Hypoxia

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!

#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.

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?

#Asthma #Nucala #Anaphylaxis #Hypoxia #Biologics

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??

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?