I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: susan parry on July 16, 2009, 02:26:37 PM
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I am new at this and hope i am doing it right. i have pkd and am at the end stages of it and i am scared to death. i have looked at this sight before but only as a visitor.
i think i have been approved to be on the waiting list (my appointment was Tuesday) and the doc said he felt i would be a candidate but have to wait for the letter.
i have an appointment in august to go to boston where i will also be listed.
my kidney dr is the best-she says she won't put me on dialysis until i hit 10? they were suppose to put a fistula in my arm the end of june but i didn't have any good veins to use. i kind of wanted to try the pd although my kidney dr fights with me on this as she says there will not be enough room in my stomach for the fluid?
any words of advice from anyone that has been through this would be greatly appreciated.
thank you
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Susan, take a deep breath. There are many, many folks here with PKD who have much experience. Read through the posts and learn as much as you can. Knowledge is power.
Ask questions and let the community help you on your journey.
As you learn more, I hope you will be less fearful. It is possible to live a full life with PKD and renal failure.
Lean on us. We are here to share and we care.
Aleta
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thank you for your kind words. everyone does seem to help everyone else on this sight and i have read quite a few of the postings.
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:welcomesign; Susan. I can't help you with the PD questions, my hubby did home hemo and received a transplant in Sept of 07. We are a wonderful group and there will be folks along to answer your questions. Check out some of the older threads as there is lots of information there. Come here and ask your questions and we will be more then happy to answer. We are always a great source of support. Please post often and good luck with getting listed. Let us know how it goes. :cuddle;
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I'm assuming your on the short side? That's why they are saying about the fluid. I would go with their advice on this - I do pd, but I am quite tall. If you are short it could be really awful. Also, if you can aim for doing home haemo it sounds like that is a really good option. But maybe you'll get a tx soon and avoid it all. Nice to meet you. Look forward to your posts.
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:welcomesign; Susan. You've found the best place to help you feel just a bit less scared. Come here often and ask questions or just read about the experiences of IHDers.
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I'm assuming your on the short side? That's why they are saying about the fluid. I would go with their advice on this - I do pd, but I am quite tall. If you are short it could be really awful. Also, if you can aim for doing home haemo it sounds like that is a really good option. But maybe you'll get a tx soon and avoid it all. Nice to meet you. Look forward to your posts.
i am 5' 5" but they said my kidneys are twice the size of a normal kidney due to the cysts on them
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Welcome! I did PD for many years but I don't have PKD. I'm sure one of our members who is knowledgeable on this subject will chime in.
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I,ve been on HD
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Lets keep this the intro section please move your dialysis posts to the proper forum. Thank you
Welcome to IHD
Boxman,Moderator
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I,ve been on HD for a good while, PD was never an option even though I am 6ft 5in but my basketball size kidneys have taken up all the space
Try not to worry about your condition, look at the positives in your life even if they are few and far between.
Keef
Earlier post due to fat fingers and typing in the dark.
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:welcomesign;
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Welcome Susan!! I can't answer your PD questions but sounds difificult if your kidneys are so large with the cysts :( :cuddle;
Try to not be too scared whatever you wind up doing. We're all here to help support you!!! You'll be fine I'm sure!!
:welcomesign;
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:welcomesign; Susan,
Sorry I am not much help with the PD or PKD as my daughter was on Hemo. I am glad that you are getting on several different lists. You have obviously educated yourself. Prior to listing my daughter, I thought that there was one National List. Get a second opinion on the PD. I interviewed several teams of Nephrologists and transplant teams before I felt comfortable chosing Hemo and we chose an out of state hospital for listing and actual transplant due to the non-steroid protocol.
Best of Luck to you. This is a great forum for reliable information and super support. :grouphug;
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Welcome. You will discover many great support people here. Come on over and read everything you can on the board. The more educated you are before you start the better treatment options you will have.
kitkatz,Moderator
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Welcome to our community! it is very normal to feel a bit scared as you are faced with new challenges. But the good news is that you are now part of a family :grouphug; with people who have been through everything you are facing, plus more! There is a lot of information here - just keep reading, keep asking questions, and keep posting.
Bajanne, Moderator