Doctors are confusing sometimes

[El...]

Oh, Melissa! I'm so sorry! Good grief. I wonder how much that's adding to your symptoms. 

[Melissa in Australia]

I don't have any covid symptoms, no sore throat, no runny nose, I have even been fever free for 2 days. 

I have had multiple covid tests while in hospital and they all were negative. 

[Melissa in Australia]

Maybe I just got it?

[Ditto]

Good grief!  The Universe seriously needs to crawl off your back and give you a GIANT break!

[EKS]

9 minutes ago, Melissa in Australia said:

I don't have any covid symptoms, no sore throat, no runny nose, I have even been fever free for 2 days. 

I have had multiple covid tests while in hospital and they all were negative. 

Are you on prednisone?  That can alleviate covid symptoms.

[freesia]

Oh, no, Melissa! Praying for you here. 

[mom31257]

Oh no!! I'm so sorry you have so much going on. 

[BusyMom5]

Oh no!  Hoping Covid I'd over quickly and you can get the right medical care!  This is so scary.

[Melissa in Australia]

5 minutes ago, EKS said:

Are you on prednisone?  That can alleviate covid symptoms.

Yes  100 mg a day

[EKS]

Is it possible that this whole thing was actually a covid infection?  That would explain why it happened so soon after your son was in the hospital.  Also, it appears (in my very limited search) that covid can cause lung anomalies in PET scans.

Edited August 11, 2023 by EKS

[Melissa in Australia]

3 minutes ago, EKS said:

Is it possible that this whole thing was actually a covid infection?  That would explain why it happened so soon after your son was in the hospital.  Also, it appears (in my very limited search) that covid can show lung anomalies in PET scans.

I have been tested many times while in the 4 hospitals I have been in . I have been in hospital for nearly 3 weeks. I was negative when I had the lung biopsy. Was tested twice that day. That was just a week ago. 

The ward I was in up to yesterday was beside the covid ward. 

Edited August 11, 2023 by Melissa in Australia

[EKS]

2 minutes ago, Melissa in Australia said:

I have been tested many times while in the 3 hospitals I have been I . I have been in hospital for nearly 3 weeks

I know, it's a long shot...

[wintermom]

So sorry to hear this! It just sucks big time.  My mom got COVID in hospital, too, while healing from a broken hip. 

 

[Jaybee]

That is so discouraging. I'm sorry, Melissa. Thinking of you and praying for you.❤️

[cintinative]

I am so, so sorry. I hate that your progress toward a diagnosis is being delayed by Covid, and that you have Covid when you already feel so very awful.  

[bookbard]

I'm so frustrated for you. Not surprised - with a lengthy stay you're almost guaranteed to catch something in hospital, which is why they were trying to get you home - but so frustrated. I do also wonder about whether you caught something in that very first hospital visit, something fungal. 

I really hope this passes quickly and they're able to work out exactly how to treat you. It's so hard. We're all thinking about you. 

[Ausmumof3]

I’m so sorry. Hospitals really need to sort their infection protocols around Covid 😞 

[EKS]

9 hours ago, Melissa in Australia said:

The ward I was in up to yesterday was beside the covid ward.

Yikes!  That seems like the last place that someone with lung problems should be.

Edited August 11, 2023 by EKS

[Catwoman]

I don't know how I managed to miss this thread until right now, but I'm so sorry you're sick, Melissa, and this extra Covid diagnosis on top of everything else is just horrible! 

Can you get them to transfer you to the specialty hospital anyway? It would seem like with all of your symptoms and weakness, plus the added stress of Covid on your body, you would need to be in the best possible hospital. 

Praying for you!!!

[Catwoman]

On 7/24/2023 at 8:32 AM, YaelAldrich said:

Oh my goodness! These kind of symptoms are exactly what's happening to my friend right now.  https://ancavasculitisnews.com/what-is-anca-vasculitis/#:~:text=Symptoms of ANCA vasculitis&text=Symptoms include the presence of,%2C fatigue%2C and respiratory problems.

Wow, I wonder if that could be it! I hope your friend makes a full recovery!

@Melissa in Australia, has your doctor ever heard of this?

[sassenach]

That's ridiculous. We transfer and treat people with covid all the freaking time. I'm very frustrated for you.

[Melissa in Australia]

I am so weak now that I could hardly stand and pivot to get onto the commode to be taken to the bathroom. 

I am so teary today. I can't stop weeping. 

[Catwoman]

Just now, Melissa in Australia said:

I am so weak now that I could hardly stand and pivot to get onto the commode to be taken to the bathroom. 

I am so teary today. I can't stop weeping. 

I wish they would be able to get you transferred to the better hospital so hopefully you would be able to get some answers (and the proper treatment) quickly.

It's horrible to have to keep waiting and not knowing what's wrong. Of course you're crying. I don't know how you have managed to stay so strong through all of this. 

I wish we could all come over there and give you a hug and take turns staying with you.

 

[freesia]

27 minutes ago, Catwoman said:

I wish they would be able to get you transferred to the better hospital so hopefully you would be able to get some answers (and the proper treatment) quickly.

It's horrible to have to keep waiting and not knowing what's wrong. Of course you're crying. I don't know how you have managed to stay so strong through all of this. 

I wish we could all come over there and give you a hug and take turns staying with you.

 

That’s exactly what I was going to say. I hope you can imagine our virtual hugs, Melissa. We are here for you. 

[Harriet Vane]

Aww, Melissa. I'm sorry it's so hard. I'm sorry that idiot hospital is not doing better. I'm praying for you. If I were not half a world away I would seriously come sit at your side. 

[Melissa in Australia]

Nobody is allowed to sit at my side, am in full isolation. I think the door is taped shut. 

Even the doctor wouldn't come in today. 

I don't have a single covid symptom. They shifted me yesterday into rehab as a holding room for the transfer. I think they are thinking now that was a mistake. Apparently someone in the ward I was in, oncology, has tested positive. They just covid tested this whole ward. But they wouldn't retest me. 

[Melissa Louise]

You may be in iso to protect you from any other hospital acquired infections - Prednisone takes out your immune system.

Regardless, that's horrible for you. I'm so sorry. 

There are people (often RNs) who offer a private advocacy service. I don't know how to find one in VIC but you may need a family member to find someone who can guide them through advocating for you. 

I'm so sorry 😞

[Melissa Louise]

[KSera]

1 hour ago, Melissa in Australia said:

Nobody is allowed to sit at my side, am in full isolation. I think the door is taped shut. 

Even the doctor wouldn't come in today. 

I don't have a single covid symptom. They shifted me yesterday into rehab as a holding room for the transfer. I think they are thinking now that was a mistake. Apparently someone in the ward I was in, oncology, has tested positive. They just covid tested this whole ward. But they wouldn't retest me. 

 I'm really sorry, that's such a hard situation made even harder. Hopefully you will convert back to negative quickly. Are you a candidate for Paxlovid given how ill you are?

[popmom]

4 hours ago, sassenach said:

That's ridiculous. We transfer and treat people with covid all the freaking time. I'm very frustrated for you.

This is exactly what I was thinking! Like…do they have this protocol for every single contagious illness?? Likely not. So many critical cases in rural areas of the country have to be transferred to larger hospitals for flu and other viral illnesses…All. The. Time. 
I was scared to say anything, but I’m feeling outraged on Melissa’s behalf right now. 
 

Melissa, I’m still lifting you up in prayer every day. 

Edited August 12, 2023 by popmom

[Mom_to3]

This just sucks! No wonder you are being weepy!! I am so upset on your behalf. First they kept you waiting and waiting for tests, then gave you covid, and now transfer to the specialist hospital is delayed due to said covid. Did I read correctly the covid ward was oncology ward? I mean, if they think covid is important, than treat it that way (regular testing,  mask wearing, keeping the covid ward far away from oncology etc.). And perhaps transfer to a covid ward in a specialist hospital (surely they must have isolation rooms, too). But not what they are doing now...how is this possible in a country that doesn't take any basic covid precautions and behaves like it's the common cold? We are all praying for you (and really frustrated at your behalf)!!

[Melissa in Australia]

The covid ward is beside the oncology ward. And it turned out that there was someone in the oncology ward that has covid. I caught it in the oncology ward. 

I think (or am hoping) the results must have been a false positive as I still have no symptoms. I have requested multiple times today to have a Retest, but they keep saying in 2 days. 

[bookbard]

1 hour ago, Melissa in Australia said:

I think (or am hoping) the results must have been a false positive as I still have no symptoms. I have requested multiple times today to have a Retest, but they keep saying in 2 days. 

I am hoping you're right and they mixed up your results with someone elses or it got contaminated. 

[HazelAnne]

Would it make a difference if you had someone else speak to the staff to request another covid test? I’m not sure how things work there, but where I live it sometimes helps to have a family member act as an advocate for the patient. Maybe your husband could call in and ask for a covid test since you don’t have symptoms. 
I’m so sorry you’re dealing with all this. Praying for you.

[mom31257]

Are nurses coming in to help you and care for you regularly enough? The fact that the doctor wouldn't come in is just beyond me. They have PPE so they can still treat patients. 

[Harriet Vane]

Praying for you, Melissa.

[cintinative]

Agreeing with the others. I am just so upset for you.  All of us WTM folks are shaking our fists in the air at the unfairness of this whole thing (and that we can't storm the doors of oncology for you because the flight is 23 hours).  Praying for someone to listen.  It's heartbreaking. 

If there is such a thing as a hospital advocate (I think Melissa Louise posted a contact), I would be calling them, and if you just have no energy, have your husband do it from a distance.  

[kbutton]

12 hours ago, Melissa in Australia said:

 

I am so teary today. I can't stop weeping. 

Besides the crazy circumstances and posture of the doctors/hospital, steroids can do this. I am so sorry.

[KSera]

8 hours ago, popmom said:

Like…do they have this protocol for every single contagious illness?? Likely not. So many critical cases in rural areas of the country have to be transferred to larger hospitals for flu and other viral illnesses…All. The. Time. 

I could imagine the protocol might be more similar to measles, given the contagiousness? But one would think the hospital receiving the transfer was bigger and more prepared for infection control than the current one. But perhaps not. The tape on the door sounds like it’s not a negative pressure room, unless it’s some kind of makeshift one, and thus the tape. The whole thing sounds odd. I know early on doctors were staying out of rooms with Covid positive patients, but I thought now that we know what PPE works, that wouldn’t be a thing. 
 

The steroids may be preventing you from having symptoms you might otherwise have, since many Covid symptoms come from the immune system fighting back (things like sore throat and runny nose). Are they altering your steroid dose at all in light of the infection? 
 

I’m really sorry for the lousy turn of events ( I can’t believe they had the Covid ward next to oncology!!), and hope the Covid passes quickly and uneventfully. 

[Ausmumof3]

Patient transport

The transferring health facility should notify ambulance or other transport agencies on the patient’s condition and COVID-19 status to ensure all HCWs involved are aware of the PPE requirement prior to arrival.

All agencies involved in the transport of COVID-19 suspected or confirmed patients should implement their organisations' standard and transmission-based precautions.

Before transporting patients with suspected or confirmed COVID-19, perform a risk assessment on

• the type of vehicle required
• the physical capability of patient/client and whether assistance will be required
• the ability of the patient/client to wear a surgical mask and practice respiratory etiquette (hygiene).

Ideally no other patient should be transported at the same time (for example, no multi-loading). Exemptions to this approach can be applied with high community transmission and demand on the health service.

For suspected or confirmed COVID-19 patients, before entering the vehicle, the driver, clinician, and passenger should perform hand hygiene with ABHR. The driver should follow airborne precautions. Eye protection is not required for drivers as this may obscure vision.

Passengers should wear a surgical mask or respirator, perform hand hygiene, and be educated on respiratory hygiene. Passengers should be provided with a plastic bag, tissues and ABHR.

Whenever possible, drive with windows open and keep the vehicle fan on fresh air (not recirculation).

The vehicle should be cleaned at the end of the journey. Remove any visible contamination with detergent and disinfectant wipes. Clean the seat area, door handles, and any other high-touch areas or areas touched by the patient with detergent and disinfectant wipes.
 

 

[Ausmumof3]

Guidelines for transfer with Covid from the Vichealth website. There’s no reason I can see not to transfer due to Covid with current protocols. It’s possible the other hospital doesn’t have capacity and Covid is being used as the reason rather than disclosing? Some hospitals are still overwhelmed 

[Ausmumof3]

The only other thing I can think is they’re concerned about some other non-Covid infection? Covid protocols are typically very lax now

[EKS]

20 minutes ago, KSera said:

The steroids may be preventing you from having symptoms you might otherwise have, since many Covid symptoms come from the immune system fighting back (things like sore throat and runny nose).

This.  Lung stuff too will get better with steroids.  I know this because both times my father (age 92, immunocompromised) had covid he was put on prednisone and it fixed him right up.

[KSera]

8 minutes ago, Ausmumof3 said:

The only other thing I can think is they’re concerned about some other non-Covid infection?

That’s what I am wondering. And it might just as easily be they’re worried about Melissa picking something up while out of the sealed hospital room as it is that they’re worried about her transmitting something as yet undiagnosed. It does seem they would be very used to the protocol for transferring a Covid positive patient at this point that it wouldn’t be a barrier. Are you able to wear an N95 or equivalent, Melissa? I could see with current lung impairment and breathing trouble, maybe that is not as doable and that makes transport harder?

[itsheresomewhere]

This is an odd question but any chance you had something with citrus within a few hours before having the covid test?   Recently, that was asked of DH before they gave him one before they did a test on him.  We asked about it and this facility told us they had recently had a few false positives on patients who had something citrus before testing.  They were sure if it was only for that batch of tests and were trying to figure it out.  

[Katy]

9 minutes ago, itsheresomewhere said:

This is an odd question but any chance you had something with citrus within a few hours before having the covid test?   Recently, that was asked of DH before they gave him one before they did a test on him.  We asked about it and this facility told us they had recently had a few false positives on patients who had something citrus before testing.  They were sure if it was only for that batch of tests and were trying to figure it out.  

It’s not just that batch of tests. There was a viral video of faking a positive covid test using citrus juice last Spring. The test relies of pH balance and citrus can give a false positive. Idk how much  it takes, one if my kids showed the video to me.

[KSera]

8 minutes ago, Katy said:

It’s not just that batch of tests. There was a viral video of faking a positive covid test using citrus juice last Spring. The test relies of pH balance and citrus can give a false positive. Idk how much  it takes, one if my kids showed the video to me.

It can happen if someone sabotages the test by not following directions. Since clearly the hospital wouldn’t have added things to the test solution that aren’t supposed to go there, it would only be if the directions to not eat or drink half an hour before testing weren’t followed. https://www.reuters.com/article/factcheck-covid-lfd-idUSL1N2OS2CH

eta: I guess I’m saying that while in wacky circumstances a false positive can occur, unfortunately, for someone who’s been in the hospital for three weeks, occam’s razor would say a positive is far far more likely to be due to the presence of Covid.

Edited August 12, 2023 by KSera

[Mrs Tiggywinkle Again]

I have no idea about Australia, but when I am coordinating patient transfers, the specialty floors in hospitals here are still asking for Covid tests and refusing to accept positive patients. So an oncology or cardiac unit, for example, won’t admit a Covid positive patient from another hospital.  A Covid positive patient going for care on a Covid unit or ICU is a different story.

I obviously cannot speak to anything outside of the two states I help organize hospital to hospital transport in but it is still a thing some places.

Praying for you, your DH and the twins. I wish I could fly over and help.

[KSera]

46 minutes ago, Mrs Tiggywinkle Again said:

I have no idea about Australia, but when I am coordinating patient transfers, the specialty floors in hospitals here are still asking for Covid tests and refusing to accept positive patients. So an oncology or cardiac unit, for example, won’t admit a Covid positive patient from another hospital.  A Covid positive patient going for care on a Covid unit or ICU is a different story.

I obviously cannot speak to anything outside of the two states I help organize hospital to hospital transport in but it is still a thing some places.

This seems to be how it is here as well, as I know that they test people here before they can be transferred anywhere. It feels frustrating though, because there’s such a contradiction between on the one hand hospitals mostly no longer having precautions to prevent Covid spread between staff/patients and other patients, yet once someone has known Covid, it impacts their care so much. Seems it should be taken seriously and worked to prevent since contracting it has such implications. 

[prairiewindmomma]

Oncology floors/wings tend to play by separate rules. In the hospitals we’ve been in, not only does the floor have a separate negative pressure HVAC filtering system, they are also very quick to put you in isolation for everyone’s protection. My dd spent time in iso—no visitors, and doctors came in in gown and gloves and masks when her ANC was O(!) and her platelets were running low. 
 

I imagine that not only are they trying to be protective of Melissa with her compromised immune system with that much prednisone on board, but they are also trying to minimize the chance of spread to others. 
 

I am surprised that they aren’t doing a transfer and just sticking her into a separate non-onc wing in a room with negative pressure or doing more remote consulting with the specialist hospital. Prednisone alone isn’t a treatment per se, it’s just bringing inflammation down to ease breathing and tamper down the immune system.
 

Histochemical staining from the biopsy should have confirmed or ruled out fungal or other organic causes for something like a granuloma. Likewise, the cytology should have given them a pretty decent clue as to what is going on. There are better targeted drugs for a variety of conditions, including just autoimmune triggered pulmonary fibrosis (like the drug nintedanib) and I really hope that Melissa knows more that she isn’t just sharing or that her family can push to have medical results disclosed to her.

—-

Melissa—are you on supplemental oxygen or something that can help with the fatigue? Breathing can be a lot of work, and even when I am on the lower end of normal— a pulse ox in the low 90s—I feel a lot better with some help if I’ve been low for a while rather than waiting until I dip into the 80s. Also, as someone who has spent months bedridden at a time, I hope PT is coming in and at least stretching or massaging you if you are bedbound. It is really hard to be in bed all day, even when you aren’t capable of moving. Hugs!!