If you could give one pearl of wisdom...

[MooseMom]

After 18 years battling fsgs, it seems like my kidneys are getting ready to pack it in.  My eGFR is now 15 and creatinine 3.5, so it's time to move on to the next battle.

I have just been evaluated for a transplant, but in the meantime, my neph thinks my kidneys won't last long enough to avoid dialysis, and I think he is right.  I knew this day was coming, but it is still a shock, and truth be told, I am not thinking too straight right now.

Although I realize that you often don't know if you've made the right choice until some time has passed, I will chose home hemodialysis and have already looked into NxStage; my husband has already spoken to them at great length, and he supports me in my decision.

One specific question I have is this...did most of you know right away, upon learning that you needed dialysis, that you wanted home hemo, or did it take you some time to come to that decision?  And was there something specific that made you decide to dialyze at home?   How long did you have to do in-clinic before you were able to start training for NxStage?

If you could tell a beginner one helpful hint, what would that be?

Thank you so much for your time.

[monrein]

I would say, don't try to think of the whole process at once.  It will build on itself until you find yourself into whatever routine you've chosen.  Also remember that if you feel the choice made isn't right, you can always switch. 

[texasstyle]

Well for my husband he was put on dialysis in the hosp. but knew it was kinda coming soon anyway. He does 2x  a week in center and has said if has to do 3, he will do it at home. ( I don't think that'll work out in his case though) So in the meantime going to a center has helped me get a better understanding of how the processs works and time to actually learn about kidney failure and how dialysis works. The caregiver needs to know all this too as I'm sure your aware. Geez, it seems like the amount to learn never ends. I have seen here many people who are happy doing the home type dialysis. I understand there is quite a bit to learn for that and you need a caregiver/ support person for the most part to help you out. Which ever,when ever you choose this or just going to the center at least you have a great support person. That means the world.

[Harvey Wells]

Try and evaluate your options in small steps.  It's not like a big purchase that you'll be stuck with.  Which option do you think would best suit your lifestyle?  Can you deal with the PD cath and restrictions and are you a suitable candidate for PD?  Can you tolerate the fluid dwelling in your abdomen?  Are you diabetic and how will the PD fluid effect your glucose?  If you know your eventual donor and a transplant is in the forseeable future 0-12 months out, PD would be my choice for several reasons if it fits your lifestyle.

Do you have a support system to attempt home dialysis?  Are you or your partner willing to learn the cannulation process?  Are you and/or your partner willing to commit to a training process of 3-5 weeks?  NxStage would be my first choice at this point for several reasons.

If you absolutely have to choose in-center, try and find a nocturnal program and get MORE!  If you absolutely have to do thrice weekly daytime or evening, try and get them to offer the 4th day.  Your goal is to live healthy and if you're going for a transplant you want to be in the best possible shape when the transplant comes.

Remember to take it a step at a time, other than the PD cath and the fistula placement nothing prevents you from changing your mind.  Good luck, I dealt with FSGS for over 25 years before it knocked on my door.

[Malibu]

I knew in-center was not for my husband, he is a very strong willed person and I knew he would not last sitting there with people he had not chosen to be around.

My husband did not do in-center at all.  We went straight to the home hemo clinic and the first day of his training was the first day he dialyzed.

Helpful hint:  Go with the flow (ha!, dialysis humor: flow!) and do not be afraid.  It is going to happen so make the best of it.

[M3Riddler]

After 18 years battling fsgs, it seems like my kidneys are getting ready to pack it in.  My eGFR is now 15 and creatinine 3.5, so it's time to move on to the next battle.

I have just been evaluated for a transplant, but in the meantime, my neph thinks my kidneys won't last long enough to avoid dialysis, and I think he is right.  I knew this day was coming, but it is still a shock, and truth be told, I am not thinking too straight right now.

Although I realize that you often don't know if you've made the right choice until some time has passed, I will chose home hemodialysis and have already looked into NxStage; my husband has already spoken to them at great length, and he supports me in my decision.

One specific question I have is this...did most of you know right away, upon learning that you needed dialysis, that you wanted home hemo, or did it take you some time to come to that decision?  And was there something specific that made you decide to dialyze at home?   How long did you have to do in-clinic before you were able to start training for NxStage?

If you could tell a beginner one helpful hint, what would that be?

Thank you so much for your time.

First, you shouldnt have to do in-center in order to do NxStage. The only reason I see you needing to go in-center is if there is a line for training for NxStage. But this is the time to schedule for it if you have made your decision.

Next, you need to discuss creating an access for dialysis such as a fistula if you can. You need to get this started as a fistula can take up to 4 months or so to mature in order to use.

Do you know when you will have to start dialysis due to the poor kidney function? You need to start planning early if you can.

NxStage is definitely a good choice. You will not be tied down to someone else's schedule and learning curve. You will be trained and do things on your schedule. No driving in-center and you will feel much better since you will be doing it daily.

I could go on and on.....Do you have any specific questions?  The one thing I would tell you that I cant stress enouph...Learn as much as you can about your condition and DO Not Be Afraid to Question your Doctor or Nurses...Stay on Top of Everything...

///M3R

[MooseMom]

I am in the process of getting a referral for having my arm mapped and getting a fistula created (with an HMO, I need a referral for everything, including breathing...).  I don't know how long my kidney function will hold out.  I've had fsgs for 18 years; my eGFR/creatinine had been steady at about 23/2.5 for the past five years, but a couple of months ago, it started declining suddenly and is now at 15/3.25.  I feel OK for now; just tired.  So, I don't know how much time I have.

I am going through the hoops for transplantation, but I don't have a live donor, so I could be waiting a long time.  I had my evaluation last Wednesday, and the very next day I got the bad labs, so I'm not sure my brain right now is up to absorbing NxStage training sessions.  I'm just too overwhelmed at the moment.  It's hard to take things one step at a time when everything is happening to me all at once.

I am a walking, talking dictionary re my condition; I am extremely organized, and I ask questions.  I am my own best advocate.  But there are many times when I do not have the experience with which to make important decisions; chronic illness robs one of the energy to keep on top of things.  But I do it.  Yet I recognize that I need advice, and I appreciate everyone's responses.

[Ang]

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