New and undiagnosed

Hi Sue
Still seem to be improving. Ct dec 9, pulmonologist appt jan 3. You know, the 2nd time I collapsed, I've now been researching sepsis since my nurse in the hospital I was sent to said it sounded like it to her. All the symptoms match. Shivering, freezing cold, undetectable pulse, low low blood pressure, restless legs, breathless. Kidney function dropped to 18%. (Its now back up). Does sepsis happen in Interstitial lung disease? The doctors still dont know anything but that critical care nurse said septic shock. Now I'm reading about the after effects of sepsis and that fits too! Fear of going out incase it happens again ( 1/3 of sepsis survivors end up back in hospital within the first year). And feeling an odd sensation and thinking is this me? Or is it time to go to the hospital again? Physical after affects that match mine. Stories of survivors that are parallel to mine. Do doctors not check for this? Or is sepsis just a given? My own doctor has diagnosed me with PTSD and recommended therapy. In this town there are waiting lists for therapists for months. I'm having to wait 4 months to see a pulmonologist! So when people say go see this doctor or that specialist? You cant just go. I wonder if the initial hospital stay in Aug was actual pneumonia. And it wasnt killed. I told them I didnt feel well enough to be discharged but no one listened. So home 2 weeks, it came back with a vengeance and brought sepsis with it. And almost cost me my life. Do you know much about septic shock? I do know once I got into the ICU they were giving me norepinephrine constantly. Thanks Sue!

Hi Yvonne, what I know about septic shock would fill a thimble...but the fear of "having it happen again" is familiar to me. I have had both scary heart symptoms that landed me in the hospital and a severe lung infection that has a 50-50 chance of coming back again. For a while after each event, every pitter-patter of my heart, or every coughing spell led me to "Oh, NO, not again!" The feelings eventually settled down, and here I am, still going 19 years after the heart scare & 5 years after the infection.

What helped me was some anti-anxiety exercises suggested to me by my primary. This was on paper (before widely available self-help on the Internet). Here are a couple of Mayo posts that might be helpful to you:
https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/tips-to-help-ease-anxiety
https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/11-tips-for-coping-with-an-anxiety-disorder
I find the breathing exercises and the meditation exercises work for me (follow the links - the blue highlighted words.)
Maybe these will help while you wait for the other appointments.
In the meantime, I see you are making progress - you didn't mention your pulse oximeter even once in this message - hang in there!
Sue
Sue

Lol!! I didnt mention it because at rest I'm a pretty steady 98 and I've been seeing 99 a lot!!
And I realized myself when I get doing things, I have a tendency to hold my breath! Moving I'm a cool 93 and that's great for me! Used to be 89. Its higher if I remember to breathe. So I put the oximeter away unless I feel really funny. 😁😁

After the 2 "pneumonia " scares, the 2nd one presented with septic shock. I was in danger of losing my life. After intubation, being transported to a big city hospital, undergoing a bronchoscopy and battery of tests (which were all inconclusive) they did a ct of my kidneys and found they were functioning at 18%. After I required less 02 and stabilized I was sent back to my local hospital where I was put on amoxiclav for a month. Released 0ct 2.
Despite sitting up for all meals, or being in a chair at their insistence I was not getting stronger. My breathing was awful and no way even with practice could I fill my lungs. Yet my cough was dry. I got the 6 min walk before discharge and all the RT said was "you dont need home oxygen and theres a code blue called so I have to go". The doc who did the bronchoscopy said nothing seemed out of the ordinary. He confessed to not knowing what was wrong. The only thing I knew was there was ground glass opacities on the ct. At home my lungs felt the same despite using the thing you blow into with the ball inside and walking to the bathroom - but really out of breath. After I walked to the kitchen I'd have to sit. I couldnt leave the apartment, the main doors were too far. Heart rate darted up with any movement and walking it was 130+. It frightened me so I basically stayed in bed a lot and became totally deconditioned. In mid November I had enough and pushed through the fear. I had flashbacks of my heart rate being 140 the night before I went septic and here it was again. I also incorporated some exercises from a video from a pulmonologist. That really helped! I did the exercises daily and walked more, did small chores. Now I'm out of bed about 85% of the day compared to 10% which was what I did for a month. I'm eating a lot of fish, chicken, veg, no salt, no sugar, healthy fats, and anti inflammatory food for gut health. Lost 50 lbs but because this "thing" took me down without warning both times, I want to lessen the chance of it happening again. They say 1/3 of sepsis survivors will have a repeat within a year.

Yvonne I just wanted you to know that you are recovering beautifully given what you went through. If I was your neighbor, I would take you out for a walk in the fresh air to relieve your anxiety! Can you find someone to walk with from your building?
Congratulations on the healthy diet. It will do you more good than all the supplements in the world.
Hugs! Sue

Sue it's amazing. I feel like I've been reborn. I went from someone who couldn't take much more than 10 steps and was pretty much bed ridden with lung issues and dyspnea to today. I put up the Christmas tree by myself, lights and most decorations. Except for vacuuming and washing floors I've resumed most of the housework. I still sleep with a cpap and a bed wedge because I'm a little heavy chested in the morning but almost no coughing or mucous. Everyday is an adventure! If its cold or raining I walk I inside the apartment building. I'm happy and amazed and really praying my life now goes forward and no more nasty surprises! Thank you Sue. I'm keeping in touch! ❤

Hi Sue. Good to know. Thank you for the information. Is there anything out there besides a vaccine to help ensure my body doesnt go septic again? And is the pneumonia vaccine safe for someone that's just had pneumonia- twice? Thanks again!

Hi Yvonne - you asked " Is there anything out there besides a vaccine to help ensure my body doesnt go septic again?" I would say good body awareness is your best defense.
According to the CDC, here are some warning signs:
What are the early warning signs of sepsis?
The signs and symptoms of sepsis can include a combination of any of the following:
confusion or disorientation,
shortness of breath,
high heart rate,
fever, or shivering, or feeling very cold,
extreme pain or discomfort, and
clammy or sweaty skin.

I would say, given your history, that if you have two or more of these start, or suddenly worsen, it's time to call your doctor right away for advice. That doesn't include just getting short of breath or high heart rate when you are doing chores - that can just as easily be from your deconditioning. But if you get hot or cold, sweaty or clammy or confused at the same time - "there's your sign."

Does a guide like this help ease your mind?
Sue

Yes it eases my mind, thank you! In my previous "collapses", I felt perfectly fine up until it was actually happening. Hardly breathing, shaking from cold, or everything was black as my heart rate/bp fell that fast. I keep thinking back and there wasnt an inkling this was about to happen.

A few co workers at our hospital said something recently. My lung ordeal began 3 weeks after my covid shot. Could that be the reason? And maybe why the doctors dont have a clue as to why it happened or what I've got?