all day. Didn't go anywhere or use any gas!! Amazing. Then at some point today my headache kicked in. Every other week it seems I get this headache that starts in the top left of my head and goes from there to my teeth. I have such a hard time trying to figure out what it is. I do this all the time because I don't want to have any of this pain, nausea or tiredness. So I try to figure out if it is just a headache? Is it my kidneys? Did I eat something that is backing up and making me sick? If its food then I can change it. If it is my kidneys then I need to worry. Or could it be I didn't drink as much caffeine today? Or should I stop the Vitamin E?
SOoooooo many things to think...aiaiaiaiaiaiaiai!!
love, stacie
Sunday, June 29, 2008
Well well...
I am here to share, learn and vent about my CKD.
I have 3 to be exact=
FSGS: Focal Segmental Glomerulosclerosis (FSGS) is a type of Glomerular Disease, one of many diseases that affect kidney function by attacking the glomeruli, the tiny units within the kidney where blood is cleaned. Glomerulosclerosis (gloh-MAIR-yoo-loh-skleh-ROH-sis) describes the scarring or hardening of the tiny blood vessels within the kidney.
The individual components of the name refer to the appearance of the kidney tissue on biopsy: focal - only some of the glomeruli are involved (as opposed to diffuse), segmental - only part of an entire glomerulus is involved (as opposed to global), glomerulosclerosis - refers to scarring of the glomerulus (a part of the nephron (the functional unit of the kidney))
NS: Nephrotic syndrome is a disorder of the glomeruli (clusters of microscopic blood vessels in the kidneys that have small pores through which blood is filtered) in which excessive amounts of protein are excreted in the urine. This typically leads to accumulation of fluid in the body (edema) and low levels of the protein albumin and high levels of fats in the blood.
MCD:
So, why did I arrive at this at the ripe age of 43?
NO one can tell me.
"Oh, it must be DNA..." - Had it done...not that.
"Were you into drugs?" - Not like a regular user or anything. Just recreational only.
"Well your definitely not black!" - Yep they actually said that.
"You have been tested for HIV?" - Yep came back negative.
SO...I went on my own search. Found my sister (long story) and asked her about a time when she was 3 and she had been in the hospital and had a catheter bag. She couldn't' remember.
Then one day out of the blue my mother emails me (another long story) and I tell her whats been happening and ask about my sister's hospital visit. She freaks out about all of it and finally tells me it was called "Renal Neruopathy."
Well, guess what gene carries that through the family? Yep right on to me. I may have had this all my life up until I have had so much stress and finally a Strep throat pushed me over the CKD edge. Then of course all the Ibuprofen I was taking like it was candy. Guess what body part Ibuprofen attacks?? Kidneys.
So, all of this wrapped up into a nice neat little package called - FSGS, NS and MCD.
Welcome to Stage 2 kidney disease and 2 years later I am in Stage 3 now.
I take 8 or more pills a day, I have constant edema, I heal in about 2 weeks, I take 2-3 days for a real bruise to show up (I dropped a pc tower on my shin and foot the other day and the bruise finally showed up 2 days later...pain was there but no bruise, then again sometimes a huge bruise shows up for no reason at all!!), no fevers most times due to the prednisone (well most of it is due to that), if I get sick I get it twice as bad as you due to my low immune system. I get sudden bouts of vomiting and nausea out of no where early in the mornings that could last for 3 days. Sometimes just fricking plain ole nausea all day and night. I have a standing order of Compazine just in case.
>>Heads up on the grammar --- I type as my brain puts out --- not as an English teacher would. So if you can't handle it don't read it.<< Neph Space may be re-posted here so if you see repeats, my apologies. I just am a repeating machine.
Much love to any of you who have a CKD and are not getting a lot of support.
I am here and I too am battling it alone. Lets hold virtual hands and hang on together.
love - stacie
I have 3 to be exact=
FSGS: Focal Segmental Glomerulosclerosis (FSGS) is a type of Glomerular Disease, one of many diseases that affect kidney function by attacking the glomeruli, the tiny units within the kidney where blood is cleaned. Glomerulosclerosis (gloh-MAIR-yoo-loh-skleh-ROH-sis) describes the scarring or hardening of the tiny blood vessels within the kidney.
The individual components of the name refer to the appearance of the kidney tissue on biopsy: focal - only some of the glomeruli are involved (as opposed to diffuse), segmental - only part of an entire glomerulus is involved (as opposed to global), glomerulosclerosis - refers to scarring of the glomerulus (a part of the nephron (the functional unit of the kidney))
NS: Nephrotic syndrome is a disorder of the glomeruli (clusters of microscopic blood vessels in the kidneys that have small pores through which blood is filtered) in which excessive amounts of protein are excreted in the urine. This typically leads to accumulation of fluid in the body (edema) and low levels of the protein albumin and high levels of fats in the blood.
MCD:
The symptoms are proteinuria (leakage of protein into the urine) and edema (water retention). Nephrotic syndrome (NS) is a general term that refers to the loss of protein in the urine. There are many conditions that are categorized as nephrotic syndromes; minimal change disease is unique because it is the only one lacking any evidence of pathology on light microscopy (hence the name). Whem viewed with the electron microscope it discloses diffuse loss of visceral epithelial foot processes.
When protein is lost in the urine, its blood concentration decreases, allowing water to move into other areas of the body, which leads to swelling known as edema. Edema is commonly observed in the feet and legs, in the belly or abdomen, and around the eyes, but can occur anywhere, especially in response to gravity. Additionally, because of this extra fluid that stays in the body, people often gain weight and experience fatigue; in many patients, for example, their usual clothes and shoes will no longer fit. Some people notice that their urine becomes more frothy, and may find that they urinate less often.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
So, why did I arrive at this at the ripe age of 43?
NO one can tell me.
"Oh, it must be DNA..." - Had it done...not that.
"Were you into drugs?" - Not like a regular user or anything. Just recreational only.
"Well your definitely not black!" - Yep they actually said that.
"You have been tested for HIV?" - Yep came back negative.
SO...I went on my own search. Found my sister (long story) and asked her about a time when she was 3 and she had been in the hospital and had a catheter bag. She couldn't' remember.
Then one day out of the blue my mother emails me (another long story) and I tell her whats been happening and ask about my sister's hospital visit. She freaks out about all of it and finally tells me it was called "Renal Neruopathy."
Well, guess what gene carries that through the family? Yep right on to me. I may have had this all my life up until I have had so much stress and finally a Strep throat pushed me over the CKD edge. Then of course all the Ibuprofen I was taking like it was candy. Guess what body part Ibuprofen attacks?? Kidneys.
So, all of this wrapped up into a nice neat little package called - FSGS, NS and MCD.
Welcome to Stage 2 kidney disease and 2 years later I am in Stage 3 now.
I take 8 or more pills a day, I have constant edema, I heal in about 2 weeks, I take 2-3 days for a real bruise to show up (I dropped a pc tower on my shin and foot the other day and the bruise finally showed up 2 days later...pain was there but no bruise, then again sometimes a huge bruise shows up for no reason at all!!), no fevers most times due to the prednisone (well most of it is due to that), if I get sick I get it twice as bad as you due to my low immune system. I get sudden bouts of vomiting and nausea out of no where early in the mornings that could last for 3 days. Sometimes just fricking plain ole nausea all day and night. I have a standing order of Compazine just in case.
>>Heads up on the grammar --- I type as my brain puts out --- not as an English teacher would. So if you can't handle it don't read it.<< Neph Space may be re-posted here so if you see repeats, my apologies. I just am a repeating machine.
Much love to any of you who have a CKD and are not getting a lot of support.
I am here and I too am battling it alone. Lets hold virtual hands and hang on together.
love - stacie
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