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Author Topic: Caregiver Nova Scotia  (Read 240 times)
Julie
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« on: March 12, 2017, 10:03:27 AM »

Hi everyone, my husband began hemo dialysis February 4th 2016, days before our scheduled wedding in Cancun Feb. 9/17.. we ended up getting married in our living room and will have our ceremony some day! We are young, active and have LOTS of children.

For the first few months he did in center hemo until we could get into home training. The plan was always home hemo but his kidneys deteriorated faster than any of us had planned.  He had a catheter line emergency inserted on the 4th and began his first treatment that day.

In June 2016 we were finally able to come home for treatments and began using his fistula October/16. He has had great success needling it on his own and his arm is so far still looking great. We opted for the button hole method but our center will no longer use that method.

We have had good bad and UGLY days over the last year but have had a much more positive experience since beginning home dialysis. I was a kidney match for my husband until the discovered in the final dye test that I had 3 arteries to my kidneys and they would not go ahead with the surgery. So now we are patiently waiting and trying our best to make the most out of things :)
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Simon Dog
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« Reply #1 on: March 12, 2017, 10:31:05 AM »

Amazing you married someone knowing dialysis or post-transplant complications would hang over your head for the rest of your lives together.    I wish you the very best.
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DayaraLee
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« Reply #2 on: March 12, 2017, 10:37:14 AM »

Julie, sounds like you both faced the shock with equanimity and have managed well to find a system that's working for you.  :2thumbsup; When my husband's time comes, our preference is something at home, too, whether that be PD or home hemo. So glad you found IHD!
 :welcomesign;
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My husband is the one with CKD, but I'm who needs the coping strategies!
CKD Stage 3A, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
Julie
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« Reply #3 on: March 12, 2017, 12:13:35 PM »

We certainly both took a while to adjust mentally, physically, financially, and still are but for the most part things are looking up as we are taking our independence back. The one thing we have learned is that life is short and we have no idea what the future holds so we want to make the experience as fulfilling as we can... we have extreme interest in NX Stage developments in Canada and any tips that can be offered for traveling right from some more experience travelers on dialysis. We do not yet have access to NXStage in our province
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cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: March 12, 2017, 01:58:12 PM »

Welcome to the site Julie

   :welcomesign;

Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
LorinnPKD
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« Reply #5 on: March 12, 2017, 04:40:08 PM »

Welcome to you both!  Just wanted to commend you on your practical and positive perspective.  I think it can be so hard for caregivers/partners and I hope you treat yourself with lots of TLC and support as well.

Travel is not impossible and there is good information here.  I'm in the US on in-center dialysis and hope to spend a week or two in the UK this fall if all goes well.

Enjoy the site...
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Julie
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« Reply #6 on: March 12, 2017, 06:01:20 PM »

That's great! Hoping everything goes well for you
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justagirl2325
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« Reply #7 on: March 14, 2017, 08:13:31 AM »

Hi Julie

Welcome to IHD and reach out anytime, I am also in Canada and my husband (44) does home hemo in Ontario.  We have travelled a few times in and out of Canada.  We also got married shortly after his diagnosis at city hall.


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smartcookie
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LMSW

« Reply #8 on: March 14, 2017, 02:05:40 PM »

Hi Julie!!  Welcome to the site!! 

There is tons of good information here an quite a few Canadians as well!   :2thumbsup;  Your dialysis center should be able to help you set up travel anywhere you want to go. 

Congrats on the marriage, as well!!  Easily one of the best things I have ever done!
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
SooMK
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« Reply #9 on: March 15, 2017, 06:32:56 AM »

Welcome Julie!
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
Michael Murphy
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« Reply #10 on: March 15, 2017, 11:07:17 AM »

Congrats, dialysis is made worse when you do it alone, with a good partner it's more survivable.
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Julie
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« Reply #11 on: March 20, 2017, 03:15:29 PM »

Hi Julie

Welcome to IHD and reach out anytime, I am also in Canada and my husband (44) does home hemo in Ontario.  We have travelled a few times in and out of Canada.  We also got married shortly after his diagnosis at city hall.


Thanks, will be in touch for sure, we are new to the whole travel thing.
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Julie
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« Reply #12 on: March 20, 2017, 03:24:04 PM »

Thanks everyone.. I have been following and reading IHD for a long time, before my husband even began dialysis, and have found a lot of great information, so I'm glad we have finally logged on. No one truly gets what you're talking about unless they are living it
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Michael Murphy
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« Reply #13 on: March 20, 2017, 09:25:53 PM »

If your wondering how much you can do on dialysis a member here Bill Peckham has posted a picture of him doing dialysis on a nxstage machine in the middle of the Grand Canyon. 
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Julie
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« Reply #14 on: March 21, 2017, 11:19:09 AM »

Yes.. I saw that, looked very cool. I'm hoping someday NX Stage is made available to us.
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