kbutton Posted August 24, 2023 Share Posted August 24, 2023 5 hours ago, prairiewindmomma said: Second, push for pulmonary rehab and physical therapy once you are stable. Exercise helps you use oxygen more effectively, and keeping muscle tone in your body improves quality of life. Or cardiac rehab. It’s very similar to pulmonary rehab, and each hospital system might differ in which program they tend to emphasize. When my son had it, he qualified via a six-minute walk test and maybe a couple of other benchmarks. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted August 24, 2023 Share Posted August 24, 2023 19 minutes ago, kbutton said: Or cardiac rehab. It’s very similar to pulmonary rehab, and each hospital system might differ in which program they tend to emphasize. When my son had it, he qualified via a six-minute walk test and maybe a couple of other benchmarks. I should clarify that my son had pulmonary rehab, but he qualified for either one. Quote Link to comment Share on other sites More sharing options...
Jaybee Posted August 24, 2023 Share Posted August 24, 2023 (edited) 2 hours ago, Melissa in Australia said: I have developed a tremor in my right hand/lower arm. It is very shaky. I have to clench something to stop it. I am scared My dh reacted that way recently when he was ill. We don't know for sure what caused it, but we did see that it is a rare side effect of prednisone, so he went off of it (after talking to a doctor). He didn't actually have what he was initially diagnosed with, anyway, so he didn't need prednisone. His hands were shaking so badly he couldn't hold a cup to drink. It was quite scary! ETA: I do see it started a couple of days ago for you, so I don't know that this would be applicable. Edited August 24, 2023 by Jaybee 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted August 24, 2023 Share Posted August 24, 2023 2 hours ago, Melissa in Australia said: The tremor started 2 days ago. But it is now at the stage where I dropped my phone. And can hardly balance food on a spoon long shot - but I get this when I have a nerve pinched in my neck or shoulder from sleeping wrong. I wonder if since you have been basically bed ridden you might have compressed something? Hugs. I hope it is something temporary and fixable! 6 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted August 24, 2023 Share Posted August 24, 2023 2 hours ago, Melissa in Australia said: The tremor started 2 days ago. But it is now at the stage where I dropped my phone. And can hardly balance food on a spoon It’s probably not related but this does happen for some people post-Covid as well so may not be related? Also stress and anxiety can contribute 2 Quote Link to comment Share on other sites More sharing options...
Kanin Posted August 25, 2023 Share Posted August 25, 2023 I also have a close friend with sarcoidosis. She had a heck of a time getting diagnosed, too. She was feeling pretty miserable at diagnosis, but after a few months of treatment the symptoms went away, and she's not had any trouble since. It's been 2-3 years now. 11 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted August 25, 2023 Share Posted August 25, 2023 I hope today is a little better, and that they have started appropriate treatment! Thinking of you today and every day! 4 Quote Link to comment Share on other sites More sharing options...
BeachGal Posted August 25, 2023 Share Posted August 25, 2023 Hope you’re feeling better, Melissa! I’ve been thinking about you and am glad they figured out what was going on. 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 25, 2023 Author Share Posted August 25, 2023 The specialists want to assess the extent of the sarcoid and possable organ damage before starting treatment. As the steroids will mask it. So a few days of more tests and a repeat of some of the scans I have had. The specialist also said he has a feeling there is something that has been missed or overlooked. 47 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted August 25, 2023 Share Posted August 25, 2023 23 minutes ago, Melissa in Australia said: The specialists want to assess the extent of the sarcoid and possable organ damage before starting treatment. As the steroids will mask it. So a few days of more tests and a repeat of some of the scans I have had. The specialist also said he has a feeling there is something that has been missed or overlooked. Sounds like a team that is working hard to figure out your complex case. 12 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted August 25, 2023 Share Posted August 25, 2023 I don't like the thought that anything has been missed or overlooked, but I am very encouraged that your doctor is being so thorough, and that he is obviously putting a lot of thought into your case. 13 Quote Link to comment Share on other sites More sharing options...
Just Kate Posted August 26, 2023 Share Posted August 26, 2023 I am so glad that you finally have a diagnosis and that your doctors are being so thorough. I will continue to pray that you begin to feel much better soon. 2 Quote Link to comment Share on other sites More sharing options...
Garga Posted August 26, 2023 Share Posted August 26, 2023 I keep this tab open all the time and think of you every time I look at it. 7 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted August 26, 2023 Share Posted August 26, 2023 I am so sorry you are going through this. Prays for a good recovery./ 3 Quote Link to comment Share on other sites More sharing options...
Halftime Hope Posted August 26, 2023 Share Posted August 26, 2023 On 8/24/2023 at 2:27 AM, Melissa in Australia said: Just got the results. It is sarcoid, but the most severe version. Just saw my new doctor. He said good it isn't cancer but it is still a serious desease. He said he will be back first thing in the morning. Treatment will be complicated aparently. He will tell me in morning as he has to study all the tests I have had over the past few weeks Hi, Melissa! I'm so glad they are being thorough! Continuing to pray for you and your fam. Quote Link to comment Share on other sites More sharing options...
mom31257 Posted August 26, 2023 Share Posted August 26, 2023 Praying for them to find anything missed and begin treatment soon! 2 Quote Link to comment Share on other sites More sharing options...
lauraw4321 Posted August 28, 2023 Share Posted August 28, 2023 Praying for you and hoping for a good update! Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 28, 2023 Author Share Posted August 28, 2023 The doctor team thinks there is something going on with my heart. They think my rapid pulse with huge jumps with the slightest exertion might be what is making me breathless, and the reason I can't walk. The doctor team said they have never seen anyone with a heart doing what mine is before, not to this degree. They now have cardiologists in the medical team So I have been having lots of scans and tests today. They are trying to see if I have sarcoid in my heart. 2 46 Quote Link to comment Share on other sites More sharing options...
Starr Posted August 28, 2023 Share Posted August 28, 2023 Oh my Melissa. I pray they can figure it out soon! Quote Link to comment Share on other sites More sharing options...
popmom Posted August 28, 2023 Share Posted August 28, 2023 Thank you for taking the time to update. How is your family doing back home? How can we pray for you? Any specifics? 4 Quote Link to comment Share on other sites More sharing options...
Kassia Posted August 28, 2023 Share Posted August 28, 2023 Oh, Melissa, my own heart hurts so much for you. This has been such a long road for you. I hope they figure this all out very soon with a good treatment plan so you can recover and feel better. I wish I could do something to help as you go through this. Sending so many positive thoughts and gentle hugs. 3 Quote Link to comment Share on other sites More sharing options...
Wishes Posted August 28, 2023 Share Posted August 28, 2023 I am glad they are focusing on the issue, but it’s probably pretty scary to have them throw various theories out. Sending warm hugs to you with the hope for direction from your doctors and healing for you. 4 Quote Link to comment Share on other sites More sharing options...
Mom_to3 Posted August 28, 2023 Share Posted August 28, 2023 How scary this all must be! At least you seem to be in very good hands, and they are thinking ahead to optimize treatment. But it's never a good time when docs tell you they have never seen anything quite like your case...(your case might end up being published!) And it hopefully (probably) means you'll get more attention. I bet they all can't wait to get you started on the road to better health. (I didn't mean to "heart" your message...) Hugs to you and your family, who must miss you dearly. 6 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 28, 2023 Author Share Posted August 28, 2023 Just saw a cardiologist Aparently my heart pump was functioning at 50% last week on scans which is within normal Results from today's scan heart pump functioning at 40% I need your shoulder to cry on 58 Quote Link to comment Share on other sites More sharing options...
bookbard Posted August 28, 2023 Share Posted August 28, 2023 9 minutes ago, Melissa in Australia said: Just saw a cardiologist Aparently my heart pump was functioning at 50% last week on scans which is within normal Results from today's scan heart pump functioning at 40% I need your shoulder to cry on That's so scary - I am so sorry. We're all here. Remember though that even if the Drs in that hospital haven't seen (say) sarcoid in the heart before, there will be others they consult with, even if they're overseas, who have and will know what to do. And I guess while all this info is overwhelming, it sounds like things are happening fast and so hopefully they'll be able to get on it and help you really soon. Feel free to express how overwhelming this all is, because it's intense, and we're all here to listen. 10 1 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted August 28, 2023 Share Posted August 28, 2023 Sending lots of gentle hugs, Melissa. I wish we could be there in person. This is so much to deal with. I’m thinking of you through the day, and know that lots of others are too. 1 1 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted August 28, 2023 Share Posted August 28, 2023 I’m so sorry 😞 I hope you get your answers soon 1 1 Quote Link to comment Share on other sites More sharing options...
El... Posted August 28, 2023 Share Posted August 28, 2023 Oh, Melissa! I'm sorry. 1 Quote Link to comment Share on other sites More sharing options...
Katy Posted August 28, 2023 Share Posted August 28, 2023 I know that sounds scary, but figuring it out is a good thing. Now they just need to figure out if it’s cardiac sarcoid or if something else caused cardiomyopathy or another heart condition at the same time. Sarcoid in your heart is more serious than most sarcoid, but survival rates are still very high compared to the types of aggressive cancers they were considering last week. A year on prednisone isn’t fun but it is effective for the vast majority of people. And the good news is you have really good doctors working hard to figure this out now. 16 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted August 28, 2023 Share Posted August 28, 2023 I really hope you get good medicine. 1 Quote Link to comment Share on other sites More sharing options...
Laura Corin Posted August 28, 2023 Share Posted August 28, 2023 4 hours ago, Melissa in Australia said: Just saw a cardiologist Aparently my heart pump was functioning at 50% last week on scans which is within normal Results from today's scan heart pump functioning at 40% I need your shoulder to cry on I'm so sorry you are going through this. 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted August 28, 2023 Share Posted August 28, 2023 Praying continuously Melissa. 💛 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted August 28, 2023 Share Posted August 28, 2023 Praying for you, Melissa 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted August 28, 2023 Share Posted August 28, 2023 More gentle hugs being sent your way. 1 Quote Link to comment Share on other sites More sharing options...
Storygirl Posted August 28, 2023 Share Posted August 28, 2023 I'm sorry that this is so scary. I'm glad that the doctors are working hard to figure this out now, and I'm praying that they are able to start you on an effective treatment very soon. 1 Quote Link to comment Share on other sites More sharing options...
cintinative Posted August 28, 2023 Share Posted August 28, 2023 8 hours ago, Melissa in Australia said: Just saw a cardiologist Aparently my heart pump was functioning at 50% last week on scans which is within normal Results from today's scan heart pump functioning at 40% I need your shoulder to cry on Oh I really hate this news!! I so want your story to be different. Lord, please have mercy on Melissa. 3 Quote Link to comment Share on other sites More sharing options...
mominco Posted August 28, 2023 Share Posted August 28, 2023 (((hugs)))thinking of you 1 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted August 28, 2023 Share Posted August 28, 2023 Prayers still coming from a west Michigan. Wish you were closer. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted August 28, 2023 Share Posted August 28, 2023 Hugs and prayers for forward progress and comfort/reassurance for you. 1 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted August 28, 2023 Share Posted August 28, 2023 We wish we could be there with you too, Melissa! Sending lots of hugs and prayers as you wait to find out the treatment for this latest scary development. 2 Quote Link to comment Share on other sites More sharing options...
Ditto Posted August 28, 2023 Share Posted August 28, 2023 Melissa this is just a big scary awful thing and it seems you can't catch a break. Our shoulders are collectively here for you to cry on at any time. It does seem that your medical team is thorough and on top of it all. Praying they figure it out and treatment is successful. My deep hope is that with proper treatment your heart will heal and regain proper function as well as healing everything else. 6 Quote Link to comment Share on other sites More sharing options...
TexasProud Posted August 28, 2023 Share Posted August 28, 2023 Sorry, Melissa. So scary. Praying you turn a corner soon. 1 Quote Link to comment Share on other sites More sharing options...
Hannah Posted August 28, 2023 Share Posted August 28, 2023 (((Melissa))) 1 Quote Link to comment Share on other sites More sharing options...
wathe Posted August 28, 2023 Share Posted August 28, 2023 13 hours ago, Melissa in Australia said: Just saw a cardiologist Aparently my heart pump was functioning at 50% last week on scans which is within normal Results from today's scan heart pump functioning at 40% I need your shoulder to cry on Assuming you are referencing cardiac ejection fraction. Cleveland clinic has a nice explainer on what is beng measured and what these numbers might mean. Maybe you will find it helpful? 4 1 Quote Link to comment Share on other sites More sharing options...
mom31257 Posted August 28, 2023 Share Posted August 28, 2023 I'm sorry this is so scary and discouraging! Now they know more, which can only mean better treatment. Praying they can get you the best possible out there! 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 28, 2023 Author Share Posted August 28, 2023 20 minutes ago, wathe said: Assuming you are referencing cardiac ejection fraction. Cleveland clinic has a nice explainer on what is beng measured and what these numbers might mean. Maybe you will find it helpful? Yes Lying down almost flat my pulse is 115 Sitting on edge of bed my pulse is between 125 to 140 and I start to feel breathless If I stand my pulse jumps up to just below 160 and I am completely breathless, panting with a tight chest. 15 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 28, 2023 Author Share Posted August 28, 2023 The cardiologist started me on beta blockers during the night to see if it helps. More heart scans again today 28 Quote Link to comment Share on other sites More sharing options...
EKS Posted August 28, 2023 Share Posted August 28, 2023 Hugs, Melissa, this sounds so scary. 2 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted August 29, 2023 Share Posted August 29, 2023 3 hours ago, Melissa in Australia said: Yes Lying down almost flat my pulse is 115 Sitting on edge of bed my pulse is between 125 to 140 and I start to feel breathless If I stand my pulse jumps up to just below 160 and I am completely breathless, panting with a tight chest. Was this going on before you got Covid? Or did it start after? That kind of rapid heart rate is one of the side effects of Covid in some people - it was my only symptom. Mine wasn't quite that high, but I was hitting the 130s standing still and if I tried to stretch and put my arms over my head hit the 140s. And I was exercising fairly regularly before that. Took 6 weeks to go back to normal. Just a thought. 6 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted August 29, 2023 Share Posted August 29, 2023 32 minutes ago, ktgrok said: Was this going on before you got Covid? Or did it start after? That kind of rapid heart rate is one of the side effects of Covid in some people - it was my only symptom. Mine wasn't quite that high, but I was hitting the 130s standing still and if I tried to stretch and put my arms over my head hit the 140s. And I was exercising fairly regularly before that. Took 6 weeks to go back to normal. Just a thought. I was trying to avoid posting this because I know I bring everything back to Covid but this. My sis does transcription for a cardiologist and she gets case after case of “I had Covid recently and now my heart rate keeps spiking” 2 1 Quote Link to comment Share on other sites More sharing options...
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