Newcomer

[Hope]

I have been diagnosed with Stage 4 Kidney Failure. There are certainly a lot of questions, but it is much more to this disease,emotions, anger, etc.. You will find yourself saying "what am I going to do and "How do I handle these changes?

[pal]

Re: Newcomer

Hello Hope,

I sure understand how you are feeling right now. This is exactly how I felt when I was told I had kidney disease on November 5. I somehow found this forum and have been receiving a lot of support from everyone. We all "speak" the same language. We share our experience and we gain knowledge from each other. Members are AWESOME. They are not selfish. In fact, they are giving me lots of information, such as websites on diet plans. Since I join this forum, it gives me hope and I realize that having kidney disease is not a death sentence. I still have my ups and downs. My family members are still learning how to deal with my disease with me. However, I know that I am not alone.

pal

[chefnancy]

Re: Newcomer

Welcome, Hope. When you are first diagnosed things can be pretty mind-boggling. There are lots of helpful and knowledgeable people on this site who will guide you through. You may want to go to www.kidneyschool.org. This is a site with a vast amount of information about kidney disease and its treatment which is presented in modules so that you can learn at your own pace. It will give you a good orientation to kidney disease so that you can ask intelligent questions of your doctor and manage your disease appropriately. Things do get easier with time. I hope to see you back here often. Ask lots of questions. The only stupid question is the one you don't ask. Also, feel free to vent your frustrations. We all have lots of them and this is a good place to get them out.

[LindaE]

Re: Newcomer

Hi Hope!
Welcome to the site! Our goal here is to supply support, understanding and knowledge so the kidney disease and it's many companion complications will hopefully not be so frightening. You have beat one very important part of the battle by understanding that our disease is much like a puzzle. In order to see the picture we must put all the pieces in place. The pieces are the emotional things, the fear, the hopelessness , seeming impossible complications that sometimes arise and the acceptance. Only when these pieces are finally put into place can we finally see the full picture and see the beauty in that picture. Often a piece will appear to be missing and takes a long time to find. It's therebut if we give up our puzzle will remain incomplete. It takes strength and determination to live our lives and to realize that our lives can be relatively normal and defnitely happy. That piece seems to be the hardest piece to find but once found that picture is complete and we begin to see it's beauty. Chef Nancy is absolutely correct in that kidneyschool.org is fantastic. You also might check out dialysis-support and speak to the many other people beginning dialysis and those long-termers who have been for many years. As here, the support is awesome!

Please feel free to vent, rant and rave here. We've all been there and continue to visit there frequently. We are all just a click away!

[DaVitaCasey]

Re: Newcomer

Hello Hope,

Welcome to DaVita Forums. Hopefully you'll take a lot from this website as many here already have. There is a ton of advice and information on DaVita.com, even renal-friendly recipes are available on the site.

Don't hesitate to ask questions, b/c like others said, it's better to ask and receive an answer than to not asked at all and receive little knowledge of the disease.

[Anathia]

Re: Newcomer

I am new to this site, don't know where to start; but here goes ---diagnosed October, 2006 w. stage 5, put on transplant list; getting better, off list in 2008, and now stage 3! Diet changes are paramount, and the help of God, and Dr. Medics are telling me to relax my diet, but I'm nervous; haven't seen dietician at all, using DaVita website and recipes to self teach. What next for this senior female? I plan to travel to China in the Fall of 2009, and want to stay healthy before, during and after. Italy in 2007, Russia in 2007- both went well, watched diet very carefully, but didn't deny myself new 'stuff' and drinks. How am I doing so far?

[gregory.lance@sbcglobal.n]

Re: Newcomer

Hi hope welcome to the group were all in the same boat youll find alot of good info on the site from everyone

[ddarling]

Re: Newcomer

Anathia,

Please let me know how you went from stage 5 to stage 3. I am very interested in your story.

[Cassie]

Re: Newcomer

Sounds like you made some great choices for your health, Anathia! That is great! Did you curtail your protein intake? If so, how much? Supplements? What exactly did you do to get such an improvement? We are thrilled for you!

I am stage 4, last year hit 5 for a while, began a very low protein diet supplemented with essential amino acids and increased my GFR to between 23 - 26%.

BTW, welcome to Davita. We are glad to have you!

[chefnancy]

Re: Newcomer

Welcome, Anathia. Your function improvement is impressive. I hope that you have a wonderful time traveling this fall.

[ajmifaust]

Re: Newcomer

Yes, get back to us how you improved so much. I am stage 4. Question: Blood work comes back at 20% function but Urine tests come back around 40% -- so what is my true number? I am starting to feel weak everyday. My legs bother me (is that normal) and my sides and back hurt (is that normal)? thank you for any advice -- I am very new to this

[angieskidney]

Re: Newcomer

I have heard of rare cases where people improve because of diet changes. Is that how you went back down to stage 3 from 5? Stage 5 is end stage (as it is called because it is the stage you start dialysis in) and I had never heard of anyone going back from stage 5 .... just people who were stage 3 or 4 going back to stage 2 or 3 ..

[Cassie]

Re: Newcomer

Angie, my GFR last fall was 14.75. I usually just say it was 15 but actually was a bit below it, so I was in stage 5. I brought it up to 26 through diet. Sometimes I wonder if I'd be absolutely strict in my diet if I could bring it up even farther, but I feel like we have to LIVE too. So I eat cheese about one day per week. Sigh............ LOL!

I believe too that I could bring it up more if I could make myself get on a raw food diet. But so far I haven't gotten past the thinking stage.

[angieskidney]

Re: Newcomer

Very good Cassie! That is impressive. I think the way food used to be was so much better than now as everything is so processed and as thus so full of phosphate which hurt even healthy kidneys. Healthy kidneys can handle it just fine but less than perfect kidneys .. too much phosphate can do them in .. what a way to find out. Like there are some tests where you drink some phosphate stuff (I think for colon?? Forget now). Well, I do believe diet plays such a huge role and it is so good that you are on top of your diet. Just keep an eye on the labs for adjustments that need to be made and of course always keep your medical team in the know about it all. Working as a team is the best way even though some medical staff don't like "too many hands in the pot". I have found however that it is good for yourself to be as informed as you can to be able to be your best own advocate.

[Jeni]

Re: Newcomer

Welcome, Anathia. Your function improvement is impressive. I hope that you have a wonderful time traveling this fall.

Cheers Chefnancy! I just wanted to take this opportunity to thank you. I have been browsing this site for about 6 months now and I always find myself searching through the different threads and quotes to see what Chefnancy has to say about it ~ I truly appreciate your common sense and vast knowledge on all things kidney!! I have finally actually joined the site and this is my first post. I was diagnosed about a year and a half ago with membranous nephritis, no cause could be determined even after biopsy. I have a fistula in place that has not matured. We tried a graft in the other arm, we let it heal for two weeks and just before we tried to start dialysis it stopped buzzing. Then I had a chest catheter put in so that dialysis could start as prescribed. The next week I underwent another surgery on the arm with the graft to try to fix it but this was unsuccessful. The surgeon said I had some sort of reaction to the graft. Reaction to me sounds like allergy, do you think I will have trouble with this graft at a later date? I understand that grafts are very rarely removed. Any insight you may have would be very much appreciated.