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myporkchop
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« on: June 22, 2016, 06:49:37 AM »

Hi everyone,

I found this website by chance and am so glad I did. I have found I have gathered more people's experiences of kidney failure/disease than I did when my Mum and I go and see the specialists.
My Mum has had numerous serious health conditions for years now, and I suppose it has all taken its toll on her poor kidney's. We knew her kidney's were not good, but it was only 5 weeks ago we were told she is in kidney failure.
This came as a complete shock as they had given her a time-frame to live from 3months to a year. What I thought was just a routine follow-up appointment with the neph turned into a nightmare.
They told my Mum that she should consider conservative treatment as she has other very serious health conditions and she may or not get better from dialysis.
They talked about her having better quality of life over quantity. However, since finding all this out my Mum's health went down hill. She began having sever pain in her lower back and ankles and couldn't walk. She was very short of breath all the time and we initially thought this was due to her COPD, but found that she was anemic. She had a iron infusion which helped her shortness of breath and she had more energy. However, within the last couple of weeks she has had a chest infection which the doctors say could have caused her to have a further decline in her kidney's - now 9%.
Obviously, we have been very worried and have been trying everything to make her better, such as acupuncture and deep tissue massage for the pain. She has just started gabapentin for her restless legs and itchy back.
We go to see the anesthetists tomorrow to see if she can have dialysis or not. We are in total shock mode right now.
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21st April 2016 - mum got told she had only a few months to live. Doctor's did not support dialysis treatment for her due to many other health complications. They didn't think she could cope and recommended conservative care. Our family was devastated. She is only 64 years old.

19th June 2016 - joined IHD. The support from all of you gave my mum the confidence to give dialysis a go.
26th September 2016 - started PD dialysis at home (CAPD). The first week has wrecked havoc with her blood sugar levels and diabetes, she has been in hospital twice within the week. Dialysis is going well though.
Charlie B53
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« Reply #1 on: June 22, 2016, 08:38:26 AM »


First, since this is your intro post, glad tohave you as a Member.  IHD has many caregivers members as well as those of us on dialysis.   You are among friends.

Now as for your Mothers difficulty breathing.

I too have a measure of COPD although they tell me I am in the 'Early' stages.  I once had a bout with congestive heart failure.  Dr didn't tell me as such, but the difficulty breathing, walking, very rapid resting heart-rate, ALL due to the decline in kidney function and water, or fluid, collecting in the lungs, heart-sac, and legs.

I was fortunate the large increase in water pills, and time, helped.  Beginning dialysis made the biggest improvement.  Loosing almost 40 pounds of excess fluid in the first week alone.

For these reasons I think you and your Mothers Neph need to seriously consider rapid intervention.

Getting rid of her excess fluid can make a major improvement in her condition, and thus make her much more comfortable as well as greatly improve not just her quality of life, but the duration of her life.

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myporkchop
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« Reply #2 on: June 22, 2016, 11:20:14 AM »

Thank you Charlie B53:

Yes the excess fluid is a major issue. She is always swollen, legs, hands arms.
Thank you your advice is very helpful, I really appreciate it :) I am so glad dialysis has made a big difference in your life. You have been wonderful support, thank you
Logged

21st April 2016 - mum got told she had only a few months to live. Doctor's did not support dialysis treatment for her due to many other health complications. They didn't think she could cope and recommended conservative care. Our family was devastated. She is only 64 years old.

19th June 2016 - joined IHD. The support from all of you gave my mum the confidence to give dialysis a go.
26th September 2016 - started PD dialysis at home (CAPD). The first week has wrecked havoc with her blood sugar levels and diabetes, she has been in hospital twice within the week. Dialysis is going well though.
DayaraLee
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« Reply #3 on: June 22, 2016, 12:31:22 PM »

I just wanted to say hello and let you know that the people on IHD are wonderfully supportive and amazingly knowledgeable - you've come across the right site and the right individuals! I've lurked for quite a number of years and just recently became a member. (I'm caring for my husband who has kidney disease with many risk factors for progression/complications.) I'm a novice at sharing knowledge or experience...I really don't have any yet to share. I definitely come here to soak it up and not dispense it.   ::)   Please know that even though I haven't walked in your or your mum's shoes, I understand your worry and fear and hope sincerely that choices are made that allow you to have many years left together.
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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
myporkchop
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« Reply #4 on: June 22, 2016, 10:46:37 PM »

Thank you DayaraLee, what lovely words. You brought a tear to my eye. Thank you and all the best to you and your husband x
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21st April 2016 - mum got told she had only a few months to live. Doctor's did not support dialysis treatment for her due to many other health complications. They didn't think she could cope and recommended conservative care. Our family was devastated. She is only 64 years old.

19th June 2016 - joined IHD. The support from all of you gave my mum the confidence to give dialysis a go.
26th September 2016 - started PD dialysis at home (CAPD). The first week has wrecked havoc with her blood sugar levels and diabetes, she has been in hospital twice within the week. Dialysis is going well though.
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