r/sepsis • u/StArGaZeR-4_AnDy • 13d ago
Concern for Sepsis Vent/ rant/ cry
Just why is it All like this. I know this could be taken down if I don’t stay on subject so I will try. I have had repeated sepsis and staphylococcus aureus now, the 1st time I can prove, yes prove I had sepsis, well it’s a freaking story I just learned. I have chronic health issues and surgeries needed. I had an infection that started from a back stimulator. I knew I had an infection, red swollen, hot, just miserable 😭 I went in A lot to different hospitals, to different doctors, clinics no one listened. I was already a chronic walk in, I was put on palliative care. All this time only my boyfriend cleaned it. 7 months later. Luckily I had other infections so I was on some antibiotics. But TODAY, today I finally had been going back little by little into my chart. I found it the first actual sepsis test. I freaking get it, I had a severe heart attack it’ll be 3 years ago in September. I had my boyfriend drive me, I figured they’d send me home again, but I felt a weirder than normal flutter in my chest. We went in about an hour after telling them I thought I had had a heart attack, they took a sprained wrist back before me. I stood up dragging myself over and said “I guess I sprained my wrist too, can you take me back and tell me if I had a heart attack too?” They finally took me back sick of seeing me, I don’t remember much and or that rant is to much trauma, I had 2 stents put in and was in the ICU for 5 days. I had started wondering why I would have been in ICU for that. 2 weeks later they tested me again, I still had sepsis. No one informed me, so December I went to an urgent care for ear pain (dislocated jaw from previous fall undiagnosed) I collapsed. I had COVID-19 🦠great just what I wanted. 5 days ICU, 4 days regular room, I remember the second day wondering why the “WHO” DR was there and why he would be there for COVID-19, but I let it go I was delirious. Ya I had sepsis and again was never told. May the same year several strokes, seizures, yep you guessed it sepsis again. I mean uggg seriously. So I feel sick again 🫣 now what, they’ve just told me off for other health issues & they definitely won’t want to test me. I’m at a loss here, if I get lawyers I never get treatment that would matter anywhere, doctors don’t like hearing you have sued, the news? The hospitals get mad 😡 honestly this is rough. I feel like I have gone crazy or something. Everyone including these nurses who work with ALL these people are horrified for me, but that doesn’t help me. My local palliative doesn’t accept my medical anymore and my online palliative care can only do sujestions now without a local doctor on my side and no one wants me as a patient, “you have a complicated history”.
I do have a complicated medical history, but if they would read, write, test & input into computers I would be able to get out of bed, to feel safe going in to be tested, I have to write down positive tests with dates and times and have them confirm it on files. Talk about complications, I have memory issues since my strokes so this is very unpleasant 🥹
If you read this I’m sorry 😢 I know this will be deleted and I get it I’m a lot 🤕 when you had so many tests, they just stop reading them, not that they haven’t found issues, it’s they keep finding more before treating the last issue. Oh the joy of America’s health care
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u/heyguys8223 11d ago
I’m so sorry you’ve been going through all this! What tests did you have that confirmed sepsis? I am not aware of any one test that confirms sepsis as it’s more of a group of symptoms that defines it eg tachycardia, high/low temperature, tachypnoea, high WBC, elevated lactate etc. When they would send you home on oral antibiotics, what were they telling you the reason was for? I’ve been septic three times over the last 5 years, most recently just a few weeks ago, and I’ve never been told by a doctor “you have sepsis” but the diagnosis is there on my diagnosis list.
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u/StArGaZeR-4_AnDy 11d ago
I haven’t been told either. So the name of the test is called “sepsis lactate” or lactate that is a test I found can be missing or hidden. If you have seen different health systems it can make it easier to find in your chart. That is the test needed to show sepsis. High 4.7 was my last test I had I was critical. Never told what was wrong just told it was strokes, PRES, seizures & brain hematomas, 14 day hospital stay. No follow up or no treatment.
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u/heyguys8223 11d ago
Your lactate level being elevated doesn’t necessarily mean you have/had sepsis. A high level means that lactic acid is building up. There can be two reasons for this: 1) your body is producing too much OR 2) your body is failing to clear it fast enough. A high lactate level can mean a range of things infection, severe physical stress, poor blood flow/perfusion, kidney/liver disease or failure. You can find the sepsis diagnosis criteria online and if you can get access to your medical notes it should be fairly easy to match your vital signs/observations with your blood test results including neutrophils, lymphocytes, WBC, lactate all together to see if you did indeed have sepsis. No follow up after sepsis can be entirely normal. Many people do not have any follow up after said illness. I have never had a follow up after sepsis other than when I have a new infection I, myself, remind the treating doctor of my history of sepsis so they can keep that in mind when deciding antibiotics and such.
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u/StArGaZeR-4_AnDy 11d ago
Sepsis lactate levels of 4.7
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u/heyguys8223 11d ago
A sepsis lactate and a lactate level are the exact same thing. A high level doesn’t necessarily mean you have sepsis. Yes that level is very high. That means your cells are under severe stress and not getting enough oxygen. That could be for a range of reasons I’ve listed above. Without knowing what your other test results were it’s impossible for anyone, other than your treating doctors, to know if you were indeed septic. A high lactate level is one piece of the puzzle- it’s not the only diagnostic criteria. There is a range of criteria.
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u/StArGaZeR-4_AnDy 11d ago
Again i was positive for sepsis. I argue at doctors with health issues already. So thanks for your opinion. Goodness, I think I have it Again, not “if I had it”
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u/Ok_Pear3438 9d ago
Well you can’t be “positive for sepsis” as so many things cause an elevated lactate. However the order for the test probably said sepsis lactate, and you may have had it. It would be nice if a test was just a positive or negative for sepsis because that would eliminate a lot of the uncertainty around abnormal presentations, but that unfortunately does not exist.
Hope you feel better soon!
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u/Traditional_Car_8219 11d ago
You must be an incredibly strong person to have survived thus far but it’s no wonder why you called your post vent/rant/cry! I’m three years out from the day I went to the ER where a ct scan confirmed gangrene caused by a diabetic medication (Invokana). I should have been in agony but I wasn’t due to the fact that I had severe neuropathy leaving me with a 3x6 inch wound. I went into septic shock, lost consciousness and had three heart attacks, plus two surgeries. I never would have known those details unless I had been given a copy of my specialist’s report. All the best to you…