kbutton Posted August 7, 2023 Share Posted August 7, 2023 You might benefit from pulmonary rehab when you recover a bit, but I don’t know how available that is to you. 3 Quote Link to comment Share on other sites More sharing options...
TechWife Posted August 8, 2023 Share Posted August 8, 2023 (edited) It bothers me that they keep talking about wanting to send you home without a definitive diagnosis. I worry that after the steroids are finished you will deteriorate again and have to start all over. Do you have a way to write down your questions? Will a nurse or an aide write them down for you? Can you ask the social worker or nurse about the lack of continuity of care between physician teams? It almost sounds like they are starting all over and not considering the previous care team’s opinions. If there’s no PET scan, have them articulate the reasons, especially since you were told there would be one. If it was truly a miscommunication, you might want to ask if they have put safeguards in place so that it doesn’t happen again. Edited August 8, 2023 by TechWife 8 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 8, 2023 Author Share Posted August 8, 2023 No results today. Doctor was positive they will be in tomorrow Dh was here today when the doctors did their rounds, so was able to ask lots of questions. 42 Quote Link to comment Share on other sites More sharing options...
popmom Posted August 8, 2023 Share Posted August 8, 2023 I’m so glad your husband was able to be there to ask questions. I am so grateful you are able to continue to update us on how it’s going. I pray for you everyday. 7 1 Quote Link to comment Share on other sites More sharing options...
cintinative Posted August 8, 2023 Share Posted August 8, 2023 6 hours ago, Melissa in Australia said: No results today. Doctor was positive they will be in tomorrow Dh was here today when the doctors did their rounds, so was able to ask lots of questions. SO very thankful your dh is there with you. 3 1 Quote Link to comment Share on other sites More sharing options...
Ditto Posted August 8, 2023 Share Posted August 8, 2023 I'm glad your husband was there and able to ask questions of the medical team. Hopefully your dr is right and you will have results tomorrow. Did they ever do the the PET scan? At this point they may be waiting for the biopsy results, but I do think getting a PET scan is a good idea. Continuing to pray for you. 1 Quote Link to comment Share on other sites More sharing options...
Ditto Posted August 8, 2023 Share Posted August 8, 2023 7 hours ago, popmom said: I am so grateful you are able to continue to update us on how it’s going. I pray for you everyday. Yes, I fully agree with this. I find myself checking for her updates as soon as I am on the computer in the morning. I also pray for her daily. 4 1 Quote Link to comment Share on other sites More sharing options...
Jaybee Posted August 8, 2023 Share Posted August 8, 2023 57 minutes ago, Ditto said: Yes, I fully agree with this. I find myself checking for her updates as soon as I am on the computer in the morning. I also pray for her daily. Me too. 1 1 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted August 8, 2023 Share Posted August 8, 2023 1 hour ago, Ditto said: Yes, I fully agree with this. I find myself checking for her updates as soon as I am on the computer in the morning. I’m another. Melissa, I hope they have useful results for you tomorrow, with a clear plan of action. So glad your dh was able to talk to the doctors. 1 1 Quote Link to comment Share on other sites More sharing options...
Hannah Posted August 8, 2023 Share Posted August 8, 2023 You're in my thoughts Melissa. Hoping for answers soon so you know what is happening and what to expect. 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted August 8, 2023 Share Posted August 8, 2023 Thinking of you! 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted August 8, 2023 Share Posted August 8, 2023 Praying 1 Quote Link to comment Share on other sites More sharing options...
TexasProud Posted August 8, 2023 Share Posted August 8, 2023 Continuing to pray for you! 1 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 8, 2023 Author Share Posted August 8, 2023 5 hours ago, Ditto said: I'm glad your husband was there and able to ask questions of the medical team. Hopefully your dr is right and you will have results tomorrow. Did they ever do the the PET scan? At this point they may be waiting for the biopsy results, but I do think getting a PET scan is a good idea. Continuing to pray for you. Not yet. So far I have fasted for the last 2 days for the pet scan but it gets put off at the last minute. Some administrative issues by hospital. 25 Quote Link to comment Share on other sites More sharing options...
Arcadia Posted August 8, 2023 Share Posted August 8, 2023 20 minutes ago, Melissa in Australia said: Not yet. So far I have fasted for the last 2 days for the pet scan but it gets put off at the last minute. Some administrative issues by hospital. Is there a shortage of PET scan machines at the hospital? When I needed a PET scan done years ago, the PET scan appointments were all full for weeks and my oncologist obviously doesn’t want to wait that long so he recommended a reputable place nearby. I managed to get my PET scan done at the place my oncologist recommended within a few days by taking whatever slot they had. 1 Quote Link to comment Share on other sites More sharing options...
Kassia Posted August 8, 2023 Share Posted August 8, 2023 38 minutes ago, Melissa in Australia said: Not yet. So far I have fasted for the last 2 days for the pet scan but it gets put off at the last minute. Some administrative issues by hospital. That's ridiculous! I'm so sorry you are dealing with this on top of everything else. You need to eat when you are this weak. 😞 4 Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted August 8, 2023 Share Posted August 8, 2023 Praying for you! Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 8, 2023 Author Share Posted August 8, 2023 2 hours ago, Arcadia said: Is there a shortage of PET scan machines at the hospital? When I needed a PET scan done years ago, the PET scan appointments were all full for weeks and my oncologist obviously doesn’t want to wait that long so he recommended a reputable place nearby. I managed to get my PET scan done at the place my oncologist recommended within a few days by taking whatever slot they had. No if I have a Pet scan while in hospital the hospital has to foot the bill. If I gave it done as an outpatient public health foots the bill. The ceo of the hospital has to personally approve the pet scan, and so far he hasn't 23 Quote Link to comment Share on other sites More sharing options...
Ditto Posted August 8, 2023 Share Posted August 8, 2023 2 hours ago, Melissa in Australia said: Not yet. So far I have fasted for the last 2 days for the pet scan but it gets put off at the last minute. Some administrative issues by hospital. 🤬 No words. Lots of gentle hugs though. 1 Quote Link to comment Share on other sites More sharing options...
cintinative Posted August 8, 2023 Share Posted August 8, 2023 2 hours ago, Melissa in Australia said: Not yet. So far I have fasted for the last 2 days for the pet scan but it gets put off at the last minute. Some administrative issues by hospital. Praying. And glad your husband is there to advocate for you. It's not okay that they are depriving you of nutrition unnecessarily. 4 Quote Link to comment Share on other sites More sharing options...
Ditto Posted August 8, 2023 Share Posted August 8, 2023 2 minutes ago, Melissa in Australia said: No if I have a Pet scan while in hospital the hospital has to foot the bill. If I gave it done as an outpatient public health foots the bill. The ceo of the hospital has to personally approve the pet scan, and so far he hasn't Well I didn't think I get more ticked off, but this has done it. I am livid on your behalf, just livid! 9 Quote Link to comment Share on other sites More sharing options...
wintermom Posted August 8, 2023 Share Posted August 8, 2023 2 hours ago, Melissa in Australia said: Not yet. So far I have fasted for the last 2 days for the pet scan but it gets put off at the last minute. Some administrative issues by hospital. This is not good. Not good at all. You are already very weak, and yet you're being forced to fast until the CEO signed a blinkin' form. Sometimes I really hate publicly funded health care. Do you have the option of going private in Australia? We don't in Canada, but those with $$$ just go down to the US. 4 Quote Link to comment Share on other sites More sharing options...
Arcadia Posted August 8, 2023 Share Posted August 8, 2023 4 minutes ago, Melissa in Australia said: No if I have a Pet scan while in hospital the hospital has to foot the bill. If I gave it done as an outpatient public health foots the bill. The ceo of the hospital has to personally approve the pet scan, and so far he hasn't That sounds way too similar to how my country of origin does things. My parents would pay for me to see private doctors because of that. I’m so sorry you have to put up with this. 3 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted August 8, 2023 Share Posted August 8, 2023 7 minutes ago, Melissa in Australia said: No if I have a Pet scan while in hospital the hospital has to foot the bill. If I gave it done as an outpatient public health foots the bill. The ceo of the hospital has to personally approve the pet scan, and so far he hasn't Is this why they keep talking about sending you home? Somebody needs to raise Cain until the hospital administration sorts out how to get you the scan and let you eat. Are your dh or brother coming back soon? 7 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 8, 2023 Author Share Posted August 8, 2023 27 minutes ago, wintermom said: This is not good. Not good at all. You are already very weak, and yet you're being forced to fast until the CEO signed a blinkin' form. Sometimes I really hate publicly funded health care. Do you have the option of going private in Australia? We don't in Canada, but those with $$$ just go down to the US. Yes people can get private health, but I don't think I could mid desease like I am right now. 4 Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted August 8, 2023 Share Posted August 8, 2023 Not saying this works all the time but it tends to motivate some- Any chance your DH or maybe a friend or one of your kids could post on Facebook a “frustrated” post about how their mom/wife/friend is very sick and needs this test but the CEO is the hold up….. Perhaps, he/she needs a little public motivation. 2 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 8, 2023 Author Share Posted August 8, 2023 29 minutes ago, Innisfree said: Is this why they keep talking about sending you home? Somebody needs to raise Cain until the hospital administration sorts out how to get you the scan and let you eat. Are your dh or brother coming back soon? Yes that is why. Dh will be back on Friday. My brother unfortunately was admitted to hospital himself last night. 40 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 8, 2023 Author Share Posted August 8, 2023 The doctor explained yesterday that the test isn't diagnostic but rather a marker to see how treatment works. Soo I am not so stressed now about it The biopsy results are what will give the diagnosis. 14 Quote Link to comment Share on other sites More sharing options...
lauraw4321 Posted August 8, 2023 Share Posted August 8, 2023 3 minutes ago, Melissa in Australia said: The doctor explained yesterday that the test isn't diagnostic but rather a marker to see how treatment works. Soo I am not so stressed now about it The biopsy results are what will give the diagnosis. I’ve lost track. When are you supposed to get the biopsy results? 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 8, 2023 Author Share Posted August 8, 2023 Hopefully today 14 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted August 8, 2023 Share Posted August 8, 2023 Do you have any kind of patient portal online, with the hospital, that posts test results? With doctor's only rounding once a day, my mom often got results quicker by looking them up on the hospital online portal than from actually hearing them from her doctors. 4 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 8, 2023 Author Share Posted August 8, 2023 The doctors and nurses are checking for the results multiple times a day. The steroids are the start of treatment for either sarcoid or lymphoma. So treatment has begun 23 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted August 8, 2023 Share Posted August 8, 2023 28 minutes ago, Melissa in Australia said: The doctor explained yesterday that the test isn't diagnostic but rather a marker to see how treatment works. Soo I am not so stressed now about it The biopsy results are what will give the diagnosis. Are you able to eat, then? I know you may not be hungry. But do try, if you’re not supposed to be fasting anymore. Sometimes protein shakes are easier to get down than food. 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 8, 2023 Author Share Posted August 8, 2023 Yes I had breakfast today. They have me on mineral and vitamins enriched protein drinks as well 20 Quote Link to comment Share on other sites More sharing options...
Melissa Louise Posted August 8, 2023 Share Posted August 8, 2023 https://www.abc.net.au/news/2023-01-02/vic-state-election-promise-pet-scanner-staffing-concerns/101785602 Staff shortages impacting use of PET machines. 2 Quote Link to comment Share on other sites More sharing options...
Melissa Louise Posted August 8, 2023 Share Posted August 8, 2023 Also there's a waitlist to go privately, so that suggestion won't help, unfortunately. Melissa's best bet is to sit tight, but have someone advocating for her (politely) each day. 2 1 2 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 8, 2023 Author Share Posted August 8, 2023 2 minutes ago, Melissa Louise said: Also there's a waitlist to go privately, so that suggestion won't help, unfortunately. Melissa's best bet is to sit tight, but have someone advocating for her (politely) each day. This. The nurses are advocating for me 19 Quote Link to comment Share on other sites More sharing options...
Melissa Louise Posted August 8, 2023 Share Posted August 8, 2023 Just now, Melissa in Australia said: This. The nurses are advocating for me I'm glad. 1 1 Quote Link to comment Share on other sites More sharing options...
Popular Post Melissa in Australia Posted August 8, 2023 Author Popular Post Share Posted August 8, 2023 Pet scan has just been approved for tomorrow morning. Paper signed off. Yay 58 2 Quote Link to comment Share on other sites More sharing options...
Ditto Posted August 9, 2023 Share Posted August 9, 2023 Such good news that the PET scan is signed off on and scheduled. 3 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 9, 2023 Author Share Posted August 9, 2023 No results today. Doctors said that they have started ringing the pathology multiple times a day at the big hospital to try speed it up 19 Quote Link to comment Share on other sites More sharing options...
Melissa Louise Posted August 9, 2023 Share Posted August 9, 2023 I bet that's staff shortages again. It's not ok 🙁 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 9, 2023 Author Share Posted August 9, 2023 The steroids are making me very shaky, but help with the breathing 14 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 9, 2023 Author Share Posted August 9, 2023 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 47 Quote Link to comment Share on other sites More sharing options...
Melissa Louise Posted August 9, 2023 Share Posted August 9, 2023 26 minutes 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 wonder if it could be fungal? Glad the PET is scheduled. Hope you get answers soon. 7 1 Quote Link to comment Share on other sites More sharing options...
LMD Posted August 9, 2023 Share Posted August 9, 2023 Big hugs Melissa 💜 1 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted August 9, 2023 Share Posted August 9, 2023 2 hours ago, Melissa Louise said: I wonder if it could be fungal? Glad the PET is scheduled. Hope you get answers soon. That was one of my totally non medically educated thoughts too 2 Quote Link to comment Share on other sites More sharing options...
Laura Corin Posted August 9, 2023 Share Posted August 9, 2023 I'm glad you got your results and the PET is going ahead. Best wishes for the next stage. 1 Quote Link to comment Share on other sites More sharing options...
Ditto Posted August 9, 2023 Share Posted August 9, 2023 Fungal was my thought too. Hugs and prayers Melissa. 1 Quote Link to comment Share on other sites More sharing options...
freesia Posted August 9, 2023 Share Posted August 9, 2023 I hope they can find the answer easily. I’m relieved it’s not lymphoma, honestly. Lots if love and prayers. 1 1 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.