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gilders
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« on: July 05, 2016, 05:04:11 AM »

Hi,
My story is long and complicated and includes many health conditions, so I'll try to condense it and focus on kidneys.
I am a 38 year male born (and living) in Yorkshire, England. Just over 20 years ago, aged 17, I was diagnosed with Wegener's Granulomatosis. It was this disease that severely damaged my kidneys. I was placed on hemodialysis 3 times a week and after only about a month (plus a multitude of drugs and chemotherapy) my kidneys regained a good deal of function and I did not need further dialysis. In the 20+ years since, I have had relapses/flares of Wegener's Granulomatosis and each time it has done further permanent damage to my kidneys. The most recent relapse has left me with eGFR of 18% with the occasional result dropping to 14%. Therefore I am now one relapse/flare or even bad cold/virus away from needing dialysis.

As my kidney function stabilises (sometimes for quite a few years) then drops off suddenly, there is no predication as to the exact time I need a transplant/dialysis. My hope was to have a living donor transplant before I need dialysis, but as mentioned, I don't know exactly when that will be. I did think having a transplant early would be better than waiting until I was on dialysis as I had read that the most succesful transplants are ones performed before the need of dialysis. But I recently found out that if the transplant fails, my remaining kidney function would immediately drop and a failed transplant would equal immediate permanent dialysis. As I may be lucky enough to have a few years left of barely adequate function I don't want to lose it.

My health is certainly poor enough that I'm showing symptoms of severe kidney failure, but because I have many other illnesses (heart failure, haemochromatosis, lung problems, platelet dysfunction, immature red blood cells, etc, etc) that have similar symptoms, it is hard to predict if dialysis would make me feel much better.
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Charlie B53
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« Reply #1 on: July 05, 2016, 05:27:47 AM »

Welcome to IHD.

ALL causes of kidney failure suck. It's a wonder that your has been such an up and down thing.  I would be curious as to the possible root cause(s) of the condition.  Truthfully afraid it could attack any transplanted kidney.

I also have other conditions.  High blood pressure, clogged arteries, initial stages of COPD.  I am not considered a good candidate for transplant.  When I was only 20% function I was so tired of being sick and tired.  My legs constantly swelling and leaking, often getting infected and landing me in the Hospital for days at a time.  I asked my Neph if Dialysis would stop the swelling.  When He said Yes I then asked when could I get started.  So I had my PD cath put in, went to training, and started PD a month over three years ago.

Dialysis has been the best thing I could have done to maintain some balance of health.  Daily, actually nightly, PS is somewhat time consuming but it rapidly becomes just another part of my routine.  There isn't the sudden shock of taking too much water out of your system as many suffer with hemodialysis.  Then again, those doing hemo at home daily are far better, less of that shock as with the three times a week clinic treatments.

It is a tough decision you are getting near to making.  Ask your Neph what are the benefits of starting early?   And which type of Dialysis may be most effective for you?   There are some advantages of each, I hope.  But only doing PD I don't know hardly a thing about Hemo.

Keep reading.   These is so much information here.   Ask questions.   Anything you don't understand clearly, or anything you think of that you cannot readily find, ask.  There are a number of people that read these boards, everyone has their own experiences.  Either as the patient, or as caregiver for a patient.  You can get so much information, it really can help in making a decision.  Or just to let you know that you are not alone.   There are an awful lot of us survivors.  maintaining some quality of life with treatment.  You can to.

Take Care,

Charlie B53
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gilders
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« Reply #2 on: July 05, 2016, 01:05:39 PM »

Hi Charlie B53,
You said "Truthfully afraid it could attack any transplanted kidney". That certainly is a worry for me. It's almost guaranteed that I'll have more relapses and I'm not sure how many times a transplanted kidney could withstand an "attack". I don't know the actual rules for deceased donor transplant list, but If the fact that the donated kidney maybe damaged by Wegener's Granulomatosis, then I'll probably not reach the top of the list anyway. Another reason why I'm hopeful one of my potential donors will be a suitable match.
If I don't get a transplant before dialysis, then PD will be my choice. It seems to beat hemo in every way except for one - peritonitis and other infections. As I'm immunosuppressed this is quite a risk. Have you suffered from any infections as a direct result of PD?
I've just remembered one other negative of PD. The peritoneal lining won't be able to cope with dialysis for ever, so I'd end up on hemo if transplant doesn't happen.
I did ask if starting dialysis early would protect the kidney function I already have, but was told that it wouldn't and hemo could actually make it deteriorate quicker.

Pleased to hear you were happy with your choice of PD and that you felt better once started.
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Simon Dog
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« Reply #3 on: July 05, 2016, 02:18:59 PM »

I did ask if starting dialysis early would protect the kidney function I already have, but was told that it wouldn't and hemo could actually make it deteriorate quicker.
Ask another neph.    Common thinking is that PD preserved residual, but anything left will fall off the cliff quickly once you start hemo.
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kickingandscreaming
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« Reply #4 on: July 05, 2016, 04:09:08 PM »

Quote
The peritoneal lining won't be able to cope with dialysis for ever, so I'd end up on hemo if transplant doesn't happen.

This is where I get hung up about PD.  It's so time limited.  I wish they'd come up with better PD solutions that don't ultimately destroy the peritoneal lining.  But you can buy time and hope that some other alternative comes on the scene before your lining gives out.  I've only been doing PD since January,, so I don't have a long track record behind me.  Yet.  If you have decent manual dexterity and take infection prevention seriously I think it is quite possible to avoid succumbing.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #5 on: July 05, 2016, 05:47:14 PM »


Three years a month ago and NO infections, yet.  I can't promise I will stay that way, but I am trying to keep my hands and cath clean, especially when I have to uncap and connect.    I don't think I am doing anything really special.   Some go to great lengths with cleaning and sterilizing.  It definately does not hurt to be so cautious.   Perhaps I am Blessed with a good set of antibodies that help me in preventing many of the more common illness and infections.   There really isn't any way to prove it one way or the other.  And I certainly am not going to purposely expose myself to things as a test.   With my luck that would be very BAD.

I still consider myself a beginner.  There are others, none that I know personally, but some have been on PD over 20 years already.  Then again, there are some that it has failed in just a few short years.

We can never know our future with any certainty.   Live and enjoy what time we are given.  Take it day at a time.  Let tomorrow wait until it gets here.   If/When PD fails to be an adequate treatment then I will have to deal with that if/when it happens.  I am not going to worry about it as it won't do any good other than to drive my blood pressure up further.   Why bother?

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DayaraLee
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« Reply #6 on: July 06, 2016, 08:04:14 AM »

Welcome, gilders! I don't have much to add to the conversation (I'm pretty much a newb here, trying to keep my husband on the straight and narrow as he travels the road of CKD), but I wanted to say hello.   :waving;  This is a great community with many, many friendly, supportive, and knowledgeable people. You've come to the right place.
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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
cassandra
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When all else fails run in circles, shout loudly

« Reply #7 on: July 07, 2016, 01:59:57 PM »

Welcome to the site gilders

   :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
       still on waitinglist, still ok I think
myporkchop
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« Reply #8 on: September 01, 2016, 05:57:05 AM »

Hi Gliders, I am relatively new here myself. All of these kind people have helped my mum to make the decision to give dialysis a go. She has multiple other health conditions also; chronic heart failure, chronic obstructive pulmonary disease, type 2 diabetes, insulin dependent; high blood pressure, high cholesterol, KIDNEY FAILURE (stage 5, which we just found out in April this year) which has caused all sorts of problems with her health. She was about ready to go down the conservative treatment route and was preparing for the end, until we joined this site. She has now had her operation for PD and is awaiting training.

I was really frustrated with her doctors as her kidney function had decreased to 11% before they told her she had to consider conservative treatment or dialysis (although they didn't recommend it due to her other health conditions). Why couldn't they have told her earlier about the treatment options. You have the time to get prepared and ask all the questions you have, rather than wait (like my mum) until you are really sick.

Take care and all the best xx
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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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