Wondering if anyone out there can relate.
Just here to share my story and vent.
About 1 yr ago I was diagnosed w/ a
bicornate uterus - apparently anomalys of
the uterus are associated w/ anomalys of
the renal system (who knew?) - so I was
sent in for an IVP. During the exam - I
was shuttled in for a CT ...I was
mortified when it seemed like the entire
hospital staff came in for a "peek" at
what the monitors showed. The Dx is that
I have 3 kidneys (Supernumerary kidneys) -
apparently the most rare of renal
anomalies. Left is "normal" (30% function
- no explanation) Right side has two
kidneys, one is partial and they are
fused. (function 35%) Right side has
suffered hydro., is dialated and there are
two ureters that fuse to before the
bladder (wishbone effect) - also severly
dialted. I have history of UTI, bladder
and kidney infection. Angry that with my
past - this was never discovered before.
This condition puts me at high risk for
infection, stones and CKD. I was put on a
low sodium / "easy to digest" protein diet
to maintain kidney health. Urine
regularly shows trace protein and blood
but doc. says 24 hr. collection isn't
necessary. Creat. & BUN are normal/high -
Dr. says my condition may "skew" results
but "believes" this is fine. After inital
shock and life changes - I have come to
accept this is the way I am as
optimistically as I can. This week has
been tough - I'm battling another kidney
infection (4th since diagnosis). Flank
pain and exhausted. I want to see a
nephrologist but my urologist strongly
discourages it. What is his deal? I
wonder if my condition clouds his
judgement or if he really doesn't know
what to do with me. I am tired of the
antibiotics, tired of the fear and tired
of the unanswered questions. Its hard to
be optimistic when you don't feel good and
I just really needed a place to "let it
out." Thanks for listening.
|
mc4ever02
Supporter
Joined: 08 Feb 2007 Posts: 3636 Location: Orlando, FL Usa
Thanks: 5
Thanked:2
Posted: 06-29-07 11:48am
I can completely understand why you are
frustrated. It seems like one to many
doctors are telling you that they just
don't know. Which can be very discouraging
when they are suppose to be educating us
about our problems, not the other way
around.
I have no experience with this diagnoses,
so I'm afraid that I can not be of much
help. But, I hope that someone will be
able to offer you some advice. Have they
discussed the possibility of surgically
removing the third kidney or, because they
are fused, would it be to risky.
Even with these issues, you can still
become pregnant. Have you seen a
reproductive endocrinologist?
Sorry that I couldn't be of more help.
But, we are always here to listen!
|
aflsh
Moderator
Joined: 26 May 2007 Posts: 451 Location: Souris, MB Canada
Thanks: 18
Thanked:9
Posted: 06-29-07 18:16pm
I can sort of relate to the 'frustration
part'. I don't have 3 kidneys, but I did
have an obstruction that caused alot of
flank pain. They did surgery but I ended
up losing function in that kidney. I am
now in your position where they want to
just wait and see. I have been to a
urologist and they don't want to do any
more. They won't refer me to a
nephrologist either. I also have Diabetes
2. As long as the creatinine is within
normal levels they won't do anything. I
deal with the fatigue and pain too. Go
ahead and vent. I hear you!!
|
javatif
New User, Becoming EHEALTHy
Joined: 26 Jun 2007 Posts: 7
Posted: 07-01-07 23:05pm
Thank you so much for the support. Today
is a better day but it means a lot to have
somewhere to go when you get overwhelmed
by it all. I try to put on a brave face
for my friends, family, the world and even
that gets exhausting at times. Thank you
- thank you - thank you for allowing me to
be less than strong for a moment. To
answer your ?'s -
MC- You should know I have 2 amazing
children (ages 5&9) and I've
never had trouble getting PG. My issue
has always been with carrying to term . Last yr. after
another PG disappointment drs.
investigated to find the bicornate uterus
- they said my children were true miracle
stories. In any case - the DX is what led
them to research my kidneys. I guess
there is a part of us that grows in utero
thats called the mullerian ducts. They
create the kidneys, ureters and the female
uterus. If something goes wrong with the
mullerian ducts during develpment - it is
likely you will have a birth defects in
all of the areas. I guess I'm living
proof -
Re: surgery Believe me, as scary as it
sounds a nephrectomy is an option in my
book if it improves my quality of life.
The fusion of the 2 does not make it
anymore risky as far as I know - I believe
the concern is - the "main" kidney on that
side is severly damaged...I think the
concern is how it would function alone if
at all. My left side (the good side) is
already only at 30%. I don't know which
is the lesser of 2 evils and I think the
docs. are playing the same guessing game -
the 3rd kidney is the source of a lot of
trouble - but without it...who knows?
Aflsh - It sounds like you were in similar
circumstances re: surgery. Did they
discover what was blocking the kidney?
Did they discover what caused it to lose
function post surgery? Do you know what
the function is on your other side?
Wishing you both well...
Thank you - thank you - thank you
again!!!!
|
aflsh
Moderator
Joined: 26 May 2007 Posts: 451 Location: Souris, MB Canada
Thanks: 18
Thanked:9
Posted: 07-04-07 23:26pm
Your welcome anytime. I can relate to how
frustrating it can be. I too, have good
days and bad. I have had several
cystoscopies and it never shows anything.
The same as you, my creatinine is within
limits so they don't do anything. I was
born with this defect, apparently, it was
a kink in the ureter at the junction of
the kidney. I don't know why they won't
remove it when it doesn't function. Now
it has at least 3 big cysts on it. I get
tired as well. My other kidney always
appears normal in every test. I hope
everything works out for you. Keep in
touch.
|
hatfield
New User, Becoming EHEALTHy
Joined: 02 Aug 2007 Posts: 3 Location: Los Angeles
Posted: 08-02-07 09:18am
Hi. I was born with 1 kidney. I have an
abnormality of the mullerian duct. Am
missing my uterus completely, my left
kidney, left ovaries, left tubes.
Everything. Seems like the opposite of
you. Am scared of the day I have any
trouble with my kidney because I have no
backup. I'm sorry you are going through
this. It sounds painful and confusing.
Stay strong though. I hope you feel better
soon.
|
superone
New User, Becoming EHEALTHy
Joined: 11 Oct 2007 Posts: 2
Posted: 10-15-07 18:02pm
javatif:
Please read the question that I just
posted about myself today....I can
undestand and completely relate...
"I am a 39 yo female with the following
urinary tract abnormalities, (per several
specialists): Supernumerary fused right
kidney, ectopic, lies in the iliac crest
and pelvis, with 2 additional renal
arteries. Kidney is malrotated
-anteriorly, with a single ureter draping
over the kidney and then "s" curving,
almost a hard 90 degrees before entering
the bladder.
My problems began 4 years ago when I went
to my MD with what I thought was a pulled
lower back muscle on my right side. Not
so, he found anomaly and sent me to
specialists. In the last 4 years I have
had numerous UTI's, persistent flank pain,
and passed several stones. MD's are very
fascinated by the anomaly but cannot find
issue with the kidney. Glad for that!
However, one MD relieved pain somewhat.
She believed pain was neuropathic pain and
I now take a small daily dose of
Nortriptyline. It has helped, but....
My question is this...Can the ureter in
the position it is in and it's travel to
the bladder cause some of my problems such
as reflux, obstruction, UTI's, and
pain??"
We are a rare few in which the answers are
even rarer...
|
sarahi
New User, Becoming EHEALTHy
Joined: 18 Oct 2007 Posts: 5
Posted: 10-18-07 12:01pm
Thank God I just have lots of stones
(30-50 inthe last 3 months) but the Dr's
don't seem to know what is going on. I'm
looking forward to Friday I have been
sent to the nephrologist. I can't believe
you haven't seen one yet. I think you
should do what you have to to see one.
What is the worst thing that can happen?
He/She could say "I can't do anything" but
you might get some answers? Your primary
can give you a referal. Remember this is
your health and the Dr's work for you if
your not getting an answer get a new Dr.
Make sure you have copies of all tests
that have been done to take with you. Hope
this helps.
By the way has any one heard of stones
made of Protein and what couses them?
|
2cchetti
New User, Becoming EHEALTHy
Joined: 27 Mar 2008 Posts: 2
I am pretty sure I know what causes protein stones Posted: 03-27-08 20:00pm
BTW Sarahi. I am passing stones out of
both kidneys & my gallbladder. Real
fun, only your calcium oxcolate stones
will show up on any imaging device,
protein stones are invisible.
and I've
never had trouble getting PG. My issue
has always been with carrying to term 
. Last yr. after
another PG disappointment drs.
investigated to find the bicornate uterus
- they said my children were true miracle
stories. In any case - the DX is what led
them to research my kidneys. I guess
there is a part of us that grows in utero
thats called the mullerian ducts. They
create the kidneys, ureters and the female
uterus. If something goes wrong with the
mullerian ducts during develpment - it is
likely you will have a birth defects in
all of the areas. I guess I'm living
proof - 
