Today is a day like any other: twenty-four hours, alittle sunshine, a little rain.Listen, says ambition, nervously shifting her weight fromone boot to another — why don’t you get going?For there I am, in the mossy shadows, under the trees.And to tell the truth I don’t want to let go of the wristsof idleness, I don’t want to sell my life for money,I don’t even want to come in out of the rain.– Mary Oliver
I actually got up today. I knew I was going to a meeting. So I got up and the ducks were on the loose. Then Kaybee and Clarz took me to Urunga and I got a meeting in. I am still teary and flat but somewhat better. I have Arkue and Ana is mobile and doing meetings so there is the possibility of a lift to other meetings.
In the meantime – these few days suck. I am unhappy and lonely and still lost. I do not feel at home and I like feeling AT HOME. BUT it is just the meantime. THIS TOO WILL PASS.
“Don’t duck the most difficult problems. That just ensures that the hardest part will be left when you are most tired. Get the big one done – it’s downhill from then on.”― Norman Vincent Peale
Common Long Term ProblemsPost Sepsis Syndrome (PSS) is the term used to describe the group of long term problems that some patients who have experienced severe sepsis can suffer during their rehabilitation period.The effect of any critical illness and spending time being treated in a Critical Care Unit is already recognised by health care professionals as causing certain long term problems for up to two years afterwards. However, sepsis can cause additional problems which may not become apparent for several weeks, for example, recurring infections during the rehabilitation period.THE LENGTH OF TIME SPENT IN HOSPITAL CAN ALSO AFFECT REHABILITATION.
I HAVE NOT FOUND MYSELF TODAY.
I am wearied and sad in an aimless off-handed way.
I suppose it is one of those ‘IN BETWEEN’ times. It reminds me of Tugun in 2002.
Bring me sunrises and views and birds on my verandah.
Bring me beauty and grace and dignity
Remove me from drunks and drug users.
Bring me to MY place.
Bring me to meetings and water and companions and a passing parade.
Bring me to the Children.
Bring me home.
And I shall finish with another Sepsis story. So many of us have suffered this way and are suffering.
This is Part One of my Sepsis Survival Story.
Hello, thanks very much for letting me join this group.
My name is Brian, & I will tell you my story in 2 parts.
I went into Hospital for removal of a gallstone in cystic duct & to have a plastic stent fitted, on Jan 6th 2017. There was a small perforation in my duct by mistake during surgery. This developed into Biliary Sepsis. I didn’t know what this meant at the time. At 39.1 degrees I didn’t know what was really being said to me, I was delirious. Having Severe Sepsis Infection, I was administered intravenously, directly into my veins, Antibiotics, Morphine, paracetamol, fluids & nutritional liquids. If there was anything else like anti-sickness I was not aware. I was told I had raised inflammatory markers, although I could not process a question to ask what it meant as I was drifting to sleep.
Whilst at my worst, I knew I was very ill. I remember getting ready to die. I realised I was not afraid of dying, I was scared of what I would leave behind. Very emotive, but true. I knew I had to be strong to survive and be positive, as I didn’t want to leave my wonderful Wife, family and rabbits behind, and this wonderful life we have, has to continue.
It wasn’t until I left the Hospital, that my Wife Nicky & I started research into Biliary Sepsis & Sepsis. We are shocked & cannot believe we were not offered any information, no aftercare offered, and not told to look for signs of re-occurrence, as this is a known Sepsis habit.
I was sent home with Oral Antibiotics. 5 days after the antibiotics were finished I started feeling ill again.
On the 20th January 2017 I went to Doctors. The Doctor I saw didn’t take any notice in what I was saying, and completely ignored the fact I had surgery 14 days ago. He didn’t want to know about the Biliary Sepsis I had just experienced. Instead he pressed as hard as he could, causing me to grab the inspection bed with both hands & arch my back rigid off the bed, the pain was stupidly intense. When I told him to stop pressing hard & to stop holding his hand down, on the surgical site, as he was hurting me, he just turned away, walked off and said he had finished the examination, I had to go as he was running an hour late and next patient was due. I didn’t even have my full appointment time.
I tried to get up but the waves of pain were too much, I collapsed back on the inspection bed. Dr Potts took no notice & didn’t help me. I used every ounce of strength to sit up on the inspection bed, I managed on the second attempt to sit on the edge, then I was sweating & swaying, feeling light headed. He saw this from his chair but didn’t help, he didn’t care, and he said I had leave. I told him I felt ill and about the worry & anxiety of the early warning signs of re-occurring Sepsis, and the symptoms I was having. He retorted examination was over. I left the room in considerable pain, everything I told the Doctor fell on deaf ears, I found him dismissive, ignorant and uncaring. My Wife was with me & witnessed it all.
The following day my temperature range was 36.8 to 38 degrees. My temp rising around 38 I was having an occasional shiver & a nasty thumping headache over my right eye. I felt stiff, my left shoulder very stiff, and my pain still very high in surgical area from previous day. We both knew these were early warning signs to keep a watchful eye on.
The next day temperature was spiking at 38 degrees & up and down again. I was losing appetite, picking at food, I was feeling extra tired, slightly nauseous in the morning, and I still had the thumping headache over my right eye. My temperature range was 36 to 38. I was drinking lots of fluids, about 4 litres of water, dosed up, but couldn’t shift the headache, which was starting to feel like a migraine.
Sorry for length of this story, it does need to be told. Part 2 will be in the next few days. It will start with a similar heading and will be dated Monday 23rd Jan 2017. Many thanks and good luck to all readers.
Bri Maze King ©
Another day has passed and one too flash. Pain in my side has become worse and I got Kaybee to get my script out of the chemist. That helped but has meant another day in bed and no meetings. I did have a long conversation on phone with Arkue and I have good food from town via Kaybee.
I also had an hour or so with my girls and now Facetime.That is it for today.
When her sister was in and out of intensive care last year, Theodora Peters noticed she no longer had to push so hard for information about her sister’s condition and treatment, or to stay by her bedside after visiting hours.”There seemed to finally be recognition that we were part of the team,” Peters said about the way the medical staff treated her and her sibling. “There was recognition we all needed to work together to get the best outcomes.”ADVERTISINGFor decades, hospital intensive-care units focused on facilitating the care provided by doctors and nurses to the gravely ill, while access was limited for patients’ families, partly so they wouldn’t get in the way. That’s beginning to change under a new approach known in medical circles as “family-centered care” that’s gaining traction in ICUs as hospitals look for ways to improve care and cut costs.
All these months of illness.
Much of the time I live behind a mental veil.
This week I am clear.
But much of the time there is a veil between you and me.
This week – I can push and pull.
This week I can stretch and bend.
This week i can coordinate my hands to wash the dishes.
This week some broken connection is working and I can look at something and know what to do.
I can open a door and close a door.
This week I can turn the key the right way in the lock.
This week I can write in sentences.
This week someone is holding the veil up for me
And I am clear.
as for the HAIR.
Does anyone know if you can go completely bald from PSS? Got my hair cut this week and for the first time ever, the hairdresser didn’t need to thin it…….she actually wasnt game to thin it.Charlotte I didn’t go bald, but my hair did think out drastically, and come out in masses.
But it has now grown back extra thick, and grows really quickly, which is good, apart from keeping up with the grey roots 😉Barbara It has been a year for me and I am hoping that mine will start growing and get thicker. So far it hasn’t happened.Annemarie Yes I lost lots of hear during the day and lasted until 6 months after my sepsis. I was told it was due to the high stress levels that my body was suffering from.Lynne Sanders-Braithwaite Mine is now so thick I look like a sheep.Libby That’s my usual. Ive paid a fortune to get it thinned all the time. I love it the way it is. Not sure about bald, although I could get a bright blue wig……make a change from grey….lolMoo Me too, 8 weeks after Sepsis in April 15 it started and thinned and shed until Nov/Dec. Fine now. It’s called Telogen Effluvium. Due to high CRP and infection . I’m two years post Sepsis now, aches and pains and forget names etc 😂 xxxLynne Sanders-Braithwaite Cool. Didn’t know what it was called. I shall throw that at the Docs as well when needed. Thank you kindly.
Mornings come in many forms now. The last 2 nights I have slept well and woken about 9 am.m. Then the thinking starts. My meetings are on 2 a week which is just not as many as I would like. I don’t have a car so I am restricted in where I can go and I would be restricted anyway as I struggle with the emotional state I am in. There are very few visitors , leaving me to long days alone and because this flat is underneath a house and at the back, I don’t have a passing parade or chats. I don’t see the sunrise or the sunset and the birds don’t seem to come down close. This is taking a good deal of adjustment for me.
The heat is building again. I have a meeting tonight – thank goodness and I just might ride the Pony to it.
You know – I NEVER think I do good enough. Afraid I won’t survive or take care of the ones in my care. Maybe I am OK. Maybe – its simply been the best I am and have been able to do.
I had a chance to do something today – but I didn’t do it.
So sorry I’ve been MIA. I’ve been EXTREMELY exhausted, among other things. Since having sepsis in September, I’ve been experiencing long episodes of struggling to breathe right, which have been getting worse and worse. My breathing gets irregular and I have to actually make a real conscious effort to breathe, else I feel like I’m going to quit breathing. I also feel lightheaded, dizzy, and like I’m going to blackout. My head goes in and out, if that makes any sense. I eventually drift off to sleep for a short while, but then I wake up startled from not breathing right. I finally called the ambulance and was taken to my local crappy ER late Sunday night, because my breathing had gotten so bad, it had reached a point where it was the worst it’s ever been. I had blood work ordered by a dr done Saturday morning, which showed a lot of abnormalities. One of the most concerning tests and subsequent results was my cortisol. My cortisol measured 1. something. Normal range is 6-30. I was experiencing breathing problems at the time and by late Sunday night, they’d reached an all time high. I didn’t know it, until I went to the ER, but I was having an adrenal crisis. The dr gave me a shot of 100mg of steroids. It really didn’t help much. I let them know that, but they discharged me anyway, even though I begged to be admitted. My oxygen kept dropping way too low, so the dr did say they were going to try to get me some oxygen at home, but didn’t send me home with any. I think the reason why is because I have crappy insurance more than anything, plus the fact the hospital is having financial trouble. Too make a long story short, my ER visit there was a nightmare. So, my Mom then took me to another hospital ER out of town Monday morning. It’s smaller, thus they have limited resources, but they’re so much nicer there.The Dr there gave me another 100mg of steroids through my IV and said if it didn’t work, then I was going to have to be intubated. It worked, but only about 40%. Thankfully, it was enough to keep me from being intubated though. My test results showed it brought my cortisol levels up, but just to 40, which is within normal range, but it really should have gone up much higher than that. I was told by the dr it was only a temporary fix, so I should double my adrenal medicine at home, until I can get in immediately to see an endocrinologist. Gratefully, I have an appointment February 8th or 9th, but it’s just not soon enough. I can’t remember the exact date and time, because I’m having really bad memory problems, but my Mom knows. The dr said with my previous diagnosis of hypothyroidism, but especially my hypoadrenalism, and having had sepsis in September, plus still feeling very ill since and the bad state my adrenals are in now, it appears as though I have now developed full blown Addison’s disease. The 200mg of steroids I was given feel like they’ve wore off now. It doesn’t feel like doubling my dose of my adrenal medicine is working very well either. I was just taking 20mg in the morning. Now I’m taking 20mg in the morning, plus 20mg at night. I feel like I have more damage from having sepsis than just to my adrenals and this is only the beginning of finding out what other damage I have. I just don’t know what else to do though. The dr said they didn’t have an endocrinologist that comes to the hospital to see in patients, but to come back, if I started having more problems. I’m still waiting on some more of my test results to come back, but based upon the tests and the results of them that have come back so far, they’ve shown I have a bunch of abnormalities. I really feel like I’m literally clinging to life here, but it’s so hard to get any dr to really listen to and help me. I truly feel like I need to be admitted to a much bigger and better hospital for a very, very thorough workup. I just can’t keep living like this. I feel like my body is shutting down, as if it just doesn’t have enough energy to keep going, even though all I’m doing is sleeping and when I’m awake, but only for a short while, all I do is go to the bathroom, get something to drink and maybe something easy to eat, turn on the TV and watch it a little bit. I hardly feel like moving, so it’s a struggle for me to even move to do anything. My poor Mom has such awful caregiver stress I’m trying to not add to it, but it’s so hard. It’s been almost 5 months now since I had sepsis, but getting to the bottom of finding out exactly what permanent damage it’s done, is proving to be a monumental task. Some of what my test results have shown so far is high cholesterol, high triglycerides, low hdl, borderline high calc ldl, high ammonia, low bun, low creatinine, high co2, low albumin, low tbil, low got-ast, low gpt-alt, low glom filter rate est stage 2 dec gfr, high c-reactive protein titer, low free t4, low tsh, low vitamin d 25, high rdw, high lymp%, high baso%, high abs lymph, high abs baso, etc. I’ve had other abnormal test results, but I just don’t have copies of them at this time, plus I’m waiting on other test results to come back sometime next week. I know what some of the abnormal test results mean, but I have no idea what they all mean. I can see my thyroid is struggling and I have a lot of inflammation, which I’m sure are contributing to me feeling so bad. Obviously, my cholesterol and triglycerides are bad, as well as my vitamin d, which I know aren’t good. How much they’re contributing to me feeling so bad though, I just don’t know. I sincerely apologize for my post being so long. It took me a long time just to write it. I have other issues/diagnoses which have came about too, since I’ve had sepsis, such as growths in both of my breasts that need to be biopsied then removed, growths in my uterus that have been found now, interstitial cystitis now, etc. I just don’t know what to say or do anymore to get the real help I need. I have all these blood test results abnormalities, plus abnormal conditions, which keep showing up, yet I have no idea what to do. I keep fighting to find any dr or drs to help me. I’m hanging on and trying to stay as strong as I can, but the struggles of just having to exist everyday feeling so bad like this and having to wait so long for any kind of help at all with one or another abnormality are very, very tough, especially when I know I need immediate medical care. If you’ve cared enough to read all this, I thank you very much. I sincerely welcome any feedback, insights, prayers, etc. I love you all, my sepsis family, who I hold very dear to my heart. I hope you are doing well. For those of you who are struggling too, you’re all in my thoughts and prayers, as always.
I almost gave up hope for recovering from my brain injuries after my test results came in. I went into a deep depression for a long time. It was the first time I wished I didn’t have a handicapped child, so I could just end it all. One day I was sick of being depressed all the time, so I started to work on assessing what the damage was and what I could do to ‘fix’ it. It took so long, but there was improvement, my kind of improvement. It’s pretty obvious I will never be the same, but I learned the way I fought to come back did make a difference in me…..so never totally take the word of doctors telling you what you can and cannot do. Never give up.
This guide contains advice and information about intensive care. It tells you how critical illness may be treated and what recovery may be like. Not every patient will experience all of these things, but they are more likely to if they have been in intensive care for more than a few days. Most of this guide is written for patients but there is a section specifically for relatives and visitors. By reading the guide, relatives will learn what a patient’s recovery may involve and it will give them the answers to some of the questions they may have.Recovery is often a long and slow process. To begin with, patients may not feel up to reading this information, so if you are a relative, please keep hold of this booklet and pass it on when the patient is ready.One of the scariest things about having a critical illness is not knowing what’s going to happen. This section covers many of the questions that patients and relatives often have following a critical illness. It tells you what may happen and where you can find out more information. Each section covers a different stage of the process of treatment and recovery.This guide has been written by people who have either been treated in an intensive care unit or are close relatives of someone who has. It has also been reviewed by a wide variety of intensive care professionals.