My journey of 3 years and still no end
A post on the pain of #Scoliosis reminded me of my 3 year journey of non-#Diagnosis where it seems scolosis has played a part.
Now I am quite #Disabled with many different items, but I'm just focusing in on May 2019 and its aftermath.
An aftermath that is not yet completed.
In May 2019, amidst the height of covid, I was taken to A&E with what turned out to be a #pulmonary #embolism , causing my right heart ventricle to be swollen and my lungs damaged.
On blood thinners I joined the pulmonary #Hypertension and the lung clinics. Investigations of various complexity and risk ensued and the thinner is now for life as they could find no reason why I throw blood clots.
Lung function tests showed I had little breath and wheezed and panted and coughed.
But no reason could be found.
After 2 years my heart and lungs seem to have stabilised. No further inflammation or increase in damage. But still I have no breath.
At this point a consultant mentioned how low my #Oxygen levels were when I was flat in a scan and suggested I go to a sleep clinic to see if I have sleep #apnea .
I was duly sent for test 1. When considering the results, the doctor mentioned that my scoliosis was no doubt impacting my ability to breath.
I thought how interesting, especially as it seemed to be on the move, judging how tight and painful my muscles were and how my shoulder dipped even further.
Just fyi, adult scoliosis has no treatment. No steel corset. No operation. Just bear with it. And see an osteopath or sports masseur.
But still, my oxygen levels overnight are too low.
And now I am back at the lung clinic. To see if I have asthma. I am given increasing levels of a drug for over an hour to stress my airways and bring on asthma. Mine it seems is very mild. This is not the answer.
I have #Hypoxia but how is it caused?
No answer is yet forthcoming. 3 years on and still more clinics and yet more tests.
I admit to being frustrated and #depressed as my GP rightly says,by my health or lack of it. I wake up in the night again and again. My muscles cramp. I can't get comfortable. And get up in the morning slowly with no energy for the day. And no oxygen in my blood it seems!
It's all just too much
#TraumaticBrainInjury I got my first TBI 37 years ago. Had bad car accidents 6 & 8 years ago. People running stop signs.
I have car PTSD and around DV.
This past October I was assaulted by someone I was dating. I was on a vent for 3 days.
Because of the lack of oxygen I now have Hypoxic brain injury. The first 5 months after were terrible. My brain is broken, anxiety and panic all day everyday.
My brain was doing so much better. I was so proud of my self.
Second week of May I was admitted to the hospital with septic pneumonia. Got three breathing tubes on the right side so that one was doing better.
After 7 days I go home. Two weeks later back at the ER. Now it's the left lung which was a mess the first time I was there.
So that ends up being two more times I was hypoxic.
So TBI x2, PTSD, Hypoxia x3. I have had quite a set back brain wise. I'm angry, way confused, sad and really really tired. # brain injury, #PTSD , #CRPS , #DDD , #Fibro
My family thinks I should do more. Get out of my house. I'm having a knee replacement in March. Loads of health problems. My children are adults. Where is it they want me to go? I live on a fixed-income. I am happy at home. I pay my bills, get groceries, keep my grandbaby when asked. I have a home I'm comfortable in. I really don't have a clue as to where to go 😕. Did I mention compromised immune system? A pandemic is all around us.
Nucala and Anaphylaxis
Does anyone else take Nucala to control their asthma? I've been taken ng it successfully for years and sometimes it felt like it was the only thing really keeping me breathing. On Christmas Eve I had an anaphylactic and hypoxic reaction after receiving my injection. I'm so grateful to the nurses who responded quickly during my observation period, but I'm so scared about not being able to take it anymore. Has anyone else had a reaction like this and beeen able to continue Taking it or are there athoer biologics out there for eosinophilic asthma?
I feel alone. I am a divorced disabled mother of 3 beautiful teenagers. I became disabled a few years ago. At first I was diagnosed with FIBROMYALGIA. It started by me falling asleep at my desk at work every day. Then I had to leave my medical job and tried to work every other day as a nanny because after a 6 hour day of work I would have to rest and sleep in the bed the next day or I would get physically sick and weak everywhere. I would even lose my voice
Then it started everyday. My muscles got so tired and shaky when I walked. I went to a neurologist and found out I had idiopathic intracranial hypertension. Too much pressure on my brain, then I started going down hill. In and out of the hospital for pneumonia and staph on my lungs. My inmunesystem blood work was low. My legs face and arms would swell really bad and I would get cellulitis. I then started getting out of breathe. They performed a heart cath and said I had pulmonary hypertension and also chronic hypoxia. I got the swelling some what under control but now it's my brain. I get huge headaches in the back of my head. I also get dizzy if I try to stand. My vision is getting worse. I see double when I am reading and my back hurts in the middle. My doctors had to get the other stuff under control first before my head. I am now going to have 3 MRI S ANDgo to a neuro ophthalmologist to see if I need a shunt for my brain. ALSO NOW I HAVE TO SIT IN THE DARK 24 HOURS A DAY BECAUSE ANY KIND OF LIGHT WHETHER ITS THE SUN, TV, LAMP OR ANY KIND OF LIGHT my FACE AND ARMS GET REALLY RED, Hott to the touch and it feels like 3rd degree burns. Also when I stand up. No one can figure it our. MY DOC SAID I NEED TO GO TO THE MAYO CLINIC. I REALLY NEED HELP. I HAVE RAISED MY KIDS ALL BY MYSELF. THEIR DAD HASNT BEEN IN MY KIDS LIFE SINCE THEY WERE LITTLE AND I DO NOT HAVE ANY FAMILY. I AM MISSING OUT ON MY KIDS LIFE. IF ANYONE CAN HELP ME PLEASE??
Have you ever been treated as a non-emergency by Emergency Responders because of your preparedness?
Many people with life threatening chronic conditions know the difference in response time in an emergency can mean a quick treatment and stabilization vs permanent organ damage, brain energy, death sk we learn how to prepare like second nature mike our life depends on it because it does.
So for the non chronicle ill this might look like that well prepared soon mama to be who's got it all together, with her go bag and plan of care sheet.
My question is how do emergency services respond to your care?
I'm asking because usually fof me this makes things much smoother the emergency preparedness go bag means if I can't move ,If I can't speak all the information is there for life saving care to be provided.
But recently I had the most terrifying experience, instead of being provided the life saving care needed, I was greeted with statements from responders of "we can't help you if you won't talk to us" we can't takd you for help if you won't get on the gurney"
"sorry we're going to have to change busses at this parking lot, they can't start the football game because we aren't there"
I eventually got to the hospital Early enough for my Ver Good Doctor to record a stroke Too Late for him to intervene in the damage done by lesions due to hypoxia.
The Irony, apparently my completely preventable unselfinduced brain injury was too inconvenient for emt responders to stabilize because it was delaying the opening of a sport that causes how many completely preventable brain injuries to minor children every year?
PICS (Post Intensive Care Syndrome)
I’m not crazy!” I shouted. “I’m just…..tired.”
I had been sitting in the backyard of my rehab group home, talking to one of my caregivers. I was telling her about how I just felt like “ending it”, and she, being devoutly religious, took exception. I took exception to her response and well…
The point is: I was TIRED. Tired of being stiff. Tired of being sad. Tired of being incontinant. Tired of being confused, weak, contractured, forgetful, depressed, angry, out of breath, unable to sleep. And, yes, tired of being tired all the time. I was experiencing these symptoms as a result of my long period in the ICU and CCU and then bed-confined hospital stay, all with very little to no attention paid to my #MentalHealth, and only peripheral attention paid to my cognitive health.
Every year in Canada, over 200,000 people are admitted to the ICU. While the care we receive in the ICU for our acute physical afflictions is usually very good, our mental health and cognitive function are often glossed over. As a result, many people develop PICS.
WHAT IS PICS:
In 2010, the Society of Critical Care Medicine recognized the long-lasting dysfunctions related to critical care, and they developed the term Post Intensive Care Syndrome (PICS). PICS is a group of health problems that are a result of ICU internments and extended hospital stays. These health issues fall into three main categories: physical impairment, cognitive impairment, and psychiatric impairment. They begin in the ICU and can persist for years after, even appearing “out of the blue” after having left the ICU. 50% of patients who had sepsis, ARDS, multi-organ failure, or prolonged mechanical ventilation develop PICS. And yet, there are so few treatments and resources available to PICS sufferers in the hospital, let alone out in the community.
SIGNS AND SYMPTOMS:
PICS symptoms fall under three main categories: Physical impairment, Cognitive impairment, and Psychiatric impairment. Here is a list of possible symptoms:
• ICU-AW (ICU-Aquired Weakness)
• Respiratory dysfunction
• #Scoliosis and joint contractures
• Multiple falls
• Slow movements
• Memory loss
• Sluggish thinking
• Behavioural control issues
• Problem-solving issues
• Persistent delusional thinking
ICU-AW may be a result of deep sedation and prolonged immobility, as well as inflammation and infection. Prolonged immobility is also the likely cause of joint contractures that can result in life long #Disability. Mechanical ventilation may result in decreased lung function for months or years after release.
The main risk factors for cognitive impairment are sepsis, #Delirium, and ARDS. Other factors may include poor oxygen or blood supply to the brain, and a compromise of the blood-brain barrier.
It is more difficult to determine what causes psychiatric impairments in patients with PICS. Risk factors include sepsis, ARDS, #Hypoxia, #Hypoglycemia, respiratory failure, sleep pattern disturbances, deep sedation, prolonged immobility, and isolation.
The key to preventing and treating PICS is early intervention. The earlier, the better. Here is a list of methods and practices to prevent PICS:
• EARLY MOBILIZATION: Passive exercises while the person is confined to bed goes a long way in preventing joint contractures. Having the person sit, stand, and walk as soon as possible, even with a ventilator, is helpful in preventing ICU-AW and many other physical and cognitive impairments…
• HYGENE: Regularly bathing the person, washing their hair, and cleaning their teeth and mouth all help in improving their mood and self image.
• ICU DIARY: An ICU diary can help people record and sort through thoughts, emotions, delusions, etc. It can be a helpful tool in working with psychiatric and counselling staff to prevent psychiatric impairments
• LOVE AND ATTENTION: One of the most important things loved ones can do is simply be with the person. Talk to them, sing to them, read to them, play music, touch/massage them, listen to them, help them communicate with you, assist in their physio. All of these things can help stave off PICS
• NATURAL LIGHT: Light can affect our mood, concentration, decision making, and sleep, Making sure there is a window visible from the person’s bed and taking them outdoors whenever possible is important in preventing psychiatric and cognitive impairments.
• NUTRITION: Adequate nutrition is important in preventing physical, cognitive, and psychiatric impairments.
• PHYSICAL/OCCUPATIONAL THERAPY: Taking proactive steps can greatly help improve a person’s mood, strength, and cognitive acuity. The sooner they begin to take these steps in their recovery, the sooner they will heal, and the sooner they will be released, reducing the risks associated with PICS.
• PSYCHIATRIST/PSYCHOLOGIST: The earlier a person can work with mental health staff, the less likely they will develop psychiatric impairments
• SLEEP HYGENE: Controlling factors such as time of sleep, light, noise, and interruptions creates a better quality of sleep, helping to prevent cognitive and psychiatric impairments
• SPEECH THERAPY: Working on speaking, singing, facial muscle control, memory, and concentration help to improve physical, cognitive, and psychiatric function
Here is a list of things you can do to prevent PICS-F:
• Bathe regularly
• Get enough rest
• Eat regular healthy meals
• Keep a journal or diary
• Educate yourself
• Ask questions
• Seek counselling services
• Talk with other loved ones
NEED FOR AWARENESS:
25% of ICU survivors develop ICU-AW. Up to 80% develop cognitive impairments. 60% of ICU survivors develop psychiatric impairments that can last for years after discharge. And half of all ICU patients still require some care after leaving the ICU. While there are several options to treat the symptoms, there are still so few hospital practices and protocols in place to prevent PICS. Remember, the goal is prevention through early intervention. And for that, we need awareness. So reach out, share your stories, educate yourself, and pass it on. Knowledge and understanding may prevent someone else from suffering from PICS
#Gastroparesis #raynauds #Hypoxia #PVCs #Anemia . #pottssyndrome #EsphogusDismotility #GERD #hashimotos #Hypoglycemia #Migraines #ReactiveAirway #HiatalHernia #So MuchMore....= #autoimmunecringeworthy ... that's how I feel anymore.
Yet with still with so many saying I look "so great!!" on the outside (well meaning, of course,) it's a common thing said to me / people with an auto immune, Scleroderma, chronic illnesses.
But I find explaining myself now that my "problem list" is SO LONG that I almost feel like I AM the nightmare.
It's cringe worthy.
Anxiety producing, which is
I can't put my finger on the pulse of what I'm anxious "of" exactly, but the "feeling" is flat out horrible.
When I go to a specialist they want me to stay "in their lane" only = i.e. not discuss anything other than what they specialize in.... This becomes difficult when your disease affects so much (see list above) h
If I get told a new diagnosis, (like recently one of, #Gastroparesis ) after so many other diagnosis's, it wasn't so much surprsing or earth shattering as it was worrisome...
The conversation was short.
Will we ever talk about it again?
Is that it?
Do we move on?
Is it now another word on my list?
And I say that kindly as my Dr's are great. But you see what I mean?
He goes to another patient.
I have another Dr's appt.
Did that happen? Matter?
On the outside, I look exactly the same. Internally obviously "we" know the "drill"... I asked "is there a cure?" "no, no there is not".
But I get explaining this messy situation I am living or sharing it or talking about it to people would be probably odd.
But right now as I may be a #Auto ImmuneNightmare on the inside and appear ok on the outside. I'm actually feeling #Anxiety and #Uncertainty & I wonder about all the different diseases /diagnosis's progressions.
But I guess these #Thoughts come with the territory.
Thanks for listening.