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Author Topic: Caring for others with chronic illnesses  (Read 154870 times)

Offline killersmom

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Re: Caring for others with chronic illnesses
« Reply #1080 on: January 24, 2013, 11:24:24 AM »
An update on my husband Michael.

I haven’t posted for a long time as he’s been pretty stable:  Not much change in the myeloma, and peritoneal dialysis 3 times a day at home (and abroad – Australia twice, walking holiday in Italy, sailing in the Greek islands, on trains, planes, taxis and on mountainsides) has been very successful over the past 2 years. It would have driven me mad if it had been me, but he just adapted to it and fitted his life around it.

But in the last few months he has been gradually going downhill, with exhaustion, nausea, clumsiness and difficulty in walking, and since New Year he (and I) started to get really depressed and worried about himself, something which rarely happens. Last week it was a relief to find out  that this is unlikely to be caused by the cancer, and a complete x-ray showed that he still has no bone damage from the myeloma.

Today however we learned that it was what had been becoming more likely – his kidney function has deteriorated almost to zero, and the level of dialysis is no longer enough, so that he has become poisoned by the waste products in his blood. It was some comfort to know that all his symptoms can probably be attributed  to this, and also that a return to haemodialysis in hospital 3 times a week should improve things considerably.

This will start on Saturday, at first in the large hospital 25 miles away, but soon hopefully in a small hospital an easy drive from home, where he was before. In some ways it will be a lot less time-consuming, but much less flexible of course, and holidays will have to be planned even more carefully - but still possible. Generally I feel relieved.

So I am just praying that he will start to feel better soon, and return to the near-normal life he’s been leading for the majority of the time since it was all diagnosed (just over 3 years ago)



(((((Sara)))))!!
I am so very relieved they have been able to give you a definite diagnosis of what his problem is, and that there is a positive treatment for it.
I know you are too, and so I am hoping and praying the treatment starting Saturday will bring him back to his more active and feeling better self.

I am sorry that the home dialysis has not worked, but I am praying for a workable solution for both of you!

:-* and hugs.
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Offline janjo

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Re: Caring for others with chronic illnesses
« Reply #1081 on: January 24, 2013, 11:33:21 AM »
 :-* :-*Sara and Mr M :-* :-*

I am so relieved that disruptive as hospital dialysis will be for Mr M, that the myeloma is no worse and there is something that can be done to restore him to his usual amazing self.

Thinking of you both, love from Mr Janjo and myself.
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Offline ingmarnicebbmt

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Re: Caring for others with chronic illnesses
« Reply #1082 on: January 24, 2013, 11:37:07 AM »

(((Sara and Michael)))

Relieved too, in a way, and also hoping that things will improve soon, and that your mood will improve back to optimism.  ;)

Mr S and I send love, positive vibrations and encouraging hugs and think of you constantly & fondly.

Best wishes  :-* :-* :-* :-*
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Offline dejavu

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Re: Caring for others with chronic illnesses
« Reply #1083 on: January 24, 2013, 11:40:14 AM »
(((Sara)))

It is good to know that something can be done for M, and starting as quickly as Saturday.

Hope it helps.  May thoughts and prayers are with you both.
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Offline Miaisland

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Re: Caring for others with chronic illnesses
« Reply #1084 on: January 24, 2013, 11:45:07 AM »
((((((Dearest Sara)))))) !!

For you, for both of you I so hope that the hospital dialysis will change things fast, so that Mr M gets energy back very soon.

Thinking about you with love and praying for both of you.

 :-* :-* :-*
“Ours is not the task of fixing the entire world at once, but of stretching out to mend the part of the world that is within our reach.” - Clarissa Pinkola Estés

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1085 on: January 24, 2013, 11:56:24 AM »
Fritz, Kathryn, Linda, Jess, Ingy, Debbie, Mia - thank you all so much for your support and sympathy. As most of you know, it really does help.
“When we grow older still we’ll speak about those two young men as if they were two strangers..... And we’ll want to call it envy, because to call it regret would break our hearts.”

Call Me by Your Name, André Aciman.

Offline CellarDweller115

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Re: Caring for others with chronic illnesses
« Reply #1086 on: January 24, 2013, 12:46:39 PM »
Sara, I'm so relieved to hear this!  (((Sara & Mr. M)))

Offline fritzkep

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Re: Caring for others with chronic illnesses
« Reply #1087 on: January 24, 2013, 01:48:00 PM »
Geaux Sara and Mr M!

Werd ich zum Augenblicke sagen, "Verweile doch! Du bist so schön..."

Offline suelyblu

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Re: Caring for others with chronic illnesses
« Reply #1088 on: January 24, 2013, 02:31:53 PM »
Sara.....I'm glad the news you and Michael received was something that could be dealt with.
Please keep us updated as much as you can.......' cause we care  :-*  :)
"I  know that ghosts have wondered on the earth,
 Be with me always. Take any form. Drive me mad,
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Offline Sason

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Re: Caring for others with chronic illnesses
« Reply #1089 on: January 24, 2013, 04:17:37 PM »
((((Sara and Michael))))   :-* :-* :-*

So relieved that the myeloma is under control still, and that his symptoms can be remedied by increased dialysis.

Hopefully he'll be back to his usual self again soon after the new dialysis starts.

And you'll still be able to travel!!

Düva pööp is a förce of natüre

Offline Tony_

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Re: Caring for others with chronic illnesses
« Reply #1090 on: January 24, 2013, 04:22:53 PM »
 Sara - it's really progress to have a diagnosis.  Much worse than not knowing.  And am especially hopeful that things can get somewhat back on track. Thanks for letting us know.  We all are with you, on this.

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1091 on: January 25, 2013, 08:34:11 AM »
((((Sara and Michael))))   :-* :-* :-*

So relieved that the myeloma is under control still, and that his symptoms can be remedied by increased dialysis.

Hopefully he'll be back to his usual self again soon after the new dialysis starts.

And you'll still be able to travel!!

Thanks, dear Sonja - and yes, fingers crossed to all that!  :-*
“When we grow older still we’ll speak about those two young men as if they were two strangers..... And we’ll want to call it envy, because to call it regret would break our hearts.”

Call Me by Your Name, André Aciman.

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1092 on: January 25, 2013, 08:35:26 AM »
Sara - it's really progress to have a diagnosis.  Much worse than not knowing.  And am especially hopeful that things can get somewhat back on track. Thanks for letting us know.  We all are with you, on this.

Tony, thank you. And I really do feel the support.
“When we grow older still we’ll speak about those two young men as if they were two strangers..... And we’ll want to call it envy, because to call it regret would break our hearts.”

Call Me by Your Name, André Aciman.

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1093 on: January 25, 2013, 08:39:26 AM »
I found it difficult to talk yesterday so sorry I didn't acknowledge all your lovely thoughts individually. (((Dear friends))), it means such a lot.
“When we grow older still we’ll speak about those two young men as if they were two strangers..... And we’ll want to call it envy, because to call it regret would break our hearts.”

Call Me by Your Name, André Aciman.

Offline janjo

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Re: Caring for others with chronic illnesses
« Reply #1094 on: January 25, 2013, 08:41:15 AM »
We cared so much about you yesterday.
Don't worry about us.
That's what we are here for.
Brokeback short stories at storybyjanjo.livejournal.com

"Are birds free from the chains of the skyway?"
Ballad in plain D: Bob Dylan