I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: cath-hater on April 19, 2011, 07:00:02 PM
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Stumbled onto this forum and it seems very good source for information. I'm 39. Have been on PD for almost 9 years now. I have always been on PD, never HD. In 2010, I received a transplant, but the doctors never got it to work properly. I am cursed with FSGS and that is what deteriorated my original kidneys and is what damaged my new kidney. I went through 3 months of plasmapheresis and needles and tests and more needles and hospital stays and more needles. Got sick of it by the 4th month and was not getting any progress with the transplanted kidney, so I decided to throw in the towel. Am now back on dialysis. Was quite a ride, physically and emotionally.
I decided not to get back on the list for now. The pain and suffering I went through is still pretty fresh in my memory. Am pretty content on dialysis right now.
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:welcomesign; Welcome to IHD! It is a great source for information as well as a great place for support. I am in the OC on HD. Glad you found us.
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:welcomesign; I am just 3 weeks post-transplant - went through 4 rounds of plasmapheresis, couple of transfusions, the normal post-transplant stuff and lost count of needles after about stick number 40... I have actually ended up with buttonhole type holes in my elbow crease where they are drawing blood. I am sorry to hear your transplanted kidney didn't work, that must have been heart-breaking.
Nine years on PD is a long run. Are you doing manual exchanges or using the machine? With that many years of PD, you must have a wealth of knowledge to share ;) I know if I ever have to do dialysis, PD would be my choice, but I have wondered if the abdominal/ transplant surgery would now prevent that. I guess not, since you are back on PD. That's good to know.
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:welcomesign; cath-hater! Sorry to hear about the transplant not working out but glad dialysis is going well for you for now. I'm the same age as you and grew up in So Cal myself (Anaheim/Yorba Linda area). I get to back and visit my dad fairly often so I get a taste of that great weather I loved but never appreciated enough.
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Hey Kim...I live in Yorba Linda right up the street from Esperanza High School! Small world.
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:welcomesign; cath-hater!
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Welcome to the group, cath-hater. Lots of good information and friends here. Glad you found us!
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Hey Kim...I live in Yorba Linda right up the street from Esperanza High School! Small world.
Really?! I lived right across from Esperanza (go Aztecs!) at the end of one of the cul-de-sac streets across from the fields. I also went to Orchard elementary that's now the "freshman focus" campus across the street. I remember thinking when I left elementary school for junior high at Bernardo Yorba, "Wow, I'll never be back here again." Little did I know they would annex it my freshman year of high school and I was back in the same classrooms again.
My father still lives in the same house I grew up in and I love visiting. Wait a minute, I think i just figured out what YLGuy means. I'm looking for the "duh" emoticon... So great to meet someone from my home town.
Cath-hater, I know the difficulty you had is fresh in your mind and I can only imagine the pain you went through, both physically and emotionally. Have you considered maybe getting back on the list to acrue some time and then making the decision later? Pardon my ignorance, especially if I'm being too forward with that question.
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:welcomesign;
Sorry to hear the transplant didn't take. :cuddle;
This is a great place for information and fellowship. :2thumbsup;
Aleta
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Hi Cath-harter and welcome to IHD. I'm so glad you found us. Sorry to hear about your transplant. You will know if you want to try again someday.
Come here and post often.
Rerun, Moderator :welcomesign;
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G'day, cath-hater and :welcomesign; :ausflag;
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Hey Kim...I live in Yorba Linda right up the street from Esperanza High School! Small world.
Really?! I lived right across from Esperanza (go Aztecs!) at the end of one of the cul-de-sac streets across from the fields. I also went to Orchard elementary that's now the "freshman focus" campus across the street. I remember thinking when I left elementary school for junior high at Bernardo Yorba, "Wow, I'll never be back here again." Little did I know they would annex it my freshman year of high school and I was back in the same classrooms again.
My father still lives in the same house I grew up in and I love visiting. Wait a minute, I think i just figured out what YLGuy means. I'm looking for the "duh" emoticon... So great to meet someone from my home town.
Cath-hater, I know the difficulty you had is fresh in your mind and I can only imagine the pain you went through, both physically and emotionally. Have you considered maybe getting back on the list to acrue some time and then making the decision later? Pardon my ignorance, especially if I'm being too forward with that question.
They (UCLA) did give me the option of going back on the list. And if I did, I would actually go back on top. Since my transplanted kidney never worked, it doesn't count as a transplant and considered as never have happened at all. So it could be as soon as a year that I get a call - IF I went back on the list. But what I'm leaving out is that the doctors told me that I would only have about a 10% chance of it being a success because of my FSGS. So I decided that going through all that was not worth a lousy 10%.
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I do not know how close you live to the OC but St Joseph's in Orange has the highest success rate for patient's AND kidneys in all of Southern California. Maybe a second opinion might give you better odds. I am listed there and can give you any contact information you want.
Marc