Ive Just Been Dx'd With Alports Syndrome Posted: 05-20-05 20:24pm
Im a 42 white female.....With a previous
diagnosis of iga nephropathy.......7 yrs
ago , while pregnant,,levels returned to
norm after baby,,i was young,,dumb,,indiff
..Lol........So on I went.
Left pain in kidney,,,feels like lil guy
stabbing me with a
knife........Contraction in that same
kidney,,frontol and back flank pain.
Protein is outta sight at 457, ha
present........With high cholesterol.
I saw a new doc yesterday that noticed my
hearing loss, ive had 2 hearing aids since
age 26,,guess what? All of the above and
nephropathy with hearing loss is known as
alports syndrome. So that sure did answer
alot of questions,,it took my hearing
too!
Now,,,,what im not understanding,,,,,,,is
the pain? I do understand flank
pain,,,and frontal pain from inflammed
kidneys pressing into the abdomen, but why
does left kidney contract??????????????
Also unlike most,,my blood pressure is too
low,,,,,,,,he says decrease liquid
intake,,i doubted him, looked it up and
sure enuff! Too much salt and liquid
overwork the kidneys!.......But why is my
sodium showing so low? He wants to give
me an ace inhibitor,,not for blood
pressure but guarding of kidneys. The
prob is my pressure is too
low.........Anyone else ever heard of
this?
Thanks!
Kim
|
DougL
New User, Becoming EHEALTHy
Joined: 08 Nov 2004 Posts: 4 Location: South Dakota - USA
I'm With Ya Posted: 06-02-05 23:48pm
You have neuropathy, hearing loss, and
alports. Young lady we are in the same
boat, I have been without usage since 8/87
was transplanted in 1988 and now back to
original equipment and dialysis since
1998.
You've had major warnings that you had
alports long ago and we need to make those
signs known early so the people can quit
abusing their bodies early enough to
reduce the alport failure rate.
I'm currently writing a book and anyone
who has a story, symptom, new ideas for
dialysis comfort, Dr. Stories without
names please, Dr. Cense will be his name
anyway, how about your ideas and thoughts
about your future?
I'm also using the doctor/nurse and
patient/customer relationships, duties,
attitudes, job enjoyment, how about
customer relations if any, and if not
why.
Here are a couple questions
do you or have you ever considered
yourself a customer?
Do you or have you ever disagreed with the
dr or nurse and actually changed
treatments? If so explain briefly please
how do you cover your hemo dialysis sites
when the needles are removed? Clamps, tie
straps, gauze pad and colored horse leg
coban.
Yes we fold two 4x4 pads in 1/4's and
cover the sites, then wrap our arms fairly
tightly with the leg wrap which is
adhesive elastic bandage. It saves and
average of 15 minutes depending on how
much you bleed. If the nurse doesn't want
to try it, you can ask the Dr. Or just do
it like I did with a different nurse or a
tech because you can't do it by
yourself(the biggest issue in the medical
world is independence
anyway, whew sorry didn't mean to make
this so long but I want to gain some
info.
Thanks so much, hang in their, get on that
list!!
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KimmyK
New User, Becoming EHEALTHy
Joined: 20 May 2005 Posts: 36 Location: Kentucky
Reply to Doug Posted: 06-08-05 21:55pm
I've tried several attempts to reply and
am not sure that any were successful.
Why did your first transplant fail? Do
you have alport's? Im 42, what time frame
am I looking at (guess wise) before
dialysis begins.
Did you have low blood pressure? If
not,,any guesses why I do?
Any hints or helps for me to be doing now
to help myself physically.
I'll try and help you and I hope you'll do
the same, right now im trying to see if
this reply goes through.
Kimmy k........
P.S. Im also going to write a book,,from
a woman's perspective. My son had a
genetic translocation when born. At the
time they did not know what it would
effect..Some mention of kidney
possiblilities.
I now know to have him tested......And I
want to help other females who have
children . So that we might not only
deal with our disease, but possibly,
unfortunately, what we've passed on.
Thanks,
kimmyk
|
robbberger
New User, Becoming EHEALTHy
Joined: 08 Jun 2005 Posts: 1 Location: nevada
Alports Syndrome Posted: 06-08-05 22:34pm
Im a 37 year old male with alports
syndrome, with a history of a renal
abcess, neuropathy, and hearing loss. It
runs on my fathers side of the family,
pretty rampant. I am currently taking
meds to control high blood pressure, also
take a water pill, have a low hemotacrit
level so I get aranesp injections.
Was curious if anyone has more information
on this disease, though I feel I know a
little about it...There doesnt seem to be
much information available.
Also have unexplained thorasic back
pain??? Anyone else with this??
Never realised neuropathy was part of
alports ...Was always told it was caused
by a toxic load of an antibiotic.
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KimmyK
New User, Becoming EHEALTHy
Joined: 20 May 2005 Posts: 36 Location: Kentucky
Yes ,,back Pain Is Part of It Posted: 06-09-05 07:20am
There is not an awful lot of info on
alports....However, I do know that in your
case it is hereditary, which you know by
now. Its a genetic disease.......X
chromosone linked.
It usually runs its course in males by the
age of 40-45.....Resulting in dialylsis
and/or transplant. There has been
success with transplant and it will cure
alport's for the kidney. Of course you'd
never get your hearing back..Etc.
The back pain,,,,,,,i have both flank (rib
cage) and lower back pain, all I know is
it does come from this. From what ive
been told its really pain that is
radiating from inflammed kidneys.
I still cant find anyone with low blood
pressure, thats the key link that is not
making sense in my dx. Altho im
definitely deaf...Etc......And kidneys
have the blood ,prtotein,,,,,almost all
the kidney diseases make your bp go up,
such as yours has...But not mine!
I search the web to find out material
about alports. If you find it scare, you
can prolly get a better idea of just
looking up neuraphathy first........Then
adding what you know about alports. A
disease that your born with , that is
incurable, progressive...Causing kidney
damage as it goes.
Im so sorry that you have to go thru this,
and im so frustrated that I cant find
anyone with low bp.
You have alports, you need to understand
that it can/will affect your
cardiovascular system.......And if you
dont cut ur phosphorous the calcium in
your body will basically not go to your
bones, where needed...So you need a
calcium supp. Im not sure how much you
know?
Also the disease can cause fatty
deposits,,cysts in the liver,,,,joints,
muscles.And you may experience so spinal
fractures...Example (neck)
hope this helps..This is all what can
happen,,everyone is diff. Have you asked
what your prognosis is?
Kimmyk
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Carmel Swadling
New User, Becoming EHEALTHy
Joined: 04 Jan 2006 Posts: 3 Location: Australia
I Have Alports So Do My Two Children Posted: 01-05-06 00:26am
I am a 43 yr old lady who was diagnosed
with "kidney disease" as a young child. I
had my daughter when I was 20 yrs old and
was told at the time she would not inherit
my disease. She was diagnosed at 18
months old. I then had my son at 29 yrs
of age who was also diagnosed at 18 months
old. Although I always believed my son
had a hearing problem it was not confirmed
until he was six. Then we were all tested
and confirmed to have alports. Presently,
my function is 26%, my daughter who is now
23 has 80% and i'm no too sure about my
son who is now 14. On his last visit to
the renal specialist I was told his
function was still fine but his blood
pressure had increased leading to an
increase in his medication.
I'm really keen to hold off on the
dialysis and as the disease is far more
aggressive in boys and my daughter's
function is far lower than mine was at her
age (and she has not had a child yet), I
am very worried for all of us. My
specialist is very pro-active. He has me
taking various medications and vitamins
but i'm really keen to talk to anybody who
knows much about diet?? Low salt, low
protein, low sugar - but I need more. I'm
thinking about the raw food diet?? Any
comments.
As for the low blood pressure, mine was
always reasonable (90/60) for many years.
During the past five years it sky rocketed
causing me to lose function. It is now
well controlled at around 90/70.
:(
first let me say im so sorry. I do know
the fear. I however, have recieved my
biopsy results and even the doctor was
amazed,,no alport's. I wish it were that
simple though. I have every symptom for
alport's and the biopsy showed a "lesion"
that is currently resolving itself. Also
the membranes of the kidneys have been
thinned and that is what has caused the
protein spillage.
I was then sent to a urologist. I didnt
know I had a bladder problem but a simple
ultrasound showed I was retaining urine.
So off to urodynamics where I discovered
the nerves in my bladder were dead?? This
must be why my kidneys were very
impaired,,,,,i thought they simply werent
producing the urine. Off to a neurologist
and now they say ms.
Carmel,,,,,,,,i dont know your faith or
ideas, however, since I had studied much
on iga nephropathy due to first dx, then
they pretty much told me "alports" I
studied that also. Im now into ms things
but let me tell you I still have all of
your symptoms and id love to continue to
try and help you , as I am an "infoholic"
and I believe god causes us to know things
at certain times to help others.
Alport's is very scary. Women aren't
known to have it as often, however the age
of 45 is a very big "tilt" age for this
disease. Your own kidney function
concerns me and i've been where you are as
far as worrying about renal shutdown. I
am worried though becuz you have to
remember that even though we do not want
dyalysis (who would?).....That we have to
first accept it to get a transplant. If
we wait until we are too old, or have
other health issues (like me) theres not
much chance we will get the transplant.
Also, did you know that if you have a
"live" willing donor you can skip dyalysis
and get the transplant???????
Medicine has came a long way, but is still
so short in helping us. I had very low
blood pressure,,,,,,,sometimes 80/60, they
were concerned tht that they'd not be able
to give me an ace inhibitor to "guard" my
kidneys. Thankfully (i think)....My bp
rose after yrs of dropping. Now I am on
linosopril. It seems to be getting
higher..........
Ive looked into the lemonade cleanse,,and
roger macdougall's hunter/gatherer diet.
Keep in mind carmel that even if I have ms
and you have alport's that we have much in
common. B-12 is such a big thing with all
of these autoimmune diseases. Please
consider adding it and fish oil (omega 3)
to your diet. I never believed in omega 3
however, they have proven , as in iga
nephropathy that it can stave off
progression as much as 2 yrs.
Oh boy do I know the low sodium routine!
I swell if I get hardly any
salt!!!!!!!!!!..................Im working
on devising a diet that doesnt go as
extreme as roger macdougalls, and that
provides much needed nutrition. Its a
personal diet , but as I curtail or
change,or find new recipes ill share with
you, if your interested.
Right now, this would be an example of my
daily intake.
Breakfast
1 cup coffee(bad)
1tangelo
lunch
egg salad with onion and celery
(carmel it is important to add protien.
Low protein diets for renal patients
always say that the protein that is
allowed must be consumed by the patient,
so as to avoid muscle wasting.....This is
why I add this protein.
Snack/tangelo, or carrot sticks, and fruit
juice (nutrition reasons)
water (limited but needed)
dinner
flounder drug through lemon juice (not
salted) and seasoned with no sodium creole
seasoning.
Rice (green onions or something nutritious
for flavor)
green beans.
I hope that youd like to contine to post
with me, as I will discover more about all
of these conditions. Unfortunately im not
done with the kidney issue and its really
a wait and see type of thing, given the
possibility of ms. I have to cath every
two hours.
I am thinking of your children and I also
have a child.......Not tested but he had a
chromosone swap while in my womb. I will
need to make certain he is checked , I
have suspected some hearing loss.
Worry about you so that you can be around
to help your daughter!!!!!!!!!
I will update you with any promising
things I find as I explore
alports/ms/renal diseases in general.
Ive been where you are and its scary, my
heart indeed does go out to you. And my
prayers.
Remember: im here!
Love,
|
Carmel Swadling
New User, Becoming EHEALTHy
Joined: 04 Jan 2006 Posts: 3 Location: Australia
Kimmyk Thank You For Your Reply And Understanding Posted: 03-12-06 02:49am
Hi there
i'm sorry I have taken so long to reply I
have only just checked this site. I was
glad to hear you do not have alports but
sorry to hear you are still not well.
You are right I need to focus on myself as
well, I need to be here for my children.
I recently saw a world-wide respected
chinese medicine doctor who told me I was
a very strong person who would live for a
very long time - he has given me hope!
My family and I are trying to eat really,
really well. I have known people with
other conditions (eg cancer) to do
amazingly well on the raw food diet and
while this is difficult to follow
especially for teenagers - we are all
making an effort to move in that
direction.
I agree that just when you need
something/information/someone it quite
often happens. I was brought up roman
catholic but have drifted away from the
chuch over the years. However, it seems
every new friend I make lately is very
committed to god! I think i'm being
guided back in that direction.
My renal specialist is very proactive -
i'm taking 4000 mg fish oil, b12, folate
and caltrate along with several
prescription drugs.
My daughter has been seeing my specialist
for a few years now and my son is going to
start seeing him next month. I'm very
happy about this as I have a lot of faith
in him.
Regardless of what is wrong with you it
might be worth trying the raw food diet or
at least tying to include more raw food.
(i'm feeling inspired now and i'm off to
make a carrott and beetroot juice for the
family - not my favourite drink but it
certainly gives you a boost).
Thank you so much for your reply, I will
keep in contact and will also pray for
you.
Take care
carmel
|
decorator
New User, Becoming EHEALTHy
Joined: 29 Nov 2006 Posts: 1 Location: auckland new zealand
Re: Ive Just Been Dx'd With Alports Syndrome Posted: 11-29-06 21:02pm
kimmyk
wrote:
im a 42 white
female.....With a previous diagnosis of
iga nephropathy.......7 yrs ago , while
pregnant,,levels returned to norm after
baby,,i was young,,dumb,,indiff
..Lol........So on I went.
Left pain in kidney,,,feels like lil guy
stabbing me with a
knife........Contraction in that same
kidney,,frontol and back flank pain.
Protein is outta sight at 457, ha
present........With high cholesterol.
I saw a new doc yesterday that noticed my
hearing loss, ive had 2 hearing aids since
age 26,,guess what? All of the above and
nephropathy with hearing loss is known as
alports syndrome. So that sure did
answer alot of questions,,it took my
hearing too!
Now,,,,what im not understanding,,,,,,,is
the pain? I do understand flank
pain,,,and frontal pain from inflammed
kidneys pressing into the abdomen, but why
does left kidney contract??????????????
Also unlike most,,my blood pressure is too
low,,,,,,,,he says decrease liquid
intake,,i doubted him, looked it up and
sure enuff! Too much salt and liquid
overwork the kidneys!.......But why is my
sodium showing so low? He wants to give
me an ace inhibitor,,not for blood
pressure but guarding of kidneys. The
prob is my pressure is too
low.........Anyone else ever heard of
this?
Thanks!
Kim
hi kim
my name is lisa im also a carrier of
alports, when I was pregnant with both my
boys my blood and protein in my urine went
through the roof and blood pressure
rose.... Now that im not pregnant my
blood presure is on the slightly low side,
I also have hearing loss but only
slightly.. That stabbing in the back you
refer to is some thing that I have had
since having my second child.
You talked about an inhibitor, this is a
medication that they want to put my son on
who is only 20 months, I going to do some
looking into it, yes is does lower blood
pressure so what is it going to do to you
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kind_heart
New User, Becoming EHEALTHy
Joined: 10 Jul 2007 Posts: 1
Mercury And Omega-3 Posted: 07-10-07 17:04pm
I have heard that mercury in omega-3 fish
oil tablets can make chronic conditions
worse. So make sure you take a clean
source.
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fdean07
New User, Becoming EHEALTHy
Joined: 30 Oct 2007 Posts: 1
Posted: 10-30-07 17:09pm
my dad and all 3 of his brothers have
alports syndrome, my dad recieved his 1st
transplant over 20 years ago. he recieved
his 2nd transplant last year. one of my
uncles has had several transplants and his
body has rejected all of them. he has been
on dialysis for about 30 years. 2 of my
cousins also have alports. 1 of them had a
transplant last year as well.
