Starting dialysis next Tuesday

[big777bill]

 I've been under my nephrologists care for just about 3 years now and she called to inform me we'll be starting the big D on Tuesday. I have to go to the hospital and have a cannula put in and then go to her office to begin dialysis. I've been working on a fistula since Nov. 17 and need one more surgery on Feb. 17 to move it closer to the surface. We were hoping that we could wait for the fistula but I've been getting very sick lately. My creatinine is 4.2 and my GFR is at 15 which puts me at stage 5 but the nausea has been awful as of late. I will be starting NxStage training with my wife and son on Feb. 13 so we won't have to do in center for too long. Wish me luck and keep me in your prayers. I feel like a cat on a hot tin roof, extremely nervous.

[cattlekid]

Hello!

Sorry to hear that you have to start dialysis but you are in a good spot.  My creatnine was over 8 when I started, it was pretty dire.  I was in-center for 10 months before I started NxStage training.  If I would have know that I was declining so fast, I would have gotten the ball rolling sooner but my creatnine went from 1.2 to 9 in the course of two months.

I am glad to hear that you have your training date for NxStage right away.  You will definitely see the difference when you start.  I feel almost totally normal and actually look forward to the treatments.  I work full time and it is the best thing for my life and schedule.  I have my life back compared to in-center.

If you have any issues, questions or problems when you start training, please feel free to post here or PM me and I'll help the best I can.

[lmunchkin]

Awe, Bill, sorry to hear you have to start D.  But its not as bad as it sounds once you get use to it.  It will just seem like a ton of bricks falling on you, but once you get smoothed out and really learn what works best for you, it will become a part of your lifestyle.  Is it perfect? No, but it is what you will have to do in order to live.

Are you eligible for a transplant?  That would be the ultimate.

I wish when J was diagnosed in 2004 they had offered NxStage.  But we started out with PD, then years later switched to NxStage!  Bill, I admire the fact that you are gonna take control of your health.  While in-center, learn all you can from them, but your training is only a couple weeks away, so don't know how much you can learn in such short time.

I, like Cattlekid, am so thankful for this little machine.  We do seem to have our lives back in some normalcy mode.  We have been lacking that for few years, but since Nxstage, all is good!!

You did all you could to keep from doing it, but you know you need to to feel better.  Give it time to work through this stuff and come ask us anything you like!

I will pray for you as you asked!
God Bless,
lmunchkin
 

[MooseMom]

Such a scary time.   This period of transition must be so hard.  But knowing that you will soon be trained to dialyze yourself must be a good feeling.  At least I hope so because that's the path I tend to take myself!  LOL!  If you wouldn't mind, I'd really like to hear more from you as you actually start and as you begin your training.  There are plenty of us in exactly your position, so you could teach us a lot.  Just knowing what to expect would help...but only if that wouldn't be an imposition.

I'm wishing you the very best of luck!

[Rerun]

There will be so much coming at you that a catheter gives you a break from the needles.  No needles the first few times.  Really, that is a blessing.  You will do fine.  Take a nice blanket and wear a shirt that buttons down so they can get to the catheter.

Best of luck.   

[willowtreewren]

Hi, Bill.

It is never good to hear of someone needing to start D. 

The NxStage learning curve is steep at the beginning, but trust me, you DO get the hang of it. 

Best wishes. 

Aleta

[lmunchkin]

And NxStage is a Good Modality Choice.  Hope it works for you as it has others on this site!

lmunchkin

[big777bill]

"Are you eligible for a transplant?  That would be the ultimate."
 Unfortunately I'm not eligible due to liver damage done to me post liver transplant by hep-c. Hep-c is a very awful disease and the base cause for the majority of my health problems.  I am really fortunate because my wife is a nurse and she will be my NxStage partner. I was so proud when my 27 y/o son offered to be a backup for her and go through the training with us. He will be a big help and the fact that my wife will know that it's not all on her shoulders is a good thing. I haven't been posting on here much but have been reading of others experiences with the different modalities available and it's been a big help. So much knowledge and experience on here! This is far and away the best site for anyone involved with dialysis. My nephrologist is real big on the NxStage,  many on here are too, so I think that is the best way to go. I will be posting much more now I'm sure as the questions will be flying through my head with all this going on. Everyone has been very kind and encouraging. I would like to thank each and every one of you. Moosemom I would be glad to do anything I can. Hopefully you won't have to start this for quite some time yet. God bless you all!

[jshabanian]

Starting dialysis is scary!  For me when I walked in the first day...it was surreal. All the sounds and people in various stages of health.  Everyone connected to a lifesaving machine.  It took my breath away.

I found that it is important to wear very comfortable clothing.  It is not a beauty contest..Be comfortable!  If the center allows you to eat, bring some snacks.  It helps the time pass.  Bring several things to do.  I brought crossword puzzles, book, note pad (in case I wanted to write down something I might forget), soft blanket, hard candies (if you can eat them), good headphones, a portable DVD player.  I get bored easily!!

How wonderful that you have your wife and son by your side.  I feel so sorry for the people in dialysis that are dropped off by taxis or medical transport and they are coming from a nursing home alone.  They seem so sad.

I am sure you will find the staff to be very helpful and kind.  If you have questions, ask.  Get involved in your care.

Good luck!

Janet

[MooseMom]

Moosemom I would be glad to do anything I can.

This is so generous of you.  I know that starting dialysis represents a big change in your life.  How could it not?  While it is an enormous challenge, the alternative is horrible illness and then death.  NxStage gives you a real chance to remain healthy and happy, in charge of your own health.  If, on top of all of that, you take the opportunity to "teach" others' who will be following in your footsteps, you will be such a help so an awful lot of people, so thank you so very much.

[malaka]

I started January 13, and so far I'm surviving.  It is boring.  So bring eading materials, CD player, DVD player, etc.  Unless you are really into watching junk afternoon tv. Me?  Not a fan of Judge Judy, Maury Povich, or Dr. Oz. 

[Gerald Lively]

big777bill;

It’s all over for ya.  Vampires run those dialysis places.  Just lift your chin up and let ‘em bite.  It only hurts for four hours, then they kick you out on the street and  . . . . . .

Listen Dude, I did it and it ain’t no big thing.  I wear sweats, read a book and tell lies to the staff there.   Lay back and go to sleep, I do it. 

gerald

[lmunchkin]

Looks like you got a fantastic support system too!  AWESOME!  How wonderful your son has stepped up to help too.  More back up the merrier. You are right, if he wants to back up the wife is a huge help.  Its good that you recognize the toll this disease not only takes on you, but your family too!  So giving your wife and son a break every now and then will definately help.

What a wonderful family!
lmunchkin
 

[Lowilson]

I started a month ago. It not that bad truth be told I feel 100 percent better and am 20 lbs lighter. I can breath and walk without struggle and my energy level has finally returned. The four hours sucks but I found a thing called iTunes university. I am taking college classes for free. Get an Piad. It is the ultimate. You deserve it!

[big777bill]

 It looks like the next month is going to be totally CRAZY. Monday we go to Thomas Jefferson Hospital for pre-surgery testing. Tuesday we go to an outpatient center to have the catheter "installed". Then we go straight to the dialysis center which is next door to my nephs office to get my dialysis cherry broken. The dialysis/Drs. office are 50 miles from my house. Back up there on Thursday and Saturday to end the week. Monday Feb.13 we start NxStage training at the center and that's M-F. Excepting  Wednesday Feb 15 when we have to go to Jefferson to have surgery to move my fistula. They told me the NxStage training normally takes one month but they think that it shouldn't take us quite as long due to the fact that my wife is a nurse. I hope she is a real quick study! I think I may be seeing GL's vampires coming at me before this is all over. I probably will need to do a lot of sleeping in center just to get by.
  Thanks for all the advice and well wishes

[lmunchkin]

You guys will get through all these loops together. It is very overwhelming starting out, but after a couple months, you will be pro's.  Please post your experiences as you go along.  It will help so many who will have to face this that are not quite there yet.

It would be nice if your wife could come on this site for the caregivers. I believe there are a couple caregivers (I Think) that are nurses on here too.  Besides, this site is excellent in support!

Good luck to you, Bill and please let us know how it is coming,
lmunchkin
 

[big777bill]

 Imunchkin I think I'll take your advice and do a weekly update on how things are going, more often if needed. I've been trying to get my wife to come on here and check things out. I think that the caregivers thread would be good for her. So far I've felt nothing but love on here and there is a tremendous amount of experience to learn from. I'll be getting back to you all after a day or two with an update. God Bless!!

[Whamo]

I was in your shoes about three months ago.  Here are some tips from someone who just walked down that trail.  #1 Measure every ounce of liquid you put into your body.  #2 Avoid salt like the plague.  Sodium will make you thirsty.  And the thirst is a very powerful drive.  #3.  Eat a lot of egg whites and whey protein.  #4 Watch your potassium and phosphorus intake.  Phos will make you itch like crazy.  High potassium puts a lot of dialysis patients in the hospital.  It can kill you.  #5 Walk 30 minutes a day (except of course, when you feel dead).   
If you don't watch your liquids you will bloat between sessions, and they have to take more blood out of you.  This is hard on your system, and it will kick your rear end.

[big777bill]

 

[big777bill]

 Well here i go! I'm about to get in the shower and get all cleaned up to go do this . I gotta suck it up put on my fightin' face and go do this Wish me luck and pray for me that all goes good. Thank you to everyone in advance.  Bill

[Traveller1947]

My thoughts and prayers are with you, big777bill.  Let us know how it goes...

[Riverwhispering]

Keep posting everyone.  This thread is really helping me with my fears since I'm going to be starting anytime now and I'm alone. 

My heart is with you Big777Bill,  please keep posting your experience and others please keep posting especially if it's been not a doom and gloom experience to be on dialysis in center.   My fear is so great right now I'm falling apart emotionally.

I have so much fear I feel like I'm on the edge. 

[jshabanian]

Good Luck!!  I hope your day goes smoothly and you dialyze well.

Yes, make sure you post your experiences with NxStage.  I am so interested and scared by that modality. 

[boswife]

Sending prayers and best wishes... Hoping to hear some good news from you in the next few hours     

[willowtreewren]

 

thinking of ya!

Aleta