Dialysis question?

[Wildrose]

When the time comes, check with your state and county people. In Oregon if you are below a certain income level they will pay for part B Medicare. Part A is free. There is also a pharmacy program in Oregon. I don't know right now who administers it, but it really covers some of those expensive drugs. Hope they have the same in WA. I'll find out who handles it in OR so you can check with them in WA. Take care. (WR)

Deb

Thanks Deb, that info will be helpful!

[Krisna]

My kidneys failed in Nov. 1979 and I've had 4 transplants (see my signature for dates).  I've been on dialysis since Sept. 6, 2002 and I still make a little bit of urine.  I know in my case the urine is basically just water and my kidney isn't really filtering anything out with it.  I only pee in the mornings and it's not anything to get excited abt.  If I didn't go to dialysis I would get very sick. 

Are you going through Northwest Kidney Centers?  I'm assuming you are since you asked me if I was in my thread.  The financial people at Northwest Kidney Centers (NKC) will help you with the insurance stuff when the time comes.  I'm on Medicare and Medicaid (DSHS).  Medicaid pays the part that Medicare doesn't.  Private insurance will also pay for some of it if you have that.  So, you can call the main unit in Seattle and ask to speak to someone abt that if you are worried abt it.  NKC will also help you with transportation to and from dialysis if you need it.  I have someone who can take me now but I used to get transportation through DSHS.  Northwest Kidney Centers main number is (206) 292-2771 then just ask the operator for the Financial Services. 

I'm not sure if they are still located at that number or not, they did a bunch of reorganization recently but the switchboard operator will be able to direct you to the right place.  But there are also other organizations around here to help those who don't have private insurance and don't qualify for DSHS. 

I hope this helps.

[Wildrose]

The financial people at Northwest Kidney Centers (NKC) will help you with the insurance stuff when the time comes.  I'm on Medicare and Medicaid (DSHS).  Medicaid pays the part that Medicare doesn't.  Private insurance will also pay for some of it if you have that.  So, you can call the main unit in Seattle and ask to speak to someone abt that if you are worried abt it.  NKC will also help you with transportation to and from dialysis if you need it.

I've been in touch with the financial people at NKC, but everything has been on hold as I have been waiting to find out if I can qualify for medicaid. It took two months just to get the paperwork from DSHS and its been another month since then. They told me "it will be awhile" so I'm not holding my breath. But anyways thats why I've decided to start out with PD as I have realized just over the last few days I really need to stop worrying about the financial  (my Dr was leaving it up to me because I kept telling her I was feeling fine.... I might have fibbed a little) and just get on dialysis before it gets worse. I already spend half or more of my days sleeping and the rest feeling nauseous. Since medicare will kick in after the first month with home dialysis, I figure that will be better than doing in center hemo and having 3 months of bills we can't pay for (on top of all the other unpaid bills I've already racked up).

[lmunchkin]

Alot of us are in the same boat, Wildrose.  Right now, we have Medicare and Cobra, and Cobra aint cheap.  Plus we still have a deductible & out of pocket expense with Cobra. We are scrapping the bottom of the barrell right now!

Its  sad, but know that you are not alone in all this!  Not much we can do about it and you can't draw blood from a turnip.  I love my husband dearly and I will go down with him when we lose everything we have.  I don't care about anything but HIM.  I will honor him in everything he wishes.

lmunchkin
 

[Krisna]

The financial people at Northwest Kidney Centers (NKC) will help you with the insurance stuff when the time comes.  I'm on Medicare and Medicaid (DSHS).  Medicaid pays the part that Medicare doesn't.  Private insurance will also pay for some of it if you have that.  So, you can call the main unit in Seattle and ask to speak to someone abt that if you are worried abt it.  NKC will also help you with transportation to and from dialysis if you need it.

I've been in touch with the financial people at NKC, but everything has been on hold as I have been waiting to find out if I can qualify for medicaid. It took two months just to get the paperwork from DSHS and its been another month since then. They told me "it will be awhile" so I'm not holding my breath. But anyways thats why I've decided to start out with PD as I have realized just over the last few days I really need to stop worrying about the financial  (my Dr was leaving it up to me because I kept telling her I was feeling fine.... I might have fibbed a little) and just get on dialysis before it gets worse. I already spend half or more of my days sleeping and the rest feeling nauseous. Since medicare will kick in after the first month with home dialysis, I figure that will be better than doing in center hemo and having 3 months of bills we can't pay for (on top of all the other unpaid bills I've already racked up).

Yeah, it's been so long since I first had to apply for benefits I'm sure it's different now than it was back then.  John and I are thinking abt doing home hemo with the NxStage machine.  It's portable so we'd be able to travel more.  But it requires you to do dialysis more days a wk.  PD isn't an option for me because I've had too many abdominal surgeries and my muscle is being held together with mesh.  I'm a patchwork quilt!  lol

Hope everything gets worked out for you!

[lmunchkin]

Yeah, it's been so long since I first had to apply for benefits I'm sure it's different now than it was back then.  John and I are thinking abt doing home hemo with the NxStage machine.  It's portable so we'd be able to travel more.  But it requires you to do dialysis more days a wk.  PD isn't an option for me because I've had too many abdominal surgeries and my muscle is being held together with mesh.  I'm a patchwork quilt!  lol

Hope everything gets worked out for you!

Im glad you and John are going to give NxStage a try. Im glad we did.  If you need any help with it when you start Krisna, please feel free to ask.  I love this NxStage.  It an amazing little machine and has done wonders for my J.

lmunchkin
 

[Krisna]

Yeah, it's been so long since I first had to apply for benefits I'm sure it's different now than it was back then.  John and I are thinking abt doing home hemo with the NxStage machine.  It's portable so we'd be able to travel more.  But it requires you to do dialysis more days a wk.  PD isn't an option for me because I've had too many abdominal surgeries and my muscle is being held together with mesh.  I'm a patchwork quilt!  lol

Hope everything gets worked out for you!

Im glad you and John are going to give NxStage a try. Im glad we did.  If you need any help with it when you start Krisna, please feel free to ask.  I love this NxStage.  It an amazing little machine and has done wonders for my J.

lmunchkin
 

Thanks!  We haven't actually decided to do it yet.  John is now a crew chief at his job which would mean he would have to be there for any overtime.  So, we're still thinking abt it.  But I know where to come if I have any questions.

[CebuShan]

You mentioned that you were concerned about losing your ability to urinate after starting dialysis. I have been on dialysis for almost 2 years now (April 28 will be 2 years) I still urinate the same as I did before. My kidneys just don't filter. I started with a catheter that I had for one year to the day and never had a problem with it. I didn't go in for a fistula until six months after starting. (I'm stubborn and slow in accepting things!) Best of luck to you!

[Lowilson]

Ok I just started  D 1 month ago. I still pee lots actually  on some day. Sometimes not much. I know longer pee all night every 2 hours. That is relief. I think in pkd peeing last longer but you don't filter crap. Pre transplant my head was foggy I was not myself mentally I asked the doc he said toxin build up.  my pth is 1000 and my hb 8. My phos and potassium were through the roof when I started. I haven't got lab results bac yet to see if they are in a better range. I think only advantage to peeing is you can consume more fluids between treatments.  End result peeing or not the toxin will make your life miserable and could kill you from high potassium build up or calcification from wild phosphorus. So everybody's D is different depending on what got you to ESRD or what other co issues you have with it. For me it is my heart.  I am sure everybody has other issues as well.

As for Medicare. For hemo Medicare  starts 3 months after first treatment. The center should get paperwork going for you. They have for me. Obviously they want money. I have company insurance so they will be prime for 33 months then it flips and Medicare is prime.  I have to pay premium for Medicare. I also still pay regulat company insurance but  I do not top out on company insurance and get100 percent until 5000.00 so this beneficial. The ialysis center have financial corroding toes and social workers. Make them help you that what they get paid to do. It doesn't cost you anything

[RichardMEL]

Oh Karen, if Canada took over Washington state it would make some things SOooooooooo much better in many respects....  

Wildrose - going back to last page your comment about your logic - in some ways your logic does make sense - but I think it's not taking into account a number of things. I mean to take your argument that "If I don't do dialysis I die, and I do do dialysis I die" you could say "Why leave the house or do anything because I'm going to die?" or even "Why breathe because I'm going to die?" - it's a truth in life (unless Torchwood Miracle Day happens) that, like taxes, death happens. The point of Dialysis is to keep that particular option at bay. Sure, there are risks. There are different risks with transplant, and again different risks with not doing anything.

Nobody can guarantee you a certain kind of outcome from whichever treatment you choose - dialysis, transplant or even a mode of dialysis. There are so many variables. However I think it is safe to say that the odds are definitely in favour of a longer life, and one with some level of quality, from taking dialysis as opposed to doing nothing. Further, if you're young and relatively healthy apart from the kidneys, then chances are you'll be doing just fine.

Some will tell you that the "average" life expectancy of someone on D is around 5 years. Yes, I am sure the numbers make that up - of course adjusted for age would be a different story given the vasty majority of D patients are much older. And even then that is not to say that just because you start D if you're 75 you won't see 81 - averages are just that - averages. Each case is different.

As someone else pointed out - you're young, you have a family - why not take the treatment option (as opposed to nothing) to give you a real chance to spend more time with them? And, many of us who have been on D for multiple years have done so very well and stable.

I note also in this thread a bit of a focus on urination. As much as we all love to pee ( - only a kidney patient can fully appreciate that one!) I think the focus on the importance of doing it or not when D time comes along is a little misleading. Remember urine is expelling water AND waste from the body. At low levels of kidney function the waste component will be minimal - so even if you pee buckets if it's mostly clear of wastes, then you STILL need D to remove those toxins building up/staying in the system. If your output reduces or stops, then not only do you have to worry about toxins, but also the fluid overload... The point I am trying to make is that even if you urinate or not the point is that toxins are mostl likely not being removed to the levels needed to stop bad things happening to your body - so you still need dialysis.

That creatanine level that is measured is really just a measure of waste products in the blood - when that goes up, it's showing how the kidneys are not processing that waste and rejecting it - thus the higher the Cr value, the more toxins are in your system and not out of it - even if urine levels are high.

just my thoughts anyway.