Hi everyone. Just thought I would
introduce myself, and see if there are any
other "transplanters" here.
Here's my story.
I am 28, female, and I was diagnosed with
ESRD on Mothers Day 2000. I was 22, and
had been feeling really out of it.
Blurred vision, weight gain, back pain,
really bad Restless Leg Syndrome,and all
around feeling lousy. I had gone to
Urgent care twice, and my blood pressure
was off the charts (220/160) the doctor
sent me home with Valium, and said I was
stressed out. Finally on mothers day, my
sister took me back to urgent care again.
My blood pressure was even higher, and
this doc, put an IV in my arm and sent me
straight by ambulance to the ER. I was
put in ICU and had my first line put in my
chest, and the drs informed me of my
kidney failure. I started hemodialysis
that night, and did it for 1 year before
switching to peritoneal (much better). 2
years after diagnosis my brother donated
one of his kidneys to me, and now 6 years
later, I am better than ever. I take one
anti-rejection drug (Prograf 3mg 2xs
daily) and thats it, besides vitamins and
a baby aspirin.
A year after transplant I met my husband,
and we are now working with the doctors to
have a baby. Transplant changed my life,
and made me happier than I have ever been.
It took the tragedy to make me appreciate
everything I have.
I would love to hear everyone elses
story!
Oh, I forgot, I was diagnosed with FSGS
(focal segmental glomerulisclerosis)
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^Serenity^
Moderator
Joined: 02 Dec 2007 Posts: 1383
Thanks: 133
Thanked:154
Posted: 01-27-08 21:42pm
I am so sorry to hear your story but so
glad you are doing better now and trying
to have a baby, they are a wonderful
blessing. I hope it all works out for you
and your husband.
I also have FSGS. My problems started very
early in life. I am in stage 3/4 kidney
failure and I am possibly facing having my
one of my kidneys removed. I also have
many other health issues that are causing
me a great deal of problems.
Not to many people are familiar with
FSGS.
How is your FSGS now?
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MrsLtd
Experienced User , Rather EHEALTHy
Joined: 24 Mar 2007 Posts: 156 Location: Michigan
Posted: 01-28-08 11:21am
butterfly- Sorry you are going thru this,
I know how bad it sucks. Youre right,
there isnt much info on FSGS. It took 2
years to diagnos my kidney failure as FSGS
because my kidneys were so far gone. My
left one was completely shriveled, and my
right was on its way. I was under 10%
function when I went to ER. So far, the
disease has not came back in my new
kidney. I had my transplant at a research
hospital (NIH) in maryland, and I go back
every other year for a biopsy to check for
the disease. Alot of the meds used for
anti-rejection are also used to keep FSGS
at bay, so I think so far, they are
working.
Why are they removing one of your kidneys?
Are you having alot of pain? Are you on
a waiting list for a new kidney? Sorry
for all the questions, Im curious
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^Serenity^
Moderator
Joined: 02 Dec 2007 Posts: 1383
Thanks: 133
Thanked:154
Posted: 01-28-08 15:01pm
Don't apologize for the questions it helps
to know there is someone else to talk to
about this.
Mine started about 30 years ago, I was
very sick and no one knew why (still am
sick with other problems). They did a
kidney biopsy and found FSGS. We were told
I WOULD NEVER have problem well they were
wrong, so many years later this is were I
am at. I also have glomerulonephritis
(which goes with FSGS), kidney stones and
blood clots.
My kidneys and ureters (more so my right
one) became obstructed not from the kinks
that some people form with UPJ (my son and
other family members had this all had
surgery and knock on wood are doing quite
well) mine were from scarring in the tubes
that traveled from the kidneys to the
bladder into the urethra as well(this is
happening in my left kidney as well). I've
undergone 3 operations thus far with the
last one lasting close to 6 hours in the
OR.
I am very tired a lot and do have a lot of
pain. As I mentioned I have many other
health issues that have added to this
misery.
My kidney is just not working the way it
should. I have had every test known to
man, been poked and prodded more than I
care to count, not to mention the numerous
stents. So far I am not on a list but once
they remove this one I will be because my
left one as I mentioned is not good
either.
The doctors have been trying to buy me
time but time is running out. I am also
going in for a bone marrow test soon.
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robyn1
New User, Becoming EHEALTHy
Joined: 06 Jul 2008 Posts: 3 Location: ,
Thanks: 1
Thanked:0
kidney transplant Posted: 07-08-08 08:28am
Hi, just thought id tell you alittle about
my story, i was 17 feeling really ill, id
been having bad nose bleeds(19-23hours!),
fits, double vision, my skin was a yellow
colour, my face was full off water i
looked like a balloon the doctors said it
was all down to being a
teenager!!!!!!!!!!!!!!! Then one day after
another long nose bleed mum took me to the
docs & that was the day my life
changed, I had blood tests then at 10 that
night i was rushed in to hospital it was
then we found out id got kindney failure
it was a touch & go night! After only
8months on dyalysis I had my transplant
that was in 2001, now nearly 8years on im
married with two little girls ones 2
1/2years & the other is 6weeks they
are FAB!!!! Lucky everything went great
for me & everythings still workin.
Hope you get pregnant soon &
everything goes ok!!***
