Much worse following bone marrow biopsy

[sunshine44]

Prayers for Andrew and Judee

 

[Judee]

Update on Andrew: His friend said, "Hes not doing well and has lost his appetite. He feels like his body is deteriorating."

She also got his home address and said it is okay to mail things there as his caregiver is retrieving his mail and bringing it to him. She said he also said seeing posts on the forum would help him too.

So if you want to send him a card, please pm me for his address. Otherwise by his comment I would say you can also post a message here to him.

***Get well, @Andrew. We're praying for you and miss seeing your posts, your creative and artsy purchases, and your droll sense of humor.***

Edit: And your encouraging faith messages.

 

[linusbert]

Get well soon Andrew, may God give you relief!
May you think next year about this time now, and say , o how was i bad then, but glad this is so much better now again.

 

[Judee]

I'm sorry I haven't been keeping up with getting and giving updates.

On Sunday she messaged me that Andrew was so wiped that she could only have a couple sentences conversation with him.

On Tuesday, their conversation was a lot longer than usual. @linusbert, this is when she passed on your message to him along with other's well wishes.

She said he was having nausea unrelieved by any med but she said in spite of his discomfort he was actually sounding stronger that day.

She did say that his memory is poor (short and long term) but she attributed that to the pain meds. She said he knows that he is muddled. She also asked about his O2 saturation levels and he said they are always in normal range.

Then on Wednesay, she said he was feeling like he was getting weaker so she asked that we keep the prayers going.

 

[linusbert]

ok i just sent another prayers

 

[Judee]

Andrew update (kinda):

She said, "Andrew keeps on saying they will send him home soon, but doesn't know when." He also, "has a social worker assigned to him for his discharge needs."

That last part makes me feel better...as long as he's comfortable with the idea of going home. I asked her and will try to post an update on that if she gives me one.

Thanks for your prayers everyone!!!!

 

[Judee]

Andrew update:

On Monday, his friend said, "Andrew is concerned because he still can't walk. especially up a flight of stairs to his apartment. Hopefully the social worker will do her job and offer solutions and support."

On Tuesday she said, "Andrew is home as of yesterday afternoon and left me a message last night. he appreciates the card and messages. I haven't been able to reach him on phone today. I haven't checked facebook, though."

I hope he's okay esp since he was so apprehensive about being able to walk. They must have found a way to help him up the stairs but it probably was rough for him. He's probably in a crash. I hope they have someone taking care of him a lot and not leaving him alone by himself in this condition too much.
Keep the prayers going up for him if you can. I will too.

Also if I can, I will see if she left me another message today. Not totally sure I will a be able to though as I have an stressful appt on Monday that I have to get ready for.

 

[Mary]

A friend of his told me he had a severe fall at home (secondary to leg weakness from low potassium).

Because of the low potassium they were also treating him with IV potassium. He was still very weak though and didn't think he would be able to get up the stairs to his apartment.

Low potassium can cause severe fatigue - I've experienced that. I'm glad this was discovered and Andrew, I'm glad you were given IV potassium while in the hospital - but I think it's very likely you may need to supplement extra potassium every day. I have to take 1200 - 1500 mg. of potassium every day in divided doses - otherwise I experience symptoms of hypokalemia pretty quickly.

I think people with ME/CFS are prone to low potassium because of the nature of our illness. This post explains how people with low potassium can have "normal" blood levels but low intracellular potassium.

Something simple you could try is to drink several glasses of low-sodium V-8 a day. It's high in potassium and a quick and easy way to get it. Too many of the other foods high in potassium like bananas and sweet potatoes are also very high in sugar. And if the low-sodium V-8 helped you, you could think about taking a potassium supplement daily. Because your levels should not have gotten that low to cause a fall and to require an IV - whatever caused the low potassium which was treated in the hospital I would bet is still ongoing.

Also, low potassium can cause nausea and loss of appetite.

And one other possibility is low phosphorous. I've recently been dealing with that and it too can cause severe fatigue and nausea. One of my symptoms was loss of appetite, especially in the morning - but the fatigue was the worst. It's a long story how I first discovered low phosphorous - had to do with thiamine and refeeding syndrome. Anyways, I have to take phosphorous daily as well as potassium. Basically I treat myself because I don't go to the doctor every time I get extra tired. They wouldn't know what to do.

Something simple to see if low phosphorous is an issue is to drink a lot of milk or kefir and see if symptoms improve.

But overall - since you did show low potassium in the hospital, I think it's very likely you're dealing with it on an ongoing basis and it could explain a lot of your symptoms - severe fatigue, nausea.

Andrew, I'm really sorry it's been so hard for you for so long! This illness is - words are failing me here unless I use pretty bad ones that might not be appropriate!

 

[linusbert]

I have to take 1200 - 1500 mg. of potassium every day in divided doses - otherwise I experience symptoms of hypokalemia pretty quickly.

i wonder would 500g potatoes work for you too? has about the 1500mg of potassium.
i went down that route, not sure what it does yet, if anything.

potassium should be accompanied with some thiamine. if severe depleted of one of both, giving the other could be nasty.

 

[Mary]

@linusbert - it doesn't seem to matter how much potassium I eat. Or, if I ate a lot of potatoes or other foods high in potassium, I think I would start to gain weight. I had to start taking extra potassium when I started taking methylfolate in 2010, and my need for extra potassium has never lessened since then. A few months ago I had to increase my usual 1000 mg a day, out of the blue to about 1400 or 1500 - I don't know why, but I was suddenly getting extra symptoms of low potassium - my feet would start twitching, one night I woke up with a sharp spasm in my foot/ankle/lower calf, a sure sign - despite all my supplementation. So I just increased it and do okay. It's all I can do to not gain weight, even though I'm very careful about what I eat, and if I suddenly added in a pound of potatoes, I would also start packing on the pounds!

I do take thiamine, I have since 2017 or 2018 - and THAT increased my need for phosphorous! So I had to start taking phosphorous, in addition to everything else I take. I switched my phosphorous supplement 3 or 4 months ago and then 2 months ago or so realized my energy was flagging, not good - and finally figured out last week that my phosphorous got low - was not taking enough of the new supplement. It's a long boring story. So am going back to my original supplement, and my energy is coming back. It's a never-ending struggle to take the right amounts of everything!

I think ME/CFS truly interferes with absorption and metabolism - I shouldn't have to take everything I do - I never had to take all this before getting sick.

 

[Mouse girl]

thinking of you and praying for you, Andrew. I often wonder how you are doing.

May God be with you.

irene

 

[Judee]

Update on Andrew:

On Sept 19, she got a hold of Andrew. He was back in the hospital again. His blood pressure got too low and he was feeling awful. She said, "I know he's been struggling with nausea. He could be very dehydrated secondary to that."

She was trying to reach him by cell after that but he wasn't answering and his voicemail box was full.

On Sept 24, she got a hold of him again and said, "He's still in hospital but may go to a nursing home because he's on second floor apartment, the issues of getting up and down stairs became obvious once he was home for a day. Will let you know more as I find out more..."

She hasn't messaged me since then. Hope they are both okay.

 

[Zebra]

Hi, @Judee

Thank you so much for this update.

I feel so badly for Andrew. It seems like a moving to a nursing home might be necessary, but what a transition that will be, in addition to all the logistics that go with it.

 

[linusbert]

is there a chance he can get to something like assisted living with a elevator?
or have just a different flat which accomodates more his needs?
in germany we have something thats inbetween a nursing home and a own flat, its build with disability in mind and the flats have a emergency button. often there is even personal which could check in by the push of a button. also a ambulant nursing service which checks in a few times a day, doing assistence he might need.

 

[Hufsamor]

Same in Norway

 

[Zebra]

In the United States, such living facilities are privately owned and operated. Very few can afford them.