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Author Topic: New to all of this  (Read 3878 times)
AshtonsMuse
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« on: January 09, 2017, 01:00:13 PM »

My name is Andrea and I'm the caregiver to my husband who started dialysis in September 2016.  It has been a difficult adjustment.  We have a teenage son who afraid of losing his dad.  We both work full time.  My husband has been able to maintain his job, thankfully.  He had his first transplant evaluation appointment last week and we are very hopeful that his condition is healthy enough to be listed.  Currently he is in center-hemo with a tunnel cath.  He is awaiting clearance to use the av graft.   He'd like to do home hemo and I'm hoping to become better-informed so I can be a better "caregiver".

Thanks, and nice to meet y'all.

Andrea
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Michael Murphy
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« Reply #1 on: January 09, 2017, 03:57:35 PM »

Welcome,  sounds like your husband is adjusting.  Tell your son people have been on dialysis for decades.
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Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #2 on: January 09, 2017, 05:02:59 PM »

I was my daughters caregiver for NXStage home hemo. She had a tunneled CVC cath for over two years.There are people on here with tons of knowledge and always happy to help...so ask away :)
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My name is Bruce and I am the caregiver for my daughter Holly who is 31 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
DayaraLee
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« Reply #3 on: January 09, 2017, 07:29:49 PM »

Hello, Andrea! This is a fabulous place to find information - the repository of knowledge and experience can sometimes be overwhelming! In a very good way, of course...  :2thumbsup;  So glad you found IHD!
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Husband Dx - CKD Stage 3, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: January 10, 2017, 04:29:50 AM »

Welcome to the site Andrea

   :welcomesign;


Take care, 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
2020 start Gambro AK96

       still on waitinglist, still ok I think
Charlie B53
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« Reply #5 on: January 10, 2017, 06:15:33 AM »


Welcome to IHD Andrea,
We are always glad to have another member.  Most all here are caregivers or patients.  You are doing well, finding us is a great step in learning more about your Husbands challenges.  Your Son may find help here also.  Some of our members started very young, and are willing to talk about it, explain to him how Dad is always ar risk, but with proper treatment Dad should be around for a long time yet so Son's worries should be minimal.

Take Care,

Charlie B53
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AshtonsMuse
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« Reply #6 on: January 11, 2017, 05:52:36 AM »

Thanks for the warm welcome.

We just found out that the transplant committee is meeting this Friday.  We're so nervous.  He's got some complicating issues (aneurysm in the iliiac artery).  Seems like nothing moved fast with the dialysis center, and everything is moving so fast with the hospital.

Glad to have found y'all.  We have lots to learn. 
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cassandra
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When all else fails run in circles, shout loudly

« Reply #7 on: January 11, 2017, 08:30:39 AM »

Good luck for Friday!

Love, luck and strength, 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
2020 start Gambro AK96

       still on waitinglist, still ok I think
AshtonsMuse
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« Reply #8 on: January 11, 2017, 09:18:13 AM »

Thank you!  We'll need all that and then some.  Ashton's worried he won't get listed because of the aneurysm.  He's got an appointment tomorrow to get a 2nd CT section scan done of it.  Hope it gives him some peace of mind.  :pray;
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AshtonsMuse
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« Reply #9 on: January 16, 2017, 06:56:32 AM »

They cleared him to move forward with the transplant evaluation.  I'm so relieved.   :yahoo;
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MooseMom
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« Reply #10 on: January 16, 2017, 08:45:13 AM »

That's fabulous news!  Many of us have been through transplant evaluations, so if you have any questions, perhaps we can help!

So glad you found us!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
AshtonsMuse
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« Reply #11 on: January 16, 2017, 08:51:11 AM »

Me too!  Thank you!  This whole experience has been scary, and isolating.  So it's been really wonderful to find you all. 
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cassandra
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When all else fails run in circles, shout loudly

« Reply #12 on: January 16, 2017, 04:30:11 PM »

Congrats.

   :yahoo;

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
2020 start Gambro AK96

       still on waitinglist, still ok I think
AshtonsMuse
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« Reply #13 on: January 17, 2017, 06:46:48 AM »

Thank you!!!
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