Introduction

[kidney96]

Hi,

Just joined earlier today and what do I say about myself.

I have been doing the"kidney thing" for a long time.  I was first diagnosed with ESRD in 1979 at the age of 11.  I was lucky and only had to be on hemo for 3 weeks.  I was supposted to get a kidney from my mother (Good ole mom.  She's the best), but a better match came in at the last minute.  That lasted almost 13 years and ended with chronic rejection.  I went in for a checkup short of breath, anemic and uremic.  They put me on PD.  I loved PD, but had the unfortunate exit site infection which tunneled inward and caused peritonitis 3X.  I had a new PD cath placed, but the damage was done to the peritoneal membrane and the nephrologist was saying that I would have to go back to HD.  I had been on it for 3 months recovering from peritonitis.  This was over a period of 4 years on dialysis (mostly PD) and baby brother to the rescue.  He offered to give me a kidney since he had some time off from school... I had asked him (put it out there) a year ago, but he never said anything more about it, so I figured he did not want to, but he was thinking about it and gave me a gift the week before his 21st birthday.  It was a month before my 28th.  When I say baby brother, it is in age only.  Picture his 6'3" against my 4'11" frame.  We made interesting dance partners at my brother's wedding.

My kidney is not working optimally.  We had a biopsy done with the result of chronic nephropathy probably due to cyclosporin toxicity.  The drug that helps, but can also hurt.  They switched me over to the Rapamune and I have stabilized for the past 3 years.  Can't really complain.  I am going on 11 years the end of February.

Otherwise, I have been through a lot dealing with kids taunting me when I was a kid and trying to educate the clueless as I have gotten older.  I thought I would be a student forever, but became a dietitian (I know, it's a dirty word) in 2001, and go figure, I have been working in a dialysis center for almost 2 years now in upstate New York.  I thought it would be hard working with people on dialysis, but I love it.  I think it would be harder for me to work with transplant pts who are noncompliant with meds, etc.  Organ donation is such a gift and I have a hard time understanding why someone would throw it away.  I get that the side effects of the drugs are a factor.  Heck, I have dealt with them for over 25 years.  I have osteoporosis, high blood pressure, high cholesterol, I struggle with my wt (but have managed to lose 30 of the 40 lbs I gained on the steroids) and yipee, I was recently diagnosed with Bowen's Disease (squamous cell cancer on my leg).  Still I would not change a thing.  I will eventually go back on dialysis and will get back on the transplant list as soon as they allow me to and again I will throw the question out to friends and family (no pressure).

I am now 38 and a realist.  Some of my friends don't get my outlook in life.  My disease is a part of me.  I own it, I live with it and it will probably be the death of me.  I am just hoping for another 30, 40 or 50 years.     Cheers!!!!!!!!!

~A

Fixed title - Rerun Moderator

[Epoman]

Welcome kidney96,

Welcome to the site, I have read all your posts so far, and I think you will make a great addition to this site. 

I noticed you replied to the thread which talks about my brother and the transplant issue and I want to thank you personally for that post you made. As you will notice in some threads things can get a little heated as we all have our opinions and some of us have very STRONG opinions, and that is why I created this site so members can come here on IHD and speak from the heart. It is true I did not like some of the replies to me in that brother/transplant thread, but like I said every member here is allowed to speak from the heart and tell it like it is.

For example here is a thread that got PRETTY heated and I started the HEAT  http://ihatedialysis.com/forum/index.php?topic=553.0 I was giving the member "Tough Love" and it seemed to work or at least help him. And then months later a member replied and could just not understand why, I talked to the original poster that way. We went back and forth for awhile discussing the situation. It's a great thread, I hope you check it out.

Anyway, again welcome to the site and I thinks it's cool that you are a Dietitian and a ESRD patient. I hope your transplant works another few decades at least. And do me a favor, when you see your brother, give him a big hug for me. You are very blessed.

- Epoman
Owner/Admin

[okarol]

  Welcome A! Your story is interesting and it sounds like you have
a great attitude given all you've been through! Hope things
continue to go well.
 
~Karol

[Sluff]

 

[anja]

WOW !  What an attitude!  You have certainly proven that your attitude, even faced with adversity over and over, has gotten you through!  Kudos to you and welcome to our site, we will enjoy your posts.   

[kitkatz]

Welocme. You need to go over to the Tshirt shop and but the "Evil Dietitian" Tshirt to wear to work. As I said welcome to our site.

[angieskidney]

Welcome!! 

[Zach]

Welcome to the community!  Looking forward to your posts.
 

[Bajanne]

Welcome to our community!  I was away for the weekend (with no computer access  ) and yours is the first post that I have read since  I am back and it was a great one!  How forturnate we are to have you - a dietitian who is one of us!!! WOW!
I am really looking forward to your input, especially in the Diet and Recipes section which I moderate.
Welcome again!

[Joe Paul]

Welcome Kidney, good to have you aboard.

[Rerun]

Welcome Kidney96,  I think it is great you are a dietition.  Who but you would really "know" what the patient goes through.  I would listen to you where as I don't really give my dietition much credibility.  I like her and all, but she doesn't live it. 

I too am a realist.  I don't have a negative outlook, its just the way things our.  People think that if I'm "positive" my kidney function will miraculously come back.  I know better.

[mallory]

Welcome, kidney96.  I think it's great that you're a dietitian.  Looking forward to your posts! 

[Ohio Buckeye]

Welcome Kidney96.
Sounds as if you have a lot of experience and info.
to share with us.  Look forward to your posts.

[Sara]

Welcome to the board!  I don't think we have another dietician here so it will be great for your input.   

[kidney96]

Thanks for the warm welcome.  I look forward to participating in some good discussion as time permits.

Anne

[goofynina]

Sorry i am a little late on Welcoming you to our fantastic website and support group.  I hope you find all that you are looking for here,  i know i have    Looking forward to hearing more from you...

[jbeany]