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This regards my husband…

I may have shared before that we have seen the same PCP for about 35 years. He retired last year, and we are less than impressed with his replacement.

Also, we changed urologist for my husband due to location, and I actually didn’t really care for the other urologist.(I guess we’re too finicky.)

And… Because of his repeated UTIs, we have added an infectious disease doctor from the hospital into our "inner circle".

And, we have Home Health that comes out to the house.

So, these are my questions…

- Who orders a urine culture?

My husband gets these so often that they come between appointments with any of these doctors. What has been happening I think is that my husband tells the home health nurse about his symptoms, and she takes the urine in for culture. There are ALWAYS over 100,000 gram positive readings. (Am I saying that right?) I’m trying to get this clarified, but I also believe that she then has the results of the culture sent to the PCP, urologist, and ID doctor. Is that "proper" protocol? Our Home Health nurse is very eager and willing to get my husband what he needs, and is willing to do whatever it takes. But I don’t want her to be reprimanded for sending in urine for a culture without a doctors order, if that’s an issue.

- Who will be the doctor to actually decide whether or not the infection will be treated, and if so, with what medication?

It’s our understanding that our urologist defers to the ID doctor, if the infection is either questionable, or definitely needs anabiotic intervention. But I’m not sure how the PCP is involved. The PCPs office called this morning and wanted to know who ordered the urine culture. So if it is the PCP who is supposed to place the order, then it sounds like he’s got his panties in a wad about this.

We are in the process of my H becoming a patient of a nurse practitioner who comes to the home (with MD oversight). Amazingly, she also also does palliative care. We are waiting to be called by her to get H set up with her.

- Once we are with the NP, who comes for home visits, hopefully this will take our new/current/unimpressive PCP out of the mix. But does that mean that the physician that works with the nurse practitioner would need to be the one who diagnoses/prescribes antibiotics for these weird bacteria that he gets so often?

We want the infectious disease doctor to call those shots whenever possible. I just don’t know how all this works together.

The ID doctor certainly would not serve as a PCP because of her specialty, but a PCP does not have the specialized training for the kind of infections in the situation. My H is in.

I’m beginning to get the sinking feeling that the seriousness of my husband’s condition might be an issue concerning what infection the doctor chooses to treat. I worry that whatever doctor is in charge of choosing what to prescribe and when not to prescribe might be somewhat influenced by what would keep my H alive the longest. But that is not his first consideration. He wants to live as long as is possible, of course, but not if he will be miserable.

We have been trying to get palliative care for a few months now, but our hospital has only palliative care providers who work with patients while in hospital. And since our home health nurse has found this nurse practitioner whom she has a great deal of confidence in, and the fact that she does palliative care also, AND comes to the home, that seems a perfect fit. Waiting, waiting, waiting to hear from her.

We understand that hospice is an alternative at this point probably. But my husband has determined that he wants to continue to treat these bad infections, and while basic UTIs can be treated with oral meds while in hospice, the type of meds required for his infections…usually IV…are not allowed with hospice.

So, I’m just trying to untangle / understand how all this works together, while honoring his wishes.

Sorry this is so long. Did any of that make any sense?

Who is managing or sendinng orders for HHC? That should be the physician that orders the culture. If the culture is positive then a referral would be made to ID to offer input on tx, but only if the cx/sensitivity did not have a good option to treat.
Usually the HHC companies go through the PCP for their orders. That has more to do w/ reimbursement from insurance, as under MCR guidelines the pt needs to have been seen, w/in 30 days, or w/in 14 days of discharge.

So the RN should be able to get a specimen, and call for orders.
If the PCP doesn't respond quickly, then would call Urology for the orders.
I would also ask the Urologist if they can keep a standing order for UA as needed for any changes, many will put a standing order in w/ your lab of choice.

Who is managing or sendinng orders for HHC? That should be the physician that orders the culture. If the culture is positive then a referral would be made to ID to offer input on tx, but only if the cx/sensitivity did not have a good option to treat.

This last time the home health nurse was talking to the PCP physician asst. about something and while she had them on the phone, she asked about the culture. I think.

The thing is, the ID doesn’t necessarily want to treat every infection. Also, prescribing for my H is tricky due to the frequency and complexity of infections.

the pt needs to have been seen, w/in 30 days, or w/in 14 days of discharge.

Well, after the most recent hospitalization, we did set up an appt with PCP, but H was in too much pain to go. I wonder why in the world can’t the home health nurse jump in there?

The idea of standing orders for a urine culture is a GREAT idea…thx.

The treating physician had to establish the treatment plan (or plan of care) for the RN to follow. The RN can can assess, but not be in charge of treatment.

The treating physician while he was in the hospital? That would be the infectious disease doctor.

Or our primary care physician?

The Home Health RN should know who is the managing Dr.

That has to be signed off on before they ever come to the home.

[This message edited by tushnurse at 1:19 PM, Thursday, June 22nd]

I’m not sure I’m thinking clearly to even know how to properly answer these questions. I’m so very angry. And feeling helpless.

The present situation is this:

– my husband has had a pretty nasty UTI for the last two WEEKS.

– The home health nurse spoke to I think the physicians assistant at our primary care physicians office who gave a verbal approval to get a urine culture.

– It has been 10 days since we got the results of the urine culture.

– The bacteria present in excess of 100,000 g positive are Providencia Rettgeri + Morganella this time.

– Our primary care physician office has called to ask who approved the culture. That seems to be what they care about. They have the results, but have not made a move toward attempting to address it. Don’t know that he would even know how to address it compared to the ID doctor.

– The urologist also has a copy of the results but we have not heard from him either.

– The infectious disease doctor, whom we very much like and trust, she has not responded either. I found out today after multiple calls to her office this week from myself, and the home health nurse, that she has been the only ID doctor at the hospital all week and has had no time to return her messages. We very much want HER to be the one to determine what antibiotics he should be on.

– We have been waiting for weeks for the palliative care/nurse practitioner, who comes to the home, to follow up with us regarding becoming her patient. Crickets.

So, in short, the PCP and urologist have had hardly anything at all to do with any of my husbands approximately 10 hospitalizations in the last year regarding UTIs… Antibiotic resistant UTIs.

We want the infectious disease doctor to handle this, but can’t get in touch with her.

We want the nurse practitioner who comes to the home to be involved because she is also palliative care, and could help my husband while he is in such terrible pain with this untreated UTI.

Hospice will not except my husband at this time, because he is chosen to aggressively treat these UTIs, which is not allowed in hospice. That’s not the focus of hospice.

We also do not want to go to the hospital, which is usually the suggestion when we can’t get any results anywhere else. But the infections that he has now are hospital acquired infections and we don’t want to go there unless we absolutely have to.

We are wanting to get a picc line inserted outpatient status, so we can infuse the anabiotic’s at home. But we haven’t been to our primary care physician since the hospitalization, and we can’t get in touch with the infectious disease doctor. And those are the two doctors that we know of that can arrange for an outpatient picc line procedure.

We can’t seem to buy a break.

Stop.
You absolutely need to go back to the hospital. They will get an IV in and start treatment. Does the ID dr have an office of only do treat inpt?

He needs care, now, w/ a UTI, and sepsis, he needs to be treated. I would also recommend that you NOT leave the hospital until you meet w/ palliative care, and have a plan in place for moving forward and treatment.

If you were a pt of mine I would be offering to call an ambulance now. Do not wait.

Thanks Tush.

I called the ID dr at 4:30 and finally got her nurse. She said the dr was the only ID at the hospital this week, so she was not seeing any pts in office. Only hospital.

She said there was no such thing as "emergency" picc line placement and even if there was, it could take days. That the best thing we could do is just go on to the ER.

So we are here.

They are doing a CT of his belly. Since they already have the results of a recent culture, they can get him on IV meds quickly. Luckily, the bacteria that are causing the trouble are sensitive to a lot of different meds. They are also going to do another urine culture.

Hopefully oral meds will work. If not, hopefully they can get him started on the best meds IV then place a picc line and we can infuse at home.

The palliative care Dr that sees pts at the hospital sees them ONLY while in the hospital.

I will speak with the home health nurse and get the information re the nurse practitioner/palliative care and see if that can be arranged from here. Good idea.

I'm glad he is getting the care he needs.
I'm sorry you are struggling w/ this. I would have a frank convo w/ the ID Dr, and find out if there is a way that you can communicate w/ her until this whole thing is under control.

Your PCP/Urology team failed you. As soon as that culture was done they should have contacted you about what abx he needs, and if he needs to be on IVAB's, and is should NOT take more than a day to schedule outpatient with IR to get a PICC placed.

Yes, I will definitely be asking about future game plans. Who is point Dr and exactly how decisions are made. I’m hoping ID will be on point with consult going to PCP (NP hopefully) and urologist.

Trying to get rid of PCP in lieu of NP / palliative care professional coming to the home.

I was wondering about that… why I was beating the bushes for a treatment plan, but urologist has never even called. (Maybe because we are working with the ID dr the urologist has just taken a step back?). And and when the PCP office called, all they wondered was who ordered the culture. WTF? (I asked the home health nurse about that, and she said the PA of the PCP gave an oral order.) 😖

Regulations are important - especially in healthcare. I’m a rule kind of girl. But, come on…when it interferes with actual patient care it becomes ridiculous.

JMHO

They started Zosyn in the ER but (by order of our ID dr), have switched to Meropenem.(sp?)

Hey, while I have medical professionals’ ears, H has been experiencing a "new pain" in his mid abdomen. Not like a bladder burning. Not like the nerve pain. Granted my H’s ability to "feel" is compromised due to his SCI, but he describes it as feeling like something is stretching across his abdomen. Like a rubber band.

Since he has a neurogenic bladder, I was wondering if this might be something similar involving his intestines. Or maybe having to do with spending so much time in bed. But it seems if it is a muscle stretching, fact that he lies in the bed most of the time would prevent it from feeling like it is stretching. oh well, when he asks doctors about it, they just shake their head.

As far as the new pain, is he moving his bowels regularly, is he getting diarrhea, or backed up?
Does he have any back issues that you are aware of that is causing some pain due to being in bed?

Well, a few updates.

The ID doctor finally came in. She apologized profusely. Said she never knew that we were trying to get in touch with her all week. That she had been the sole ID doctor at the hospital. She changed the anabiotic they were giving my husband from Zosyn to Mirapinum. She said that the bacteria he had was definitely not sensitive to Zosyn.

She said that she has decided that he needs a picc line again, that they would probably put it in Sunday, and that this time she was going to blast him with anabiotic’s for about six weeks. I’m concerned about cDiff but I trust her. When she walks in the room, I feel relief that she’s there.

The other interesting bit of news is that I have been sick as a dog today! Unbelievably, horrible stomach cramps, drinking magnesium citrate, throwing my guts up, then, about 10 hours of… well, you know…

Happy Birthday to me!!! 🤪

[This message edited by WhatsRight at 7:32 AM, Sunday, June 25th]

That sounds awful WR. Feel better soon!!!!

Happy Birthday!!!! 🌺

Finally, the hospitalist gave my H a muscle relaxer and the pain in his abdomen went away! I was home sick, but he said he slept 12 hours straight I was elated. Then the next day…hurting again.

Hospitalist did a blood culture to be certain there was no infection in his blood. Turns out the bloodwork showed a staff infection. But he said that he does not believe it is a blood infection so much as a contamination from his skin at the place, where they drew the blood. So he ordered a second blood lab and we are waiting on the results for that. The plan is that H will get a pick line maybe today, if the blood work turns out clean. However, now, he is "stopped up" again. Before we went to the hospital, he was going to the bathroom every other day. But he has not been since Thursday morning now. I was beginning to feel really bad last night, so I came home to sleep. I hope they were able to help him "go" last night.

He has a dental appointment on Thursday to "fine-tune" the upper denture that he is having made. The hospitalist told us yesterday that we should probably postpone that appointment. The ID doctor did not feel that he would be in quite so long, but I don’t think she knew about his gut being blocked.

And so we wait.

I guess it wouldn’t be me if I wasn’t concerned about SOMETHING. But this latest birthday has made me realize that I’m slowing down a bit. I’ve been worrying the last few days about how many more times we can get to the hospital and come home with different instructions about more things that I need to monitor/take care of, and if I will be able to do it. I’m trying to have the point of view that I will just continue to try my best and whatever happens is going to happen. But being a control freak, that’s not an easy thing for me. The idea of 6 weeks of infusion at home is daunting - not the effort, but the idea of that many opportunities for infection.

My husband’s tiny little hometown is planning to honor him before too long. I am praying that nothing else goes wrong before that time to keep him from attending.

In the meantime, since my little bout, with my own belly issues, a couple of days ago, I have been afraid to eat. Yesterday I had a banana, and aside from some belly cramping, it didn’t seem to affect me too badly. But I am just not looking forward to starting to eat again. (Which is very unlike me!) Maybe I’ll lose some weight.

In the past, about once every other year, I go on a 10 day, fast, only having water, and then juicing some fruits and vegetables. Maybe I could do that before starting to actually eat again. Hard to say if the other day was an outlier, but I was literally laying in the floor screaming. Today I am noticing that even to get up out of bed, my whole midsection is sore as if I had done 1000 sit ups. I guess from throwing up so much.

Welcome to the 70s! 😏

[This message edited by WhatsRight at 11:49 AM, Monday, June 26th]

Vomiting is very hard on the body and does pull abd, and back muscles.
Be kind to you, drink plenty of fluids, take some tylenol (acetaminophen) and eat some bland foods.

Staff exists on all our skin, so I would guess that it was a contaminant. Repeating to make sure it is clear, is standard protocol prior to putting a PICC in. Less chance for infection. PICC's are used because there is a very low risk of infection as long as the insertion site is kept clean, and dressing intact.

In the future I would ask them to institute a bowel protocol on admission. It is inexcusable that this isn't done upon admission for a paralyzed individual. Glad the muscle relaxer worked on the abd pain issues.

Bowel management upon admission is awesome. I think they try. They put him on 17g Miralax 2x per day. Then if too much time passes without result, they add a suppository.

I like the hospitalist we have had for a few days. He believes the ‘elastic band’ feeling is nothing more than a slow gut and gas.

We will up the Miralax at home. He said up to 3 ‘results’ per day would be ok. If that is our future, we will buy some stoc in chucks!!!

Is grumpiness a side effect of Meropenem anabiotic?

Lord have mercy!

I’m just saying’.

Oh, we got it set up for H’s sister to get some reimbursement for sitting w/husband if I run errands, etc. That will help both of us.

Have H signed up for nurse practitioner who comes to the home monthly, and her overseeing dr comes once a year. No more twirpy PCP. 🙌🏼

Meanwhile, I’m totally sleep deprived.

4am Set out med ball out of fridge
6am. Start infusion
7am. Unhook med ball (infusion complete

12pm. Set out med ball
2pm. Start infusion
3pm. Unhook med ball

8pm. Set out med ball
10pm. Start infusion
11pm. Unhook med ball

Now, granted…each step is berry brief…5-10 minutes. So not much time out of my day.

But I’m not very good at getting back to sleep, so I haven’t slept more than 3 hours at a time in 3 weeks. 3 more to go. 😏

And now, my knee…the one without the knee replacement is acting up so much I’m having real trouble walking.

When it rains…..

Yay for setting up H's sister to come sit with him and home visits with the NP!!!

Any way someone can cover the first or last shift of the infusions? I'm with you, cannot simply fall back asleep once I'm awake! At least you're halfway through!!

When are you getting your knee replacement done?

Don't meant to t/j, but how are your boys doing? Haven't heard about them in awhile.

lt