Re: Nephrologist apointment

[Guest guest]

Beverley,

Creatinine is something that is created in your muscles. It is considered a "waste product" and is carried off by your bloodstream to your kidneys where it is filtered and excreted in the urine. If the kidneys are not functioning normally and creatinine isn't being filtered efficiently the creatinine will stay in the blood and the creatinine level will rise.

If the 108 is what I think it is (actually your estimated GFR, glomerular filtration rate, based on your serum creatinine level) then your creatinine is moderately elevated.

Since the nephrologist told you to not worry about your kidneys and take care of your lungs I would do just that. Don't worry about it a whole lot. Hopefully the new medication will help to control the kidney issues.

Try not to worry...I know easier said than done. Just look after yourself.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, December 17, 2009 9:00:49 PMSubject: Nephrologist apointment

I saw my new ologist today. My kidneys are old and leaky. My kidneys are working at 20 to 30% from normal. He did say normal for a 30 year old. He said I wouldn't need dialysis unless it got down to 10%. He said My creatinin (sp) was 108. Beth, can you help me with that one. He asked me to tell them at UWMC. I asked him to send it to Dr. Raghu because I wouldn't remember. I'm already not sure what it was and what the 108 meant. He said I should worry about taking care of my lungs instead of my kidneys because the lungs are worse. He is giving me another blood pressure pill to try to control the protein.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: DyaneB <dyanebillings@ yahoo.com>Subject: Re: DyaneTo: Breathe-Support@ yahoogroups. comDate: Thursday, December 17, 2009, 11:14 AM

Hope your "ologist" appt goes great today.Dyane Phoenix>> >>> > >>> >>> > > From: Dyane Billings <dyanebillings@ ...>>> >>> > > Subject: Re:>> >>> > > To: Breathe-Support@ yahoogroups. com>> >>> > > Date: Wednesday, December 16, 2009, 1:32 PM>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > > ÂÂ>> >>> > >>> >>> > >>>

>>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > > if we all go to Seattle we can use my ex>> >>> > >  Dyane, 54, Phoenix, IIP 02 now NSIP 09, BreastCancer,>> Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA likeautoimmune>> component, yadda yadda yadda.>> >>> > >>> >>> > >>> >>> > > "Life is not a journey to the grave with intentions of arriving isa>> pretty, well-preserved body, but rather to skid in

broadside,thoroughly>> used up, totally worn out, chocolate in one hand, Margaritas in the>> other, loudly proclaiming "Holy **** What a>> >>> > > ride!".">> >>> > >>> >>

[Guest guest]

Beth, Thank you. I will print this out in case I need to remember it. I'm not really worried. I don't know why but I don't feel much of anything about any of it.Dr. Joshi asked me today if I was angry. He's the first one who asked me anything about how I feel. I'm happy to say that I liked him. Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: DyaneB <dyanebillings@ yahoo.com>Subject: Re: DyaneTo: Breathe-Support@ yahoogroups. comDate: Thursday, December 17, 2009, 11:14 AM

Hope your "ologist" appt goes great today.Dyane Phoenix>> >>> > >>> >>> > > From: Dyane Billings <dyanebillings@ ...>>> >>> > > Subject: Re:>> >>> > > To: Breathe-Support@ yahoogroups. com>> >>> > > Date: Wednesday, December 16, 2009, 1:32 PM>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > > ÂÂ>> >>> > >>> >>> > >>>

>>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > > if we all go to Seattle we can use my ex>> >>> > >  Dyane, 54, Phoenix, IIP 02 now NSIP 09, BreastCancer,>> Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA likeautoimmune>> component, yadda yadda yadda.>> >>> > >>> >>> > >>> >>> > > "Life is not a journey to the grave with intentions of arriving isa>> pretty, well-preserved body, but rather to skid in

broadside,thoroughly>> used up, totally worn out, chocolate in one hand, Margaritas in the>> other, loudly proclaiming "Holy **** What a>> >>> > > ride!".">> >>> > >>> >>

[Guest guest]

Boy, sometimes doctors say the stupidist things to us....

"He said I should worry about taking care of my lungs instead of my kidneys because the lungs are worse."

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

From: Beverley Joy <sparrow_98367@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, December 17, 2009 9:00:49 PMSubject: Nephrologist apointment

I saw my new ologist today. My kidneys are old and leaky. My kidneys are working at 20 to 30% from normal. He did say normal for a 30 year old. He said I wouldn't need dialysis unless it got down to 10%. He said My creatinin (sp) was 108. Beth, can you help me with that one. He asked me to tell them at UWMC. I asked him to send it to Dr. Raghu because I wouldn't remember. I'm already not sure what it was and what the 108 meant. He said I should worry about taking care of my lungs instead of my kidneys because the lungs are worse. He is giving me another blood pressure pill to try to control the protein.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: DyaneB <dyanebillings@ yahoo.com>Subject: Re: DyaneTo: Breathe-Support@ yahoogroups. comDate: Thursday, December 17, 2009, 11:14 AM

Hope your "ologist" appt goes great today.Dyane Phoenix>> >>> > >>> >>> > > From: Dyane Billings <dyanebillings@ ...>>> >>> > > Subject: Re:>> >>> > > To: Breathe-Support@ yahoogroups. com>> >>> > > Date: Wednesday, December 16, 2009, 1:32 PM>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > > ÂÂ>> >>> > >>> >>> > >>>

>>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > > if we all go to Seattle we can use my ex>> >>> > >  Dyane, 54, Phoenix, IIP 02 now NSIP 09, BreastCancer,>> Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA likeautoimmune>> component, yadda yadda yadda.>> >>> > >>> >>> > >>> >>> > > "Life is not a journey to the grave with intentions of arriving isa>> pretty, well-preserved body, but rather to skid in

broadside,thoroughly>> used up, totally worn out, chocolate in one hand, Margaritas in the>> other, loudly proclaiming "Holy **** What a>> >>> > > ride!".">> >>> > >>> >>

[Guest guest]

I think he just meant that my kidneys weren't bad enough to worry about yet. I don't always get things across the way I should.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: DyaneB <dyanebillings@ yahoo.com>Subject: Re: DyaneTo: Breathe-Support@ yahoogroups. comDate: Thursday, December 17, 2009, 11:14 AM

Hope your "ologist" appt goes great today.Dyane Phoenix>> >>> > >>> >>> > > From: Dyane Billings <dyanebillings@ ...>>> >>> > > Subject: Re:>> >>> > > To: Breathe-Support@ yahoogroups. com>> >>> > > Date: Wednesday, December 16, 2009, 1:32 PM>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > > ÂÂ>> >>> > >>> >>> > >>>

>>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > >>> >>> > > if we all go to Seattle we can use my ex>> >>> > >  Dyane, 54, Phoenix, IIP 02 now NSIP 09, BreastCancer,>> Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA likeautoimmune>> component, yadda yadda yadda.>> >>> > >>> >>> > >>> >>> > > "Life is not a journey to the grave with intentions of arriving isa>> pretty, well-preserved body, but rather to skid in

broadside,thoroughly>> used up, totally worn out, chocolate in one hand, Margaritas in the>> other, loudly proclaiming "Holy **** What a>> >>> > > ride!".">> >>> > >>> >>

[Guest guest]

Actually thats sort of what my nephrologist and I do say ourselves. I do

get my kidneys monitored regularly. I see the Nephrologist every four

months and have extensive labs through her plus my Rheumatologist runs

labs on my kidneys another four times or so a year. However, the reality

is that as things stand now, it would appear that my kidneys will long

outlast my lungs. Therefore, on the list of things to worry about, they

slide way down that list. If I was looking at living another 15 years

then it would be a different story although there still isn't really any

good solution to my kidneys.

I am fortunate to have a great Nephrologist though who does sit and talk

and does monitor them for any worsening. I did go to one in 1997 who did

basically say that until you get down to 10% it's not really a concern

to us. I do think his approach was " not out job unless you need dialysis

or a transplant. " I did not like his dismissive attitude. But with my

current Nephrologist the lack of worry is based on more communication

and isn't in a dismissive nature.

My Rheumatologist, on the other hand, wants a kidney biopsy to try to

determine the cause. Primarily he's looking for Lupus in his desperate

quest to find something in his field that he can treat. My Nephrologist,

from her field, has no reason to do a biopsy but would be ok with one if

it was going to benefit in other ways. Just not required as to the

kidney disease. To this point, as my kidneys have been progressing very

slowly, I've chosen not to get the biopsy. The likelihood of benefits

hasn't been shown to be worth the risks. While it is a relatively minor

procedure, still around 4% have complications and around 1% end up on

dialysis after the biopsy.

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