Doctors are confusing sometimes

[YaelAldrich]

Beautiful news!  I will keep up my prayers for you. 

[Shoeless]

This is really good news 😁 

[klmama]

I'm so happy for you!!!!  I'll keep praying!

[Ottakee]

I am looking for updates 

[Melissa in Australia]

I am hoping for updates as well

[Innisfree]

I hope you’re continuing to feel better.

[Ottakee]

1 hour ago, Melissa in Australia said:

I am hoping for updates as well

Are you able to walk a bit more?   Is the heat function any better?

[Melissa in Australia]

10 minutes ago, Ottakee said:

Are you able to walk a bit more?   Is the heat function any better?

Not really any different. I said to the doctor yesterday that I am very disappointed in myself as I was hoping I was going to see improvements each day, but I feel just the same. I guess I was hoping I was getting better

[Katy]

I’m sure you are getting better. But that was a lot of work after weeks of being in bed. I’m sure you were able to go further than you typically would because adrenaline. It will probably take 18 months if not 2 years to get back to where you were before. And that’s with a lot of work and deliberate rest. Probably more rest than you’re inclined to need, and definitely more than you want.

Be patient with yourself. As patient as you would be with the boys. And try to focus on the good. You don’t have cancer. This is difficult, but it’s treatable. You have experts on your case. You live in a country where treatment is available and won’t bankrupt you. And remember that some of those drugs have mood effects. If you feel off, talk to your doctors and nurses. Don’t trust your fears when you’re on strong medications. 

[Harriet Vane]

17 hours ago, Katy said:

I’m sure you are getting better. But that was a lot of work after weeks of being in bed. I’m sure you were able to go further than you typically would because adrenaline. It will probably take 18 months if not 2 years to get back to where you were before. And that’s with a lot of work and deliberate rest. Probably more rest than you’re inclined to need, and definitely more than you want.

Be patient with yourself. As patient as you would be with the boys. And try to focus on the good. You don’t have cancer. This is difficult, but it’s treatable. You have experts on your case. You live in a country where treatment is available and won’t bankrupt you. And remember that some of those drugs have mood effects. If you feel off, talk to your doctors and nurses. Don’t trust your fears when you’re on strong medications. 

Definitely this.

After a life-threatening illness I found my recovery was a couple years. 

[Ditto]

20 hours ago, Melissa in Australia said:

Not really any different. I said to the doctor yesterday that I am very disappointed in myself as I was hoping I was going to see improvements each day, but I feel just the same. I guess I was hoping I was getting better

I really hope that you are getting better but it is just slower going than you wish.  Are they now treating the sarcoidosis?   Did they determine if it was in your heart?  I am continuing to think/pray for you.

[Melissa in Australia]

Still having tests to see if it in my heart. Aparently it is extremely hard to find in the heart. Easier in autopsy. I don't really wish to get to the autopsy stage. 

Yesterday I had a backwards day, a bit breathless and almost fell, couldn't walk more than a few steps. Hope today is better. 

They can't start treating the sarcoid until all the testing is done. And then will only treat it if it is in my heart. So the only medication I am on is the little magic pill that slightly lowers my pulse rate

I have been told it will take several years to recover. I can't even imagine going home and only functioning at this level for months let alone years. 

[Innisfree]

4 minutes ago, Melissa in Australia said:

Still having tests to see if it in my heart. Aparently it is extremely hard to find in the heart. Easier in autopsy. I don't really wish to get to the autopsy stage. 

Yesterday I had a backwards day, a bit breathless and almost fell, couldn't walk more than a few steps. Hope today is better. 

They can't start treating the sarcoid until all the testing is done. And then will only treat it if it is in my heart. So the only medication I am on is the little magic pill that slightly lowers my pulse rate

I have been told it will take several years to recover. I can't even imagine going home and only functioning at this level for months let alone years. 

Wow. That’s a lot to absorb.

Do they think the little magic pill will cure you over time, then? Or is it a matter of providing supportive care while the body gradually heals itself?

Are they talking about sending you home in your present condition?

[cintinative]

@Melissa in Australia that is so much to carry. I am so sorry.

Praying for more light to shine in this darkness and for you to not lose hope.  

[Kassia]

That is a lot to absorb.  I hope they figure this out and the timeline for recovery is better than they are telling you now.  I'm so sorry about all of this.  I hope today is better for you.  I think it's perfectly normal to have good days and bad days in your condition.  Your poor body is completely exhausted and not used to any activity.  

 

[Melissa in Australia]

They are talking of sending me to rehab towards the end of this week for a few days then going home. The goal is that I will be able to walk the distance from my bedroom to the toilet with a walking frame.  Once I can do that distance they I will be good to go home. My bedroom Is at the opposet side of the house lengthways from the bathroom. 

[Innisfree]

9 minutes ago, Melissa in Australia said:

They are talking of sending me to rehab towards the end of this week for a few days then going home. The goal is that I will be able to walk the distance from my bedroom to the toilet with a walking frame.  Once I can do that distance they I will be good to go home. My bedroom Is at the opposet side of the house lengthways from the bathroom. 

That sounds like a lot to accomplish in a few days of rehab. I hope you’ll be able to stay there until you feel safe going home. In a way it might be helpful that your bedroom is not close to the bathroom: maybe that will get you a longer time in rehab gaining strength.

Sending lots of hugs. This has been such an ordeal. I hope this week brings reasons for optimism.

[cintinative]

50 minutes ago, Melissa in Australia said:

They are talking of sending me to rehab towards the end of this week for a few days then going home. The goal is that I will be able to walk the distance from my bedroom to the toilet with a walking frame.  Once I can do that distance they I will be good to go home. My bedroom Is at the opposet side of the house lengthways from the bathroom. 

I might be misunderstanding, but this upsets me.

Do they have a treatment plan in place? And where would you receive treatment? Would you have to go back to the hospital you are currently in?

Is your husband available to help you get food, bathe, dress, do laundry, etc.? This is one of those situations where here in the states the family could refuse to take the person home because they can't possibly care for the person properly. I am worried they are trying to push you out of the system again.

I am sure you absolutely want to be home, and they absolutely miss you at home.  But this is more complex than that.  I would love to see you home too, but much stronger than you are describing.  And I am confused about if your weakness is all from being bed-ridden or if it is related to your sarcoidosis. If the latter, I don't understand the decision to move you to rehab.

 

[popmom]

Rehab might be a step in the right direction—but not for “a few days”. You need physical therapy and possibly more importantly—you need a lot of occupational therapy before going home. Weeks of occupational and physical therapy.

I’m continuing to pray. 

Edited September 4, 2023 by popmom

[Kassia]

10 minutes ago, popmom said:

Rehab might be a step in the right direction—but not for “a few days”. You need physical therapy and possibly more importantly—you need a lot of occupational therapy before going home. Weeks of occupational and physical therapy.

 

Exactly.  She can't go from where she is now to going home after just a few days of rehab. 

[mom31257]

I am so sorry to hear this discouraging news, but I pray that rehab will actually be a place where you can improve and get some of your strength back. And praying that they will see the need to treat the sarcoid so that your recovery will not be so long. 

Hugs!!! 

[Melissa Louise]

Has a hospital social worker been to see you?

If not, can dh call the social work department of the hospital you are in? He may need to call several times - they are understaffed. I found it difficult to get hold of a sw even in the ICU. 

It's worth persisting.

When someone comes to see them, you need to lay out the situation at home.

Don't sugarcoat it. Don't tell them your strengths - tell them the challenges you are going to face at home with the distance to medical care, the twins and their care, and the lack of full-time care for you to convalesce (if I remember properly, your DH has some health challenges himself?) Think of the worst days and use them as your baseline to describe a day at home.

They will discharge anyone who isn't actively dying because bed block is a major problem. But you don't want to be discharged without a proper plan going forward. You need a plan in place for your care before they send you to rehab.

If you are too weak to advocate for yourself, deputize someone else to do it for you.

Good luck. 

 

 

[Melissa in Australia]

It is only because of the twins at home that I qualify for a few days of rehab. 

I will get 6 weeks of someone coming for approx 2 hours a week to do basic housework like cleaning bathroom

I don't know what the treatment plan is or any of those details yet. 

[popmom]

2 minutes ago, Melissa in Australia said:

It is only because of the twins at home that I qualify for a few days of rehab. 

I will get 6 weeks of someone coming for approx 2 hours a week to do basic housework like cleaning bathroom

I don't know what the treatment plan is or any of those details yet. 

I was just coming to ask if "home health" is a thing where you live...

Here--insurance will cover in home rehab--physical and occupational therapy. The doctor has to order it. Do you think you could advocate for something like that? I know you live in a rural area. 

Edited September 4, 2023 by popmom

[Faith-manor]

Hugs, so many hugs Melissa! I don't have any great wisdom except to say try to talk with the hospital social worker. Draw her a layout of the house, and estimates of how far it is to get between rooms, how far you are from getting help in the event that you fall, and tell her about the twins and how much at I imma you will need to do with them when you get home because they are going to need your attention. If you can show that person how it is just not possible to live at home in your current condition, they may advocate hard for you to have a longer time in rehab, and different goals for what it means to be ready to go home.

Lots of love from me.

[Melissa in Australia]

I don't think there is any physio where I live anymore. 

[popmom]

6 minutes ago, Melissa in Australia said:

I don't think there is any physio where I live anymore. 

I really hate that, but I am sure there are also really, really healthy aspects to living where you live!

If I am in your position, I would start looking at DIY rehab exercises. 

And I have zero idea how this works in Australia... disability benefits. You may need to retain the services of an attorney AND private social worker. If you need help raising funds for this, message me. I am sure all of us here would chip in whatever we could to get you the services you need.

What sort of support system do you have in your hometown? Do you feel like it would be enough?

Edited September 4, 2023 by popmom

[Rosie_0801]

8 minutes ago, popmom said:

And I have zero idea how this works in Australia... disability benefits. You may need to retain the services of an attorney AND private social worker. 

That shouldn't be necessary since it isn't a workplace issue.

[popmom]

17 minutes ago, Rosie_0801 said:

That shouldn't be necessary since it isn't a workplace issue.

See...I don't know how it works there. I hope it is easier there! Here it doesn't matter if it is a workplace issue. You nearly always have to have private legal representation to get disability benefits after an illness that results in long term disability.

Edited September 4, 2023 by popmom

[Melissa Louise]

Disability is hard to get here, unless you are fully treated and stable (ie your condition is unlikely to change). It's not a matter of lawyers. 

Also, lawyers can't magic up provision that doesn't exist.

Jobseeker with an illness exemption is possible, but dependent on many factors including spouse income and assets. It's not really enough to pay for therapies anyway. 

 

 

[popmom]

23 minutes ago, Melissa Louise said:

Disability is hard to get here, unless you are fully treated and stable (ie your condition is unlikely to change). It's not a matter of lawyers. 

Also, lawyers can't magic up provision that doesn't exist.

Jobseeker with an illness exemption is possible, but dependent on many factors including spouse income and assets. It's not really enough to pay for therapies anyway. 

 

 

Lawyers (((here))) don't "magic up provision that doesn't exist". It's just a way to be heard. It is far too easy for the government to wave you off without legal rep. So no one is advocating fraud here--just that you need someone to SHOUT above the noise of paper and red tape to get s&^% DONE  in a timely manner.

Clearly I don't have any idea how it all works there. I hope I didn't offend.

Edited September 4, 2023 by popmom
typo

[TravelingChris]

They sshould be treating youtr sarcoid

[Terabith]

I'm very confused about why they won't treat your sarcoid unless it's in your heart.

[popmom]

I am going to pray for myself to trust that the "powers that be" know much more than I do what your needs are. I know you are dearly loved and cared for by your family and you can trust them. It's hard to hear what you are going through on this end not being able to help in any tangible way. 

Please do let me or any of us here know if there is something we can do to help. 

I really do appreciate that you continue to update us. You don't owe us that--just to be clear. You can take a break from this if you need to. Do not let us add any stress to your situation. I know it is far too easy to cross the line from supportive to...controlling and stressful. 😞 ***But I'll take any update you want to offer! Much love and continued sincere prayers being offered for your healing from me. 

Edited September 4, 2023 by popmom

[TravelingChris]

Yes, do you have a pulmonologist?  You need one.

[Melissa Louise]

36 minutes ago, popmom said:

Lawyers (((here))) don't "magic up provision that doesn't exist". It's just a way to be heard. It is far too easy for the government to wave you off without legal rep. So no one is advocating fraud here--just that you need someone to SHOUT above the noise of paper and red tape to get s&^% DONE  in a timely manner.

Clearly I don't have any idea how it all works there. I hope I didn't offend.

You didn't at all. Sorry if I sounded brusque. It's more irritation at little help is out there and the massive effort it takes to get what there is. 

It's just not a thing lawyers get into here for something like an illness. 

[Melissa Louise]

24 minutes ago, Terabith said:

I'm very confused about why they won't treat your sarcoid unless it's in your heart.

It sounds as if they have had her on Prednisone, which is first line treatment. 

[Terabith]

1 minute ago, Melissa Louise said:

It sounds as if they have had her on Prednisone, which is first line treatment. 

Oh good.  I thought they were only giving her the beta blocker!

[Rosie_0801]

44 minutes ago, popmom said:

Lawyers (((here))) don't "magic up provision that doesn't exist". It's just a way to be heard. It is far too easy for the government to wave you off without legal rep. So no one is advocating fraud here--just that you need someone to SHOUT above the noise of paper and red tape to get s&^% DONE  in a timely manner.

Clearly I don't have any idea how it all works there. I hope I didn't offend.

Disability that isn't work related doesn't go to court here. There's no one for a lawyer to shout at.

[popmom]

48 minutes ago, Rosie_0801 said:

Disability that isn't work related doesn't go to court here. There's no one for a lawyer to shout at.

Is that a good thing? Do you feel that the system is equitable?

eta: it doesn’t “go to court” here either. The attorneys just facilitate the process. It’s not ideal. But it’s not like filing a lawsuit or anything like that. It’s just having “an authority” to vouch for you. That sort of thing. Not a lawsuit. I would liken it to a doctor writing a prescription. Except it’s for government services—not medication. Maybe that makes sense?? 
 

I know it’s different everywhere. Even within the U.S. —different states have different benefits. But I am not suggesting anything like filing a lawsuit. Lawsuits are for malpractice. What I'm talking about is advocacy. Sometimes you need legal rep just for advocacy here. 

Edited September 4, 2023 by popmom

[Melissa in Australia]

Just saw the doctors. Apparently a meeting of 25 doctors took place and it was unanimously decided that I will start a low dose of steroids for 4 weeks, getting less each week after all testing is completed because even if the tests and scans can find sarcoid in my heart it cannot be ruled out. 

I am relieved. 

I don't need to go onto disability. Will be ok. Thank you for the kind suggestions 

[Melissa in Australia]

1 hour ago, Terabith said:

I'm very confused about why they won't treat your sarcoid unless it's in your heart.

Aparently because the side effects of steroids are so damaging to the body

[Catwoman]

I'm glad you're getting the steroids and I hope they will help you!

I just wish you could spend at least a few weeks in a rehab center, rather than being sent straight home. You work so hard at home, and I hope your family will realize that you are unable to care for them the way you always have, and that everyone will try to be on their best behavior. The last thing you need right now is to go home to more stress. You have enough to worry about with your health!

I wish we all lived nearby so we could take turns visiting you and helping you with things. I hate the thought of you overdoing it as soon as you're able to get around a bit better. 😞 

[Ausmumof3]

3 hours ago, popmom said:

Lawyers (((here))) don't "magic up provision that doesn't exist". It's just a way to be heard. It is far too easy for the government to wave you off without legal rep. So no one is advocating fraud here--just that you need someone to SHOUT above the noise of paper and red tape to get s&^% DONE  in a timely manner.

Clearly I don't have any idea how it all works there. I hope I didn't offend.

You’re not offending anyone I don’t think. It’s more that for temporary disability we have a sucky system that doesn’t provide much. 

[popmom]

12 minutes ago, Ausmumof3 said:

You’re not offending anyone I don’t think. It’s more that for temporary disability we have a sucky system that doesn’t provide much. 

It’s not better here necessarily. But attorneys can help with the problem of proving there is long term disability. Depends on what one considers short vs long term disability. Here…what Melissa is experiencing—that’s long term disability. I know it’s a gray area. Just ignore me! I really do not intend to cause any stress. I can tell her specialists are very attentive. That’s very reassuring!

I am confident and grateful that she is getting quality care. 

Edited September 4, 2023 by popmom

[Pawz4me]

5 hours ago, Melissa in Australia said:

Aparently because the side effects of steroids are so damaging to the body

Bullfeathers. As if sarcoidosis in your lungs isn't damaging? That's crazy talk, and would be grounds for malpractice here.

Yes, steroids, especially a high dose, over a very long time can be damaging.

But when you need them to treat a condition then you need them. It's a risk versus benefit thing. And the standard of care for sarcoidosis AFAIK is steroid treatment. A month at a tapered dose isn't likely to damage anything and may result in huge improvement.

[cintinative]

1 hour ago, Pawz4me said:

Bullfeathers. As if sarcoidosis in your lungs isn't damaging? That's crazy talk, and would be grounds for malpractice here.

Yes, steroids, especially a high dose, over a very long time can be damaging.

But when you need them to treat a condition then you need them. It's a risk versus benefit thing. And the standard of care for sarcoidosis AFAIK is steroid treatment. A month at a tapered dose isn't likely to damage anything and may result in huge improvement.

This. Melissa, if you haven't reached out to the folks at the Sarcoidosis group, this might be the time. It's great that they had consensus among so many doctors there, but I struggle with wondering if any of them truly have experience with the severe sarcoidosis symptoms you are experiencing.   Big hugs.

[kbutton]

3 hours ago, Pawz4me said:

Bullfeathers. As if sarcoidosis in your lungs isn't damaging? That's crazy talk, and would be grounds for malpractice here.

Yes, steroids, especially a high dose, over a very long time can be damaging.

But when you need them to treat a condition then you need them. It's a risk versus benefit thing. And the standard of care for sarcoidosis AFAIK is steroid treatment. A month at a tapered dose isn't likely to damage anything and may result in huge improvement.

She had some high does steroids for several days already, IIRC. Is there a waiting period after that?

[Pawz4me]

5 minutes ago, kbutton said:

She had some high does steroids for several days already, IIRC. Is there a waiting period after that?

I think that was a couple of weeks ago? I'm not an expert on steroids, but I wouldn't think that would be an issue.

[Katy]

26 minutes ago, kbutton said:

She had some high does steroids for several days already, IIRC. Is there a waiting period after that?

No. At least the standard in the USA for cardiac sarcoid is a year on prednisone, which will definitely cause weight gain (possibly permanent, it changes the salt balance the kidneys filter so you retain water, and it causes insulin resistance which can lead to all kinds of problems.

Typically for less serious disease it will be a series of short courses. There is very little risk of long term side effects with up to a six week course. For something minor like a sinus infection sometimes 3-6 days is enough. Short term side effects can be emotional and cause trouble sleeping. 

I took repeated courses of prednisone with autoimmune problems and didn’t experience side effects until the 3rd course, mostly rapid weight gain. Until that point in my 20’s I could always just fast for a day or two and my weight would be back in control. On prednisone I water fasted for 3 days and gained 10 pounds in that three days. 
 

My guess is they’re worried she has a low level infection that is causing the cardiac symptoms rather than sarcoid and suppressing the immune system might bring back whatever it is as a raging infection. Like how they now think long covid means your body hasn’t totally beat the infection. Prednisone courses with long covid can make symptoms much worse according to a study sometime in the past 6 months I think. Especially because the heart symptoms got worse concurrent with the Covid infection. Basically they’re focusing more on do no harm than on making her feel better. In case the steroids cause more problems.