Newbie here and questions

[tweetykiss]

My husband's creatinine levels just started going up in January and in recent weeks rising rapidly......early last week it was 3.1 and when the did the biopsy the next day it was 2.8 and yesterday it went up to 3.7.....do I need to worry and get alarmed?

The GP said the biopsy claims BP problems but now he does not think so since his BP was low yesterday and he thinks he may have lupus or some infection of anti immune thing and and may need steroids........

[tweetykiss]

Does anyone know the answer to this since I am freaking out over here about my husband?

[goofynina]

I am sorry, i wish i can help you Twitty, Please give it some time, it being a weekend, i am sure someone will give you some answer soon.  Take care and Good Luck 

[kitkatz]

I think patience is the key here. Patience with your doctor and patience with the entire situation. I think the bloodwork fluctuates depending on what your husband was eating or doing at the time.  Answers will come.

[lola]

I know when they have my husband fast for diffrent things his creatine always jumps up they said it's normal. I know how you feel i alway's freak when it happens and then it alway's comes down a little. Hang in there

[del]

Tweetykiss hang in there.    If he needed to be dialized right away I'm sure the doctors would have done it.  Sometimes creatine is like that it will go up but then go down again.  Hubby's did that a few times.  His creatine was 1700 before he started dialysis.  Don't know what that would be on your scale.   Keep watching his results though.

[stauffenberg]

There are two scales for measuring creatinine, but since one is exactly ten times greater than the other, it is simple to tell them apart and to figure out their relation to each other.  (In 1985 an international scientific convenstion established the so-called 'SI' units so that all medical data would be on the same scale, but many countries get into the bad habit of forgetting the right units to use.)  Dialysis is usually initiated based on patient symptoms, and some people have been known to tolerate creatinine levels as high as 1000 (or 100) and still be functional.  However, anywhere between 800 and 1000 is where dialysis usually begins.

Oftentimes the cause of renal failure is difficult to determine, and many cases are simply classified as being of unknown cause.  There are a wide range of auto-immune diseases which can affect the kidneys, lupus being the main one, and careful examination of the kidney cell changes by a pathologist should be able to determine which of the many auto-immune diseases is active.  The usual treatment is to suppress the immune system, using drugs such as prednisone, azathioprine, and cyclophosphamide, and sometimes the suppression can arrest the decline in renal function, but sometimes it can't.  The biopsy can give some indication of how far the damage has progressed so far, but a creatinine of 370 is not hopelessly high.

[tweetykiss]

Thanks for your replies on this....I hope to get other feedback since I am so new to symptoms and other information relating to this....

Now he says he feels weak so I am wondering if that could be that he has to adjust to reduced food consumption since he always would eat a lot and now his food has been cut at least half.....or is this weakness could be a kidney symptom?

[okarol]

My daughter's creatinine stayed in the 3 range for a couple of years, then creeped up to 6.2. She was tired a lot but still could function. Then a nephrologist told her at a Friday appointment that we should think about what kind of dialysis to do in the next few months. She was feeling very sick by then, but he seemed confident that she had some time left before beginning dialysis. But 2 days later her creatinine was at 10 and she was admitted for a chest tunnel catheter and emergency dialysis. So it can be steady, and suddenly unpredictable.

The evolution of kidney disease from the initial sign or symptom to development of ESRD may take months or years. However, the rate of progression of kidney failure and the clinical course vary with the specific kidney disease. For example, kidney failure is rapid in diabetic nephropathy, intermediate in polycystic kidney disease, and slow in lithium nephropathy.
-- from Nephrology
Chronic Renal Failure and Dialysis: Chronic Renal Failure - to read more go to http://www.medscape.com/viewarticle/534694?rss

In my opinion, what is more telling are the symptoms. Some people can do well at high creatinine numbers, other cannot. Lack of energy, edema, reduced appetite, itching, muscle cramps, vomiting and anemia are some of the signs of the approaching need for dialysis.

Have they checked your husbands GFR? It appears to be the most accurate measure of kidney function.

I hope you can get some answers from your doctor. Keep asking questions and know that we are here for you!
 

Karol

[tweetykiss]

Thanks for the information everyone......I know I have to watch him at home.......he is mainly feeling weak but he does not have the other symptoms.........

Now Okarol to answer your question about the GFR, according to the GP, he said it is 22 to 30 percent but when I use the internet GFR calculator and punch numbers in, it shows 18 percent GFR so now I am confused as well as scared........

Could his feeling the weakness be because he has to adjust to lower food consumptions or did I already ask that.....if so sorry......

I will read that link you gave me too Okarol

Now I am ready to donate the kidney to him but I was told we are not at that point yet so when is the point of transplant?

[okarol]

Have you discussed a pre-emptive transplant? This is done before the patient needs dialysis. It may be worthwhile to ask for an evaluation.

[lola]

My husband also was weak because his hemoglobin was really low but once he got his epo shot he felt better

[tweetykiss]

Have you discussed a pre-emptive transplant? This is done before the patient needs dialysis. It may be worthwhile to ask for an evaluation.

Now that you mention it, I will.....the GP told us Friday that transplants are not always guarantees and there are risks too since that involves two surgeries and then the rejection dangers and side effects of the drugs so they are implying that it should only be as a last resort.....now I wonder how bad does it have to be for most when they need the transplant.....

I have the same blood type as my husband but we don't know the tissue matches yet.......

Lola,

Before the biopsy, he has a low hemo too and then they put him on iron but from the Friday tests, the GP did not say anything about hemo and stupid me forgot to ask since I was really freaking.........

What is an epo shot?

[lola]

helps bring Iron up my husband gets one every 3 weeks otherwise he's exhausted

[okarol]

You mention the GP. Is your husband seeing a nephrologist?
Transplant is one of the treatments of renal failure, as is dialysis.
Yes, there are risks with any surgery, but I hardly see it as a last resort.
What is the local wait time for a non-living kidney for your husband?
There's more info here http://en.wikipedia.org/wiki/Kidney_transplant

[tweetykiss]

You mention the GP. Is your husband seeing a nephrologist?
Transplant is one of the treatments of renal failure, as is dialysis.
Yes, there are risks with any surgery, but I hardly see it as a last resort.
What is the local wait time for a non-living kidney for your husband?
There's more info here http://en.wikipedia.org/wiki/Kidney_transplant

Sorry you had to wait for this reply while you are really helping me...had to step away to do something.......

My husband goes to the VA since he is a vet from back in the 70s (he was in the Air Force then but no combats)......so yes he has a GP there and just back in April when his creatinine went up to 2.7, he got referred to a nephrologist....his crets have been changing a lot since.........we talk to the GP more since he is there everyday and the nephrologist is not........the GP will talk to the neph tomorrow even if that means him going upstairs since he feels this cannot be sat on and I am pulling my hair and missing work......

I don't now the wait time for VA patients here inspite of the fact that I am donating my kidney....they just keep saying "we are not at that point yet".......also the transplant has to be done in Madision, WI which I think is only a three hour drive for us but we will do amtrak and then rent a car there........

Thanks for your info......

Lola,

Is epo for iron too?  I admit I was confused by your original post since the late admin's name was epo and then I realized you must be talking about a medicine...sorry but I am just new to this kidney disease thing and already I am getting my socks in a wad........

[okarol]

BRAND NAME: Epogen, Procrit
Epoetin alfa is a man-made form of a protein that helps your body produce red blood cells. The amount of this protein in your body may be reduced when you have kidney failure or use certain medications. When fewer red blood cells are produced, you can develop a condition called anemia.

Epogen is used to treat anemia (a lack of red blood cells in the body).

More info and warnings here: http://www.drugs.com/epogen.html

It's been in the news lately. Check the news stories section or use the search bar to search for related posts.

[tweetykiss]

He is on Ferrous Sulfate for his lack of iron.......

I will read about that drug and the others mentioned here........

I just wonder how come doctors tell us to stay away from the Internet.....

[okarol]

I think they tell you to stay away from the internet because it's difficult to sort out which information is valid or important or biased.
Of course everything you read here is based on different people's experiences or perceptions.
As with anything on the internet, you need to use common sense and to research thoroughly.
The good thing about IHD is that there is a lot of experience here, and lots of support!

[tweetykiss]

I think they tell you to stay away from the internet because it's difficult to sort out which information is valid or important or biased.
Of course everything you read here is based on different people's experiences or perceptions.
As with anything on the internet, you need to use common sense and to research thoroughly.
The good thing about IHD is that there is a lot of experience here, and lots of support!

I love it here and everyone here has been great to me.....I just wish I joined when the site founder was still alive since he was phenomenal from what I have read.......

I also appreciate everyone giving advice and nothing is sugarcoated which is how I want things to be told...the straight facts so I know what to deal with......

[keefer51]

Tweetykiss, When i was first diagnosed with kidney failure i didn't know what to do. My creatine was 2.8 i felt fine. Due to pressure from familt and friends i went on dialysis. Believe it or not i felt better off of dialysis. After my transplant i of course felt a little better. i lived with my creatine going from 1.8 to 2.6 or 2.8. Sometimes it would go higher depending on what i ate. I also was able to get more BP meds that helped. My doc at the time also uped my prednsone. The four years i went without my meds had done some damage to my kidney but it held stable for 10 years. I was fine until i moved home. It had gone to 3.8. I waited another year to go on dialysis. I have been on for three years now. My creatine right now is 16.7. It goes as low 12.7 and 13.4. I am very tired. But i feel ok. I think diet and blood pressure are a important part. I had several kidney biopsy's that showed a higher creatine. But i never went by that. I was only born with one kidney so when that one failed i recieved a transplant.

[tweetykiss]

I am sorry Keefer what you had to go through and that you only had one kidney to begin with......how is it that people are only born with one kidney?  I am sorry that the transplanted kidney failed after a while....you brother is remarkable to donate that to you and I feel bad that it did last you through current times......

Now it is interesting you feel better off the dials than on it......

[keefer51]

Tweetykiss i was only born with one kidney it was located in my right pelvis when i was 11. Nothing was explained to me as to why. A certain religon i used to belong to said it was due to the fact i was born with "Evil" and that sometimes that happenes so i can suffer. But what the hell to they know. My kidney was always giving me problem as i grew. I wasn't allowed to do anything for fear something would go wrong. No sports, swiming, no contact of any kind where my pelvis was concerned. So i grew up just being able to fish and walk. When i was in my late teens i started to do more things seeing that i didn't want to be paranoid. It wasn't till i was in my late thirties and married that the kidney failed. It was also then i was told that when someone is born with one kidney there is also another birth defect. Sure enough there was. In trying to have children it was determined i could'nt without a operation. I was born without what i call "Vas Tubes. These are needed for the sperm to travel through. It was during this operation that my kidney failed. When i grew older i always thought about this my mother and father drank heavy all their lives. i wonder if this was why i had the birth defect?

[tweetykiss]

Keefer,

I am so sorry you were born like this and that religion group was wrong about the EVIL part.......now do you know if your mother drank when she was carrying you?   If not, you will want to ask someone in the family who is a reliable source.   I goofed in my post when I made the statement about your brother donating his kidney....I meant to say that it is bad it did NOT last and I forgot to put the word NOT, (my eyes are not fit for the puter but I am determined to stay on)......it is sad you had to miss sports since that is every boy's thing....now girls like me don't get into it but I can understand how a man would feel about missing all that....

How do you feel with your life now?  I am always ears......

[keefer51]

Tweetykiss, I was reading your threads about your husband and started to think that i might have started to rant about myself. I'm sorry. Everytime i read a thread that i see may have something to do with what i have i get excited and start to write a book. I just want to tell you how i envy you and the love you have for your husband. I have a new found respect for spouses who are caregivers to people on dialysis and kidney disease. As i have said before in other threads i understand why my wife left me. She couldn't stand the whole mess. As for how i am now i used to live in nashville and moved back to pennsylvania.I have been here for around 4 years. I live by myself and have no caregivers. i guess you can say i am content. The only possion i own is my truck. I rent the two rooms i live in. I lost everything i own due to having to go bankrupt. I have accepted the way i live now. I have no girlfriend or partner. I go to hemo three times a week four hours each. On my days off i like to fish or go to thrift stores. Dating is of course hard. I wouldn't want to put this on anyone. I hope you have the strength to carry on. If the going gets tough we are always just a click away.