LifeLovePassion Posted July 25, 2023 Share Posted July 25, 2023 Thinking of you right now. 1 Quote Link to comment Share on other sites More sharing options...
Mom_to3 Posted July 25, 2023 Share Posted July 25, 2023 I am so sorry Melissa!! At least you are now getting the testing and then treatment you need... 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 25, 2023 Author Share Posted July 25, 2023 3 hours ago, cintinative said: continuing to pray for your strength, healing and comfort. That's a really hard potential diagnosis. Are you saying Sarcoidosis is a possibility also? Yes 2 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted July 25, 2023 Share Posted July 25, 2023 I certainly hope it is something acute and transitory, which I know Sarcoidosis can be. Hugs. Praying for you. 1 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted July 25, 2023 Share Posted July 25, 2023 Checking in to see if there’s been any change. Hoping you are as comfortable as possible in a hospital and getting closer to answers. 1 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 25, 2023 Author Share Posted July 25, 2023 29 minutes ago, Ausmumof3 said: Checking in to see if there’s been any change. Hoping you are as comfortable as possible in a hospital and getting closer to answers. Thank you Waiting for the doctor to come round and tell me results of testing done so far. Have had more tests early this morning 20 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 26, 2023 Author Share Posted July 26, 2023 Just saw the doctors. The good news is it is looking less like lymphoma or other types of cancer. The not so good news is they still don't know what is wrong. Still considering sarcoidosis as likely. More tests today. Biopsy maybe tomorrow 47 Quote Link to comment Share on other sites More sharing options...
KSera Posted July 26, 2023 Share Posted July 26, 2023 5 minutes ago, Melissa in Australia said: Just saw the doctors. The good news is it is looking less like lymphoma or other types of cancer. The not so good news is they still don't know what is wrong. Still considering sarcoidosis as likely. More tests today. Biopsy maybe tomorrow It's good they think cancer looks less likely. Do you still have a fever? Leg swelling gone? Hoping for good answers for you soon. Quote Link to comment Share on other sites More sharing options...
bookbard Posted July 26, 2023 Share Posted July 26, 2023 11 minutes ago, Melissa in Australia said: Just saw the doctors. The good news is it is looking less like lymphoma or other types of cancer. The not so good news is they still don't know what is wrong. Still considering sarcoidosis as likely. More tests today. Biopsy maybe tomorrow Oh that is good news. Hopefully it is something more transient. I hope in the meantime they're making you comfortable. 4 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 26, 2023 Author Share Posted July 26, 2023 19 minutes ago, KSera said: It's good they think cancer looks less likely. Do you still have a fever? Leg swelling gone? Hoping for good answers for you soon. Leg swelling gone Still have fever. Extremely fatigued. Sitting is hard work. Nurses have to wheel me to bathroom. Absolutely no desire to eat at all. Have to force myself to have a few mouthfuls 24 Quote Link to comment Share on other sites More sharing options...
Just Kate Posted July 26, 2023 Share Posted July 26, 2023 I’m so sorry you’re going through this! I had a lymphoma scare back in 2021, which ended up being sarcoidosis. My sarcoidosis is completely asymptomatic (so far) and chances are pretty decent it will stay that way. I was diagnosed via a biopsy (lung). If you want to talk or vent, I am here! I remember how stressful it was, especially when lymphoma was fist mentioned (along with lung cancer, as a second possibility) and how relieved I was when I got my proper diagnosis. 6 1 Quote Link to comment Share on other sites More sharing options...
Vintage81 Posted July 26, 2023 Share Posted July 26, 2023 Hugs Melissa…I hope you get some answers soon. 🙏 Quote Link to comment Share on other sites More sharing options...
EKS Posted July 26, 2023 Share Posted July 26, 2023 I'm glad that cancer is seeming less likely. Keeping you in my thoughts ❤️ 1 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 26, 2023 Author Share Posted July 26, 2023 1 hour ago, Just Kate said: I’m so sorry you’re going through this! I had a lymphoma scare back in 2021, which ended up being sarcoidosis. My sarcoidosis is completely asymptomatic (so far) and chances are pretty decent it will stay that way. I was diagnosed via a biopsy (lung). If you want to talk or vent, I am here! I remember how stressful it was, especially when lymphoma was fist mentioned (along with lung cancer, as a second possibility) and how relieved I was when I got my proper diagnosis. Thank you 2 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted July 26, 2023 Share Posted July 26, 2023 I am so sorry you are going through this! I hope you get reassuring answers soon! Lots and lots of hugs! 1 Quote Link to comment Share on other sites More sharing options...
klmama Posted July 26, 2023 Share Posted July 26, 2023 I'm glad they are taking this seriously and getting you the tests needed to figure it out. Praying they'll give you answers today, along with treatment that helps. 1 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted July 26, 2023 Share Posted July 26, 2023 Thinking of you, Melissa. I know it’s night there now— hope you’re sleeping well and feel better soon. May morning bring answers, relief from worry, and clear options for treatment. 1 Quote Link to comment Share on other sites More sharing options...
cintinative Posted July 26, 2023 Share Posted July 26, 2023 Praying for solutions and clear answers. Do they want to do a bronchoscopy? 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 26, 2023 Author Share Posted July 26, 2023 59 minutes ago, cintinative said: Praying for solutions and clear answers. Do they want to do a bronchoscopy? I don't know the medical terminology. They were going to go down the mouth to the lung, but now want to do needle through chest into lung. Aparently it is less invasive Quote Link to comment Share on other sites More sharing options...
cintinative Posted July 26, 2023 Share Posted July 26, 2023 2 minutes ago, Melissa in Australia said: I don't know the medical terminology. They were going to go down the mouth to the lung, but now want to do needle through chest into lung. Aparently it is less invasive The first one is the bronchoscopy. My husband had that done. (He has been diagnosed with sarcoidosis of the lung but hasn't been symptomatic for five years). I hope they are able to get you results soon. 3 1 Quote Link to comment Share on other sites More sharing options...
Hannah Posted July 26, 2023 Share Posted July 26, 2023 Thinking of you Melissa. 1 Quote Link to comment Share on other sites More sharing options...
Just Kate Posted July 26, 2023 Share Posted July 26, 2023 (edited) 1 hour ago, cintinative said: The first one is the bronchoscopy. My husband had that done. (He has been diagnosed with sarcoidosis of the lung but hasn't been symptomatic for five years). I hope they are able to get you results soon. That is also what I had done to diagnose my sarcoidosis. I’m also glad to know that your husband is not symptomatic. Edited July 26, 2023 by Just Kate 2 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 26, 2023 Author Share Posted July 26, 2023 Just now, Just Kate said: That is also what I had done to diagnose my sarcoidosis. Just Kate, Did you have increadably fatigue? If so how long until you were able to do things like self care again? Thank you very much Quote Link to comment Share on other sites More sharing options...
wathe Posted July 26, 2023 Share Posted July 26, 2023 (edited) 1 hour ago, Melissa in Australia said: I don't know the medical terminology. They were going to go down the mouth to the lung, but now want to do needle through chest into lung. Aparently it is less invasive Needle through chest into lung = percutaneous lung biopsy. Usually only need local anesthetic Though mouth or nose into lung = bronchoscopy. Often requires procedural sedation. Edited to add link Edited July 26, 2023 by wathe 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 26, 2023 Author Share Posted July 26, 2023 Just now, wathe said: Needle through chest into lung = percutaneous lung biopsy. Usually only need local anesthetic Though mouth or nose into lung = bronchoscopy. Often requires procedural sedation. They can't do the through mouth into lung at this hospital, but they can do the needle through chest here Quote Link to comment Share on other sites More sharing options...
wathe Posted July 26, 2023 Share Posted July 26, 2023 Keeping you in my thought, Melissa. Hoping for the best possible outcome. 1 1 Quote Link to comment Share on other sites More sharing options...
Just Kate Posted July 26, 2023 Share Posted July 26, 2023 2 minutes ago, Melissa in Australia said: Just Kate, Did you have increadably fatigue? If so how long until you were able to do things like self care again? Thank you very much I did not. I have no symptoms at all. They found the nodules in my chest during a heart MRI (which was done because I was born with heart issues and had open heart surgery at the age of 4. Heart MRI was just a follow up to make sure all is still well). This finding led to a CT scan and a PET scan, then finally the bronchoscopy. So far, we will just watch and wait. I have no current treatment. I am praying that you feel better soon and that you get a good report from your doctor. 2 1 Quote Link to comment Share on other sites More sharing options...
Melissa Louise Posted July 26, 2023 Share Posted July 26, 2023 15 minutes ago, wathe said: Needle through chest into lung = percutaneous lung biopsy. Usually only need local anesthetic Though mouth or nose into lung = bronchoscopy. Often requires procedural sedation. Edited to add link Just a heads up for Melissa; I've had both, and I was very unprepared for the biopsy - it was quite traumatic. I think she should ask for exactly what will happen, so she knows. I don't want to prime anyone but to be prepared for it possibly to be extremely uncomfortable. I think I ended up with sedation or tranquilizers. of some kind. Bronchoscopies are fine, much easier on the patient. 3 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 26, 2023 Author Share Posted July 26, 2023 The doctors got me to walk to see how far I could go. I could only walk half the length of the bed, and along the foot, before I was gasping so much I was seeing black dots. The doctor had to help me back to bed. I feel I am getting worse 41 Quote Link to comment Share on other sites More sharing options...
Faith-manor Posted July 26, 2023 Share Posted July 26, 2023 6 minutes ago, Melissa in Australia said: The doctors got me to walk to see how far I could go. I could only walk half the length of the bed, and along the foot, before I was gasping so much I was seeing black dots. The doctor had to help me back to bed. I feel I am getting worse I am so sorry, Melissa. I wish I could come hug and help you. Much love. 1 Quote Link to comment Share on other sites More sharing options...
chocolate-chip chooky Posted July 27, 2023 Share Posted July 27, 2023 Thinking of you, Melissa, and wishing you all the best 🌻 1 Quote Link to comment Share on other sites More sharing options...
BusyMom5 Posted July 27, 2023 Share Posted July 27, 2023 Hugs! Praying they find the cause soon. 🙏 1 Quote Link to comment Share on other sites More sharing options...
Ditto Posted July 27, 2023 Share Posted July 27, 2023 1 hour ago, Melissa in Australia said: The doctors got me to walk to see how far I could go. I could only walk half the length of the bed, and along the foot, before I was gasping so much I was seeing black dots. The doctor had to help me back to bed. I feel I am getting worse I am so sorry. I pray they find the cause soon and you are on your way to feeling better/being healed. Many many hugs. 1 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted July 27, 2023 Share Posted July 27, 2023 1 hour ago, Melissa in Australia said: The doctors got me to walk to see how far I could go. I could only walk half the length of the bed, and along the foot, before I was gasping so much I was seeing black dots. The doctor had to help me back to bed. I feel I am getting worse I am so sorry. I hope they figure out the cause soon and turn you around so you're going in the right direction! Still sending hugs! 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted July 27, 2023 Share Posted July 27, 2023 Praying…. I hope you get some relief soon. 💛 1 Quote Link to comment Share on other sites More sharing options...
TexasProud Posted July 27, 2023 Share Posted July 27, 2023 Praying for you!! Sounds so hard! 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 27, 2023 Author Share Posted July 27, 2023 They have started me on steroids. 23 Quote Link to comment Share on other sites More sharing options...
Mom_to3 Posted July 27, 2023 Share Posted July 27, 2023 (edited) Hope the steroids help you to feel better while your team figures out how to approach this! What a scary experience... Edited July 27, 2023 by Mom_to3 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 27, 2023 Author Share Posted July 27, 2023 The doctor just came to see me, in the next 2 days, when a bed becomes available I will be transferred to a larger hospital closer to Melbourne. They have a team of respiratory specialists there. Then some time between Tuesday and Thursday next week, after the steroids which they have now taken me off, clear my system I will be transferred just for a day to a specialist hospital for the lung biopsy. So a little wait for results 25 4 Quote Link to comment Share on other sites More sharing options...
El... Posted July 27, 2023 Share Posted July 27, 2023 Wow, Melissa. That's intense. I'm so glad they're taking your care seriously. You are in my prayers. And your family, too! 1 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted July 27, 2023 Share Posted July 27, 2023 I’m so sorry, I hope you are at least not feeling any worse. That’s a long wait for testing 😞 1 Quote Link to comment Share on other sites More sharing options...
Miss Tick Posted July 27, 2023 Share Posted July 27, 2023 Thinking of you, Melissa 1 1 Quote Link to comment Share on other sites More sharing options...
cintinative Posted July 27, 2023 Share Posted July 27, 2023 Since they have to transfer you, is there any chance they could do the bronchoscopy instead of the lung biopsy? I pray the steroids really help with the horrible fatigue you are experiencing. Is Melbourne closer or farther away from your family? 2 1 Quote Link to comment Share on other sites More sharing options...
Starr Posted July 27, 2023 Share Posted July 27, 2023 Oh my all the ups and downs and sideways of figuring things out while you feel so awful. I’m so sorry. 1 Quote Link to comment Share on other sites More sharing options...
LMD Posted July 27, 2023 Share Posted July 27, 2023 Far out Melissa, I'm so sorry! 1 Quote Link to comment Share on other sites More sharing options...
Jaybee Posted July 27, 2023 Share Posted July 27, 2023 That is a lot to take in, Melissa. I am so sorry you are going through this, but it does sound like they are on top of your care. I am praying for you and your family. 1 Quote Link to comment Share on other sites More sharing options...
fraidycat Posted July 27, 2023 Share Posted July 27, 2023 Thinking of you, Melissa and hoping the doctors can figure it out and get you on the mend soon. Also thinking of your family as they must all be so worried. Sending you and yours all the good vibes I've got. Hugs. 1 Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted July 27, 2023 Share Posted July 27, 2023 Praying they can get this figured out and can find a really good treatment plan. Hope all the transfer details go smoothly too. 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted July 27, 2023 Share Posted July 27, 2023 How are the kids doing back at home? 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 27, 2023 Author Share Posted July 27, 2023 4 hours ago, cintinative said: Since they have to transfer you, is there any chance they could do the bronchoscopy instead of the lung biopsy? I pray the steroids really help with the horrible fatigue you are experiencing. Is Melbourne closer or farther away from your family? Further. At the moment I am about an hour from some of my adult kids and an hour twenty minutes from dh. When shifted to close to Melbourne it will be a 3 hour drive. None will be able to make it that far after work before end of visiting hours. Hospitals here in Australia are very strict about visiting hours. And room at hospitals are shared. 21 Quote Link to comment Share on other sites More sharing options...
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