those on life support, muscle waste is a massive problem. I lost nearly all my muscle tone and was unable to move when I woke, all my muscles had atrophied. It used to take 6 people to help me sit up over the bed. I had to be hoisted from bed to chair etc etc - it took 6 months of dedicated physio to get back to anything like normal & I am still improving. They say it takes 10 days to recover from every day in ICU - you do the Math 😀. The ICU I was admitted to, did not believe my system would survive intact - I have minimal scar tissue in my left lung and as my younger brother says, “ You lucky so and so, the only thing wrong with you is you’ve got a vagina cut in your throat” ( trachy scar).

I came into ICU with flu, double pneumonia, sepsis moving into septic shock and multiple organ failure. I was proned 3 times after contracting severe ARDS, I picked up MSSA, VRE, CMV & glandular fever whilst in ICU - hospitals are full of sick people, if you are immune compromised, you’ll pick up everything. They also diagnosed me with having a type of leukaemia. 2 days before all this, I was skiing in Austria with my family. One of the deciding factors of my survival was that I didn’t smoke. My family went through the repeated trauma of CAT & MRI scans looking for brain damage and being told I would not survive the night.

I don’t think in the same way that I used to, people say I am ‘softer’. My stamina is not where it was. I am pretty ‘normal’ from the outside 😀

[Angelle in reply to Sepsur]

Thank you for your reply and sharing your journey. She is going through the same thing pretty much. She’s improving a little more everyday and as of yesterday is able to move or wiggle all four limbs. I am happy you are still improving and overcame this.

[Sepsur in reply to Angelle]

When she eventually leaves ICU encourage her to do steady physio. See if you have a local ICUsteps meeting - you & she will gets useful tips there too

[Hannamanna26 in reply to Sepsur]

In 2005 I woke up in the ICU from an induced coma. I had sepsis and ARD with a 2% chance of surviving. Fortunately because of my age and overall health prior to this was good, I was able to survive. I was in the hospital for almost 2 months and it was the most horrifying experience. After 12 years and 4 months, what still lingers with me and is the most difficult part to get through is all the hallucinations I had in the ICU. The hallucinations seemed so real and I still get nightmares to this day. It takes awhile to feel normal again, but I learned I will never feel fully “normal”. I hope things go well for you and good luck.

[Angelle in reply to Hannamanna26]

Thank you for sharing your experience with me and well wishes. She seem to hallucinate quite often because she laughs by herself. I try to keep in mind that she might not see what I see and now I will be even more careful interacting with her.

[Angelle]

Thank you friz, I knew you would know the proper links. Thank you so much

[stevet11753]

Angelie, you say you were approached to take part in research, was this as part of a clinical trial? These trials have treatment 'blinding' protocols in order to ensure unbiased outcome assessments. In any case, participation would require your informed consent and that you be fully and continually apprised of all procedures.

My own experience was very similar to Sepsur's and I likewise emphasise the importance of a physio program. Most of my rehab took place on a hospital ward. I hope your sister is continuing to improve.

[Angelle in reply to stevet11753]

Hi Stevet11753, yes it was part of a clinical trial. About 3 weeks in we realized that all the tests done on her were making us uncomfortable and we decided to end it there. Not to sound crazy but we believe that they are either still doing research or gathering data ( they cut a piece of epidermis on her heel without our consent or knowledge and her hair look like it was cut as well) but can’t prove this so we decided to just concentrate on her recovery.

Some days she’s stiff and not “there” and other days she moves and is responsive. It’s just a rollercoaster of emotions, never know what you are in for until we get to the hospital and see her. You said that your experience was similar to sepsur. Could you please tell me about your recovery journey. Did you feel trapped in your body? Were you able to communicate? How long did it take? Thank you so much for reaching out and sharing btw.

[stevet11753 in reply to Angelle]

Hi Angelie, I don't know anything about the legalities of clinical trials, but if they are treating your sister as though she's still in the trial then that's at least unethical.

To give you more details of my experience, I was in an induced coma for ten or eleven days and in ICU for six weeks. I was on ventilator for four or five of those weeks and was given a trachy after about two weeks. A speaking device was fitted to the trachy tube at about the fourth week and I was able to speak for the first time since my coma.

I came around to realising what had happened to me only gradually during my time in ICU. I would say I was aware about two to three weeks after coming out of coma. However, the whole of my time in ICU I had difficulty separating my dream world from the actual world. I would ask my family about things that weren't real: for a time I thought I was in a hospital in a different country. It seems this is quite common. There were terrible dreams of entrapment, but also some consoling dreams, as though my mind was taking me to a place of healing.

I was sat on the edge of my bed about the fourth or fifth week in ICU. Like Sepsur, I needed half a dozen nurses to support me and I thought it would be months before I could walk again (I actually achieved this in about six weeks). About the sixth or seventh week I was moved to a recovery ward and that's when my rehab started. It was hard and slow at first, but then more rapidly and after about six weeks I was able to go home.

I hope this is some help to you and that your sister continues to recover. It's a long haul, so remember to also take care of yourself.

[Angelle in reply to stevet11753]

This gave me hope. We are at week 4 of her coming out of the induced coma. I know many say to take care of yourself while your loved one is healing or sick but I can’t help but feel selfish if my mind wanders away from her pain and suffering. But I do try to take care of myself to be able to help her when she comes out of the hospital. Thank you again for sharing.