Newbie and Needing Support

[cadreamn]

Hi all, I hope I am in the right spot for some support. I have CKD Stage 3. I feel like I am starting to decline and I am feeling somewhat depressed. I am getting so frustrated with the medications, the diet and the waiting. My Nephrologist told me my kidney function was now at 45% and I have no underlying diseases that would explain my reason for CKD. As far as I know no one else in the family has kidney problems. I have had 2 kidney biopsy's both were non conclussive. I was told last month when I had the last biopsy that it was non conclussive due to scare tissue. They took me off the steriods due to me not having any underlying diseases that may be causing this i.e. Lupus, Hep. etc. I am consistantly losing large amounts of protein in my 24 hr. collects. At one point I was losing up to 9000 mg. in a 24 hr. collect but now it's around 2500 to 3000 mg. or 2.5 - 3.0 grams. So now I am on Diovan, Lipitor, a diuretic and Zestril. So at least I am only on those meds. now. I was on many more but they took me off of them due to the steriods not doing me any good since I did not have any underlying disease. I do not have high BP they are just putting me on these meds. to ensure it does not get high and also to protect the kidneys with the ACE inhibitor. I also am not diabetic. I feel like a pin cushion and a drug addict. I am constantly on this for a while then on that, etc. I am starting to get really down, as they say the waiting is the hardest part. I do not know what to expect or what to do besides try to control my diet, exercise and take more pills. Am I the only one that feels this way? I got a call from my Dr. on Friday and I am now Anemic and am going to have to start Procrit injections. I am not sure if they will make me feel better or not but I am hoping so, I am so tired and I am not sure if it's because I am depressed from dealing with this and what might be next which is scarey to me or if it's really from the Anemia or both? Anyhow if anyone has any advice please feel free to be in contact. Sorry for going on and on, just needing to vent to someone that will hopefully understand.

[Nanny]

Re: Newbie and Needing Support

Hello Cadreamn, I am also stage 3 CKD and I know exactaly how you are feeling. When I first got the labs and started pounding on the web for answers, I too got a lot of anxiety. Most of the anxiety came from not really understanding CKD and it's stages. Then I found this site and these wonderful, intelligent and well informed people who answer so many questions and I am much calmer about all of this. My GFR is similar to yours but I think I have had CKD for about 10 years so I am sure that your numbers can remain in a close range for many years and maybe longer than mine with proper diets. I only became aware of this condition this year and yet as I look back over old labs...there it was as early as 1999. I was also slightly anemic on last labs so my Neph ordered new labs to check my iron levels....still waiting to hear about that. Keep coming back and keep asking questions and I know you will receive support and information you need. Nan

[cadreamn]

Re: Newbie and Needing Support

Thank you so much Nan, it's so nice to know that there are people out there with the same concerns and are there to help! I know my family and friends are being as supportive as they can be but they just dont understand, heck for that matter, I dont understand so there is no way that they can. Good luck to you and I hope things get better for all of us!

[Hockeymom]

Re: Newbie and Needing Support

Hang in there... my son is 14 and has CKD with no family history or primary cause. He started EPO shots in May and is now at the point where they are going to decrease them because hey have helped him so much. He is looking much better! He has continued to be very active, he is playing football for his high school and just started as a hockey ref. I am amazed by him and his great attitude. Some of the meds he is on are: Cellcept, Lisinopril, Iron pills, kidney vitamins, zocor, prednisone, calcium. So as you can see he is on several medications. His protien he is spilling is at about 5. So, a little higher than yours. It is very scary but just know your not alone.

[awaitingamiracle]

Re: Newbie and Needing Support

All I can say, it try your best to keep a positive attitude. Don't let the lab numbers scare you. My husband and I are getting ready for our transplant next month. I am still praying for a miracle, yet I continue to research myself and he continues to follow doctors orders and eat healthy. My husband's side of the family has a long history of kidney promblems. We just found out that my 13 yr. son is spilling protien. He is seeing my daughter's nep.(she been seeing him for 9 yrs., since she was 10yrs. old she has been spilling blood, but no protien so he follow-up with her yearly) My son's creatine is normal, neph. is trying to figure out why the protien.....So through all these curve balls life sometimes bring us, we just try to keep busy in helping others around us so we stay out of the depression trap. By the way its ok to cry a little, but remember to wash your face and get back up. You will be surprise how strong you really are

[eaglewoman]

Re: Newbie and Needing Support

Hi,I am at 26% a year ago I was at 72%, just can't find what happened in this past year to make it drop so much so fast. there is no history in my family and I really feel great, no syptoms or anything. I used to take a nap everyday and haven't done that in ages.
I had a kidney biopsy last week and will get the result this thrus.Am hoping for something. She said she can't treat it until they find out why.
I am going to ask for a renal dietition when I go on thrus. hoping to at least feel like I am
controling something.
We found out in may that it was down, it was 42% then, keeps going down and it seems like it takes so long to find out anything, one bunch of test she did, she said it took 45 days for the results.
Its very nerve racking as yoou feel like nothing is happening.
Good luck.

[brandy]

Re: Newbie and Needing Support

Im also 26% and creat is 2.7 and also have some symptoms like bones hurting at times swelling of legs and ankles itching at times , and spine hurts, but no nausea thank goodness even tho I have these symptoms I truelly dont know if its CKD or just something that happens . Try to except what is happening and learn all you can so when and if it does you will not be in the dark ( so they say.)I have listened to these people with dialysis and they know what helps and hurts listen to them I trust what they are telling you May god be with you .
BRANDY

[cadreamn]

Re: Newbie and Needing Support

Thanks to all of you for posting. I already feel better just knowing others are out there dealing with the same things or in the least similar things! My kidney function was about 90% 6 months ago and is now 45%. What in the world made it drop so fast? Who knows but I am praying now that it does not continue on this path because if it does I will be in stage 4 or 5 before I know it and I dont want that. I feel sore all the time and now my back is starting to hurt where my kidneys are and I just ache everywhere, kinda like I have the flu. I am not sure but I think I read somewhere that the anemia can cause this??? Anyhow I am dealing with all of this the best I can and am praying it gets better, especially after the procrit injections. If not, I guess I'll just shed more tears till something gives! Thanks again for all the info. you all are the best so far! :-)

[chefnancy]

Re: Newbie and Needing Support

Welcome, Cadreamn. As you have seen, the people on this site are incredibly supportive. If you haven't already found it, I would suggest that you go to www.kidneyschool.org. This site has a lot of very accurate information about kidney disease and its treatment including the renal diet. The person who told you that the waiting is hard was correct. This is especially true if you don't know what is causing your kidneys to fail. All I can say is control what you can -- diet and medications -- and accept the rest. I also had to have Pro-Crit injections when I was at your stage. They were like a miracle drug for me. They caused me to have some joint pain but it was worth it for the increase in energy that they gave me. Good luck and come back often.

[Carsonv3]

Re: Newbie and Needing Support

Cadreamn, you're not alone. I'm at Stage 4 CKD. I'm Anemic and injecting 10,00 ml of Procrit a week. Can't honestly it makes me feel better because i'm constantly exhausted.
Hopefully with Dialysis i'll feel much better.

Deppession is hard to deal with especially if all this is new. Communicate with your support team here, we're all in this together.

[chefnancy]

Re: Newbie and Needing Support

Carson, give the ProCrit shots some time. It took me about two and a half months before my numbers started to improve and I felt a lot better.

[cadreamn]

Re: Newbie and Needing Support

Oh my, all of you are wonderful. Thank you so much for the web site on the kidney school, I cant wait to go there and read, I am sure it will give me good advice. I do hope the Procrit shots will make me feel better, but I did hear that it's not going to work right away so I will be patient as I know it will take some time. Thanks for all the wonderful support and if I can do anything for any of you, please just ask. I'm hanging in there.... Somehow.....

[chefnancy]

Re: Newbie and Needing Support

Keep coming back and let us know how you are doing.

[eaglewoman]

Re: Newbie and Needing Support

Hi,
Just got back from my biopsy report.
Don't know that I know a whole lot more than I did going in, but at least it seems not that bad. The report says:
43% glomerulosclerosis
Chronic Tubulointerstitial injury involving an estimated 40% of the Tubuloinerstitial compartment.
Neph says;
don't need to do the renal diet yet, but did give me some information so I can sort of watch what I am eating. No need for iron, or the binders as all those numbers are still good. Still don't know what caused the kidneys to fail. going to keep watch. will go for more blood work next week and then again in Nov, unless somethig shows up in the test next week.
Said I have to consider myself a kidney patient, and be sure and clear with her any new medicines and test from any other dr and be sure and tell them that I am a kidney patient.
Right now I am ok, and have none of the syptoms, except for the blood results, so I feel lucky in that, and will keep monitoring to be sure all is ok.
My daughter-in-law went with me today, just in case! and she is a nurse so she had soem questions to ask the dr. too. she is very good and takes very good care of me.

[chefnancy]

Re: Newbie and Needing Support

Actually those are pretty good results. Of course it would be better if the tests said you didn't have kidney disease at all, but these results say that you are in a very early stage. If you watch your diet (probably only need to watch sodium at this point) and take any medications according to instructions you will have a long time before your kidney disease becomes a problem for you.