Much worse following bone marrow biopsy

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lenora

Senior Member
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5,035
Hi Andrew.......Are you being careful with your electrolyte balance? Staying hydrated isn't enough and the same symptoms can be caused by both dehydration and electrolyte imbalances. The symptoms are the same as you mentioned above. Keep some Pedialyte on hand.

It's an exceptional summer and even in the home some rooms are hotter/colder than others. All of us need to be very aware of this situation and also be aware that not just the outdoors is our enemy.

I recently read that temperatures as low as 92 degrees can result in heat stroke and no, you aren't always aware of it.

I'm sorry that you're having such a terrible time of things, but do be very careful of those electrolytes. A number of us have ended up in the hospital because of them. Feel better. Yours, Lenora
 
Hufsamor

Hufsamor

Senior Member
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Norway
Thanks .As I m slowly growing older with this disease, I’m kind of trying to make some sort of a plan …

will it burn out or will it get worse? And what may the age itself bring on the table? I know things happens, it’s not possible to plan for everything. But I believe, for myself, it might be smart to consider and do what I can do now, in order to make life as easy as possible in the years to come.

If you could give yourself an advice those 18 years ago, what would it be?
In order to make life now as easy as possible?
 
Judee

Judee

Psalm 46:1-3
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Andrew said:
Not well. Getting worse. I'm trying to do end-of-life planning just in case but it's confusing.
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Oh, no. That makes me sad. :(

I'm sorry you're going through that.

Praying.

Edit: After that periodontist visit did they put you on antibiotics?

On the documentary thread I posted about a YouTube channel called something like, "Theviolindoctor" I think it was. She had one episode where a man had some dental work and the infection in his mouth got stirred up by that and traveled to his heart valve, spleen and vascular system iirc. He almost died.

Maybe something like that is going on with you. Please get checked out soon if you think it could be something like that. :please:

Edit #2: Here's that VIDEO I mentioned in case you wanted to watch it. Her segments are very interesting.
 
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Andrew

Andrew

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Los Angeles, USA
This just goes up and down and up and down. Which is better than down and down. And I'm not even sure if this has to do with the biopsy. But the doctor is going to order and Xray of the location where the biopsy was done because it still hurts.

I guess I'll just have to see where this goes. But I'm not afraid anymore. I feel a a little hopeful.
 
Hufsamor

Hufsamor

Senior Member
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Norway
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M

Mouse girl

Senior Member
Messages
600
Andrew said:
This just goes up and down and up and down. Which is better than down and down. And I'm not even sure if this has to do with the biopsy. But the doctor is going to order and Xray of the location where the biopsy was done because it still hurts.

I guess I'll just have to see where this goes. But I'm not afraid anymore. I feel a a little hopeful.
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oh, i'm so glad. so glad you don't feel afraid and a wee bit hopeful. just not feeling so scared is huge. i've been thinking about you and worried. i don't know if you remember, but i know you in real life. we were in the same support group and you hired me a few times to drive you around. just thought i would describe it rather than say my name.
 
Judee

Judee

Psalm 46:1-3
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So I wanted to give an update on Andrew. A friend of his told me he had a severe fall at home (secondary to leg weakness from low potassium).

So he was an inpatient for a while at the hospital where they learned he had a fractured vertebrae (which was repaired using ” bone cement" and successful in pain relief at the time).

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. They sent him to rehab instead but when she talked to him there some days later, he was not doing well and it was painful for him to talk to her even for a short time. :(

Please say a prayer for Andrew. He's going through so much and in addition to the ME. :(
 
Zebra

Zebra

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Northern California
Oh @Judee

Thank you so much for this update!

Of course it is hard to hear.

Andrew seems like such a gentle, kind soul.

My memory is that Andrew is alone in his struggles.

I would never, ever want to invade his privacy, but I'm wondering if it would be possible for a few of us to send him cards?

I was in the hospital for 15 days last year, and in addition to experiencing hospital-induced delirium, I can say that it begins to feel that your body, your illness, your hospital bed, your hospital room is ALL that exists. Especially if you are nowhere near a window and/or if the nursing staff is overworked or uncaring.

Again, not trying to invade Andrew's privacy, just wondering if hearing from the "outside world" might be helpful to Andrew.

🙏🏻
 
Judee

Judee

Psalm 46:1-3
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Great Lakes
He's in rehab now but I know that's not much better than hospital stays and maybe even worse.

I'll ask her what she thinks and if she thinks he would be okay with the idea and if so have her pm me where he's at so I can let people know.

@Zebra, I think it's a really good idea. Would maybe make him feel not so alone.
 
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L

lenora

Senior Member
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5,035
@Judee also needs our thoughts and prayers. Cards are impossible, I've tried to get an address, but privacy is a important tool when you're like us; but thoughts & prayers are always easy to convey.

Anyway, I know that she's so caring of other people, but could use a little care herself. We take turns...or so it seems.

@Andrew, I do hope things are better for you. Do you have someone with you at home? I know we get tired of that old saw, "be strong."........but just "be" Andrew & @Judee. We'll hope that easier days are ahead for you.

Many of you are so kind and strong yourselves. You do make an impression. Be well. Yours, Lenora
 
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