Getting Closer to Dialysis - Must Decide

[Lis]

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.

[kristina]

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.

[iolaire]

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.

[obsidianom]

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.

[del]

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.

[MooseMom]

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!

[amanda100wilson]

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. 

[kristina]

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.

[Simon Dog]

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).

[kristina]

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.

[Simon Dog]

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.

[kristina]

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.

[Simon Dog]

... 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.

[kristina]

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.

[cassandra]

Dear Lis how are you doing?

Love, Cas

[Maggie and Jeff]

Maggie and I have been doing home hemo with the NxStage for over 8 years now and she is doing great.