Re: [igan]Alports and nursing stuff

[Guest guest]

Hi , Thanks for the info on Alport's. Rather ironically, just before I

started reading messages this morning on site, I was just reading about Alports

in the new renal book I bought last night. Quite interesting. Boy oh boy, do I

have a lot more reading to do. I keep thinking that I'm gaining so much more

knowledge in renal disease, only to find out the more I read, the more I strive

to learn. (Does that make sense?). Yes, I do have my Masters in Nursing, and

yes it has definitely broaded as well as fine tuned specific areas of

concentration. I have a strong background in med/surg (1978 - 1992), then

" specialized " in cardiology especially patient education, and then " fine tuned "

to congestive heart failure, (ran a clinic with 2 other nurse practitioners for

very ill patients on the transplant list). While I was " fine tuning " my career

I went on for my MSN in chronic illness and education. Went back to Internal

Medicine for the past 8 years (so I didn't have to commute

so far when my kids were incredibly active in sports, but were not driving

yet). Now my daughter is married, in Germany, and has the most wonderful

husband you'd ever hope and dream for,and in addition they are expecting a

little one (Double Yeahhhhh!!!). So all this said, I was able to return to one

of the very best hospitals in Colorado. (There on the list for 100 best

hospitals for Cardiology in the US.) I now run a Senior Clinic, with a part

time MD. Great fun and lots of nephrology patients. (Usually due to

arterionephrosclerosis, but I also have 3 renal transplants, and several on

dialysis). Anyway the career advancement " for my brain " was exceptionally

good, however if your hoping to improve salary, not always necessarily so. The

RN's in nursing homes usually make more money than me, but that doesn't

discourage me. I'm much more into doing what I love, especially at this stage

of my career. I personally don't really care about money. (Certainly not that

we are

independently wealthy, as my husband is a phone man, but we make it) As far as

the online degree, for some folks it would probably work O.K. especially with

ill children etc. but for me I commuted to Greeley, (about 140 miles) once per

week to complete. I am very concrete, and needed a school which was not

abstract in nursing holostic nursing theory stuff. I just like the meat and

potatoes, no " super fluff " . So UNC (Univ. of Northern Colorado) was the place

for me. They are known for their great curriculum in teaching and are known as

" the friendly university " . I continued to work full time while I was

communiting to Greeley and commuted 40 miles to work, so it took me about 4

years to complete. Most schools you have a maximum of 5 years total to

complete. Anyway, I'm way to wordy this morning, but I hope you can tell, I

really love what I do, and would have not changed my career, ever, Nursing is it

for me! Feel free to Email me privately if you want about any non renal

stuff (nursing etc) Would be glad to share info. Thanks for your Email, it's

great to talk to another nurse! Bonnie

snooksmama@... wrote:Bonnie:

I hope you are feeling better today.

Thanks for your support. It is greatly appreciated.

Alports is a genetic disorder of Collagen Type IV. This particular

collagen appears in the glomerular basement membrane (GBM), the cochlea

of the ear, and the eye. So the disorder, depending on the severity,

affects renal function, hearing and sight. So far (knocking on wood)

Rob's hearing is perfect and though he is nearsighted, none of the

Alport's manifestations are evident in his eyes. So that is greatly

encouraging!

There are several different classifications. Rob's final pathology report

is still being reviewed (and you can tell me if 8/6 to 9/3 is an unusual

amount of time). We'll find out what classification he is once that final

report is in.

With Alports, usually with transplantation, the transplanted kidney is

not susceptible to problems as far as the Alports wouldn't affect the

transplanted kidney. So that too is good news.

If you want info on ankylosing spondylitis, I can share some info on that

is well...just let me know.

Thanks again! You guys are the best.

, mom to Rob

PS You are a nurse, right? Me too! Did I read somewhere you have your

masters? I am going to a meeting on Monday about starting on my masters.

I don't know if this is a good time to do it, but with this particular

institution you can do the majority of your course work online. So that

piqued my interest. What was your area of specialty for your masters? Did

getting it bring a lot more to your nursing career???

On Wed, 1 Sep 2004 18:31:03 -0700 (PDT) Bonnie Duran

writes:

Hi , I am also so sorry about Rob's diagnosis of Alport's. I do

hope you will stay " on site " here. You give us a lot of support as well.

Maybe you can teach all of us about Alport's and ankylosing spondylitis.

It's always interesting to read your posts. Bonnie

snooksmama@... wrote:Pierre:

Thanks. I had the same thought...and I will stick around. You guys are a

great group!

, mom to Rob

[Guest guest]

Bonnie:

Thanks so much for the info. What renal book did you buy? I might be

interested...

You have given me much food for thought re: the master's degree. Sounds

like your college would be the one for me, too...because I never did like

all that nursing theory, nursing dx stuff....ugggh!! My own background is

a smattering of experience...including peds, icu/ccu/open heart, home

health, and currently, I am an admissions liaison for acute inpatient

rehab, screening patients for suitability for rehab, extensive education

with patients and families, conferring with the rehab doctor, and then

the dreaded dealing with insurers to get precertification. I see

primarily joint replacement patients, cva's, brain injury, trauma,

debility, fractures...you get the idea. I do love my job, but our dear

Congress is considering changes that will drastically reduce the amount

of services we can offer and the population we can serve...so if that

comes to pass, my tenure of 6+ years there will be over, possibly. I have

felt pulled in different directions lately, would love to have a similar

situation such as yourself, but the university medical center near here

pays about 3/4 or less of what I make now. Plus, my schedule is somewhat

flexible as Rob has frequent doctors appts, and I am usually able to pick

him up from school every day so he can get home and settled, which helps

a lot on days he is having pain.

Rob's medical bills, after insurance, are still running us $300-400 a

month and that is about all the disposable income we have! Thank God the

insurer covers his meds with only $35 co-pays, the injectibles alone

total $72,000 a year if we had to pay for them! But I feel the need to

educate myself further not only for job security but to GROW as a nurse.

You are an inspiration!! I'm sure we'll be emailing more as I have more

questions for you!

Thanks again!

, mom to Rob

On Sat, 4 Sep 2004 07:23:32 -0700 (PDT) Bonnie Duran

writes:

Hi , Thanks for the info on Alport's. Rather ironically, just

before I started reading messages this morning on site, I was just

reading about Alports in the new renal book I bought last night. Quite

interesting. Boy oh boy, do I have a lot more reading to do. I keep

thinking that I'm gaining so much more knowledge in renal disease, only

to find out the more I read, the more I strive to learn. (Does that make

sense?). Yes, I do have my Masters in Nursing, and yes it has definitely

broaded as well as fine tuned specific areas of concentration. I have a

strong background in med/surg (1978 - 1992), then " specialized " in

cardiology especially patient education, and then " fine tuned " to

congestive heart failure, (ran a clinic with 2 other nurse practitioners

for very ill patients on the transplant list). While I was " fine tuning "

my career I went on for my MSN in chronic illness and education. Went

back to Internal Medicine for the past 8 years (so I didn't have to

commute

so far when my kids were incredibly active in sports, but were not

driving yet). Now my daughter is married, in Germany, and has the most

wonderful husband you'd ever hope and dream for,and in addition they are

expecting a little one (Double Yeahhhhh!!!). So all this said, I was

able to return to one of the very best hospitals in Colorado. (There on

the list for 100 best hospitals for Cardiology in the US.) I now run a

Senior Clinic, with a part time MD. Great fun and lots of nephrology

patients. (Usually due to arterionephrosclerosis, but I also have 3 renal

transplants, and several on dialysis). Anyway the career advancement

" for my brain " was exceptionally good, however if your hoping to improve

salary, not always necessarily so. The RN's in nursing homes usually

make more money than me, but that doesn't discourage me. I'm much more

into doing what I love, especially at this stage of my career. I

personally don't really care about money. (Certainly not that we are

independently wealthy, as my husband is a phone man, but we make it) As

far as the online degree, for some folks it would probably work O.K.

especially with ill children etc. but for me I commuted to Greeley,

(about 140 miles) once per week to complete. I am very concrete, and

needed a school which was not abstract in nursing holostic nursing theory

stuff. I just like the meat and potatoes, no " super fluff " . So UNC

(Univ. of Northern Colorado) was the place for me. They are known for

their great curriculum in teaching and are known as " the friendly

university " . I continued to work full time while I was communiting to

Greeley and commuted 40 miles to work, so it took me about 4 years to

complete. Most schools you have a maximum of 5 years total to complete.

Anyway, I'm way to wordy this morning, but I hope you can tell, I really

love what I do, and would have not changed my career, ever, Nursing is it

for me! Feel free to Email me privately if you want about any non renal

stuff (nursing etc) Would be glad to share info. Thanks for your Email,

it's great to talk to another nurse! Bonnie

snooksmama@... wrote:Bonnie:

I hope you are feeling better today.

Thanks for your support. It is greatly appreciated.

Alports is a genetic disorder of Collagen Type IV. This particular

collagen appears in the glomerular basement membrane (GBM), the cochlea

of the ear, and the eye. So the disorder, depending on the severity,

affects renal function, hearing and sight. So far (knocking on wood)

Rob's hearing is perfect and though he is nearsighted, none of the

Alport's manifestations are evident in his eyes. So that is greatly

encouraging!

There are several different classifications. Rob's final pathology report

is still being reviewed (and you can tell me if 8/6 to 9/3 is an unusual

amount of time). We'll find out what classification he is once that final

report is in.

With Alports, usually with transplantation, the transplanted kidney is

not susceptible to problems as far as the Alports wouldn't affect the

transplanted kidney. So that too is good news.

If you want info on ankylosing spondylitis, I can share some info on that

is well...just let me know.

Thanks again! You guys are the best.

, mom to Rob

PS You are a nurse, right? Me too! Did I read somewhere you have your

masters? I am going to a meeting on Monday about starting on my masters.

I don't know if this is a good time to do it, but with this particular

institution you can do the majority of your course work online. So that

piqued my interest. What was your area of specialty for your masters? Did

getting it bring a lot more to your nursing career???

On Wed, 1 Sep 2004 18:31:03 -0700 (PDT) Bonnie Duran

writes:

Hi , I am also so sorry about Rob's diagnosis of Alport's. I do

hope you will stay " on site " here. You give us a lot of support as well.

Maybe you can teach all of us about Alport's and ankylosing spondylitis.

It's always interesting to read your posts. Bonnie

snooksmama@... wrote:Pierre:

Thanks. I had the same thought...and I will stick around. You guys are a

great group!

, mom to Rob

[Guest guest]

Hi , Sorry it's taken so long for me to write back. Unfortunately I'm at

work again, so need to be brief here (certainly unlike my nature, hehehe) but

thought I'd mention, your career in nursing sounds really awesome. I do hope

Congress doesn't change the outcome of your job status, as it sounds as though

it is working quite well with Rob's appointments etc. When the time is right,

and when you find the right school for you, everything will work out. I was

hoping for a job last year with an Internal Medicine solo practice, (he's

actually my physician, which would be weird but he's awesome). The local

hospital was buying and tearing down property around the hospital to expand and

his office was a " hot spot " , so he wasn't able to hire me until he figured out

the logistics where he was going to move etc. To make a " brief " message longer,

I found my current job on line, and boy was it a blessing. I worked here about

8 years ago, and is an awesome hospital. One of the best

" benefits " is being able to have some freedom (and coverage) to go to Mayo.

With the other job, it would have been much more difficult. So I know exactly

what you mean, about working with personal physician appointments/schedules etc.

(although, luckily not from a mom's perspective). Everything will work out all

in good time. Did you find the neph book I was talking about O.K? It was

buried in one or two of my other messages. Let me know if you didn't and I'll

give you the reference. Take good care. Don't work to hard. yeah, right!?

Bonnie

snooksmama@... wrote:

Bonnie:

Thanks so much for the info. What renal book did you buy? I might be

interested...

You have given me much food for thought re: the master's degree. My own

background is

a smattering of experience...including peds, icu/ccu/open heart, home

health, and currently, I am an admissions liaison for acute inpatient

rehab, screening patients for suitability for rehab, extensive education

with patients and families, conferring with the rehab doctor, and then

the dreaded dealing with insurers to get precertification. I see

primarily joint replacement patients, cva's, brain injury, trauma,

debility, fractures...you get the idea. I do love my job, but our dear

Congress is considering changes that will drastically reduce the amount

of services we can offer and the population we can serve...so if that

comes to pass, my tenure of 6+ years there will be over, possibly.

snooksmama@... wrote:Bonnie:

I hope you are feeling better today.

Thanks for your support. It is greatly appreciated.

Alports is a genetic disorder of Collagen Type IV. This particular

collagen appears in the glomerular basement membrane (GBM), the cochlea

of the ear, and the eye. So the disorder, depending on the severity,

affects renal function, hearing and sight. So far (knocking on wood)

Rob's hearing is perfect and though he is nearsighted, none of the

Alport's manifestations are evident in his eyes. So that is greatly

encouraging!

There are several different classifications. Rob's final pathology report

is still being reviewed (and you can tell me if 8/6 to 9/3 is an unusual

amount of time). We'll find out what classification he is once that final

report is in.

With Alports, usually with transplantation, the transplanted kidney is

not susceptible to problems as far as the Alports wouldn't affect the

transplanted kidney. So that too is good news.

If you want info on ankylosing spondylitis, I can share some info on that

is well...just let me know.

Thanks again! You guys are the best.

, mom to Rob

PS You are a nurse, right? Me too! Did I read somewhere you have your

masters? I am going to a meeting on Monday about starting on my masters.

I don't know if this is a good time to do it, but with this particular

institution you can do the majority of your course work online. So that

piqued my interest. What was your area of specialty for your masters? Did

getting it bring a lot more to your nursing career???

On Wed, 1 Sep 2004 18:31:03 -0700 (PDT) Bonnie Duran

writes:

Hi , I am also so sorry about Rob's diagnosis of Alport's. I do

hope you will stay " on site " here. You give us a lot of support as well.

Maybe you can teach all of us about Alport's and ankylosing spondylitis.

It's always interesting to read your posts. Bonnie

snooksmama@... wrote:Pierre:

Thanks. I had the same thought...and I will stick around. You guys are a

great group!

, mom to Rob

[Guest guest]

Thanks Bonnie. You are a such a caring person, as I have found this

entire list to be!

No, I didn't see the posting about the title of the book. I knew there

was something I wanted to look up on Amazon! My brain is not too reliable

these days...overload.

State is coming the next 3 days and we have been preparing for our

survey.

Yes, I do have an awesome job. Just a great combo of using my brain to

determine fitness for rehab and medical stability, along with great

opportunities to sit down with families and answer questions and ease

their fears. Just last week I had about a 40 minute session with a new

quadriplegic and her family that was probably one of the hardest things I

have ever had to do...teaching her what to expect in rehab while she sat

with the tears rolling down her face. But she is in our facility and

doing well. That is the best part of my job...I get to see them learn to

live life again...as well as they can. She'll go home to a revamped

apartment in a few weeks.

Whoops, off my soapbox now. I forgot you were going to Mayo. If you get a

chance, can you check if they are doing any studies on Alport syndrome?

It seems like I heard or read somewhere that they were.

We are still waiting for the final path reports from Rob's biopsy. I am

not sure which ones, but this should give us information on the

classification of his Alports and some direction as far as renal

prognosis. I want to know, yet I don't want to know.

He is coughing a bit today, which could occur as the result of the

Cozaar. He is only on 50 mg right now. He has a history of asthma, so of

course I am worried that the Cozaar may cause problems in that direction.

Hopefully, he will tolerate it ok and can stay on it and it will help the

proteinuria.

Sorry for this long email!

I enjoy all your posts and thank you so much for reaching out to others

in what has to be very trying times. You guys are simply amazing!

, mom to Rob

On Tue, 7 Sep 2004 19:31:16 -0700 (PDT) Bonnie Duran

writes:

Hi , Sorry it's taken so long for me to write back. Unfortunately

I'm at work again, so need to be brief here (certainly unlike my nature,

hehehe) but thought I'd mention, your career in nursing sounds really

awesome. I do hope Congress doesn't change the outcome of your job

status, as it sounds as though it is working quite well with Rob's

appointments etc. When the time is right, and when you find the right

school for you, everything will work out. I was hoping for a job last

year with an Internal Medicine solo practice, (he's actually my

physician, which would be weird but he's awesome). The local hospital

was buying and tearing down property around the hospital to expand and

his office was a " hot spot " , so he wasn't able to hire me until he

figured out the logistics where he was going to move etc. To make a

" brief " message longer, I found my current job on line, and boy was it a

blessing. I worked here about 8 years ago, and is an awesome hospital.

One of the best

" benefits " is being able to have some freedom (and coverage) to go to

Mayo. With the other job, it would have been much more difficult. So I

know exactly what you mean, about working with personal physician

appointments/schedules etc. (although, luckily not from a mom's

perspective). Everything will work out all in good time. Did you find

the neph book I was talking about O.K? It was buried in one or two of my

other messages. Let me know if you didn't and I'll give you the

reference. Take good care. Don't work to hard. yeah, right!? Bonnie

snooksmama@... wrote:

Bonnie:

Thanks so much for the info. What renal book did you buy? I might be

interested...

You have given me much food for thought re: the master's degree. My own

background is

a smattering of experience...including peds, icu/ccu/open heart, home

health, and currently, I am an admissions liaison for acute inpatient

rehab, screening patients for suitability for rehab, extensive education

with patients and families, conferring with the rehab doctor, and then

the dreaded dealing with insurers to get precertification. I see

primarily joint replacement patients, cva's, brain injury, trauma,

debility, fractures...you get the idea. I do love my job, but our dear

Congress is considering changes that will drastically reduce the amount

of services we can offer and the population we can serve...so if that

comes to pass, my tenure of 6+ years there will be over, possibly.

snooksmama@... wrote:Bonnie:

I hope you are feeling better today.

Thanks for your support. It is greatly appreciated.

Alports is a genetic disorder of Collagen Type IV. This particular

collagen appears in the glomerular basement membrane (GBM), the cochlea

of the ear, and the eye. So the disorder, depending on the severity,

affects renal function, hearing and sight. So far (knocking on wood)

Rob's hearing is perfect and though he is nearsighted, none of the

Alport's manifestations are evident in his eyes. So that is greatly

encouraging!

There are several different classifications. Rob's final pathology report

is still being reviewed (and you can tell me if 8/6 to 9/3 is an unusual

amount of time). We'll find out what classification he is once that final

report is in.

With Alports, usually with transplantation, the transplanted kidney is

not susceptible to problems as far as the Alports wouldn't affect the

transplanted kidney. So that too is good news.

If you want info on ankylosing spondylitis, I can share some info on that

is well...just let me know.

Thanks again! You guys are the best.

, mom to Rob

PS You are a nurse, right? Me too! Did I read somewhere you have your

masters? I am going to a meeting on Monday about starting on my masters.

I don't know if this is a good time to do it, but with this particular

institution you can do the majority of your course work online. So that

piqued my interest. What was your area of specialty for your masters? Did

getting it bring a lot more to your nursing career???

On Wed, 1 Sep 2004 18:31:03 -0700 (PDT) Bonnie Duran

writes:

Hi , I am also so sorry about Rob's diagnosis of Alport's. I do

hope you will stay " on site " here. You give us a lot of support as well.

Maybe you can teach all of us about Alport's and ankylosing spondylitis.

It's always interesting to read your posts. Bonnie

snooksmama@... wrote:Pierre:

Thanks. I had the same thought...and I will stick around. You guys are a

great group!

, mom to Rob