New patient help :)

[y3lhsa]

Hello my name is Ashley. And i will be a new patient of home dialysis or hemo. I just dont know which one i should pick. The shock of the news has made me a little sad because i been trying to save my kidneys with chemo and tons of medication for about a year now and nothing has helped. So now in the coming week i have lots of doctors apt. I just dont know what to expect or how everything is going to happen. To some it all up im pretty much scared. A lot of people tell me that ill end up feeling a lot better in the end of this. Thank you for your help everyone.

[sugarless18]

Re: New patient help

Hi Ashley--

You have definately come to the right place! Lots and lots of great people here with all kinds of kidney problems. Chances are there is someone here going through something similar to your story. I just wish that I knew of this website when I had kidney failure 16 years ago! Being told that you have kidney disease is a VERY scary realization. I'm sure it's even scarier to know that dialysis is just around the corner, however, dialysis is much different than it used to be. New advances are being made every day. The kind of dialysis you choose really depends on the type of person you are. Are you motivated and want to stay at home to do your dialysis? If yes, I would consider peritoneal instead of hemo because, as I'm sure you know, hemo requires visits to the center. There are lots of resources on this website. Be sure to check out all of the discussions and also the recipes. Just remember, everyone here is willing to lend a listening ear and it's an absolute wonderful place to come to talk to others just like you. I wish you luck with whichever method you choose and remember, we are only a mouse click away! Please keep us updated with your progress Ashley! God Bless!


Teresa

[cicero]

Re: New patient help

Welcome and you are not alone, we were all scared and after 6-8 years some of us are still scared.

Your Dr should give you the pros and cons on the different schemes, modes, of dialysis. They are not engraved in stone nut are general and then with your physical characteristics and some desire, a plan will be made that is best for you.

As time goes on you'll begin to be more comfortable with the process and you will reach what I call a new normal of life. Not that that one won't change but it will be current at that time.

Take time and go visit a dialysis center and get a tour and ask if you can meet one of the patients and then try to get one on PD that you can talk to.

Be prepared for a major living change. New requirements on time, new diet, new liquid protocols and maybe a new exercise program.

Most Drs don't call for it but you'll feel much better and the dialysis will work much better.

Once again welcome and feel free to ask as often as two to three time per day. Ask, its very helpful to know as much as possible.

Best regards
Cicero

[M3Riddler]

Re: New patient help

Hello my name is Ashley. And i will be a new patient of home dialysis or hemo. I just dont know which one i should pick. The shock of the news has made me a little sad because i been trying to save my kidneys with chemo and tons of medication for about a year now and nothing has helped. So now in the coming week i have lots of doctors apt. I just dont know what to expect or how everything is going to happen. To some it all up im pretty much scared. A lot of people tell me that ill end up feeling a lot better in the end of this. Thank you for your help everyone.

y3lhsa,

Gather as much information as you can about each type of dialysis. Do not let the Dr. Choose what type to go on as it should be your choice according to what best fits your lifestyle.

Ask about home hemo with NxStage as well.... The diet is pretty much liberal since you will be dialyzing more often. You should be able to avoid taking any types of blood pressure meds after approx 1 week. Also, with home dialysis, you choose your own schedule and do not have to rely on a centers schedule. You are in chrage and do not have several techs and nurses you do not know and the staff is like a rotating door for the most part. Many, but not all, are there for a paycheck and the care reflects it. Being in charge, enables you to make your own decisions and do what is best for you. You should be involved with as much as your treatment as possible. Rememeber, this is your life we are talking about. Would you let a stranger you do not know come and treat you when the availability is there for you to treat yourself?
You can go to www.nxstage.com for more information.

Try to learn as much as you can and educate yourself. Dont rely on the nurses and doctors to openly tell you everything. They will not. You are only going to hear the basics. Dont be afraid to question the doctors and nurses either. This is your right to ask them.

Try to stay away from in-center dialysis. This is type that is on the bottom of the charts for being optimal and for adequacy. You are only dialyzing 3x per week approx 3 or 4 hours per treatment making it approx 12 hours per week. This is not enouph dialysis to rid your body of toxins that will build up and eventually cause more issues.

Your kidneys work 24/7, so you want to choose a style that enables more dialysis if you choose.

Feel free to ask any questions you may have. there are also a few websites you should look at.

www.nxstageusers.com
www.kidneyschool.com
www.homedialysis.org
www.nxstageusers.com
www.fistulafirst.org
http://www.fistulafirst.org/Patients.aspx

The list goes on.....

Again, ask many questions!!! Information is Life

[cicero]

Re: New patient help

In center 3x4 is not the best of the dialysis world. But Nocturnal 3x8 has labs equal to both PD and NxStage. The diet is not as relaxed as PD and NxStage, but the results are. You have to weigh sleeping with a bunch of non relatives three nights a week but you have all your days free. If you go this way try for the latest hook up possible. Now I go on at 8 and get off at 4AM.
Not much going on at that time and I often go back to bed and just sleep my life away. When I have IT jobs that need work, I stay up and catch a nap at 3-4 in the afternoon. Makes for a good long work day.
In any event be educated, make a choice knowing that it probably can be changed if you don't like it.
Best regards
Cicero

[patty_lewis]

Re: New patient help

Ashley,

I hope that you have an awesome kidney dr. They have a lot of resources and information. I seriously didn't know anything about dialysis before all this. The staff helped me make a good decision and I am generally happy with PD. I do the night cycler and that gives me my days free of manuals. Since my kidneys finally failed to the point that I only pee like 2 tablespoons a day, I have added a 6pm manual dialysis.

Just learn as much as you can. I know in the beginning I forgot certain things but I have pretty much gotten the hang of all this dialysis stuff. If you do the dialysis at home your staff should teach you exactly the procedures that will keep you as healthy as possible. They teach you the right way to do the whole process to reduce your risks of infection. When I took the class, it took me a couple of weeks to learn and practice with them before I went home and got all the equipment and dialysis solutions.

Let us know if we can help you on your new journey!!! Stay well!!

Patty

[littlefoot31211]

Re: New patient help

hello everyone my name is jessica im 24 yrs old My 8 month old daughter Riley mcCracken was born with end stage kidney failure, 11% she was born weighing in at 5lb 8oz and would not eat, it was the best plan to have her transported to childrens hospital of central california I was informed when riley was 3 days old she only had 1 kidney a few days later they tried another test to discover both kidneys barely functioning. Every day seemed to be set back after set back, I was told my daughter would need dialysis when she was only 1 week old if she did not improve. Seeing my daughter being poked with needles and hooked up to machines makes you feel helpless. After a few days riley began to eat more and eventually her creatine level stabalized along with her blood pressure enough for her to go home. Riley has been up and down since she came home. Losing weight, being re- admitted to the hospital for infections. Due to her kidney function riley takes numerous medications. Riley goes in for checkups once or twice a month at childrens hospital I was informed on 10-24-11 that she will be needing a kidney transplant when she is 22lbs. Riley currently weights 15 pounds. Riley is a very happy child no matter what is happening around her she is always smiling. I am a single mother who would do anything for her daughter, I am willing to donate one of my kidneys if i am a match for my daughter to enjoy her life, she will be having her surgery at standford hospital does anyone know what the process is for transplants?