Fumabella
Newbie
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Posts: 4
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« on: February 21, 2008, 01:01:26 PM » |
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I joined today and have been enjoying the stories and information. Thank you.
I contacted an autoimmune disease Feb/March 07 ... Goodpastures Syndrome. Goodpastures attacks the kidneys and lungs, Renal/Pulmonary; is very rare and often undiagnosed. Thankfully I recovered and only lost function of my kidneys. Unfortunately the cytoxin administered to suppress my immune system damaged my heart muscle leaving me with congestive heart failure. It all has been a huge physical/emotional adjustment. I was never sick other than a cold or flu and busied myself traveling across the country regularly to visit may son's at school. I however, now have put on a new slimmer, slower version of my old self.
I have found the more I know about dialysis, treatment, facilities, staff, Meds. etc. the better I am equipped to be my own advocate. Information has made a profound difference.
I have been on hemodialysis for nearly and year and as you know treatment is often a challenge. I made an early decision to cope without grumbling and demonstrate a good attitude. For the most part, with God's grace I have met the mark. On occasion, I also have had to apologize to a nurse or two.
All my tests were just completed for a transplant and gratefully have a live donor who is just starting her testing journey. I am listed on the National list as well as the Extended Criteria and hopeful as I hurry up and wait.
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livecam
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« Reply #1 on: February 21, 2008, 01:07:52 PM » |
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Welcome to the site Fumabella. As you've probably noticed there is much knowledge and experience here free for the taking. It sounds like you have your ducks in order regarding transplant and about handling dialysis. Thats just excellent for being on for such a short time. Please be a participant, ask and answer about anything.
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Sunny
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« Reply #2 on: February 21, 2008, 01:14:31 PM » |
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Wow! Somebody else with Goodpastures Syndrome. You can count me as one of the lucky ones too!
I contracted it from an unknown source in 2001. Took cytoxin and prednisone to get rid of it.
Now my kidneys are scarred and 25% functioning.
I'm happy you found this site. Welcome. I hope things continue to go well for you with dialysis.
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Sunny, 49 year old female
pre-dialysis with GoodPastures
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Joe Paul
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« Reply #3 on: February 21, 2008, 01:43:05 PM » |
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Welcome Fumabella, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
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Bajanne
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« Reply #4 on: February 21, 2008, 01:50:04 PM » |
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Welcome to our community! A special welcome to you as Californians are special to us. Our founder was a Californian and we just said a sad goodbye to our beloved Adminstrator Goofynina, Susie Trevino who is also a Californian. So you are here to fill some wonderful shoes. This site is just the place for us who are dealing with this renal challenge. "Knowledge is Power" and we are committed to that here. It is also a very supportive site - a real bonafide family. Just read and you will see. So please take advantage of all this site has to offer. Keep reading and keep posting. Let us know how you are doing. Not nosy, just family!  Bajanne, Moderator |
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"  I LOVE my IHD family! |
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Wattle
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« Reply #5 on: February 21, 2008, 01:50:28 PM » |
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 Welcome
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
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Ang
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« Reply #6 on: February 21, 2008, 02:08:35 PM » |
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 aboard
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live life to the full and you won't die wondering
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Ohio Buckeye
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« Reply #7 on: February 21, 2008, 02:24:02 PM » |
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Welcome Fumabella to the IHD family.
Hope your transplant happens real soon.
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If I must do this to live, I must strive to live
while I am doing this.
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bolta72
Sr. Member
Offline
Gender: 
Posts: 832
my best friend
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« Reply #8 on: February 21, 2008, 03:22:39 PM » |
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gotta do what I gotta do.. 2 yrs in ctr hemo
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boxman55
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« Reply #9 on: February 21, 2008, 03:32:54 PM » |
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Hi from Wisconsin welcome to IHD...Boxman
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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 |
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petey
Newbie
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Gender: 
Posts: 0
MEMBER BANNED
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« Reply #10 on: February 21, 2008, 03:33:42 PM » |
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, fumabella. You've learned one thing right -- you MUST be your own best advocate. You've also found the perfect site to share, learn, cry, laugh, and vent. Look forward to hearing from you again soon.
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Sluff
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« Reply #11 on: February 21, 2008, 05:33:55 PM » |
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Hello fumabella and welcome to ihatedialysis.com,
Glad to here you have a live donor and I hope all goes well. I'm so happy you found us, we have so much information at your finger tips, and like you said Knowledge is power.
Hope to see you actively posting here in the forums, or maybe in chat.
Sluff/ Admin
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oswald
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« Reply #12 on: February 21, 2008, 05:39:10 PM » |
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ESRD 11/95
1st Transplant 7/1996 (failed; Nephrectomy 12/1996)
2nd Transplant 3/1999 (lasted 6 years)
3rd Transplant 5/2007 (lasted 4 years)
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paris
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« Reply #13 on: February 21, 2008, 08:29:37 PM » |
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Glad you joined this site. It is a great source of information and support.
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It's not what you gather, but what you scatter that tells what kind of life you have lived. |
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KR Cincy
Sr. Member
Offline
Gender:
Posts: 930
Home hemodialysis since May 07
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« Reply #14 on: February 22, 2008, 11:20:56 AM » |
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I'm glad you found us and please know you can talk to and ask us anything...we're all here to help!
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Not giving up...thanks to Susan.
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willieandwinnie
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« Reply #15 on: February 22, 2008, 11:43:03 AM » |
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Fumabella. You'll love it here.
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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Romona
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« Reply #16 on: February 22, 2008, 01:03:51 PM » |
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st789
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« Reply #18 on: February 22, 2008, 01:55:15 PM » |
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Information here is priceless.
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Slywalker
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« Reply #19 on: February 23, 2008, 08:20:20 AM » |
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Welcome Aboard and I truly hope the testing goes well for your live donor. I just had a transplant from a live donor and it was an incredible experience.
Good luck.
Sandyb
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CW
Full Member
Offline
Gender:
Posts: 307
Yeah .............That's me!
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« Reply #20 on: February 23, 2008, 09:14:31 PM » |
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Fumabella ! IHD is a great place full of great people. Being informed is a great way to make sure your healthcare is the best possible. Being here is a one piece of the being informed puzzle, so stick around! See you around the forum. CW |
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*Common Sense is an uncommon thing
20 years navigating ESRD
Had a transplant but it rejected
To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell. ~Edna St Vincent Millay
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keefer51
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« Reply #21 on: February 29, 2008, 01:59:40 AM » |
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i am a 51 year old male on dialysis for 3 years now. This is my second time. My brother donated a kidney to me about 13 years ago. I found this site on another site. I had to laugh when i saw what it was called. I hope to meet people from all over to talk about dialysis.
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