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Author Topic: Hello all from a PD patient in Southern California!  (Read 4282 times)
spacezombie
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Melissa: ESRD since 1992, transplant June 10, 2008
« on: April 18, 2008, 06:28:49 PM »
Hi everyone! My name is Melissa. I live in San Diego with my boyfriend and my pug dog, Capi. Here is a run down on my health issues:

* I have Alport's Syndrome.
* My kidneys failed in 1992, when I was 14.
* I was on Peritoneal Dialysis for five years.
* I received a kidney transplant in 1997. My mother was the donor.
* I went into rejection in 2004, after seven good years.
* I've been back on Peritoneal Dialysis for nearly four years now.
* I am 30 years old and hope to get my second kidney transplant this year.
* My boyfriend has been ok'd as my donor.
* Soon I will be undergoing treatment for high antibodies at Cedars-Sinai medical center.

Whew, nice to meet you all! I wish everyone good health. =)
 :bandance;
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I have Alport's Syndrome. My kidneys failed when I was 14 and I was on PD for five years before receiving a kidney transplant from my mother. That kidney failed in 2004 and I've been back on PD ever since. I am undergoing treatment for my high antibodies at Cedars-Sinai medical center. I had a kidney transplant on June 10, 2008. My boyfriend was the donor.
monrein
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Might as well smile
« Reply #1 on: April 18, 2008, 06:38:57 PM »
 :welcomesign; Melissa.  Nice to meet you and look forward to hearing more from you.  Good news about your upcoming transplant.  Keep us up to date as you go along.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
flip
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« Reply #2 on: April 18, 2008, 06:49:48 PM »
 :welcomesign;
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That which does not kill me only makes me stronger - Neitzsche
rookiegirl
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« Reply #3 on: April 19, 2008, 08:27:48 AM »
Melissa  :welcomesign; to IHD family.  Look forward to your posts.

 :waving;
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
willieandwinnie
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« Reply #4 on: April 19, 2008, 08:37:05 AM »
 :welcomesign; Melissa. You'll find good information and lots of support here.  :cuddle;
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ndl0520
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« Reply #5 on: April 19, 2008, 09:52:34 AM »
 :welcomesign;
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boxman55
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« Reply #6 on: April 19, 2008, 10:48:22 AM »
Melissa, welcome to IHD.Glad you found us. Keep posting as often as you like. Look forward to hearing about your possible transplant this year


Boxman, Moderator
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
Bajanne
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« Reply #7 on: April 19, 2008, 11:17:36 AM »
Welcome to our community!  We are so glad you decided to join us.  It is good for us, and I am sure it will be good for you too.  This is a very supportive, frank, caring site.  Feel free to rant, rave, rage, vent as you need to. That is what we are here for.  This site has become a real family and we are only too happy to welcome you here.   :grouphug;  Keep reading, and please, keep posting.  Looking forward to hearing from you.


Bajanne, Moderator
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I LOVE  my IHD family! :grouphug;
Sluff
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« Reply #8 on: April 19, 2008, 11:45:23 AM »
Welcome Melissa,

I hope your transplant goes well and lasts a lifetime. I think I hear wedding bells in your future. Thanks for joining IHD and I look forward to hearing more from you and following your transplant journey.

Sluff/Admin
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crupert
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Lindsey 13 PD 3/08 Transplant 5/09
« Reply #9 on: April 19, 2008, 06:48:32 PM »
Hello Melissa,
I have spent a total of four hours in here reading and have learned so much already.  I'm glad to know someone is here that has experienced PD in teen years AND that you can say you have done ok.
Lindsey is an amazingly positive kid, busy and active.  She does get tired even before I do but she recharges quickly.  She had two difficult weeks when she had her catheter placed and started dialysis the next day so she was hurtin'. 
Lindsey was evaluated for transplant in mid-December and the doctor expected she would have some time before actual renal failure but she started feeling really bad the end of February so it was time to start dialysis. 
I wish you the best with your new kidney - hope that comes soon.
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Grandma to Lindsey
Diagnosed NS at age 3
Diagnosed C3 nephritis age 11
Renal Failure PD age 13
Transplant 5/09
Ang
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« Reply #10 on: April 19, 2008, 07:16:28 PM »
 :welcomesign; aboard  melissa
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annabanana
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« Reply #11 on: April 20, 2008, 06:58:03 AM »
 :welcomesign; Melissa Spacezombie!  :bandance;
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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
Romona
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« Reply #12 on: April 21, 2008, 04:47:54 PM »
 :welcomesign;
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hyperlite
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« Reply #13 on: April 21, 2008, 09:49:10 PM »
Hey Melissa! I've got Alport's too! I always thought that women were just carriers and weren't really affected by it. How's your eyesight/hearing?
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angellady07
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« Reply #14 on: April 22, 2008, 03:09:36 AM »
Welcome spacezombie. I like your name. Best of luck with the second transplant.  :bestwishes;
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mel75
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« Reply #15 on: April 22, 2008, 05:13:14 PM »
 :welcomesign;
hi melissa, mel here also from so cal hope your transplant works out well!!!
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*~Mel~*
spacezombie
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Melissa: ESRD since 1992, transplant June 10, 2008
« Reply #16 on: April 22, 2008, 07:42:21 PM »
Quote from: hyperlite on April 21, 2008, 09:49:10 PM
Hey Melissa! I've got Alport's too! I always thought that women were just carriers and weren't really affected by it. How's your eyesight/hearing?

I'm one of those rare weirdos that has Alport's in the way that a man would have it. I lost most of my hearing when I was seven, wear glasses, and my kidneys failed when I was 14. No one else in my family has Alport's syndrome either! My boyfriend is a scientist, so I was going to have him do some genetic testing for me. ;)
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I have Alport's Syndrome. My kidneys failed when I was 14 and I was on PD for five years before receiving a kidney transplant from my mother. That kidney failed in 2004 and I've been back on PD ever since. I am undergoing treatment for my high antibodies at Cedars-Sinai medical center. I had a kidney transplant on June 10, 2008. My boyfriend was the donor.
mariannas
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« Reply #17 on: April 23, 2008, 11:19:02 AM »
Welcome to IHD!!! I don't post a whole lot here, but I certainly LEARN lots!

I am really interested to hear about how your IVIG/plasmapheresis treatments go.  That is something I will probably have to do in the future (first transplant lasted 22 years so I have a pretty high antibody count too) and I think Cedars is the only place on the west coast that provides that treatment.  Make sure to keep us updated!
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spacezombie
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Melissa: ESRD since 1992, transplant June 10, 2008
« Reply #18 on: April 23, 2008, 03:28:35 PM »
Quote from: mariannas on April 23, 2008, 11:19:02 AM
Welcome to IHD!!! I don't post a whole lot here, but I certainly LEARN lots!

I am really interested to hear about how your IVIG/plasmapheresis treatments go.  That is something I will probably have to do in the future (first transplant lasted 22 years so I have a pretty high antibody count too) and I think Cedars is the only place on the west coast that provides that treatment.  Make sure to keep us updated!

I will keep you updated! Right now I am waiting for Cedars-Sinai to fax over the orders for my permacath to my doctor so I can start treatment. I was originally trying to get a transplant at UCSD medical center (where I had my first transplant in 1997) but positive crossmatches kept this from happening. UCSD claims that they do treat patients with high antibodies, but they are still working on their protocol and for whatever reason, they would not treat me. I emailed Cedars-Sinai and set up an appointment. They accepted me into their program almost immediately. I am very lucky to have quite a few people that are willing to donate (although, people that say they will donate and finding people that actually WILL are two different things).
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I have Alport's Syndrome. My kidneys failed when I was 14 and I was on PD for five years before receiving a kidney transplant from my mother. That kidney failed in 2004 and I've been back on PD ever since. I am undergoing treatment for my high antibodies at Cedars-Sinai medical center. I had a kidney transplant on June 10, 2008. My boyfriend was the donor.
lola
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« Reply #19 on: April 25, 2008, 04:53:09 PM »
Melissa I don't know how I missed your intro so :welcomesign; My husband has Alports and waiting for kidney#2 and in July we found out our 5yr old daughter Dani also is one of the few girls with it. I have yet to find a female who started having problems when they were young. Hope you don't mind but I may bug you with questions.  :cuddle;
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spacezombie
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Melissa: ESRD since 1992, transplant June 10, 2008
« Reply #20 on: April 25, 2008, 05:24:28 PM »
Quote from: lola on April 25, 2008, 04:53:09 PM
Melissa I don't know how I missed your intro so :welcomesign; My husband has Alports and waiting for kidney#2 and in July we found out our 5yr old daughter Dani also is one of the few girls with it. I have yet to find a female who started having problems when they were young. Hope you don't mind but I may bug you with questions.  :cuddle;

Feel free to "bug" me with any questions you may have. I was diagnosed with Alports when I was three years old. There is no family history of the disease but I had a very good doctor when I was young who noticed that something was up with me. I started losing my hearing when I was seven and ended up profound hearing loss but with hearing aids and lip reading I was able to attend a normal school. Let me know if you have any questions at all! Good luck to your husband! I hope he gets his second kidney very, very soon. =)
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I have Alport's Syndrome. My kidneys failed when I was 14 and I was on PD for five years before receiving a kidney transplant from my mother. That kidney failed in 2004 and I've been back on PD ever since. I am undergoing treatment for my high antibodies at Cedars-Sinai medical center. I had a kidney transplant on June 10, 2008. My boyfriend was the donor.
kitkatz
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« Reply #21 on: June 13, 2008, 11:31:52 AM »
Congratulations on your transplant this week!  Welcome to the boards! You have a lot of experience to share with us!



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