New member - grateful to be here

[austinsoul2011]

Hi everyone,

So glad to finally join with your wonderful group here; I've been lurking for a bit.  I'm 42 with serious PKD but not yet starting D -- but might soon, with a creatinine of 4+.  My elderly father (73) with PKD has just started in-clinic HD (Fresenius in Austin) and is having a very difficult time with it.  Along with all the other symptoms people here have been reporting (dizziness, poor coordination and hypotension), the HUGE issue is that he suffers from bouts of DEMENTIA.  It's become so bad that he's constantly thinking about how pointles the whole thing is.  I'm more concerned with his well-being than mine, and I'm so grateful there is such a warm community as this one.  Bless you all, and I look forward to exchanging experiences and messages of support with each of you.

Steve

[willowtreewren]

Oh, Steve.......

First off, your dad is fortunate to have made it to 73 before having to start dialysis! My husband's dad (also PKD) did not even survive until age 73! But that's another story.

You didn't say how recently he started D, but it often seems that at the first it is awfully hard on the patient. It takes some "hit and miss" to get the dry weight figured out and during that time it can be rough. I know the dementia is VERY worrisome, but that could be because the toxins are not getting fully flushed out of his system.

 

Since you have been lurking, you have probably come across mention of home hemo with NxStage. Does your father live with you? Would this be an option for him/you? With NxStage you actually do more frequent dialysis and that improves the amount of waste removed and is easier on the other body organs.

I hope you can keep your creatinine low enough to stave off your own dialysis for a while. 

Welcome to the group!

Aleta

[okarol]

  Hi Steve,
Welcome. How fortunate your father was to last so long with PKD - sorry your case is more aggressive. My dad had really serious blood pressure symptoms and died at 28 from a cerrebral hemorrage, but my siblings with PKD are all in thier 50's and haven't required dialysis yet.
I have mixed feelings about putting patients with dementia on dialysis. If they truly understand and embrace what it means for them, then by all means do it. But in some centers they keep hooking people up who have no idea what or why they are there, and sometimes have to be restrained. This is so upsetting and I don't really understand it.
I hope you remain stable and stay healthy - good luck!

okarol/admin

[jbeany]

 

Steve, sorry if I'm just confused, but do the docs think the dementia is one of the side effects or was he experiencing it before D? I know the toxin build-up can cause some mental issues, but I don't think I've ever heard of anyone else getting it as a side effect from the treatment.

jbeany, Moderator

[austinsoul2011]

Thank you for the responses, everyone.  So wonderful to know there's such a caring, close-knit group of people here.

Concern over my father has pretty much taken over my life, and although my nepherologist is telling me that I might soon have to start treatments myself with my deteriorating condition, I just want him taken care of first.  I can deal with constant clinic and/or hospital visits for myself; I've suffered long-term paralysis and hospital treatments in the past so I know I can accept additional lifestyle changes for myself whether they come sooner or later. 

But it's my elderly father who can't cope with the difficulties of dialysis, and I want his remaining years to be as stress-free and uncomplicated as possible.  He's been a wonderful father and I need to do what I can.   I only wish I could provide him the strength and support that so many of you possess here.  Given that my mom is also suffering health issues, I know each and everyone here knows exactly what I mean when you are the ONLY person left to care for your loved ones.  I'm not trying to make this sound like some sob story; really, there are so many more difficult cases out there being handled by people far more capable than me.  I'm just grateful that I can draw on the strengths and experiences of the individuals here.

Yes, these first two weeks of dialysis have been gruelling.  My father complains of constantly "not feeling like himself" and "out-of-sorts."  I do hope he improves soon. 

jbeany, thank you for being direct in your question, and you have a great point -- the dementia might not be a direct side effect of the dialysis treatment but rather an exacerbation of my father's own paranoid reaction to the treatments.  My father's always suffered from mild anxiety attacks and insecurities, and these perceived feelings of helplessness probably have been made worse by his new circumstance.  And no matter how much we try to reassure him that things will get better over time, he won't listen.  I don't really know, but I do hope the adjustment comes soon.  I'm praying that as his blood continually gets cleansed, he'll start feeling a little more at ease.  I'm very hopeful that things will especially improve once his venous catheter is removed and he can start using the fistula. 

willowtreewren (Aleta), thank you for the greeting.     Yes, I'm also looking into home dialysis for my Dad, but as we're only associated with Fresenius, I'm guessing the only option is using the Fresenius PD system or Fresenius home hemo rather than the NxStage home hemo system.   The doctors first want my dad to do a few months of in-clinic HD and fatten him up before he begins PD, as he's so painfully skinny.

Steve

[willowtreewren]

Steve, I think Desert Dancer uses the Baby K. She may be able to give you some info on her experiences.

I hope that fattening up your dad goes well. Sometimes being new to dialysis can throw your appetite off, plus there are the food restrictions to contend with.

You have your plate full....   Be sure to take care of yourself to maintain your own kidney function. You will be better able to help your dad that way.

Aleta

[looneytunes]

Hi Steve and Welcome!   

[MooseMom]

Hello Steve, and thanks for joining IHD.

Your dad can receive dialysis in a Fresenius clinic but still have access to NxStage, so don't let that stop you/him.

I am also wondering about your dad's dementia.  I think the key here is to determine exactly what the problem is, ie, is it true dementia, or is it an exacerbation of underlying psychological difficulties, or is it the effect of the buildup of toxins?  If a person is already psychologically shaky, enduring such a tectonic shift in lifestyle as dialysis can easily send him over the edge.  Even emotionally strong people can struggle mightily with something like dialysis.

Like Okarol said, if your father is assessed and is diagnosed with dementia, then think carefully about whether or not dialysis is worth it.  Well, it's your dad who will have to make that kind of decision.  While dialysis keeps you alive, it can be torture for some people, and there is nothing kind and gentle about dialysis.  These are not assessments you and he have to make right now.  Give dialysis at least six months and then see how he is progressing.

You have a lot on your plate, and your father is lucky to have you as his finest advocate.  Please visit IHD often for any support you may need.  The more support you get for yourself, the more you will have for your father.

[jbeany]

Steve, if it helps, do tell your dad that very few people do well during the first 4 to 6 weeks.  It's a rough ride while the staff mess with getting a real dry weight figured out, and if they are hoping he gains weight, then finding a dry weight is going to be even more difficult.  I think it was about 2 months before I started having anything that seemed like it might become "routine."  If he already has a history of anxiety, it might take him even longer.  Hopefully, he'll reach a stable point soon.   

[Riverwhispering]

  to our IHD family Steve

[lmunchkin]

Welcome Steve & Greetings for 2012.  Know this is probably a "WhirlWind" for you.  Im curious though, you said you go to FMC and you would probably have to use FMC home hemo machine instead of NxStage.  We go to Frescenius clinic and they have the NxStage training.  Ask your clinic if they can provide NxStage.  Now our FMC does also provide the BabyK for those wanting nocturnal at home.  That would be an excellent idea too, cause other than transplant, I truly believe "Nocturnal" is the ultimate dialysis.  We did not choose it, because NxStage has been a better fit for us>

Anyrate, this is an intro, so sorry for that interuption.

Again Welcome & God Bless,
lmunchkin
 

[austinsoul2011]

Thank you, lmunchkin, and the very warmest of greetings to you and everyone else here.   You're right, this has been quite a ride for my father and I, and I'm eager to learn all I can to ensure my dad's lifestyle transition goes as smoothly and pain-free as possible.  Unfortunately he hasn't been adjusting well at all, due to all his fears and perceptions, and it just makes him even more depressed knowing that I'll be following him when I begin my own treatments.  At times he's talked about giving up, abandoning dialysis and just see how many weeks he'll have left, but I won't let him...

Thanks for the information that my Fresenius clinic might still offer NxStage, and I'll ask my clinic about that.  The latest news is, however, that my dad's been scheduled for PD insertion in two weeks by his nephrologist.  So I guess we're going with a PD option first, cuz the doctor and staff really want to get my dad off his central venous catheter ASAP and his fistula looks like it's gonna take forever to mature.  I've read in one thread somewhere that a FMC might even offer the Baxter cycler instead of Fresenius's Liberty or Newton cyclers, which has me thinking there are a lot of people who really don't like Fresenius apparatus at all!  I'm so new to all this, but eager to gain from the knowledge and experience of people here.

Happy 2012, everyone!

[lmunchkin]

I believe PD is an excellent choice for your father.  We trained PD at the same Frescienus as the NxStage.  In fact, when he had to give up PD due to infections, he went In-center for awhile (not a Fres. Clinic) and we hated it.  We wanted back home, so neph called FMC and they said yes that we would be good candidates for it. I got to tell you, they are really good caring people there, but they do not do dialysis in that clinic.  Just PD, NxStage and home D. work ups!

The thing is, in my humble opinion, he will get better Dialysis cause he will be doing it everyday, instead of 3 days a week.  Its a no brainer!   The more you dialysis the better you feel.  We still wouldnt go to In-Center if they offered longer and frequent D. for this reason only, WE LIKE BEING AT HOME. But not everybody wants to do that, and that is fine too.

I think your Dad is Blessed to have you in his life, but please, honor his wishes. If he is "serious" about stopping, then as much as it may pain you, honor HIS wishes. My husband wants to give it up too, and I will honor his wish, when that time comes.  But he has not "PUSHED" it, so Iam thankful for that. What ever time we have together, is a PLUS, and an Extra day that we are Blessed.

Another point, Steve, is that when my J was In-center, he was so depressed to the point of wanting to die.  Now that we are at home, yes he is still depressed, but because he has nothing to do, but when I come in from work, he brightens up. And I got to say, Im pretty excited to see him too! Its just different when done in your own surroundings.

Steve, your father knows what he wants.  I think it is noble, that you want to help in anyway you can!  Therefore, enjoy while you can!

God Bless,
lmunchkin
 

[austinsoul2011]

I think your Dad is Blessed to have you in his life, but please, honor his wishes. If he is "serious" about stopping, then as much as it may pain you, honor HIS wishes. My husband wants to give it up too, and I will honor his wish, when that time comes.  But he has not "PUSHED" it, so Iam thankful for that. What ever time we have together, is a PLUS, and an Extra day that we are Blessed.

Thank you, lmunchkin.  You're so right; my father's life is his own and he has a right to do as he wishes.  I just hope he'll be in the right frame of mind when he does make that final choice -- and hopefully after we've exhausted all options.  My best to you and your husband; he's very lucky to have you.  God bless!