Longtime Lurker Posted August 29, 2023 Share Posted August 29, 2023 (edited) 8 hours ago, Ottakee said: Prayers still coming from a west Michigan. Wish you were closer. And more prayers from west Michigan! I think of you every day and your family at home. Having children with special needs makes things like this even more complicated. ETA: Not blaming special needs kids for making life complicated; just acknowledging this truth. Edited August 29, 2023 by Longtime Lurker 2 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 29, 2023 Author Share Posted August 29, 2023 1 hour 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 have had this happening for about 5 weeks and it was only 2 weeks ago that I had covid 3 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 29, 2023 Author Share Posted August 29, 2023 Aparently the top cardiac specialists at the hospital are now in my medical team. And they are perplexed. The nurse said the professors who wrote the text books. I am sure they are familiar with covid and how it affects the heart. I really Wish it was just as simple as that 3 27 Quote Link to comment Share on other sites More sharing options...
kbutton Posted August 29, 2023 Share Posted August 29, 2023 Praying the cardiologists will figure it out or be able to find one who can. Cardiology has a lot of sub specialties, so I hope they reach out. 3 Quote Link to comment Share on other sites More sharing options...
kbutton Posted August 29, 2023 Share Posted August 29, 2023 Someone I know had somewhat similar symptoms, and he both a neurologist and cardiologist looking into it. The neurologist said probably POTS and wanted him to have a tilt test. The cardiologist said not POTS. He had the test and got a POTS diagnosis. The tilt table test is a cardiology test, so…they are sometimes too pigeonholed. Not saying you need a tilt test, just that doctors sometimes need to find ways to think maybe instead of no and then act accordingly. 5 Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted August 29, 2023 Share Posted August 29, 2023 I was wondering about POTS, too. 2 Quote Link to comment Share on other sites More sharing options...
Garga Posted August 29, 2023 Share Posted August 29, 2023 Oh I don’t like this news! I will be praying for you and thinking about you! 1 Quote Link to comment Share on other sites More sharing options...
cintinative Posted August 29, 2023 Share Posted August 29, 2023 Melissa, since you have been diagnosed with sarcoidosis, I thought I'd send on this information. The Foundation for Sarcoidosis Research (an international group) has a patient navigator program. https://www.stopsarcoidosis.org/patient-navigator-program/ Types of support our Patient Navigators can provide: Finding a knowledgeable healthcare provider Finding sarcoidosis resources in your community and/or nationwide (support groups, local sarcoidosis awareness efforts, health teams, etc.) Talking through complex health decisions, and or disability processes Providing support for how to communicate with your healthcare provider Lending an ear: sometimes, you just need someone to talk to Being present as you move through your sarcoidosis journey I can only assume your care team is in touch with sarcoidosis researchers on this, but if not, this organization can also help with that. Continuing to pray for your care team and for you. 9 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted August 29, 2023 Share Posted August 29, 2023 5 minutes ago, cintinative said: I can only assume your care team is in touch with sarcoidosis researchers on this, but if not, this organization can also help with that. Honestly, organizations often have better information because they are advocating for the patient and aggregating information from all the experts. They get the experts to move toward consensus and drive meaningful research. (Speaking as a parent of a kid with rare diseases.) Taking information from a group like this can turn a doctor from stonewalling to cooperative sometimes. 10 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted August 30, 2023 Share Posted August 30, 2023 4 hours ago, kbutton said: Honestly, organizations often have better information because they are advocating for the patient and aggregating information from all the experts. They get the experts to move toward consensus and drive meaningful research. (Speaking as a parent of a kid with rare diseases.) Taking information from a group like this can turn a doctor from stonewalling to cooperative sometimes. I totally agree as someone who has a number of chronic diseases. All the disease organizations I am involved with have a lot of money involved in research and always specialists at their yearly meetings. 5 Quote Link to comment Share on other sites More sharing options...
lauraw4321 Posted August 30, 2023 Share Posted August 30, 2023 Continuing to pray. 1 Quote Link to comment Share on other sites More sharing options...
Popular Post Melissa in Australia Posted August 30, 2023 Author Popular Post Share Posted August 30, 2023 Some good news The beta blockers are helping keep my pulse down. It is now 100 lying down and only 125 standing. I was able to stand assisted by physio for 1 minute today The other really good news is my heart pump is now back to 50% the theory being that it was pumping so fast it wasn't having time to fill between beats They still are investigating if sarcoid is in my heart. And they are also investigating if sarcoid is in my nerves and both nervous systems are out of balance with each other not knowing which one needs to respond so my heart rate goes up. Anyway many more tests will take place over the next few days I have seem a huge amount of doctors today from many different fields of medicine. All of them are perplexed and finding it a mystery, but there are a few ideas floating around 72 Quote Link to comment Share on other sites More sharing options...
Kassia Posted August 30, 2023 Share Posted August 30, 2023 (edited) I'm so glad you have something positive to report and that the doctors are working hard to figure this out, but sorry that this has been such an incredibly long journey with nothing definitive yet. Sending hugs and positive thoughts always. Thanks for keeping us updated. ❤️ Edited August 30, 2023 by Kassia 4 Quote Link to comment Share on other sites More sharing options...
Faith-manor Posted August 30, 2023 Share Posted August 30, 2023 I am so happy that you had some improvement, positive report. I think of you throughout every day and wish good things for you. Hang in there! 2 1 Quote Link to comment Share on other sites More sharing options...
Kassia Posted August 30, 2023 Share Posted August 30, 2023 13 minutes ago, Faith-manor said: I am so happy that you had some improvement, positive report. I think of you throughout every day and wish good things for you. Hang in there! yes, you have so many people rooting and praying for you @Melissa in Australia! 3 1 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted August 30, 2023 Share Posted August 30, 2023 Thanks for the update -- I'm glad you have a team of specialists working with you on all of this! 1 Quote Link to comment Share on other sites More sharing options...
lauraw4321 Posted August 31, 2023 Share Posted August 31, 2023 I’m glad to read some positive news here. ::hugs::: 1 Quote Link to comment Share on other sites More sharing options...
bookbard Posted August 31, 2023 Share Posted August 31, 2023 22 hours ago, Melissa in Australia said: Some good news The beta blockers are helping keep my pulse down. It is now 100 lying down and only 125 standing. I was able to stand assisted by physio for 1 minute today The other really good news is my heart pump is now back to 50% the theory being that it was pumping so fast it wasn't having time to fill between beats They still are investigating if sarcoid is in my heart. And they are also investigating if sarcoid is in my nerves and both nervous systems are out of balance with each other not knowing which one needs to respond so my heart rate goes up. Anyway many more tests will take place over the next few days I have seem a huge amount of doctors today from many different fields of medicine. All of them are perplexed and finding it a mystery, but there are a few ideas floating around Very glad to hear a positive update and also glad that a number of different doctors are involved. I hope you're feeling a bit better and able to get some rest. 1 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted August 31, 2023 Share Posted August 31, 2023 I am so glad the beta blocker is helping you and very proud of your progress. I was in the hospital for nearly a month in the winter, and when I first started PT, I could hardly do it either. I am very hopeful that will all these doctors talking, looking things up, researching, etc you will continue on a good course. I am continuing to pray for you every day. 9 1 Quote Link to comment Share on other sites More sharing options...
Popular Post Melissa in Australia Posted August 31, 2023 Author Popular Post Share Posted August 31, 2023 I Can walk again. First time in 5 weeks It is so amazing Both the physio and I cried together I am using one of those old people's walkers. And have to have a nurse or someone standing behind me cause I am a falls risk But I walked 10 metres with only 2 seated rests It is so absolutly wonderful 108 7 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted August 31, 2023 Share Posted August 31, 2023 2 minutes ago, Melissa in Australia said: I Can walk again. First time in 5 weeks It is so amazing Both the physio and I cried together I am using one of those old people's walkers. And have to have a nurse or someone standing behind me cause I am a falls risk But I walked 10 metres with only 2 seated rests It is so absolutly wonderful What a wonderful update. That is awesome. 2 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted August 31, 2023 Share Posted August 31, 2023 1 minute ago, Melissa in Australia said: I Can walk again. First time in 5 weeks It is so amazing Both the physio and I cried together I am using one of those old people's walkers. And have to have a nurse or someone standing behind me cause I am a falls risk But I walked 10 metres with only 2 seated rests It is so absolutly wonderful That is wonderful! I hope each day has little victories like that until they add up to you being home with your family. 8 Quote Link to comment Share on other sites More sharing options...
Kassia Posted August 31, 2023 Share Posted August 31, 2023 @Melissa in AustraliaI'm so happy for you! What a big step (literally!). ❤️ 1 1 Quote Link to comment Share on other sites More sharing options...
Katy Posted August 31, 2023 Share Posted August 31, 2023 Yay!!!! 1 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted August 31, 2023 Share Posted August 31, 2023 I am so happy for you 1 Quote Link to comment Share on other sites More sharing options...
Hannah Posted August 31, 2023 Share Posted August 31, 2023 Small victories!! Happy that you're making progress now Melissa! 1 Quote Link to comment Share on other sites More sharing options...
lauraw4321 Posted August 31, 2023 Share Posted August 31, 2023 1 hour ago, Melissa in Australia said: I Can walk again. First time in 5 weeks It is so amazing Both the physio and I cried together I am using one of those old people's walkers. And have to have a nurse or someone standing behind me cause I am a falls risk But I walked 10 metres with only 2 seated rests It is so absolutly wonderful This is wonderful news!!! 1 Quote Link to comment Share on other sites More sharing options...
Faith-manor Posted August 31, 2023 Share Posted August 31, 2023 I am crying with you! This is so wonderful! 💐🌺🌸🏵🌷🌼💖💃💃💃 1 1 Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted August 31, 2023 Share Posted August 31, 2023 Hooray!! And congratulations!! Great update!! 1 Quote Link to comment Share on other sites More sharing options...
cintinative Posted August 31, 2023 Share Posted August 31, 2023 Wonderful, wonderful news!! You so needed this win. Continuing to pray for wisdom for your team and for recovery!! 1 Quote Link to comment Share on other sites More sharing options...
scholastica Posted August 31, 2023 Share Posted August 31, 2023 Fantastic news!! 1 Quote Link to comment Share on other sites More sharing options...
KidsHappen Posted August 31, 2023 Share Posted August 31, 2023 2 hours ago, Melissa in Australia said: I Can walk again. First time in 5 weeks It is so amazing Both the physio and I cried together I am using one of those old people's walkers. And have to have a nurse or someone standing behind me cause I am a falls risk But I walked 10 metres with only 2 seated rests It is so absolutly wonderful I remember having to learn to walk all over again and the incredible sense of accomplishment from just being able to something so seemingly simple. Good for you. Glad to hear some positive news. 3 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted August 31, 2023 Share Posted August 31, 2023 I am so happy to hear good news! Hope it gets better and better now. Surely improvement like that suggests your doctors are on the right track. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted August 31, 2023 Share Posted August 31, 2023 2 hours ago, Melissa in Australia said: I Can walk again. First time in 5 weeks It is so amazing Both the physio and I cried together I am using one of those old people's walkers. And have to have a nurse or someone standing behind me cause I am a falls risk But I walked 10 metres with only 2 seated rests It is so absolutly wonderful Yes!!! So happy for you. You are finally going the right direction. Praying that continues! 1 Quote Link to comment Share on other sites More sharing options...
Ditto Posted August 31, 2023 Share Posted August 31, 2023 3 hours ago, Melissa in Australia said: I Can walk again. First time in 5 weeks It is so amazing Both the physio and I cried together I am using one of those old people's walkers. And have to have a nurse or someone standing behind me cause I am a falls risk But I walked 10 metres with only 2 seated rests It is so absolutly wonderful This is wonderful! Made me tear up reading it. Finally progress in the right direction! I pray it keeps up and each day you are healthier and stronger. Many gentle hugs. 1 Quote Link to comment Share on other sites More sharing options...
Malory Posted August 31, 2023 Share Posted August 31, 2023 I am so happy for you. I pray you gain more energy everyday and get all the right treatments for a complete recovery. 1 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted August 31, 2023 Share Posted August 31, 2023 I am so happy to hear your update tonight! 1 Quote Link to comment Share on other sites More sharing options...
Lady Florida. Posted August 31, 2023 Share Posted August 31, 2023 This is wonderful news. I hope you continue to get better. 1 Quote Link to comment Share on other sites More sharing options...
Corraleno Posted August 31, 2023 Share Posted August 31, 2023 What a fantastic update! It sounds like you have a really great medical team now and things are finally heading in the right direction. So happy for you! 2 Quote Link to comment Share on other sites More sharing options...
TexasProud Posted August 31, 2023 Share Posted August 31, 2023 Excited about your news!!!! 1 Quote Link to comment Share on other sites More sharing options...
rebcoola Posted August 31, 2023 Share Posted August 31, 2023 Yay!!!! 1 Quote Link to comment Share on other sites More sharing options...
mom31257 Posted August 31, 2023 Share Posted August 31, 2023 (edited) How wonderful for you!!! Thank you so much for keeping us updated. We are hugging, praying, and cheering you on! My ladies' small group at church has been praying for you and will be delighted to hear this progress. Edited August 31, 2023 by mom31257 1 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted August 31, 2023 Share Posted August 31, 2023 YAY, MELISSA!!! I’m so happy for you!!! 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted August 31, 2023 Share Posted August 31, 2023 Yay!!! Put some racing flames on that walker—you earned them! 😉 9 hours ago, TravelingChris said: I am so glad the beta blocker is helping you and very proud of your progress. I was in the hospital for nearly a month in the winter, and when I first started PT, I could hardly do it either. I am very hopeful that will all these doctors talking, looking things up, researching, etc you will continue on a good course. I am continuing to pray for you every day. Speaking of which, you sound so much more like yourself again! So glad you are on the mend again too! 6 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted August 31, 2023 Share Posted August 31, 2023 Not sure if you are ready to laugh about any of this yet, but this made me think of you. 11 Quote Link to comment Share on other sites More sharing options...
LifeLovePassion Posted August 31, 2023 Share Posted August 31, 2023 Hooray! Excited for you! 1 Quote Link to comment Share on other sites More sharing options...
Mom_to3 Posted August 31, 2023 Share Posted August 31, 2023 So wonderful to hear - finally some steps (figuratively and literally) in the right direction 🙂 1 Quote Link to comment Share on other sites More sharing options...
chocolate-chip chooky Posted August 31, 2023 Share Posted August 31, 2023 @Melissa in Australia Just another offer to post you anything you might want or need. Books? Magazines? Snacks? Ear buds? Teddy bear? Lip gloss? Jammies? Anything? I feel so far away here in Queensland. I'm happy to give you a call if you ever feel like chatting. Please reach out if there's anything at all I can do to help you. Thinking of you often 🌻 9 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted September 1, 2023 Author Share Posted September 1, 2023 Thank you so much. I don't need anything 6 Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted September 1, 2023 Share Posted September 1, 2023 16 hours ago, Melissa in Australia said: I Can walk again. First time in 5 weeks It is so amazing Both the physio and I cried together I am using one of those old people's walkers. And have to have a nurse or someone standing behind me cause I am a falls risk But I walked 10 metres with only 2 seated rests It is so absolutly wonderful I'm so happy to read this update! Praying for you, your family and your medical team. 1 Quote Link to comment Share on other sites More sharing options...
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