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Author Topic: Caring for others with chronic illnesses  (Read 197837 times)

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1095 on: January 25, 2013, 08:47:05 AM »
((((Jess))))

Offline suelyblu

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Re: Caring for others with chronic illnesses
« Reply #1096 on: January 25, 2013, 09:06:56 AM »
Sara....hope things seem a bit more positive today. Thinking of you and Mr M.  :-*
"I  know that ghosts have wondered on the earth,
 Be with me always. Take any form. Drive me mad,
 only do not leave me in the dark alone, where I cannot
 find you.
 I cannot live without my life.
 I cannot die without my soul.
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Offline MaineGirl

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Re: Caring for others with chronic illnesses
« Reply #1097 on: January 25, 2013, 03:52:47 PM »
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 and Michael))))))

You have been in my thoughts and prayers... I am glad that the myeloma news is good news and the rest of it seems pretty positive too  Here's to Michael getting his strength and energy back soon after the new dialysis treatments start and to the both of you feeling better and climbing out of the depression quickly. 

Sending love and positive energy to you both.   :-* :-*
"It is no accident that we all lie nestled together in the curves of the universe.  We are tugged by the forces of the celestial tides.  Time folds in on itself and outward again in gladness as we spin around, each of us an utter miracle in a sea of tiny white stars."  Jamien E. Morehouse

Offline suelyblu

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Re: Caring for others with chronic illnesses
« Reply #1098 on: January 26, 2013, 05:42:19 AM »
Good Morning Sara ,

Hope things are going better for you and Mr M. In ny thoughts and prayers.  :-*
"I  know that ghosts have wondered on the earth,
 Be with me always. Take any form. Drive me mad,
 only do not leave me in the dark alone, where I cannot
 find you.
 I cannot live without my life.
 I cannot die without my soul.
                                          .

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1099 on: January 26, 2013, 08:59:28 AM »
Thank you very much for your thoughts, (((Sue and Sue))) :)

3 hours' dialysis (I'm getting so good at spelling that!) this morning. It went fine, but now he's sleeping it off at home. Nothing till Tuesday now, which seems really strange...

Offline tfferg

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Re: Caring for others with chronic illnesses
« Reply #1100 on: January 26, 2013, 01:58:05 PM »
Sara, I'm sorry to hear that the home dialysis was no longer effective for Michael, but it is a relief that he can get treatment at the hospital. I hope he is recovering well.

Offline jack

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Re: Caring for others with chronic illnesses
« Reply #1101 on: January 26, 2013, 10:44:01 PM »
dear sara,

i just wanted to say to you both what a wonderful job you have done thus far at using what you have rather than stewing over what you hadn't got.  that is one of the main lessons i took away from my father's life as he dealt with the depredations of chronic heart disease.  over time it would get worse and his body would get insufficient oxygen to do the active things he knew and enjoyed the best in life, but he always found a way to max out what strength he did have to great advantage, developing sides of himself neither he nor i knew he had.  in time science would provide an advance that gave him more strength and mobility for an indeterminate period, and he would up his performance accordingly, until that gain too petered away.  he lived fully that way 25 years longer than anyone expected given the family history of heart disease, dying at 80.  the first time i heard him sound defeated by a diagnosis, i hitchhiked from florida up to upstate ny, because that simply wasn't his way, and i think my coming back pleased him more than anything else i had ever done.  we had one good day, and the next he went into that death spiral that those at the end of their life enter and died the day after that.  at 80, in his own home, his family and cats all present.

to have managed all the traveling you have done, and to enjoy life fully, and to return in short order again using all that you have and not wasting time regretting what you haven't.  that isn't failure to me, that is successive successes.  my best to you both.  enjoy life.
"through Seneca Falls, and Selma, and Stonewall..."

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1102 on: January 27, 2013, 10:59:14 AM »
Sara, I'm sorry to hear that the home dialysis was no longer effective for Michael, but it is a relief that he can get treatment at the hospital. I hope he is recovering well.

Thanks, Tony - he's still tired, but says he really is starting to feel different - in a good way. Hope we may manage a trip to Oz in your autumn - and perhaps see you again.

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1103 on: January 27, 2013, 11:01:08 AM »
Jack, it was so nice to read your post. Thanks - and good to hear about your father (and that he was a cat-lover too ;)).

Offline suelyblu

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Re: Caring for others with chronic illnesses
« Reply #1104 on: January 29, 2013, 01:16:16 PM »
Sara....hope things are still going well for Mr M.....and you. Take care  :-*
"I  know that ghosts have wondered on the earth,
 Be with me always. Take any form. Drive me mad,
 only do not leave me in the dark alone, where I cannot
 find you.
 I cannot live without my life.
 I cannot die without my soul.
                                          .

Offline bubba

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Re: Caring for others with chronic illnesses
« Reply #1105 on: January 29, 2013, 01:45:30 PM »
Yes you take care, I had no idea!

((((HUGS))))
There are those who look at things the way they are, and ask why... I dream of things that never were, and ask why not?

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1106 on: January 30, 2013, 03:03:24 AM »
Sara....hope things are still going well for Mr M.....and you. Take care  :-*

Thanks, Sue. He had a bad reaction to the dialysis yesterday, but he's quite a bit better today. We'll find out tomorrow how common this is and if it should improve soon (It didn't happen when he had haemodialysis 3 years ago.)

Offline Sara B

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Re: Caring for others with chronic illnesses
« Reply #1107 on: January 30, 2013, 03:03:49 AM »
Yes you take care, I had no idea!

((((HUGS))))

Thank you for the hug, Bubba :-*.

Offline MaineGirl

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Re: Caring for others with chronic illnesses
« Reply #1108 on: January 30, 2013, 03:27:59 PM »
Thanks, Sue. He had a bad reaction to the dialysis yesterday, but he's quite a bit better today. We'll find out tomorrow how common this is and if it should improve soon (It didn't happen when he had haemodialysis 3 years ago.)

Other Sue here.... I am so sorry to hear about the bad reaction, but glad to khow he's feeling better today.  I do hope the trend continues and that it's just a reaction to the stronger dialysis after having been on the less effective treatments recently.

Thinking of you both (((((Sara and M))))
"It is no accident that we all lie nestled together in the curves of the universe.  We are tugged by the forces of the celestial tides.  Time folds in on itself and outward again in gladness as we spin around, each of us an utter miracle in a sea of tiny white stars."  Jamien E. Morehouse

Offline suelyblu

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Re: Caring for others with chronic illnesses
« Reply #1109 on: January 31, 2013, 04:49:54 PM »
Thanks, Sue. He had a bad reaction to the dialysis yesterday, but he's quite a bit better today. We'll find out tomorrow how common this is and if it should improve soon (It didn't happen when he had haemodialysis 3 years ago.)

Hi Sara,
Did you find out what caused the bad reaction to Mr M's dialysis yet ?? Do hope things will settle down for him....and you. It must be a big worry. In my thoughts and prayers

                                                         ((((((Sara & Mr  M))))))
"I  know that ghosts have wondered on the earth,
 Be with me always. Take any form. Drive me mad,
 only do not leave me in the dark alone, where I cannot
 find you.
 I cannot live without my life.
 I cannot die without my soul.
                                          .