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. 😁😁

i used dessicated grassfed beefliver capsules (among many other supplements) to buil up my strength. 2 suppliers for New Zealand products. Really helped me feel better and stronger, which reduced m anxiety about the future.

gillysmom
Hi I'd be interested in learning a little more about that. Thanks!

Please use what you sense is helping and stop whatever doesn't agree with you. Add whatever you choose in stepwise fashion. Space out as much as possible. Do vtamins early in day. You don't want to be too hyped at night.
1. Beef Liver (Ancestral Supplements) increase slowly. I do 2 to 3 a day. Supplier suggests 6/day.
2. OLLY prenatal vitamin gummies (Walmart) I take 2 to 4/day
3. Vit C I use patchaid C + patches and double (2/day) (easier on my stomach than the liposomal Dr. Mercola C, which I also use
4. NMN any brand, double or triple dose
5. D3 +K2 Patchaid, double
6. Taurine (Now brand) + boron 3mg (any brand) times 2/day spaced out empty stomach
7. Vit B 12 patch (Patchad) double patch/day
There is much more, but try whatever you think may be helpful and then get back to me. Watch out for any discomfort and immediately slow down or stop using. Please keep in touch to let me know if anything seems to be helping. I was Modrna vaccine injured and went from not being able to hold my head up in bed to the ability to stay awake and upright for as long as I wanted to. Nap days followed doc appointments. I'm 90 yo, on crutches. What are your specific symptoms? I hope you feel better soon and can once agan enjoy lfe.

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.

Ancestral supplements has a blood/spleen supplement that could be helpful n your healing. if you think there is still the ossiblity of blood infection, I would start really slow, maybe a capsule every other day. If you sense a benefit, increase to 1/day for a while, and then follow your intuition. Also if you still have any chest, breathinng problems that aren't improving on their own with good diet and exercise, nebulzing colloidal silver is a noninvasive way to help your immune system (Sovereign s
Silver 10 ppm). I have more supplement suggestions to help you, but I THINK SUPPORTING YOUR OWN ONGOING RECOVERY is best. Slow use of addng supplements so as not to irritate your stomach with too many supplements, or overwhelm your strengthenng immune system is important. You are doing amazingingly well ovrecoming a Serious Health Challenge. Good for you. Blessings.

I must ask, what are Ancestral supplements and what is colloidal silver? If its nebulizer, do I need to buy a machine? Are they even for sale? And yes I'm terrified of sepsis returning. It was a nightmare through which I was conscious. I will do just about anything to avoid that again. Also conscious when they put the central line in my neck. Just even watching a tv show where I hear a heart monitors bells or the noise it makes when your 02 goes below 88 sends me into a panic!

@yvonne55 and @gillysmom, please note:
According to Dr. Brent Bauer from Mayo Clinic says "Colloidal silver isn't considered safe or effective for any of the health claims manufacturers make. Silver has no known purpose in the body. Nor is it an essential mineral, as some sellers of silver products claim."
You can read more in this article:
– Colloidal silver: is it safe? https://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/colloidal-silver/faq-20058061

When it comes to supplements and complementary medicine, I always refer to NIH's National Center for Complementary and Integrative Medicine to better understand the proven evidence. See this information:

– Colloidal Silver https://nccih.nih.gov/health/silver

The first section of the page states: What’s the Bottom Line?
How much do we know about colloidal silver?
There are no high quality studies on the health effects of taking colloidal silver, but we do have good evidence of its dangers.

What do we know about the effectiveness of colloidal silver?
Claims made about the health benefits of taking colloidal silver aren’t backed up by studies.

What do we know about the safety of colloidal silver?
The U.S. Food and Drug Administration (FDA) has said that colloidal silver isn’t safe or effective for treating any disease or condition.