WebKittyn Warbles
Tuesday, May 26, 2009
Eight Month Updates
*blows the dust off this place*
I've got so much updating to do, I'm not going to cram it into one ginormous post. This one is for the ongoing kidney issues.
Last full blood test I took was in November. They did some in Feb. but not all of the tests. I know, I know. Not smart at all when you have end stage renal disease. I put it off because I didn't want bad news before Christmas. Then my dad died and I couldn't handle bad news if it was bad news so it got put off even more. It was always there in the back of my head but it's easier not to deal with things than stand up and say let's go. The possibility of hearing 'it's time, Heather. You're going on the transplant list' scares the shit out of me. So I put it off.
The puking has gotten considerably worse. It's not every day but it can be up to 12 times in one day on a prime day and unless I've turned bulimic and no one reminded me, that much barfing is just not kosher.
So I broke down and went to the first doctor, my general practitioner doctor. He did a bunch of blood tests and got on me for not exercising more and suggested I might have 'anger issues' as a result of everything I've gone through the past year.
I've been waiting all week for the results, leave it to me to go get blood done on a holiday week so it's not a 2 day turnaround. I finally broke down today and called after a particularly unpleasant puke session.
My diet of beef and 44 ounce slushes seems to be working. I'll be damned, it's working.
A year ago I was in the early stages of dialysis. September when they thought I was okay enough to take me off my creatinine was a 4.7 and my BUN a 46. Potassium was 5.5 and phosphorus 5.2. Higher than they should have been but good enough to get off dialysis.
Normal levels should be between 3.5 to 5.5 for phosphorus, creatinine should be around 1.3, BUN should be around 23 and potassium should be around 3.5 to 5.5.
When I went in February my BUN was a 41 and creatinine a 3.8 and they didn't check the other two.
As of today we got the following:
Creatinine: 2.73
Phosphorus: 4.1
Potassium: 5.0
BUN: 47
So the phosphorus and potassium are fine, the creatinine is OUTSTANDING. I have end stage renal disease. I have 20% kidney function. Yet somehow my creatinine DROPS A FULL POINT! This means my 20% kidneys are holding their own.
As for the BUN. It's high. It's lower than it was when I was taken off dialysis but it did go up 6 points since Feb. which concerns me. GI bleeds and other internal things can mess with BUN though and since the creatinine went down, I'm thinking it's something to do with the increased puking. But even though it was high, it was still low enough to keep me off dialysis as long as I'm willing to follow up with the next doctor.
I have to go to a gastroenterologist and find out what's up with the barfing. They think it's primary cause are the toxins my 20% kidneys aren't filtering into my pee. They have to come out somehow so I'm puking them out. Lovely. Hey, it's better than dialysis. Give me a barf bag over a filter machine any day. What they want to see is if any ulcers have developed or if there is damage from so much puking up toxins.
I've put this off because my mother (the Queen of Gloom and Doom) told me I'd have to get some test where they stick a tube down your throat to look at your stomach. No, no you will not. She couldn't explain how the tube goes down without my gagging over and over and choking myself or how it doesn't hurt like the end of the world so I haven't made the appointment yet.
I think it's time to face the fear and make the damn appointment.
Let's be real, I'm getting a real break here. My case still amazes the doctors, people just don't come back from ESRD. I push the limits enough with the diet I eat (but hey, it all comes back up at 7 in the morning anyway!) so let's not push it with the BUN. The low creatinine was enough for me to believe my kidneys are hanging in there so the BUN has to be stomach related. Maybe they can sedate me before they tube me, maybe they'll just want to check the puke first in the lab. Who knows, it's just time to do it.
So that's the news on that. Better than I hoped for albeit confusing. I'll leave it to the lawyer to determine if it really is ESRD or was it Kingston's stupidity that gave me chronic renal insufficiency instead, I have no clue. A true diagnosis would mean another kidney biopsy and I'm not in love with that idea. I'd do it if I needed it for court and they did it at Albany Medical Center but I've been cut open enough in the past 18 months. We'll see.
One step at a time. One small frustrating step at a time.
Today we celebrate lowered creatinine.
I've got so much updating to do, I'm not going to cram it into one ginormous post. This one is for the ongoing kidney issues.
Last full blood test I took was in November. They did some in Feb. but not all of the tests. I know, I know. Not smart at all when you have end stage renal disease. I put it off because I didn't want bad news before Christmas. Then my dad died and I couldn't handle bad news if it was bad news so it got put off even more. It was always there in the back of my head but it's easier not to deal with things than stand up and say let's go. The possibility of hearing 'it's time, Heather. You're going on the transplant list' scares the shit out of me. So I put it off.
The puking has gotten considerably worse. It's not every day but it can be up to 12 times in one day on a prime day and unless I've turned bulimic and no one reminded me, that much barfing is just not kosher.
So I broke down and went to the first doctor, my general practitioner doctor. He did a bunch of blood tests and got on me for not exercising more and suggested I might have 'anger issues' as a result of everything I've gone through the past year.
I've been waiting all week for the results, leave it to me to go get blood done on a holiday week so it's not a 2 day turnaround. I finally broke down today and called after a particularly unpleasant puke session.
My diet of beef and 44 ounce slushes seems to be working. I'll be damned, it's working.
A year ago I was in the early stages of dialysis. September when they thought I was okay enough to take me off my creatinine was a 4.7 and my BUN a 46. Potassium was 5.5 and phosphorus 5.2. Higher than they should have been but good enough to get off dialysis.
Normal levels should be between 3.5 to 5.5 for phosphorus, creatinine should be around 1.3, BUN should be around 23 and potassium should be around 3.5 to 5.5.
When I went in February my BUN was a 41 and creatinine a 3.8 and they didn't check the other two.
As of today we got the following:
Creatinine: 2.73
Phosphorus: 4.1
Potassium: 5.0
BUN: 47
So the phosphorus and potassium are fine, the creatinine is OUTSTANDING. I have end stage renal disease. I have 20% kidney function. Yet somehow my creatinine DROPS A FULL POINT! This means my 20% kidneys are holding their own.
As for the BUN. It's high. It's lower than it was when I was taken off dialysis but it did go up 6 points since Feb. which concerns me. GI bleeds and other internal things can mess with BUN though and since the creatinine went down, I'm thinking it's something to do with the increased puking. But even though it was high, it was still low enough to keep me off dialysis as long as I'm willing to follow up with the next doctor.
I have to go to a gastroenterologist and find out what's up with the barfing. They think it's primary cause are the toxins my 20% kidneys aren't filtering into my pee. They have to come out somehow so I'm puking them out. Lovely. Hey, it's better than dialysis. Give me a barf bag over a filter machine any day. What they want to see is if any ulcers have developed or if there is damage from so much puking up toxins.
I've put this off because my mother (the Queen of Gloom and Doom) told me I'd have to get some test where they stick a tube down your throat to look at your stomach. No, no you will not. She couldn't explain how the tube goes down without my gagging over and over and choking myself or how it doesn't hurt like the end of the world so I haven't made the appointment yet.
I think it's time to face the fear and make the damn appointment.
Let's be real, I'm getting a real break here. My case still amazes the doctors, people just don't come back from ESRD. I push the limits enough with the diet I eat (but hey, it all comes back up at 7 in the morning anyway!) so let's not push it with the BUN. The low creatinine was enough for me to believe my kidneys are hanging in there so the BUN has to be stomach related. Maybe they can sedate me before they tube me, maybe they'll just want to check the puke first in the lab. Who knows, it's just time to do it.
So that's the news on that. Better than I hoped for albeit confusing. I'll leave it to the lawyer to determine if it really is ESRD or was it Kingston's stupidity that gave me chronic renal insufficiency instead, I have no clue. A true diagnosis would mean another kidney biopsy and I'm not in love with that idea. I'd do it if I needed it for court and they did it at Albany Medical Center but I've been cut open enough in the past 18 months. We'll see.
One step at a time. One small frustrating step at a time.
Today we celebrate lowered creatinine.
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