Re: Re: Nephrologist apointment

[Guest guest]

I liked my kidney doctor. They set me up in the exam room but he came and got me and took me into his office to get to know me. I've never had a doctor do that before. He also asked if I was angry about the PF. No one has asked me how I feel before. He wasn't dismissing my kidney problem. He is treating me for it. He just thought that it wasn't bad enough yet ,as you said, be very high up on my worry list.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: Nephrologist apointmentTo: Breathe-Support Date: Friday, December 18, 2009, 7:04

AM

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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> >> > > From: Dyane Billings <dyanebillings@ ...>

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> >> > > ÃÆ'‚Â Dyane, 54, Phoenix, IIP 02 now NSIP

09, Breast

> >Cancer,

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> >> Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like

> >autoimmune

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> >> component, yadda yadda yadda.

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> >thoroughly

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> >> used up, totally worn out, chocolate in one hand, Margaritas in the

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> >> other, loudly proclaiming "Holy **** What a

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[Guest guest]

Beverley,

So what did you tell the doc who asked you if you were angry about having PF?

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Fri, December 18, 2009 6:40:35 PMSubject: Re: Re: Nephrologist apointment

I liked my kidney doctor. They set me up in the exam room but he came and got me and took me into his office to get to know me. I've never had a doctor do that before. He also asked if I was angry about the PF. No one has asked me how I feel before. He wasn't dismissing my kidney problem. He is treating me for it. He just thought that it wasn't bad enough yet ,as you said, be very high up on my worry list.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: Bruce <brucemoreland@ gmail.com>Subject: Re: Nephrologist apointmentTo: Breathe-Support@ yahoogroups. comDate: Friday, December 18, 2009, 7:04 AM

Actually thats sort of what my nephrologist and I do say ourselves. I doget my kidneys monitored regularly. I see the Nephrologist every fourmonths and have extensive labs through her plus my Rheumatologist runslabs on my kidneys another four times or so a year. However, the realityis that as things stand now, it would appear that my kidneys will longoutlast my lungs. Therefore, on the list of things to worry about, theyslide way down that list. If I was looking at living another 15 yearsthen it would be a different story although there still isn't really anygood solution to my kidneys.I am fortunate to have a great Nephrologist though who does sit and talkand does monitor them for any worsening. I did go to one in 1997 who didbasically say that until you get down to 10% it's not really a concernto us. I do think his approach was "not out job unless you need dialysisor a transplant."

I did not like his dismissive attitude. But with mycurrent Nephrologist the lack of worry is based on more communicationand isn't in a dismissive nature.My Rheumatologist, on the other hand, wants a kidney biopsy to try todetermine the cause. Primarily he's looking for Lupus in his desperatequest 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 ifit was going to benefit in other ways. Just not required as to thekidney disease. To this point, as my kidneys have been progressing veryslowly, I've chosen not to get the biopsy. The likelihood of benefitshasn't been shown to be worth the risks. While it is a relatively minorprocedure, still around 4% have complications and around 1% end up ondialysis after the biopsy.> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > From: Dyane Billings <dyanebillings@ ...>> >>> >> >> >>> >> > > Subject: Re:> >>> >> >> >>> >> > > To: Breathe-Support@ yahoogroups. com> >>> >>

>> >>> >> > > Date: Wednesday, December 16, 2009, 1:32 PM> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > ÃÆ'‚Â> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >>

>>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > if we all go to Seattle we can use my ex> >>> >> >> >>> >> > > ÃÆ'‚Â Dyane, 54, Phoenix, IIP 02 now NSIP09, Breast> >Cancer,> >>> >> Psoriasis, Lipodermatosclerosi s, Diabetes, and

now a RA like> >autoimmune> >>> >> component, yadda yadda yadda.> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > "Life is not a journey to the grave with intentions of arrivingis> >a> >>> >> 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]

No, I'm not angry. I know that that is a natural reaction but I haven't had it. It seems like a waste of energy. Being angry won't help. I'll just try to live as well as I can for as long as I can.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Bruce <brucemoreland@ gmail.com>Subject: Re: Nephrologist apointmentTo: Breathe-Support@ yahoogroups. comDate: Friday, December 18, 2009, 7:04 AM

Actually thats sort of what my nephrologist and I do say ourselves. I doget my kidneys monitored regularly. I see the Nephrologist every fourmonths and have extensive labs through her plus my Rheumatologist runslabs on my kidneys another four times or so a year. However, the realityis that as things stand now, it would appear that my kidneys will longoutlast my lungs. Therefore, on the list of things to worry about, theyslide way down that list. If I was looking at living another 15 yearsthen it would be a different story although there still isn't really anygood solution to my kidneys.I am fortunate to have a great Nephrologist though who does sit and talkand does monitor them for any worsening. I did go to one in 1997 who didbasically say that until you get down to 10% it's not really a concernto us. I do think his approach was "not out job unless you need dialysisor a transplant."

I did not like his dismissive attitude. But with mycurrent Nephrologist the lack of worry is based on more communicationand isn't in a dismissive nature.My Rheumatologist, on the other hand, wants a kidney biopsy to try todetermine the cause. Primarily he's looking for Lupus in his desperatequest 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 ifit was going to benefit in other ways. Just not required as to thekidney disease. To this point, as my kidneys have been progressing veryslowly, I've chosen not to get the biopsy. The likelihood of benefitshasn't been shown to be worth the risks. While it is a relatively minorprocedure, still around 4% have complications and around 1% end up ondialysis after the biopsy.> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > From: Dyane Billings <dyanebillings@ ...>> >>> >> >> >>> >> > > Subject: Re:> >>> >> >> >>> >> > > To: Breathe-Support@ yahoogroups. com> >>> >>

>> >>> >> > > Date: Wednesday, December 16, 2009, 1:32 PM> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > ÃÆ'‚Â> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >>

>>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > if we all go to Seattle we can use my ex> >>> >> >> >>> >> > > ÃÆ'‚Â Dyane, 54, Phoenix, IIP 02 now NSIP09, Breast> >Cancer,> >>> >> Psoriasis, Lipodermatosclerosi s, Diabetes, and

now a RA like> >autoimmune> >>> >> component, yadda yadda yadda.> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > "Life is not a journey to the grave with intentions of arrivingis> >a> >>> >> 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]

good answer!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Sat, December 19, 2009 12:52:30 PMSubject: Re: Re: Nephrologist apointment

No, I'm not angry. I know that that is a natural reaction but I haven't had it. It seems like a waste of energy. Being angry won't help. I'll just try to live as well as I can for as long as I can.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: Bruce <brucemoreland@ gmail.com>Subject: Re: Nephrologist apointmentTo: Breathe-Support@ yahoogroups. comDate: Friday, December 18, 2009, 7:04 AM

Actually thats sort of what my nephrologist and I do say ourselves. I doget my kidneys monitored regularly. I see the Nephrologist every fourmonths and have extensive labs through her plus my Rheumatologist runslabs on my kidneys another four times or so a year. However, the realityis that as things stand now, it would appear that my kidneys will longoutlast my lungs. Therefore, on the list of things to worry about, theyslide way down that list. If I was looking at living another 15 yearsthen it would be a different story although there still isn't really anygood solution to my kidneys.I am fortunate to have a great Nephrologist though who does sit and talkand does monitor them for any worsening. I did go to one in 1997 who didbasically say that until you get down to 10% it's not really a concernto us. I do think his approach was "not out job unless you need dialysisor a transplant."

I did not like his dismissive attitude. But with mycurrent Nephrologist the lack of worry is based on more communicationand isn't in a dismissive nature.My Rheumatologist, on the other hand, wants a kidney biopsy to try todetermine the cause. Primarily he's looking for Lupus in his desperatequest 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 ifit was going to benefit in other ways. Just not required as to thekidney disease. To this point, as my kidneys have been progressing veryslowly, I've chosen not to get the biopsy. The likelihood of benefitshasn't been shown to be worth the risks. While it is a relatively minorprocedure, still around 4% have complications and around 1% end up ondialysis after the biopsy.> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > From: Dyane Billings <dyanebillings@ ...>> >>> >> >> >>> >> > > Subject: Re:> >>> >> >> >>> >> > > To: Breathe-Support@ yahoogroups. com>

>>> >> >> >>> >> > > Date: Wednesday, December 16, 2009, 1:32 PM> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > ÃÆ'‚Â> >>> >> >> >>> >> > >> >>> >> >> >>>

>> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > if we all go to Seattle we can use my ex> >>> >> >> >>> >> > > ÃÆ'‚Â Dyane, 54, Phoenix, IIP 02 now NSIP09, Breast> >Cancer,> >>> >> Psoriasis,

Lipodermatosclerosi s, Diabetes, and now a RA like> >autoimmune> >>> >> component, yadda yadda yadda.> >>> >> >> >>> >> > >> >>> >> >> >>> >> > >> >>> >> >> >>> >> > > "Life is not a journey to the grave with intentions of arrivingis> >a> >>> >> 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!"."> >>> >> >> >>> >> > >>

>>> >> >> >>> >> >>