I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: Crobake on October 22, 2006, 01:48:19 PM

Title: new to group
Post by: Crobake on October 22, 2006, 01:48:19 PM
Hi All,
My name is Dan, I'm 44 y/o. At 16 y/o I was diagnosed with medullary cystic disease. At 20 y/o I began dialysis . At 21 y/o I received a cadaver transplant. Fast forward 23 years and I have discovered my transplant is failing. I have also developed various conditions due to the immunosuppressive medications. I would however love to get another transplant but I don't know if that is in the cards. I would like to know what I am in for as far as dialysis goes as I remember very little about it ( I mostly remember hating it.) Thanks in advance- I would also welcome any questions anyone would like to ask of me.
Title: Re: new to group
Post by: Bajanne on October 22, 2006, 02:47:53 PM
 :welcomesign; to our sharing and caring community!  You have come to the right place.  There are people here from every side of the renal challenge - people on or awaiting dialysis, people with transplants, parents, spouses, children, loved ones, nurses, techs,dieticians, and at least one nephrologist.
To find answers to your questions, go to FAQs-Frequently Asked Questions (not the beta one which is under construction), and General Discussion.  If there are still unanswered questions, ask in a post in those sections and someone will give you an answer.
Also, it would be great if you would go over to the Transplant Section and tell us your story.
I hope you have much more time with the transplant.
Here is a group hug from all of us -  :grouphug;
Title: Re: new to group
Post by: Black on October 22, 2006, 05:34:53 PM
 :welcomesign;
Title: Re: new to group
Post by: Sluff on October 22, 2006, 06:35:14 PM
 :2thumbsup; Welcome
Title: Re: new to group
Post by: goofynina on October 22, 2006, 06:45:23 PM
Hi Dan,  Welcome to our wonderful website/support group  :grouphug;   The one thing i have to say is make sure you know all your options such as, hemo, NxStage, CAPD, CCPD,  pick which one you feel comfortable with,  i was in hemo for 3 years and hated every minute of it, now i am on CCPD, it's not so bad, the fluid and diet restriction isnt AS bad ;)   I am sorry to hear that you have developed other issues but WOW, 23 years with a transplant, that is pretty darn good, never give up, who knows, maybe you will be able to receive another.  Good luck and please, keep us posted ok,  hope to hear more from you  soon
Title: Re: new to group
Post by: Zach on October 22, 2006, 09:10:47 PM
Welcome Dan to the community!
 :beer1;
Title: Re: new to group
Post by: vandie on October 22, 2006, 09:12:01 PM
 :welcomesign;
Title: Re: new to group
Post by: Joe Paul on October 23, 2006, 01:03:46 AM
Welcome Dan, good to have you aboard.
Title: Re: new to group
Post by: Rerun on October 23, 2006, 02:07:13 AM
Welcome Dan.  I am so sorry you are losing your transplant.  It is like losing your best friend.  I lost mine after 17 good years.  Please go to Transplant Stories and ask your questions.  I do have some advice about getting off Prednisone.  TAKE IT SLOW.  1mg per month and at the start of the month alter doses.. example:  5,4,5,4,5,4,4,4,4,4,4mg 

Yes, we need to talk.   :cuddle;   Looking forward to your posts.
Title: Re: new to group
Post by: mallory on October 23, 2006, 11:38:45 AM
Welcome, Dan, good to have you here.  I hope you can get another transplant if that's what you want, I'm hoping for one someday as well but may not be eligible.  I'm looking forward to your posts! :welcomesign;
Title: Re: new to group
Post by: angieskidney on October 23, 2006, 11:45:53 AM
Welcome Dan!!  :clap; :welcomesign;
Title: Re: new to group
Post by: DeLana on October 23, 2006, 10:15:07 PM
Welcome, Dan!

I'm so sorry about your transplant; that's tough.  I'm a nurse who worked in a dialysis clinic for 5 years.  I can tell you that dialysis is much, much better today than it was 23 years ago (according to what my patients who dialyzed back then have told me).  I think you will be pleasantly surprised, although I do realize that it will be quite an adjustment after living with a transplant.

I wish you the best of luck for getting another transplant.

DeLana   :grouphug;
Title: Re: new to group
Post by: Crobake on October 29, 2006, 12:35:14 PM
I do have some advice about getting off Prednisone.  TAKE IT SLOW.  1mg per month and at the start of the month alter doses.. example:  5,4,5,4,5,4,4,4,4,4,4mg 

Do you have experience with prednisone reduction? I have tried, but I think the Neph went too fast, too soon. (2-1/2 mg reduction every other day) Also, is there a real danger I could go into acute as opposed to chronic renal failure? Would love to lower dose but when I tried my 135 lb body felt like it weighed 635 lb. Thanks for any advice.