Needing advice!

[Grady]

Hi . I'm Grady. I'm new to this kidney thing and am kind of scared. I just left LSU Medical unit. Doc said I have 9% of my kidenys left. Going to be set up for mapping and a fisher. I don't want to have to go somewhere 3 times a week for this treatment. I want to do it at home. What can I exspect? Do people need to sign up for disability because of this desease? What do I do? Please help. I'm alone in Louisiana. Should I move back where I have family close at hand? I'm confused and don't know what way to go.

[PatC63]

Hi Grady, I too was recently diagnosed with renal failure, stage 5 which is dialysis time! I was set up with emergency dialysis, a chest catheter to start. As I got stabilized, I was given a choice of hemodialysis (HD) or peritoneal (PD) dialysis. I chose PD so I could dialize at home. I am dialysing 4x a day, every day. While it can get to be inconvenient sometimes, to me-at least it is a lot more easier & I'm more productive than if I was going in-center 3x a week for 4 hrs a week. Even though I can't be moving around a lot @ home while draining/filling, I can interact with my husband, watch tv, read, or talk on the phone. Or I can have a pile of laundry & fold t-shirts or balance my checkbook or...I'm sure you get what I mean. And I will be getting tested this week for my night cycler-finally, so my days will be freed up more.

What I'm trying to say is you don't need to stay with in-center dialysis. You can start training for home dialysis, whether it is HD or PD. I think HD takes a bit more training, since it involves your veins, fistula & blood, but it's do-able @ home with a partner. With PD you don't need a partner. Your best bet is to talk to your Nephrologist & your family, to see what is best for you. Good luck & keep us posted on your situation.

[PatC63]

PS: I am still working full-time. I even do an exchange at work!

[John70669]

Hi . I'm Grady. I'm new to this kidney thing and am kind of scared. I just left LSU Medical unit. Doc said I have 9% of my kidenys left. Going to be set up for mapping and a fisher. I don't want to have to go somewhere 3 times a week for this treatment. I want to do it at home. What can I exspect? Do people need to sign up for disability because of this desease? What do I do? Please help. I'm alone in Louisiana. Should I move back where I have family close at hand? I'm confused and don't know what way to go.

Hey Grady - You aren't alone in Louisiana! I am in Louisiana also and you can find this website no matter where you are.

I chose Peritoneal Dialysis (Cycler) that I do at home. I knew I would not feel comfortable going to a center 3 day a week.

Also, I only missed work to have my PD catheter placed. I don't plan to retire any time soon.

Slow down and take several breaths. We will get through this!!

[M3Riddler]

Hi . I'm Grady. I'm new to this kidney thing and am kind of scared. I just left LSU Medical unit. Doc said I have 9% of my kidenys left. Going to be set up for mapping and a fisher. I don't want to have to go somewhere 3 times a week for this treatment. I want to do it at home. What can I exspect? Do people need to sign up for disability because of this desease? What do I do? Please help. I'm alone in Louisiana. Should I move back where I have family close at hand? I'm confused and don't know what way to go.

Hi Grady,

Dont let the word dialysis scare you. As long as you educate yourself you will always be ahead of the game. Learn as much as you can about dialysis and why your kidneys failed. Learn what your blood results mean and what lab tests affect what organ/organ system.

I would highly suggest home dialysis. With in-center, you are not getting the best treatment....in fact you are getting the worst treatment out of all available for dialysis. You will find this if you do the research.
For home dialysis, more than likely you will need a partner. Especially if you choose home hemo dialysis. There is a type called NxStage. You can read about it at www.nxstage.com
There are a few centers in LA that offer this type. If you go to the website, on one of their pages, you can enter in your zip code ( or your family's zipcode where you would be moving) and see how far away the centers are. This is something you may want to start planning now. A fistula will take approx 2-5 months to mature before they can use it.

The best thing to do now is educate yourself and talk with your family to see if there is someone that could be there for you while you dialyze. If they are not fully commit themselves, there is no sense taking that route.

More than likely, the nephrologist is going to push you towards in-center dialysis and tell you how great it is as you can sleep, watch tv and just sit back and let the nurses take care of everything.... This is the wrong treatment plan... You need to be involved and know what is going on. Know how to setup a machine and operate it. Again with in-center, you are only dialyzing approx 12 hours per week. Your kidneys work 168 hours a week....now does this sound like your getting good dialysis at only 12 or so hours a week? Your labword will be like a roller coaster since you skip every other day. Plus you are skipping 2 days on the weekend. This is not good treatment and you will definitely feel it.

With home dialysis, your diet it much more liberal if you even have to be on a diet. If you are on blood pressure medications, you may be able to stop taking them......

Feel free to ask any questions here..... We all will be glad to help you...

But remember..the nephrologist is responsible for discussing each type of dialysis along with the beneifts and cons of each type and together you should make a decision based on what is best for you and your lifestyle. Do not just accept if your nephrologist says you are going to be starting in-center.... You have other options that are much muhc better for you and your body...

Again, we are here to answer any questions you may have.....

///M3R

[ruthevans41]

I’d suggest you discuss home dialysis with your nephrologist and see what he/she says. I have a friend who has been doing this for years, is still working and for the most part enjoying life. There are bound to be ups and downs but I hope you find the support and encouragement you need on this thread. I have an aunt up on the east coast and she gets someone through home health care NJ services to do dialysis for her at home. She is doing fine and living a full life.

[George1961]

Grady,
They are right about slowing down and take a breath.

1. You are not alone out there. You have a support mechanism here with people who understand what you are going through.
2. Talk to a social worker at your dialysis facility. Just to let you know, there is a 5 month wait to get diasability. You can start the paper work though on line at ]www.ssa.gov[. ou don't have to quit working, but if you can take FMLA leave for a few weeks when you start dialysis, then you should. It makes the stress of dialysis more tolerable.
3. Home hemo is great - but almost everywhere you go there is a waiting list, but believe me the wait is worth it. Less stress on the body, better treatments and you will feel almost back to normal in a few weeks. My family can't believe the "New" me. I used to go to work and come home exhausted and wanted to be left alone. Now I do things with my family.
4. Educating yourself about this disease is important. It gives you power to make decisions regarding your choice of treatment. This alone will take off a lot of stress for you.

Good luck and keep in touch, I know I am here for you and my thoughts and prayers will be with you.