Category Archives: COMA

PSS. POST SEPSIS SYNDROME

SEPTEMBER 2014 IN COFFS HARBOUR ICU

So, you’ve survived SEPSIS! Congratulations!! No, seriously.CONGRATULATIONS! You are one of the few who has left the hospital as a living person. This is a good thing. Now what?

Well if you thought “sepsis” was gloomy and spoken of only in hushed tones; wait until you read about “post sepsis syndrome”. This will knock your socks off.

According to the Sepsis Alliance here are a few basics on post sepsis syndrome;

Post-sepsis syndrome is a condition that affects up to 50% of sepsis survivors. They are left with physical and/or psychological long-term effects, such as:

  • Insomnia, difficulty getting to sleep or staying asleep
  • Nightmares, vivid hallucinations and panic attacks
  • Disabling muscle and joint pains
  • Extreme fatigue
  • Poor concentration
  • Decreased mental (cognitive) functioning
  • Loss of self-esteem and self-belief

Here’s the rest of my story.

As I was wheeled out of the hospital’s front doors I was immediately overwhelmed by the outside world. I know it may not seem understandable, but as I looked around and saw everyone going about their lives and felt the warm spring wind and sunlight on my face, I felt very “small and insignificant”. Everything I’d been through, all the complications, surgeries, fevers, pain and suffering seemed so pointless, and I began to cry. The attendant and my husband were frightened by my crying. They asked questions trying to understand. I couldn’t explain. I mumbled and spoke in words that were more confusing than my tears. It was surreal. I couldn’t understand myself, so how was I to explain it to others? I waved them off in a reassuring manner.

On the 110-mile drive home, I seemed to settle into “this is my new normal” and questioned each movement, thought and more. By the time I walked through the door, my complicated and confused thinking and feeling was overwhelming. I was frightened in my own home. At one point, I came close to turning around and wanting to return to the hospital. In a sense, the hospital felt safer than home. Spring was in full bloom. I could hear our cow in the fields. It was my home. It was normal, I was the problem. It was me.

I could only walk about 6 feet with the help of my walker. I needed help getting out of bed, out of a chair. I settled into a newer routine of physical therapy three times per week. The PT was reassuring that my strength would improve. IV antibiotics were given at the end of my dialysis treatments at home. There were practice walks through the house to try and increase my strength; a chair to sit on for showering as I couldn’t stand that long on my own. My hair began to fall out; by the hands full daily. My pillowcase was covered in it when I awoke and the drain in the shower was clogged with my hair when I’d finished washing up. That was daunting for me.

Then came the night sweats, the nightmares (being eaten by giant cockroaches in ER or ICU) and waking in the darkness of night. It would always take me about a minute to recognize or realize where I was. I would reach across the bed to feel my husband and was always reassured when he would pull my arm close and tuck it under his arm. This was the comfort and assurance I needed. Often, I would awake thinking I was still in hospital. The near constant whining in my mind of how very weary I felt and how deeply my muscles, joints and bones hurt added to my mental fog. I couldn’t read books like I used to. I couldn’t seem to focus so I tried only short bursts of ten minutes here or there and increased when I could and stopped when I could go no further.

To my family I had seemingly endless questions of, “then what happened?” I felt like a failure and more. Although I had returned home, I was in worse condition than before, a broken person with a broken body as if I’d been a doll and shaken so hard I was a limply, sad shell of what used to be. I felt hungry—yet little appealed to me. There was still some nausea and vomiting even weeks later. I seemed to live on English muffins with butter and a side of cheese. It was mild and seemed to stay down. I’d lost weight, but not so much fat as muscle. I worked hard to walk our hall multiple times daily to regain what I could, and went back to work once to say hi to my co-workers and friends. I could see the shock in their faces of how badly I looked, and didn’t return again for months.. I saw it in my own face every time I looked in the mirror.

I grasped for certain words and if I wrote anything I always seemed to displace every few words or so. It was frustrating: it felt I couldn’t even think in the proper context of a thought. The routines continued, dialysis, walking, thinking and speaking with the right thoughts in the right place. I quit cooking nearly altogether. To this day, one leg is always weaker than the other and my balance is way off. Depending upon my pain on any given day, its likely I won’t walk further than 20-30 feet on my own. Since my first stay with sepsis I now have chronic low blood pressure and I mean low—often 60/30. No explanation, it’s just part of my daily life. I’ve tried the meds to no avail. My husband has taken over many of the chores of daily living, which often makes me feel a failure. Now, due to other issues, I hunch over unable to stand or sit straight for longer than a few minutes. I manage the budget, pay the bills, make the calls, appointments and volunteer wherever and whenever I can; it helps me stay sane. It helps me feel accepted, valued, needed. Isn’t that what we all want?

Finally, the worst is the constant, quiet, ever present state of fear. Every time I need dialysis done in a hospital or clinic I think “is this the day I get sepsis”? I wait for the fevers, the chills the vomiting. I count the hours and days until I’m sure it passed. I have panic attacks and often cancel appointments, fearful that if I touch this or that, shake someone’s hand it will quietly make its way inside. The untrusting part of me glares out to monitor those part of my healthcare team, ME wanting to safeguard ME. If I start to feel punky I worry “is this it, do I have sepsis again? Will I die this time”?

Eventually some of my strength returned, so I graduated to a cane. Lost memories, night sweats, insomnia, loss of self-esteem, lack of confidence, pain and poor concentration are now to be my life-long friends. You see, once you’ve had sepsis you’re at a higher risk of acquiring it again. I did. I have. Three years later found me in the hospital with sepsis, pneumonia and c-diff. Two years after that I ended up with sepsis twice, my fifth time two years after and again in two years my sixth episode with my most recent episode just nine months later. In all seven episodes of sepsis each requiring weeks in the hospital, with procedures, high fevers, weakness and worse. So, when someone looks at me and says, “you just don’t look like you’re doing well”, I just smile and think to myself “actually I’m doing pretty darn good, considering.”

I still suffer most if not all post sepsis syndrome (PSS) symptoms, some days more than others but they’re there waiting to let me know “Hey, you’re going to be okay, but in the meantime…” On the inside, I remind myself that this body of mine has served me well. I’ve overcome horrendous odds and survived. So, you see I don’t call myself a survivor; I am an “overcomer”.

The Sepsis Alliance also states that:

The risk of having PSS is higher among people who were admitted to an intensive care unit (ICU) and for those who have been in the hospital for extended periods of time. PSS can affect people of any age, but a study from the University of Michigan Health System, published in 2010 the medical journal JAMA, found that older severe sepsis survivors were at higher risk for long-term cognitive impairment and physical problems than others their age who were treated for other illnesses. Their problems ranged from not being able to walk—even though they could before they became ill—to not being able to do everyday activities, such as bathing, toileting, or preparing meals. Changes in mental status can range from no longer being able to perform complicated tasks to not being able to remember everyday things.

The authors wrote, “60 percent of hospitalizations for severe sepsis were associated with worsened cognitive and physical function among surviving older adults. The odds of acquiring moderate to severe cognitive impairment were 3.3 times higher following an episode of sepsis than for other hospitalizations.”

What causes PSS?

For some patients, the cause of PSS is obvious: blood clots and poor blood circulation while they were ill may have caused gangrene and the need for amputations of fingers, toes, or even limbs. Damage to the lungs can affect breathing. For example, in another University of Michigan Health System study, published in 2012 in the journal Shock, researchers found that sepsis survivors may be more vulnerable to developing viral respiratory (lung) infections.

Other organs may be damaged as well, such as the kidneys or liver.

These lasting physical issues can be explained, but there is more to PSS that cannot yet be explained, such as the disabling fatigue and chronic pain that many survivors experience. Others complain of seemingly unrelated problems, like hair loss that may occur weeks after their discharge from the hospital.

Many sepsis survivors also report symptoms of post-traumatic stress disorder (PTSD). Researchers have already recognized that ICU stays can trigger PTSD, which can last for years.

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According to a 2013 Johns Hopkins study that looked at PTSD after ICU stays, people with a history of depression were twice as likely to develop PTSD after being in an ICU. The researchers also found that patients who had sepsis were more likely to develop PTSD. They wrote about the possible sepsis/PTSD connection: “The delirium often associated with ICU stays and post-ICU PTSD may be partially a consequence of inflammation caused by sepsis. This inflammation may lead to a breakdown in the blood-brain barrier, which alters the impact on the brain of narcotics, sedatives and other drugs prescribed in the ICU.

It is important to note that PSS does not happen only in older patients or in those who were already ill. An editorial published in JAMA in October 2010, addressed PSS. In “The Lingering Consequences of Sepsis,” the author wrote, “The new deficits were relatively more severe among patients who were in better health beforehand, possibly because there was less room for further deterioration among patients who already had poor physical or cognitive function prior to the sepsis episode.”

In other words, healthy people may be expected to rebound quickly from such a serious illness, but healthier people may actually have the opposite experience.

What can be done about PSS?

Post-sepsis syndrome must be recognized by the doctors and other healthcare professionals who care for sepsis survivors, so patients can be directed to the proper resources. Resources may include:

  • Referrals for emotional and psychological support (counseling, cognitive behavioral therapy or neuropsychiatric assessment).
  • Physical support, such as physical therapy or neurorehabilitation.

What is post-ICU syndrome and is it the same thing as PSS?

Post-ICU syndrome (PICS) is a recognized problem that can affect patients who have spent time in an intensive care unit or ICU, particularly if they have been sedated or placed on a ventilator. It is not unusual for someone in an ICU to become delirious – sometimes called ICU delirium. The longer a patient is in such a unit, the higher the risk of developing delirium or PICS. A study published in the New England Journal of Medicine found that some of these patients continued to have cognitive (mental) problems a year after discharge.

Here is what the CDC has to say about post-sepsis syndrome:

https://www.cdc.gov/sepsis/pdfs/life-after-sepsis-fact-sheet.pdf

Do all you can to stay sepsis-free. If you do get sepsis and have post sepsis syndrome, keep yourself, friends and family aware and educated about the risks and how to get help once it’s past. Ask for helpyou deserve it. Be a survivor. Be a champion. Be a warrior. Be an overcomer. Be whatever you want—just keep living.

Tags: Making dialysis betterEducation issues: for patients and professionals

Comments

  • Ann Contreras

Oct 13, 3:59 PM

Amy, 
I just wanted to take a minute to thank you for sharing your heartfelt and emotional journey. 
There is SO much to CKD that us ‘Professionals’ and Partners don’t know until it’s shared as clearly and concisely as you have written. 
Again, a heartfelt thank you. 
See you on FB! 
Ann

Reply

  • Ali Wilson

Sep 27, 8:32 PM

You just described me. I had Septic Shock five years ago. Discharge from the hospital was surreal. Not being able to walk, could only stand for a minute or two, couldn’t get up the stairs to my own bed. 
I would stop in my tracks and think, “I could die right here, right now”. 
Only therapy and medication has given way to some resemblance of a normal life.

A GOOD WEEKEND

My brother and his husband come visiting this weekend and we had the sweetest of times. Happy times. We ate at the Federal and at Red Gum and it was true family love. We went to the Pool for the Morning and they both came to see my place which is looking particularly good with the hedge trimmed and my view restored  and the inside Cleaned. The hard times have brought us to  a kindly place as a family. Petty stuff just don’t matter any more. It never actually did.

Later today a Friend from Toormie came visiting and it is likewise with us. She has been very very ill since 2015 and we need few words to speak well with one another.

IN THE MORNING

Cool Grey Dampish. I am up and in a little less pain. Not kicking footballs yet but somewhat better..  I am having a cup of coffee. Not unusual for many but I rarely do so. Black instant coffee with heaps of sugar. 

2BBB local radio on and washing on. and as it approaches noon I my eyes are turning to my bed. 

A phone call from the Doc. The blood results havent come back. She is contacting the labs. My gardeners havent come. The fluid tablets have kicked at last. I need an hour or two in bed now.

I have the shivers now and the shakes and feel depressed. The Doc rang back. Potassium is back to normal. Stop taking it. I dont give a damn what any of the readings are. I cant walk. My legs are very swollen and if every test they take says I am OK – I AM NOT. 

A week at home mostly alone and still swollen and crippled. And frightened again I guess. 

Mitch and Mon came today and did my lawns and a huge tidy up outside. They bring sunlight to me. Young and vital and delighted to be living up here. 

NOW FOR BED. 

AN ANNIVERSARY OF A COMA

Well. I have been home for days and days going silently insane. Its 4 years since I was put into the coma. I seem to be retreating into a similar sheltered place. I don’t even want to see my beloved little girls. Normally nothing makes me feel that way. I figure this will pass but for now I am in a deep mourning which is in its own way exquisite. So long as I can find my way back out of it one day quite soon. Here are some of the things that happened in that time.

from Facebook

Mum. We have a lot of things that we need to do together. We need you to get through this. I miss you xxxxx KATI

Chris Goopy It’s so quiet here without Lynne

Sandy Tempest Yes it is sending you love get well soon

Vanessa Gould Nugent It is VERY quiet. My news feed just isn’t the same without all of Lynne‘s posts. Sending much love your way. xxx

Trish May Morning Katie…hope today brings good news. Take care and love to your family.

Cheryl Bellamy Kati let your mum know we are having withdrawal symptoms without her “presence”. Love to all of you & hope she improves today

Karon Lydford …Dear Lynne, ..hoping we hear you are coming good today! ..such a beautiful morning you would love …Kati it won’t be long until you get to share some lovely summer days with your mum and your lovely girls again…hang in there, if you need any help please let us know….big hugs xox

NEIL That’s 2 Friday nights in a row Lynne that you have missed … you better have a good excuse! 😉

Chris.  11 sep 2014

Many of you know of my friend, Lynne Sanders-Braithwaite …perhaps by her sharing of grandiloquent words… can you please spare a moment to send her positive thoughts as she is very ill battling pneumonia… and is on life support. It’s only a short time ago that her beloved partner, Izzy Foreal passed away suddenly. Her family has had more than enough sadness.

from jenni my landlady at the time. She knew I loved the sunrises there at Raleigh and that I photographed them most days.

 

Lynne they call this the Rose of Sharon – I reckon its a hibiscus, either way Google supposedly doesn’t lie, so i will post this as the “The Rose of Sharon”. Today is a good day to wake up Lynne, the fog is lifting and a beautiful day is emerging all we need now is your smile and quick humor xxx

 

Last nights full moon, a beautiful distraction. For you Lynne Sanders-Braithwaite and Kati Braithwaite xxx

to

 

Good Morning LSB. I think you’ve had enough beauty rest now my lovely. All it takes to wake the sleeping princess is the kiss of her one true love. So Iz, if you wouldn’t mind giving things a bit of a nudge we’d be most grateful.

Patricia Le Gardien So beautiful words Ree…
Sharon Ibbotson Yea Iz – give her a kiss and send her home now!!!
Dorothey Roberts A very good post.Must admit I have been asking for intervention for her as well
Karon Lydford …so lovingly succinct, love it….so many people taking deep breaths for you Lynne and whispering in your ear to wake gently up..xo
FROM ELLEN IN BOSTON

 

From Sharon.

Lynne Sanders-Braithwaite

another sunset over our beautiful river. Love you Lynne xx

Noreen Russell Home now how’s Lynn doin Shaz…any improvement?????

Sharon Ibbotson She is still asleep Norsie, her body is still fighting the bug xx

Noreen Russell Thank god for that….ikeep praying for her….thanks Shaz love ya xx

MARGARET LOPEZ

We are sending this to Lynne Sanders-Braithwaite
We love you!

ELLEN FROM BOSTON

 

Here is your daily flower picture until you are ready to start posting yours again. Keep up the good fight. I’m jonesing for a good snake picture. Lynne Sanders-Braithwaite
JUDITH MARY
Hi Lynne 🙂 we are all batting for yaxx

 

PATRICIA IN PARIS

Good night.
(and special thoughts for my beautiful and strong Friend Lynne )

CHRIS

Lynne can never resist roses, so let’s start a rose chain for her… This is Princess de Monaco, my favourite rose… it has the most amazing perfume…

 

 

SANDRA CLARK

One of my favourite spiritual places. Thinking of you Lynne Sanders-Braithwaite

PATRICIA IN PARIS


As said Denise, please don’t miss this beautiful Spring.

STEVE BATTY

So miss Lynne Sanders-Braithwaite‘s witty posts hurry up an get well Lynne …..

______________________

11 SEPTEMBER 2014

“Another update on Mum. Lynne Sanders-Braithwaite.
Things are still pretty serious. I will keep this simple as it’s all very complicated and I don’t want to give the wrong information. The pneumonia has spread through most if her lungs. At present it is getting worse. They are still hopeful that if the antibiotics start working that she could improve. This does need to happen soon as her lungs can’t take much more. Staying hopeful at his stage. Lots of positive thoughts everyone! Thanks for all your kind words and support.”
from Kati her daughter.

“Quite a few of you have been asking for an update on Mum Lynne Sanders-Braithwaite Yesterday they stopped Mum’s sedation. We are still waiting for her to wake up. The pneumonia doesn’t appear to be getting worse but her lungs have been badly damaged. It is just a waiting game at this stage. Thanks again everyone”

FROM MARGARET LOPEZ MY COUSIN

Lynne Sanders-Braithwaite

I hope you are having sweet dreams ….. Xxx

my half a dozen chins are up! ( if you are up

JANICE SLATER CARTER

sending some biccies & cheerio flowers from the Blueys dear Lynne ..

PATRICIA PARIS

Ree Evans Lynne Sanders-Braithwaite is missing from all of us

MY OTHER COUSIN CHERYL

Lynne Sanders-Braithwaite you are making me into a Facebook tragic. I keep checking it hoping to see you have come back to us. Everyone is sending you best wishes & lovely pictures & that’s not working. Perhaps we should start trying to annoy you

SHARON : Its Thursday, 18th September, you are still the most popular sleeping beauty in the shire! Sending you much love and light Lynne. XX

REGINA

three days off facebook and look what happens? Sweety… I miss you: you’re lightness in the dark, your truth in the face of adversity and your joy of little big things; like flowers and sunsets and children and farm settings and good music. Please get better… please, please, please get better

VANESSA

I know you love the yellow robin Lynne, so I’ll share this one with you. I hope you will be back with us soon. I miss your musings and our chats. Kati, any chance of an update?

ANNIE DODD

Kati I know there is more going on than what we are seeing. I am from a distance feeling so much for you and how you must be feeling with your mum’s situation. I’m hoping you are finding a moment every now and then to relax and smell the wonderful roses Lynne’s friend send. Be gentle with yourself and take care. I await Lynne’s return as so many do.

KATI ON THE 15 SEPTEMBER 2014

We are all waiting for you to be with us again. It’s a bloody tough wait. So hurry up! I refuse to tell our little girls that you aren’t coming back. I love you so much xxxx

An update on how Mum is going. She still has to come out of the sedation. The main concern though is that her pneumonia is not getting better. This is because they are having a hard time finding what is causing the pneumonia. The large range of antibiotics that they are giving her aren’t working. We are hoping that in the next few days that they can find the bug and that she starts improving. We will know more by about Thursday or Friday.

Tony Dewberry My hopes for Lynne never leave my thoughts. My best wishes to all your wonderful family at this very trying time. We live in hope.

Denise M Barker I know Lynne isn’t Buddhist .. I’m saying prayers anyway. They might work

KATH It’s your kinda day out here Lynne Sanders-Braithwaite. Time to come back now. xx

chris. Wish you’d just asked who cares about you rather than all that drama… if ever you had any doubt, just read the messages… now take your time, do as you’re told (well, most of it) and come back with all the cheek we know you for …So glad to hear from you…
Thanks, Kati, for always letting us know how Mum is, despite your own pain…

FROM PATRICIA IN PARIS

 

JENNY FROM BONDI

Oh Dear!!! I had no idea of your troubles Lynne. I have not been on FB for such a long time, so I didn’t know there had been no postings from you.Lynne you are one of a kind. I am so fond of you although we have never met. Please get well soon however at your own pace. We are all waiting for the return of our wonderful, beautiful Sage. Big Hug ♫ ♫ xxx

NEIL Getting tired & bored talking to myself, come back soon Lynne

PEARL : Okay folks have tried to bully you out of the sickbed, others have sent hearts and flowers and still you are in hospital. What about if I said I was going to hold my breath until you come back?

JULIA : Hello beautiful Lynne Sanders-Braithwaite… Julie came to visit you today… Held your hand and whispered sweet dreams and prayers to you… Come back to us when you are ready… You must need the rest sweetie… We will all be here when you do. Love from me

21 SEPTEMBER 2014 

KATI.

Hi everyone. Mum is awake. She is responding by nodding, turning her head etc as she can’t talk because she is still on the ventilator. Very frustrating for her but she is ok. We are so happy that she had reached this stage. The specialist seems very pleased with the way she has improved over the last day or two. They are thinking about taking her off the ventilator tomorrow or the next day if things keep going the way they have been. She is bloody amazing. Anything can happen at this stage but we are hoping for good things. Thanks again everyone for your kindness and support.

Kirsty Louise Bamback Bloody hell woman, about time!!! Has she been nagging for FB time ye

Karen Sanders Darby Great news so glad she is on the mend hope she is up and about soon for you all

Kirsty Louise Bamback That’s when we know we are hitting the smooth sailing scene 😉 I am so happy for you, Jim and the girls 😘

Steven Guy Smiling here

Marguerite Montes Very good news. I am overwhelmed. Lynne is amazing. Tell her we miss her. xxx

Kati Braithwaite Thanks everyone. She still has a long way to go. But definitely some positive steps.

Denise Head What a relief! You must be feeling wonderful Kati! x Great news!

Jeffrey Bibby Good onya Lnne made my day

Mary-Ellen Peters Kate… please pass on my love.. and tell her from me I said SPEAK to this and tell it to get the hell out of her body – Stat. xxx

_____________

Well there you go. No wonder I could not perish. I don’t think I have read these properly before.