Doctors are confusing sometimes

[kbutton]

30 minutes ago, prairiewindmomma said:

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.

My son stayed on an oncology floor when he had pulmonary emboli. They had sinks for people coming in to wash up at for the floor, plus a curtained entry room before stepping into his single room that had a sink and maybe even other stuff in it. The curtains were marked as having been cleaned between patients with paper that you had to tear if you wanted to close the curtains. None of those things were Covid-specific, just normal precautions. They were still masking and wearing eye protection at that point though all over the hospital.

[sassenach]

I'm an oncology nurse. We admit patients with all variety of transmissible illness because our immune suppressed population catches EVERYTHING. And they hold onto it for months and months. It's exceedingly common. We just put them in an isolation room and wear our PPE. End of story. In addition, Covid is, and has been for a long time, a fairly easy illness to get patients through. RSV, metapneumo, paraflu? Awful. Covid? Lingers, but not really severe at all. We will often hold starting the next round of chemo when patients have the other severe respiratory illnesses but with covid we rarely delay. 

I am so tired of covid being treated like a special situation. It's not anymore. 

[happi duck]

Many (hugs)

[Anne]

Sending hugs and continuing to pray for you, Melissa!

Anne

[TexasProud]

Joining the chorus of outrage.  Praying that you turn the corner soon!  I cannot imagine how frustrating all of this is. You have ever right to be weepy!!!  Wish we could all be there to give you a hug!

[Ditto]

17 hours ago, Catwoman said:

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

 

Yes!  Absolutely.  We would take such good care of her and keep her entertained too.

[Ditto]

17 hours ago, 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 am wrapping you in a hug and prayer.   Weeping seems to be the most appropriate action and honestly I suspect many of us are either weeping with you or close to it.  I desperately wish there was something we could do for you (i say "we" because I know we ALL want to so badly).  

[Melissa in Australia]

During the night I was moved to a covid isolation room in the covid ward within the larger rural hospital.. I now have a marvellous nurse who came in checked on me multiple times during the night. Apparently the rehab ward I was in has no idea about the latest protocols of covid care and completly panicked. 

Still covid  symptoms free

I have now finished the steroids treatment. It was only for 6 days. I don't have the body shakes and  don't feel as teary. I didn't know the tearyness was connected. Boy I was a mess yesterday. 

Transport to specialist hospital is still in motion. Maybe today??? The nurse said the other hostpital is waiting for a single isolation room to become available. Typically here in Australia hospital rooms have multiple patients. That is how I caught covid. 

So nice to have a nice nurse who informs me properly. Makes a person feel more comfortable and in control 

 

[Melissa in Australia]

2 hours ago, prairiewindmomma said:

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!!

Aparently all the other lung biopsy and staining showed was it isn't lymphoma. Otherwise inconclusive. That is why I need another lung biopsy. I don't know more. I feel that info is being held back, but one of the doctors did say that they are stumped. The doctor couldn't even tell me if what I have is something that can be treated. He just looked grave when I asked him. 

I am not on oxygen. I am managing to keep in the mid 90s. 

[freesia]

I’m glad you are in a better place. I’ll pray a room opens up quickly. 

[Junie]

54 minutes ago, Melissa in Australia said:

 

I have now finished the steroids treatment. It was only for 6 days. I don't have the body shakes and  don't feel as teary. I didn't know the tearyness was connected. Boy I was a mess yesterday. 

 

I knew this, but I didn't think of it.

Prednisone causes rage with me, but I know that it does make some people very weepy.

Glad you're feeling a little bit better!

[popmom]

@Melissa in Australia in the meantime can you request that your prior biopsy specimens be send to another pathology group for a second opinion? Preferably at a teaching hospital? I’ve had that done with a breast biopsy. 

Edited August 12, 2023 by popmom

[Melissa in Australia]

44 minutes ago, popmom said:

@Melissa in Australia in the meantime can you request that your prior biopsy specimens be send to another pathology group for a second opinion? Preferably at a teaching hospital? I’ve had that done with a breast biopsy. 

It was done at a teaching/research hospital 

Edited August 12, 2023 by Melissa in Australia

[mominco]

Melissa I am still thinking of you,sending positive thoughts and gentle hugs.

[Ausmumof3]

I’m glad you are getting better care and feeling less teary overall. 

[Melissa in Australia]

The nurse just told me I will be transported to the city hospital in a few hours. 

[LifeLovePassion]

10 minutes ago, Melissa in Australia said:

The nurse just told me I will be transported to the city hospital in a few hours. 

Wonderful news!

[freesia]

1 hour ago, Melissa in Australia said:

The nurse just told me I will be transported to the city hospital in a few hours. 

Yay!!!

[ScoutTN]

Glad the situation is improving! Praying for excellent care!

[cintinative]

3 hours ago, Melissa in Australia said:

The nurse just told me I will be transported to the city hospital in a few hours. 

So grateful. Praying for a great care team.

[Arcadia]

8 hours ago, Melissa in Australia said:

I feel that info is being held back, but one of the doctors did say that they are stumped. The doctor couldn't even tell me if what I have is something that can be treated. He just looked grave when I asked him

I think the info being held back is probably a list of possibilities that the doctors have thought of. When I had weird stuff that doctors were uncertain about, they didn’t want to panic me by telling me a long list of possibilities. 
 

7 hours ago, popmom said:

in the meantime can you request that your prior biopsy specimens be send to another pathology group for a second opinion?

 

6 hours ago, Melissa in Australia said:

The nurse just told me I will be transported to the city hospital in a few hours. 

The city hospital’s pathology group would probably look at Melissa’s prior biopsy specimens and still request for another biopsy to be done for more information.
 

Edited August 13, 2023 by Arcadia
typo

[mom31257]

I am praying the transfer happened smoothly and your care team there will be amazing!! 

[Catwoman]

Praying that the new hospital is excellent and that you get the diagnosis and treatment you need, and also that the staff is kind and caring!

[Melissa in Australia]

Just arrived at the city hospital. 

[klmama]

I'm glad they finally got you there!  Praying these new doctors will find the answers you need.

 

[Hannah]

38 minutes ago, Melissa in Australia said:

Just arrived at the city hospital. 

Wishing you a team of highly skilled diagnosticians and professional and caring staff.

[ktgrok]

Praying for you and hoping that the new hospital can make things happen swiftly and provide excellent care and information on a timely basis. (which sounds way less cheerful than just praying you get well soon, but seems more needed right now)

[Ditto]

7 minutes ago, ktgrok said:

Praying for you and hoping that the new hospital can make things happen swiftly and provide excellent care and information on a timely basis. (which sounds way less cheerful than just praying you get well soon, but seems more needed right now)

This is so well said that I will not try to say it myself but will just second it.

I'm glad the transfer has been completed and hope you are getting excellent care and able to rest.

 

[Melissa in Australia]

Saw the haematology team. They were very informative. Lymphoma is back as a possability. They said that they can't do a diagnosis until after second lung biopsy but my presentation of symptoms is classic lymphoma presentation. 

I still might have sarcoid, or another type of lung cancer. 

 

[lauraw4321]

12 minutes ago, Melissa in Australia said:

Saw the haematology team. They were very informative. Lymphoma is back as a possability. They said that they can't do a diagnosis until after second lung biopsy but my presentation of symptoms is classic lymphoma presentation. 

I still might have sarcoid, or another type of lung cancer. 

 

Praying for clear answers and treatment plan. 

[fraidycat]

I'm sorry you're on such a rollercoaster of vague ideas and non-answers. I hope that you are able to get a clear diagnosis and treatment plan in place ASAP to get you back on your feet. 
 

Continuing to keep you and your family in my thoughts. This has got to be so hard on them too.

Hugs. I wish there was something more I could do. Words on the internet just feels so inadequate.

[Kassia]

2 hours ago, fraidycat said:

I'm sorry you're on such a rollercoaster of vague ideas and non-answers. I hope that you are able to get a clear diagnosis and treatment plan in place ASAP to get you back on your feet. 
 

Continuing to keep you and your family in my thoughts. This has got to be so hard on them too.

Hugs. I wish there was something more I could do. Words on the internet just feels so inadequate.

Just wanted to second everything fraidycat said.  I'm so sorry about everything.  Wish I could do more than just tell you I'm thinking of you, wishing you all the best,  and sending hugs.  

[Mom_to3]

2 hours ago, fraidycat said:

I'm sorry you're on such a rollercoaster of vague ideas and non-answers. I hope that you are able to get a clear diagnosis and treatment plan in place ASAP to get you back on your feet. 
 

Continuing to keep you and your family in my thoughts. This has got to be so hard on them too.

Hugs. I wish there was something more I could do. Words on the internet just feels so inadequate.

Beautifully said. A agree. May this hospital get you onto a path of healing!!

[TexasProud]

Continuing to pray for answers. 

[ktgrok]

Hugs. I'm sort of surprised they couldn't diagnose from the previous biopsy - although you said the body was walling off the masses so maybe they only biopsied the outer bit, and didn't get the inner mass? And that is why they don't know? 

I hope they get the biopsy done ASAP and results are swift at this new hospital! 

[Ali in OR]

Praying for clear answers and a treatment plan very soon.

[Lady Florida.]

I haven't posted but have been following this thread and you've been in my thoughts @Melissa in Australia. I hope you finally get answers and can get started on a treatment. 

[Ditto]

Continuing to pray for you and your family.    I hope clear answers and a successful treatment plan happen very very soon.

[Arcadia]

3 hours ago, ktgrok said:

I'm sort of surprised they couldn't diagnose from the previous biopsy - although you said the body was walling off the masses so maybe they only biopsied the outer bit, and didn't get the inner mass?

Sometimes a second biopsy could be due to the care team not being able to come to a consensus. The second opinion for my breast biopsy was very different from the first opinion, and my oncology team had a discussion on whether a second biopsy is needed. 

[Melissa in Australia]

Apparently the injection of steroids I was given a few hours before the first biopsy could  have had a big impact on results. The doctor basically said that lymphoma responds really well to steroids, so well that it will affect the ability for a biopsys to identify it 

[Melissa in Australia]

And because of that I can't have this next biopsy until the end of this week ao the steroids I was on wear off 

[Melissa in Australia]

I just had the most beautiful dream, I was holding my grandchild's hand and was able to walk. 

[Laura Corin]

Wishing you more sweet dreams as you wait for the next stage.

[Harriet Vane]

28 minutes ago, Melissa in Australia said:

Apparently the injection of steroids I was given a few hours before the first biopsy could  have had a big impact on results. The doctor basically said that lymphoma responds really well to steroids, so well that it will affect the ability for a biopsys to identify it 

What an idiotic thing for them to do. I'm so sorry. They really should not have contaminated the biopsy like that.

[Faith-manor]

57 minutes ago, Melissa in Australia said:

I just had the most beautiful dream, I was holding my grandchild's hand and was able to walk. 

I wish you many many more of these moments. Hugs and love from me to you. 💓

[Innisfree]

At least they’re giving explanations. 

I’m glad you had a good dream. I hope it comes true soon.

[kbutton]

36 minutes ago, Harriet Vane said:

What an idiotic thing for them to do. I'm so sorry. They really should not have contaminated the biopsy like that.

She has been in really rough shape and had a delayed test—they were probably balancing doing nothing and doing something that could potentially work for the majority of the differential diagnoses.

I’m not given to defending poorly thought out medical care (we have seen how the sausage is made and DH is a sausage maker), but in a testing delay situation, options can get murky or less than ideal.

[Terabith]

1 hour ago, kbutton said:

She has been in really rough shape and had a delayed test—they were probably balancing doing nothing and doing something that could potentially work for the majority of the differential diagnoses.

I’m not given to defending poorly thought out medical care (we have seen how the sausage is made and DH is a sausage maker), but in a testing delay situation, options can get murky or less than ideal.

Yeah, that sounds really problematic, but they also were probably trying to keep her from dying while they got everything together, so....

[ktgrok]

2 hours ago, Melissa in Australia said:

Apparently the injection of steroids I was given a few hours before the first biopsy could  have had a big impact on results. The doctor basically said that lymphoma responds really well to steroids, so well that it will affect the ability for a biopsys to identify it 

 

2 hours ago, Melissa in Australia said:

And because of that I can't have this next biopsy until the end of this week ao the steroids I was on wear off 

AH, that explains it. Ugh. 

[Harriet Vane]

5 hours ago, kbutton said:

She has been in really rough shape and had a delayed test—they were probably balancing doing nothing and doing something that could potentially work for the majority of the differential diagnoses.

I’m not given to defending poorly thought out medical care (we have seen how the sausage is made and DH is a sausage maker), but in a testing delay situation, options can get murky or less than ideal.

Yes, all true. But she was given that steroid injection just a few hours before the test. This is something they could have thought through in that moment.