Ausmumof3 Posted August 9, 2023 Share Posted August 9, 2023 3 hours ago, Melissa Louise said: I wonder if it could be fungal? Glad the PET is scheduled. Hope you get answers soon. I keep stressing that it’s bushfire smoke related the number of cancers etc in the volunteer fieries the five years after the fire here was worrying 5 1 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted August 9, 2023 Share Posted August 9, 2023 3 hours ago, Melissa in Australia said: Just got biopsy results Not lymphoma But it is something supper super rare. They aren't sure what yet. What they could determine is my body has made massive protective balls around lots of undetermined somethings. It could be 1 of 6 things. I will Need lots of specialised testing to work out what. It could include more biopsies. The pet scan has now turned into a diagnostic tool.. I might be transferred to Melbourne to a specialist hospital. Will know more tomorrow afternoon I’m glad it’s not lymphoma and hope it turns out to be something treatable 5 1 Quote Link to comment Share on other sites More sharing options...
Katy Posted August 9, 2023 Share Posted August 9, 2023 So glad it’s not lymphoma. 1 Quote Link to comment Share on other sites More sharing options...
El... Posted August 9, 2023 Share Posted August 9, 2023 You're on my mind, Melissa. I'm glad you have strong nurses around you, and that lymphoma is ruled out. 2 1 Quote Link to comment Share on other sites More sharing options...
Just Kate Posted August 9, 2023 Share Posted August 9, 2023 Continuing to pray for you! So glad it’s not lymphoma and hoping for a clear diagnosis soon. 1 Quote Link to comment Share on other sites More sharing options...
cintinative Posted August 9, 2023 Share Posted August 9, 2023 Praying!!! They have ruled out sarcoids then? Because heart sarcoids can cause the crazy awful fatigue you are having. I am so grateful that you don't have lymphoma. 1 1 Quote Link to comment Share on other sites More sharing options...
Soror Posted August 9, 2023 Share Posted August 9, 2023 Thinking of you. 1 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted August 9, 2023 Share Posted August 9, 2023 The specialist hospital sounds like a good plan. I’m glad you’re breathing better, and hope the scan helps with diagnosis. 2 1 Quote Link to comment Share on other sites More sharing options...
EKS Posted August 9, 2023 Share Posted August 9, 2023 Could it be a hospital acquired infection from when your son was in the hospital? 1 Quote Link to comment Share on other sites More sharing options...
YaelAldrich Posted August 9, 2023 Share Posted August 9, 2023 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. Please have them look into this. It's mostly a diagnosis based on blood work and exclusion. It's rare but there is treatment (new drug just came out in the US. I can find out what it is). 4 Quote Link to comment Share on other sites More sharing options...
Starr Posted August 9, 2023 Share Posted August 9, 2023 The specialist hospital sounds good to me. Praying the scan is helpful. 1 Quote Link to comment Share on other sites More sharing options...
wintermom Posted August 9, 2023 Share Posted August 9, 2023 Hugs, Melissa. This has got to be so stressful trying to figure out what's wrong, so the drs can then try to fix things. All the best going forward. Your story makes me think of an episode of the TV series "House." It's so not entertaining in real life, though. Hopefully someone will find that all-important clue to what is causing your weakness. 1 1 Quote Link to comment Share on other sites More sharing options...
Terabith Posted August 9, 2023 Share Posted August 9, 2023 1 hour ago, wintermom said: Hugs, Melissa. This has got to be so stressful trying to figure out what's wrong, so the drs can then try to fix things. All the best going forward. Your story makes me think of an episode of the TV series "House." It's so not entertaining in real life, though. Hopefully someone will find that all-important clue to what is causing your weakness. It's not lupus!!! (tag line on House) Seriously, Melissa, this is awful, and I am so sorry it's happening. Lots of good thoughts and prayers ascending. 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted August 9, 2023 Share Posted August 9, 2023 Oh goodness, glad it’s not lymphoma, too, but you sure need answers. I hope the PET scan yields answers and you improve soon. Thinking of you often. 2 1 Quote Link to comment Share on other sites More sharing options...
lauraw4321 Posted August 9, 2023 Share Posted August 9, 2023 Joining the chorus saying I'm glad it's not lymphoma, and praying for answers and treatment plans soon. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted August 9, 2023 Share Posted August 9, 2023 Well, one diagnosis gone, at least? I'm so sorry, this has to be so frustrating. 1 Quote Link to comment Share on other sites More sharing options...
Faith-manor Posted August 9, 2023 Share Posted August 9, 2023 I am glad to hear not Lymphoma, and now I just want to light a fire under them to get a diagnosis so they can make a plan and get that treatment amped up! 2 1 Quote Link to comment Share on other sites More sharing options...
rebcoola Posted August 9, 2023 Share Posted August 9, 2023 Im glad its not lymphoma. Praying for you 1 Quote Link to comment Share on other sites More sharing options...
Kassia Posted August 9, 2023 Share Posted August 9, 2023 37 minutes ago, lauraw4321 said: Joining the chorus saying I'm glad it's not lymphoma, and praying for answers and treatment plans soon. Same with me. So glad it's not lymphoma and hoping they figure all of this out very soon. 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 9, 2023 Author Share Posted August 9, 2023 (edited) 5 hours ago, cintinative said: Praying!!! They have ruled out sarcoids then? Because heart sarcoids can cause the crazy awful fatigue you are having. I am so grateful that you don't have lymphoma. Sarcoid is still a possability. If it is it will be on the extreme end. It could still be a type of cancer though a very rare one and that is at the bottom of the list of 6 possaby things. That is all the doctor said. He also said not to google it, because the info on google for this particular thing is not accurate and will paint a grimer picture than reality. That is why I didn't write down the name here. The name is just the name of the body reaction, not the desease. Edited August 9, 2023 by Melissa in Australia 21 Quote Link to comment Share on other sites More sharing options...
klmama Posted August 9, 2023 Share Posted August 9, 2023 Whatever it is, I'm praying they'll find an answer and the correct treatment ASAP! 3 1 Quote Link to comment Share on other sites More sharing options...
Longtime Lurker Posted August 10, 2023 Share Posted August 10, 2023 Still praying for you and for your family back home. I'm glad it's not lymphoma! 1 1 Quote Link to comment Share on other sites More sharing options...
Wishes Posted August 10, 2023 Share Posted August 10, 2023 Continuing to send hope for healing soon Melissa 1 Quote Link to comment Share on other sites More sharing options...
Ditto Posted August 10, 2023 Share Posted August 10, 2023 16 hours ago, Melissa in Australia said: Sarcoid is still a possability. If it is it will be on the extreme end. It could still be a type of cancer though a very rare one and that is at the bottom of the list of 6 possaby things. That is all the doctor said. He also said not to google it, because the info on google for this particular thing is not accurate and will paint a grimer picture than reality. That is why I didn't write down the name here. The name is just the name of the body reaction, not the desease. Not naming the possibilities was smart of you. I'm glad they are at least able to start ruling some things out and have a plan for figuring out exactly what it is. Also transferring you to the specialty hospital sounds like a good idea. Continuing to pray for you and your healing. 2 1 Quote Link to comment Share on other sites More sharing options...
KidsHappen Posted August 10, 2023 Share Posted August 10, 2023 Do you have birds perchance? Me and my brother both had histoplasmosis (which is related to birds somehow) when we were young. For me it was nothing. For him, he end up in Parkland Hospital in Dallas ,TX for 6 months and had to half of his left lung removed. It caused a growth around the tube to the lung on that side which caused his lung to collapse and start to die. Certainly they would have seen something like that already (he was diagnosed in a little one horse town and flown to Dallas) but I thought I would bring it up just in case. I am glad to hear that it is not lymphoma and hope you get a diagnosis and treatment soon. 4 Quote Link to comment Share on other sites More sharing options...
lauraw4321 Posted August 10, 2023 Share Posted August 10, 2023 Checking in with you again @Melissa in Australia! Continued prayers! 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 11, 2023 Author Share Posted August 11, 2023 The doctors got the results from the PET scan. The masses in my lungs are deviding. Haven't been transferred yet, but the inter hospital request has been made. 32 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted August 11, 2023 Share Posted August 11, 2023 1 minute ago, Melissa in Australia said: The doctors got the results from the PET scan. The masses in my lungs are deviding. Haven't been transferred yet, but the inter hospital request has been made. Prayers coming. What does that mean? Does it point to a diagnosis and treatment? 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 11, 2023 Author Share Posted August 11, 2023 (edited) I don't know what it means. It is very hard to get info from the doctors. I would think the masses deviding and making more wouldn't be good. I am pretty breathless already. Edited August 11, 2023 by Melissa in Australia 18 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted August 11, 2023 Share Posted August 11, 2023 Sending lots of good thoughts, Melissa. I hope you are transferred to the specialist hospital soon. 1 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted August 11, 2023 Share Posted August 11, 2023 I’m sorry Melissa I’m hoping the interpretation is better than expected and the transfer helps speed up results 2 1 Quote Link to comment Share on other sites More sharing options...
Laura Corin Posted August 11, 2023 Share Posted August 11, 2023 Best wishes for the transfer and your hopes for more clarity. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted August 11, 2023 Share Posted August 11, 2023 Melissa, thank you for the update. I'm praying for you. 1 Quote Link to comment Share on other sites More sharing options...
BeachGal Posted August 11, 2023 Share Posted August 11, 2023 What an ordeal you are going through, Melissa. Praying for you, too. 1 Quote Link to comment Share on other sites More sharing options...
YaelAldrich Posted August 11, 2023 Share Posted August 11, 2023 I'm continuing to pray for you and your family. 1 Quote Link to comment Share on other sites More sharing options...
mominco Posted August 11, 2023 Share Posted August 11, 2023 Thinking of you and your family everyday. 1 Quote Link to comment Share on other sites More sharing options...
Starr Posted August 11, 2023 Share Posted August 11, 2023 Praying for you. 1 Quote Link to comment Share on other sites More sharing options...
Mom_to3 Posted August 11, 2023 Share Posted August 11, 2023 I am glad things are finally happening, after all this waiting around while you are getting weaker. Hopefully the specialist hospital will give you more clarity and a treatment plan. We are all keeping you in our thoughts! 2 Quote Link to comment Share on other sites More sharing options...
mom31257 Posted August 11, 2023 Share Posted August 11, 2023 Thinking of you and praying!!! 1 Quote Link to comment Share on other sites More sharing options...
klmama Posted August 11, 2023 Share Posted August 11, 2023 Praying 1 Quote Link to comment Share on other sites More sharing options...
Hannah Posted August 11, 2023 Share Posted August 11, 2023 I hope you get answers really soon Melissa. The waiting and uncertainty must be so hard for you and your family. 1 Quote Link to comment Share on other sites More sharing options...
LMD Posted August 11, 2023 Share Posted August 11, 2023 Oh man Melissa, praying they get the transfer sorted asap. Do you know which hospital? 1 Quote Link to comment Share on other sites More sharing options...
Kassia Posted August 11, 2023 Share Posted August 11, 2023 Thinking of you, Melissa. ❤️ 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 11, 2023 Author Share Posted August 11, 2023 Transfer will be first thing in the morning. 24 1 Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted August 11, 2023 Share Posted August 11, 2023 Continuing to pray! 1 Quote Link to comment Share on other sites More sharing options...
Ditto Posted August 11, 2023 Share Posted August 11, 2023 Thank you for updating us. I'm glad you are being transferred tomorrow. Praying for you and your family. How is your brother doing? Is he still hospitalized? 2 1 Quote Link to comment Share on other sites More sharing options...
cintinative Posted August 11, 2023 Share Posted August 11, 2023 Continuing to pray for you. I pray the new care team will be very attentive and that they would have wisdom in how to help you. I am grateful that your current nurses have advocated for you and I pray the same will occur at the new hospital. 2 1 Quote Link to comment Share on other sites More sharing options...
EKS Posted August 11, 2023 Share Posted August 11, 2023 Thinking of you Melissa. 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 11, 2023 Author Share Posted August 11, 2023 Bother Transfer just cancled. I just failed the covid test. I have caught it here in hospital as I have been tested multiple times while in hospital. 63 Quote Link to comment Share on other sites More sharing options...
Kassia Posted August 11, 2023 Share Posted August 11, 2023 Oh no. That's awful. I'm so sorry. 1 Quote Link to comment Share on other sites More sharing options...
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