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My H is in the hospital with sepsis.

Yes, I have broken the "common sense" rule and read online. It’s scary. He is not in ICU or anything, and they say he will be getting IV antibiotics for at least 2 more days. Making a total of 3 1/2 days in the hospital if all goes well. There is tons of infection in his foley.

A long story short...Urine looked clear till Wednesday. I took a sample to the dr for lab work and culture. Friday had a red face and abdominal pain. BP was REALLY high...242/134, 208/127, 227/128, 228/131, etc. Heart rate 82, 102, 100, 109, 87...etc. Mostly no symptoms other than red face and abdominal pain, but H can’t know exactly where in abdomen. Physicians asst. from dr office, the on call dr on Saturday, and hospice nurse/administrator all said to trust the symptoms, and not the numbers. Said they didn’t trust the BP numbers without stroke/heart symptoms like confusion, impaired speech/vision, etc. Finally Sat. afternoon he got a headache and was shivering so I just brought him to the ER.

Triage nurse said he had dangerously LOW blood pressure, high heart rate (159) and fever. He was diagnosed with sepsis.

I wanted to know what all I need to ask the hospitalist. We do not have results from the CT scan or bloodwork, other than a nurse slipping us a bit of info. He said there was infection all the way into the ureters / kidneys, and there are kidney cysts. Here are some of the questions I have. Can you tell me if they make sense?

-Does that mean he has kidney cysts and also, by the way, sepsis, or were the cysts caused by the sepsis?

-The online stages of sepsis...mild, severe, and shock...will they be able to know about that now? Do the answers come from the bloodwork?

-How can I catch this earlier next time? Hoping my niece/nurse can teach me to do a manual BP. (The Walgreens cuff doesn’t work so well due to my H’s contracture in his arms.)

-I screwed up by raising his head when his face started getting red. You know, "If the face is red, raise the head...". So, I guess that’s not always accurate? I guess a little knowledge really IS a dangerous thing. 😟😏

-Should we go back to using a new catheter every time? After insurance, it’s over $600 per month. Urologist told us it was not necessary, as long as I cleaned them properly.

-Should I consider a foley? I’ve always thought a continuous open line was a greater risk of infiltration / infection than intermittent cathing. Urologist supports intermittent cathing.

-Anything else I need to ask doctors?

Thank you.

[This message edited by WhatsRight at 10:00 PM, Sunday, May 22nd]

While I'm not a medical peep, I do have personal experience with having sepsis, and it is the sickest I've ever been in my life. It came on very suddenly and I had no idea what hit me. A few things:

1) Put your health insurance's 24/7 triage nurse phone number in your phone. They saved my life. My heart was racing around 140bpm and I just thought I was having a major panic attack (I have a history of these). When the fever came on an hour or so later, that's when I called her and she told me very calmly, "Ma'am, you need to get to the ER within the next two hours." This was at midnight, so I woke up H, not knowing why I had to go to the ER, but only telling him he needed to get me there. The rest unfolded from there.

2) If he is not in the ICU, they think he is relatively stable. If he starts to crash, you will know because they will transfer him to the ICU. I was never in the ICU, and I kept telling myself that. From working in hospice, I knew that sepsis had a high mortality rate, and I was terrified. This is why I kept repeating to myself, "Number4, you're not in the ICU; Number4, you're not in the ICU." I was temporarily taken off of my blood pressure medication because sepsis can cause a decease in BP, so they don't want to push it down further with meds. I was in the hospital for five nights. Did I mention that it's the sickest I've ever felt?

3) Hopefully they will get a good culture that allows them to identify the specific bacteria - this will allow them to tailor the antibiotics to his needs. They put me on antibiotics in the ER after they got back the results of a CAT scan (I'd had a hysterectomy seven weeks earlier and they suspected an abscess, so they knew what area of my body was suspect), but a day or so later, when they fine tuned the bacteria causing me so much grief, they changed the antibiotic. I also had a minor procedure where they drained the abscess and put in a tube to allow for more draining. I got the tube out the day before I left the hospital.

4) I came home with a PICC line in place (that they also placed the day I came home), and a visiting nurse came to the house the next day to show me how to infuse my own antibiotics every day. I wasn't thrilled with that, but it was the only way to administer this particular antibiotic. She was very thorough, and had me walk through the process with her, the next day when she came back for a follow-up. I think she came every other day to collect blood samples, which I appreciated because I sure as hell didn't feel like getting off the couch and going to a lab somewhere. But if he comes home soon (and I'll address this further down), you will likely need to administer some sort of antibiotics.

5) While the aches/pains, rapid heart rate, chills, headache, etc., all began to subside within three days, I was still a hot mess. I had no energy whatsoever. Just sitting on the bench in our shower to wash my hair was exhausting. I think H had to wash my hair for me. I was in fairly good shape prior to the infection - but this took everything out of me... much more so than the hysterectomy itself. It was months before I felt like I had my energy back again. I had a couple of follow up visits with the infectious disease doctor that my D drove me to, as she came in town to help out while H worked. I remember when we pulled into the parking lot of the medical building, and I saw that I'd have to walk about 75 yards from the garage to the entrance of the building, I almost cried. I had to stop a couple of times to catch my breath.

6) In the end, I survived, but it created a lot of medical trauma for me - I just couldn't understand how I went from fine, about 6PM in the evening, when we took our dog for a 2-mile walk at the dog park (again, I was way above the healing curve from my surgery), to having a heart rate in the 140s and feeling like I wanted to die six hours later. When COVID hit, and there were endless stories of people in the hospital feeling the worse they'd ever felt, I was terrified of the possibility of ever feeling that sick again. I mean, now often do you hear about people staying five nights in the hospital now? Full knee replacements are now outpatient!!! So I knew I was sick. You might need to really consider letting him go to a skilled nursing facility when he's discharged from the hospital. He will need the kind of intensive observation that you might not be able to provide, given your H's sleep demands. The social worker at the hospital should already be talking to you about this, so you can start researching various facilities.

7) If he was in septic shock right now, he'd be in the ICU. But yea, they probably have an idea of which stage he's in. However, that can change quickly, so they will continue to monitor him very closely. Is he in a telemetry unit?

8) You shouldn't have to rely on your niece to teach you how to do a manual BP. Your H's health care team should make arrangements with a visiting nurse to teach you how. This is their job.

9) Did I mention it's the sickest I've ever felt?

Hey What's Right - I just returned from a vacation to see this.
Please know that the diagnosis (dx) of sepsis is a commonly used diagnosis for any admission for infection.
I think you may have some confusion, bad UTI's, are commonly referred to as cystitis, which resolves when the antibiotics do their job.
His elevated HR is due to dehydration, and sepsis, and the elevated BP, I would definitely ask them to take manual BP not use the automatic machines. Those automatic machines often have difficulty giving an accurate reading when the HR is fast irregular, or thready.

While he is in there I would definitely ask for a Case Manger or Social Worker to help you with resources, in home support, and at minimum get HHC RN for a few weeks upon DC.

I had one person that I have cared for that was quadriplegic, with trach on trilogy vent, colostomy, feeding tube, and indwelling catheter. Full code per family request.

If he had an infection, usually UTI related to kidney stones, he would have autonomic dysreflexia, (abnormal overreaction of the involuntary autonomic nervous system to stimulation).

It caused changes in his heart rate, B/P, skin would turn red. All of this on top of the infection that was going on in his body.

This tends to happen in people with spinal cord injuries.

I would think that everyone has probably a cyst somewhere in our bodies and most don't cause us any problems until it does either by becoming inflammed/infected or bursts.

Oh, thanks so much for the input!

number4, what an awful experience! Thanks for sharing all that.

tush and jadedangle, thanks for your input.

It has been a weird couple of days.

My H is a hard stick, so lots of trouble finding a vein. Finally, in the ER, a paramedic with the help of an ultrasound machine got the stick. About 30-45 minutes later we noticed my H had a body builder right arm...due to the IV fluids infiltrating into the tissue. Lovely bruise about 4" in diameter. ☹️

Did a CT of his abdomen. Said there were cysts in the kidneys, but unrelated to the current situation. After 10 hrs, he got a room. Started IVs again. Put in a foley. I won’t put you through a description of what we saw coming through the foley tube. He has slowly but surely started feeling better. He has been very appreciative and gracious. 😳

Weird things have been happening. We get a different hospitality every day. (They don’t talk to each other!). The current one explained to me how a foley results in fewer UTIs than intermittent cathing. Every disabled person as well as every urologist my H has seen disagrees.

Today has been weird. Hospitalist (with thick accent and hard to understand) asks if he feels better. He say yes. She looks at me and nods and says that we can go home. 🙁. I ask if all the IV antibiotics are finished. That I cannot provide that care at home. She says she feels he could go home with oral meds. She asks again if we are ready to go. I say "yes, IF ALL the necessary IV meds are complete. She says she guesses she could check the notes. Comes back in and says, "Oh no, he needs at least 1 more 24 hours with IV antibiotics." Uh, you didn’t check prior to suggesting we leave?

So I go home to shower and check on the dogs. I get a call from our PCP’s office. Telling me that the culture we had them sent off for culture (last Thursday!) was a little "dirty" but absolutely no infection. 😳. I explained how wrong that was and how I knew. She was horrified. Not her fault. I am wondering who that lab sent to the hospital with a raging UTI they didn’t have!

Then had a CRAZY conversation setting up a follow up visit with urologist.

All in all, a super scary experience, and feeling very thankful it seems to have been a mild sepsis.

I’m anxious to talk with the urologist re foley vs intermittent cathing, as well as how to manage treatment for increasing frequency with UTIs.

Also, have found the place to get a manual BP cuff and stethoscope so I can try to get more accurate readings in the future.

All in all a scary yet blessed experience.

Any additional suggestions for how to proceed?

So, H is still in hospital. 🙁

The hospitalist came in 3 days ago I think, and said it turns out the lab DID run a urine culture, and - oops!- it turned out that the bacteria present is NOT sensitive to the antibiotics they have been giving him. So they started him on another run of IV antibiotics for this particular bug...for 7 days. (But they were only going to give him 3 days of the first antibiotics?)

She says he can go home with home health coming every few hours to administer the antibiotics through IV, but he would have to have a pic line. H didn’t want that.

I’m not even sure they did a culture. I think she is possibly making it up. When she couldn’t make me feel comfortable with using broad spectrum antibiotics without knowing if the specific bacteria he had was sensitive to it, I went to the "hospitalist office" to ask what to do. Didn’t besmirch her in any way, just ask how to be sure it is going to take care of the bacteria that he actually had.

About 30 minutes later she stormed into the room with hands on hips, asking me why I went to the hospitaist office. She was totally "my 💩 don’t stink" mad at me. I finally had to ask her to leave.

Since then she has told us that probiotics do not help the intestines after a LONG run of antibiotics, and that an indwelling catheter is much safer against infections than intermittent catching. Our urologist disagrees. We keep telling her and nurses that he hasn’t pooped since Sunday, and they all say, "OK".

They don’t want me to do any of the things I usually do when he is in the hospital...empty foley, turn him, etc. But right now, his foley bag is almost full, he has been on the same side for over 12 hours, and still no meds - script or OTC - for the constipation. 😡

[This message edited by WhatsRight at 5:13 PM, Saturday, May 28th]

Keeping you in my thoughts and prayers!

WhatsRight,

Hugs to you and prayers for your husband's recovery.

Not a medical professional but being a member here for years you likely know I had sepsis. Went into the ER in 2014 in septic shock, spent 10 days in ICU and months of recovery at home. I didn't even know I had sepsis while in the hospital, it was never mentioned. I only found out when I got home and looked through my file sent home with me. Never had heard of it and began researching.

Some have devastating lasting effects. I'm extremely lucky because my kidneys were failing in the hospital and BP extremely low. I have made a full recovery, the only lasting effect is I feel my handwriting hasn't been the same since.

Praying that your husband pulls through, but it will take some time for certain issues to subside. Make sure he has a good PC and specialists to follow up with in coming months. It is a horrible experience to go through.((((❤))))

MBB...

So sorry you had to go through that. My PCP (friend as well) always chastises me when I google anything medical. But I read that 71% of people in hospital with septic shock do not survive to come out of the hospital. Thank God you were one of the fortunate ones!!!

So, the latest...

The moron dr comes in yesterday morning and says that today...Tuesday...he will be able to go home. That it will be the 7th day of the new antibiotic. I ask if he will need to stay all day Tuesday to be sure to get the the full 7th day doses. She says NO, and counts off on her fingers 🤔 "Wednesday, Thursday, Friday, Saturday, Sunday, Monday, Tuesday - 7 days."

After she leaves I ask every nurse about it. Of course they won’t disagree with the dr, so I asked the current nurse, and she says she will text the dr and ask. Comes back and says we will receive the remainder of the antibiotics in pill form. Ok - as long as he gets all that he is supposed to get.

I go home to get a shower and the accessible van. Get a call from my H. They had just told him that we can’t go home today, because...wait for it...because he needs to stay today to get the full 3 doses of antibiotics in his IV...which will not be finished till 4:00 am. 🤬🤬🤬

I told my H to be grateful...that I have saved his butt 4-5 times this week by being a pain in the butt!

As far as the tests go, you should be able to access MyChart or whatever the EMR system they use to see all labs, and test results.
If his PCP is also part of that same network you can message and let them know your concerns about the ineptitude of the hospitalist, you can also ask for a new hospitalist to be assigned.

Also for HHC IV's you have to be willing to do those, and the RN's only come change the dressings, and assess the lines. They do NOT do daily infusions. So what the hospitalist told you is absolutely wrong. There aren't enough nurses to begin with, there is absolutely no way any company can send one out to your home 2 times a day to give IV's. Nope not gonna happen. But I can tell you that it truly is not that complex and you would be able to learn to do it. The other option in that situation is to go to a rehab center/skilled nursing to get them, and go home as soon as they are done.

I hope he got to go home today.

As far as the indwelling foley vs straight cathing there are multiple studies that show each is best. So it's a toss up. I have seen urologists in the same practice disagree on this topic. So if one way isn't working it may be good to try the other way. I just see a lot more opportunity to bacteria to enter into the urinary system with straight cathing, many more opportunities for mistakes. The indwelling foley gets changed monthly and a HHC RN will come to the house to do that under sterile conditions.

Yeah, it is totally a toss up. Our urologist supports intermittent cathing, so unless he decides differently, we will go with that. My husband prefers the intermittent cathing and I feel certain that he will be more likely to get up days when he doesn’t have a bag to contend with.

Wednesday morning we got another doctor… A REAL doctor… he answered questions intelligently! I almost hugged him!

I asked him about the Foley versus intermittent cathing. He said that he would really rather us get a final determination from the urologist.

This doctor actually told us that my H has a really bad bug. He said that the antibiotics he was given at first, plus the very strong antibiotics he was given for a week, should take care of it completely.

I told him that we were concerned about c-Diff and had started him on probiotics a couple of days ago. He said that was totally fine, but with this particular IV anabiotic‘s, it did not lend it self to c-Diff like some do. And then of course he reviewed the symptoms to us and told us to hurry back if we were concerned.

We are always concerned about that when IV anabiotic‘s are concerned because my husband‘s mother, after a stay in ICU with IV anabiotic‘s for bilateral pneumonia, came home from the hospital and had to go right back with severe diarrhea, etc. They didn’t figure out till a few days later that she had c-Diff, or at least they didn’t tell us. Anyway, because of her long time use of pain meds for chronic back operations and back issues, etc, she didn’t live.

Anyway, we got home yesterday, it was about noon, and my husband went to bed last night at about 10 or 11 PM! He has slept a good bit of the day today, but intends to get up when my son gets home.

I feel like I need to say that it was a positive experience. My H was very humble and appreciative, and even joked back and forth with me a bit. And when I needed to discuss the Foley vs intermittent cathing or other concerns moving forward, he actually contributed to the conversation.

I am still quite concerned over the diagnosis of "severe sepsis". Some sources say that 61% of people that leave the hospital with "severe sepsis" do not survive more than five years.

One day at a time. 🙁

They may have diagnosed as Severe but what he had was not severe.
Severe sepsis is ICU, with medications needed to maintain blood pressure, often with multi-system organ failure. They diagnose as such because he met criteria, and it gets the hospital a higher reimbursement from MCR, or other insurances.
Hospital stays are billed by diagnosis, and severity, and as an all-inclusive stay. The physicians are separate billing, but the actual hospital stay all care is essentially grouped under one diagnosis. So the higher the diagnosis, or severity the better they get reimbursed for it.

Thanks for the explanation, tush.

That makes perfect sense.

And makes me feel a lot better about the situation.