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Author Topic: Getting Closer to Dialysis - Must Decide  (Read 6167 times)
Lis
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« on: November 23, 2014, 09:44:03 PM »

Hi all, the last time I posted here was two years ago when I was first diagnosed with PKD at the age of 58 and my GFR was 27.  I have been losing about a point a month.  Now my GFR is 16 and I'm starting to feel some symptoms. My neph referred me to a dialysis center so as to learn more about the options. At first, he recommended doing PD at home but now he wants me to consider HD at home. Feels like such a big decision. He also told me I have three or four months to let him know if I have a donor lined up, otherwise he will schedule my access surgery early next year. I do not have any possibility of a donor from my family. My daughter (28 years old) very kindly offered me a kidney when I was first diagnosed although I was very ambivalent about her being a donor. Anyway, she went and had herself tested and found out she has PKD too.  :'(  Neither of my parents (in their 80s) have any symptoms. I guess I am looking for input from anyone here as to pros and cons of PKD vs. Home HD.  Whichever method, I want to do it at home if possible. I can feel my anxiety level starting to rise.  P.S. I have been one of those "lurkers" here and this forum has been very helpful to me. Thank you.
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Lis
Diagnosed with PKD 2013
Stage 5 ESRD, GFR of 7
Fistula created July 2015
Angioplasty on fistula Jan 2016
Transposition on fistula April 2016
Started training for home hemodialysis July 2016
Started home hemodialysis August 2016
Had five donors try but didn't pass
On waiting list at UCSF
kristina
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« Reply #1 on: November 24, 2014, 03:00:50 AM »

Hello Lis,
I am in a similar situation and I live in fear of the flare-ups dialysis could inflict in all the other organs of my body,
due to "my" suffering also from Systemic-Lupus-Allergies and MCTD-allergies...
... and "my" many other allergies and many different drug-intolerances...
... My husband has kindly offered to donate one of his kidneys to give me a better chance to survive
and we might hopefully be operated on around February 2015, but I am not too sure anymore to "make it" until then
and continue to keep my body pre-dialysis, because I have already started to wake up very swollen in the mornings
(fortunately the swelling subsides in the afternoon) ... and I have also started to become a little lethargic...
... but my mind is still alert, reliably intact and still "all there"...
(I have just proved it to myself by passing an important educational examination with distinction...)
... My current kidney function is around 6.5% and I am still pre-dialysis ...
... and my hope is still "to make it" to my possible transplantation-time in February 2015 and I also hope,
to remain pre-dialysis until February 2015, but unfortunately that option looks very hard to achieve now...
... because "my" end stage kidney failure seems to catch-up with me...
... Mind you, I still try extremely hard and go for my daily walks to keep as fit as possible... and I also do my daily exercises...
... and keep my strict kidney-friendly vegetarian diet and drink every day exactly the same amount of liquid to keep it all going,
...  and I won't give up that easily or throw the towel that easily...
...but to remain pre-dialysis is becoming so much harder now and so much more difficult to keep it all going these days...

Good luck and best wishes from Kristina.
« Last Edit: November 24, 2014, 03:19:11 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
iolaire
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« Reply #2 on: November 24, 2014, 06:33:13 AM »

otherwise he will schedule my access surgery early next year.
I would get this done as soon as possible.  Its a relatively minor surgery and it makes the transition to dialysis easier.  I've never had a catheter, but it sounds like they really suck and are quite painful.  I feel fortunate that when I started dialysis last year and had a nice strong, two year old fistula.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
obsidianom
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« Reply #3 on: November 24, 2014, 07:16:23 AM »

Hi all, the last time I posted here was two years ago when I was first diagnosed with PKD at the age of 58 and my GFR was 27.  I have been losing about a point a month.  Now my GFR is 16 and I'm starting to feel some symptoms. My neph referred me to a dialysis center so as to learn more about the options. At first, he recommended doing PD at home but now he wants me to consider HD at home. Feels like such a big decision. He also told me I have three or four months to let him know if I have a donor lined up, otherwise he will schedule my access surgery early next year. I do not have any possibility of a donor from my family. My daughter (28 years old) very kindly offered me a kidney when I was first diagnosed although I was very ambivalent about her being a donor. Anyway, she went and had herself tested and found out she has PKD too.  :'(  Neither of my parents (in their 80s) have any symptoms. I guess I am looking for input from anyone here as to pros and cons of PKD vs. Home HD.  Whichever method, I want to do it at home if possible. I can feel my anxiety level starting to rise.  P.S. I have been one of those "lurkers" here and this forum has been very helpful to me. Thank you.
Get the fistula put in ASAP so it will have the months required to fully mature. Then you can decide what to do with no pressure. I think PD may make sense initially if possible and have the fistula as back up for later. If you have questions just ask.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
del
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del and willowtreewren meet

« Reply #4 on: November 24, 2014, 07:28:13 AM »

Hubby has a nice strong 14 year old fistula!!  Find out all the info you can about the different types of dialysis and which might be best for you.  PD works better in some people , while hemo is better for some.  Hubby was one that hemo was better for.  He did PD for 3 years and never felt well.  It eventually stopped working completely and he had no choice but hemo.  He did in center for 6 years and did really well with it.  For the past 8 years he has been doing nocturnal home hemo on an @home fresenius machine and he has done really well on that.  We are waiting now to be trained on a nxstage machine (it has only recently become available in Canada and the bags are still not approved).  Do NOT wait too long before getting ready for dialysis.  Things can happen overnight and fluid overload and cause a lot of problems.

Hubby was diagnosed with nephritis almost exactly 10 years before he had to start dialysis.  He did spend a lot of time feeling miserable in that time and knowing what we know now he probably should have started sooner.  He did follow his diet and watch everything he ate and drank in that time.

It is a good idea to get your access ready when you decide what type of dialysis you will be doing. It takes months for the fistula to develop properly and if used before it is mature you can run into a lot of problems.  Hubby had a catheter when he first started hemo and never had any problem but you usually don't get as good a clearance with a catheter.
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Don't take your organs to heaven.  Heaven knows we need them here.
MooseMom
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« Reply #5 on: November 24, 2014, 09:15:52 AM »

iI agree with the other posters; get your access created, let it mature and then all options will be open to you.

There is no "wrong" choice.  It's a matter of collecting all information about all home dialysis options, and think about which modality would fit better into your life.  While I was fortunate in ultimate getting a pre-emptive cadaveric transplant, I'd already had my fistula created and had decided upon home hemo because PD would mean that I could not go swimming, and swimming is my favorite form of exercise during the summer months.  I've always loved to swim.  Not only did it benefit me physically but also it was a real emotional balm.  My anxieties would drift away as soon as I hit the water, and I was unwilling to give that up. 

The general consensus seems to be that PD is not a long term solution (as in, say, more than 3 or more years), so if you think you may have to go quite a few years without the possibility of a transplant, keep this in mind.

You are not limited to just one modality.  If you decide upon PD and it does not work well for you, you can switch to hemo.  Your decision is not written in stone.

Now that your gfr is below 20, you are eligible for getting evaluated for transplant.  Think about asking your doctor to refer you to a transplant center for evaluation if you think that transplant is something you'd like to pursue.  While transplant is neither a cure nor a perfect treatment, it is superior to dialysis.  The sooner you get on the list, the better. 

Let us know what your thoughts are!
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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."
amanda100wilson
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« Reply #6 on: November 24, 2014, 05:22:37 PM »

Not trying to hijack the thread, but I agree with Moosemom.  However, I would also like to address Kristina's post.  How does your nephrologist feel about you trying to last it out until February?  Does he/she think that is a realistic option?  That seems an awfully long time when your function is so low.  Have they discussed what damage could occur, if you continue to hold off?  I am thinking of your heart, in particular, and also elevated electrolyte levels.  What concerns me is that your remaining function could go 'belly-up' in that interval and you will end up with a catheter.  I don't want to be negative, but because this is short term, maybe PD could tide you over. 
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
kristina
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« Reply #7 on: November 25, 2014, 01:40:00 AM »

Thank you Amanda for your concern, you are right, of course...
I did notice in the past few days that I was given "a pretty good run" to have remained pre-dialysis for so long,
after my kidneys first collapsed completely 43 years ago with total kidney failure and coma... and a slight recovery afterwards...
As a result of the new recent deterioration of my kidney-function, I now have to see the nephrologist as soon as possible...
My health and my well-being have suddenly deteriorated rapidly in the past few days ...
.... and it came as a great surprise, because there was no gentle "introduction" into this deterioration,
... it happened practically overnight and as things stand at this moment,
there is hardly a chance for me to "make it" and remain pre-dialysis until February 2015...
Last night I suddenly developed severe problems with my breathing for the first time in my life
and I have to do something about this now very urgently ...
Today I shall "put everything into very speedy gear" to get this deterioration halted and sorted out
as soon as possible to give myself a better survival chance...
Thanks again from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Simon Dog
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« Reply #8 on: November 25, 2014, 05:31:38 AM »

Quote
PKD vs. Home HD
I assume you mean PD vs Home HD.

I've BTDT on just about every modality - PD@home; in center/catheter; in-center fistula; home hemo BabyK; home hemo NxStage

My thoughts:

- Catheters are not painful, but they bring risks you would do best to avoid.
- Showering is possible with a catheter, but tricky (www.korshield.com)
- PD is much less invasive on your life than HD as long as you use a cycler overnight
- PD is less invasive on your body that HD - once he catheter comes out when you are done with PD all you have is a small scar resembling a vaccination scar

My suggestion would be try PD and see how well it works.   If it works, great - if not, home HD (my current modality) is an excellent option.   In center HD sucks (relatively speaking).
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kristina
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« Reply #9 on: November 27, 2014, 02:18:16 AM »

Thank you Simon, for your kind explanation...
What you say sounds very logical and is very easy to understand
for any panicky soon-to-be-beginner-with-dialysis...
Your thoughts are very much appreciated.
Kind regards and thanks again from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Simon Dog
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« Reply #10 on: November 27, 2014, 05:44:44 AM »

I've been in dialysis 2.5 years and still have a great life, work 30 hours per week, and am pretty much self-sufficient (except for the past month when recovering from a total hip replacement).

You do not have to let dialysis defeat you.
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kristina
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« Reply #11 on: November 27, 2014, 01:15:02 PM »

Thank you Simon for your lovely thoughts...
... I shall also try to get very self-sufficient and give it my very best ... and I won't let it defeat me.... promise... !
Good luck with the recovery of your hip-replacement and I send you my very kind regards and thanks again from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Simon Dog
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« Reply #12 on: December 13, 2014, 09:22:40 AM »

... I shall also try to get very self-sufficient and give it my very best ... and I won't let it defeat me.... promise... !

If you are wired anything like I am, you will find that taking charge of your treatments, doing it yourself, and learning as much as possible about the prescription (and why the values were selected for you) will help you in dealing with dialysis,.

One problem with in-center is some people surrender to the clinic - "learned helplessness"  - and have no clue about their Rx could not tell you what bath they are on and why, what their bicarb setting is (not relevant on NxStage), what Na should be set to, or what, if any, UF profile is used.    If you don't know these things, you won't know how to spot errors by the clinic staff.
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kristina
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« Reply #13 on: December 13, 2014, 02:55:03 PM »

Thank you Simon,

I have noticed today - on my first day of dialysis -
that I still have to learn an awful lot, because theoretically it is completely different
to the practical experience and hopefully I can find my routine soon.

Thanks again from Kristina.












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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly

« Reply #14 on: December 13, 2014, 05:13:26 PM »

Dear Lis how are you doing?

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
Maggie and Jeff
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« Reply #15 on: December 17, 2014, 07:44:54 PM »

Maggie and I have been doing home hemo with the NxStage for over 8 years now and she is doing great.
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The LORD is my light and my salvation--so why should I be afraid? The LORD is my fortress, protecting me from danger, so why should I tremble?

Jeff is the needle pusher Maggie is the pincushion.
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