Greetings from North Carolina

[Mike_NC]

Hello everyone. My name is Mike and have been on PD since 2007. I was scheduled for transplant, did six months of work up and testing with my donor, my mother. Everything was set and approved and then 4 days before surgery, the surgeon that would be operating on my mother, withdrew (without so much as a phone call) and surgery was canceled. I was told "off the record" that the surgeon simply picked a small detail with my mother to use as his excuse for backing out, and that he was too focused on opening his own brand new practice is San Francisco. Being that his associates were the only ones here that performed donor surgeries, they all refused to take my case. It was then that I was urged to start PD, to keep myself stable.

All of my complications stem from being born with spina bifida. A lot of nerve damage although I can walk which I was never expected to do as an infant. Over the years it progressively worsened and I suffered from a neurogenic bladder. Basically I could not tell when I needed to urinate, so over time, my plumbing back up and my kidneys swelled up and shut down. I still have some residual kidney function and still produce alot of urine according to my clinic. Due to the neurogenic bladder, I have to self-cath myself 4-6 times a day.

As of now I am still on the same regimen of dialysis that I have used since I started....well except for th change from Baxter to Fresenius products and Liberty cycler, which I hate. I am on the cycler 8 hours per night using 2- 5 liter bags of 1.5% solution with no fill at the end of the 8 hours. The solution only changes when/if I am retaining fluid and then I alternate 1.5% & 2.5% solution, or a combination of the two, for a couple of nights until fluid is removed. I am dry throughout the day thankfully.

Forgive me, if when I post, I go on an extended rant on a given subject. Sometimes when I get started I just keep rolling lol. I have discussed on recent threads about being the "squeaky wheel" when it comes to being vocal with my Dr's and nurses and I may be the same way here. I hope I never offend anyone. I try to stay on topic and don't use profanity, but I do stand firm in my own beliefs and experiences and look forward to hearing other's stories and experiences. While I am firm in my beliefs, that does not mean that I am not open to learn from others. I think there is always something that can be learned from others.

Okay, I think that's enough for now. i wish each and everyone here the best of luck and look forward to interacting with you.

[willowtreewren]

Welcome, Mike!

What a real downer about your planned transplant! Is there any chance that you will be able to proceed with it through another center?

Aleta

[bluesgirl]

welcome Mike! I too have spina bifida and the neurogenic bladder, alhtough my CKD probably stmes from seomthing else. It will be interesting to be able to have someone to share experiences with on here!

[pinkrose]

  Welcome - hope you keep squeaking! I would request a meeting with another transplant center if you don't get any help at yours. Is your mom still able to donate? Good luck!

[lawphi]

Hope you are enjoying the weather!  There are several centers in NC for transplant to consider.  My husband received two kidneys from Wake Forest Baptist as a teenager.

You can transfer all your tests and records from your previous center to which ever center you choose.  Also, Wake and CMC have the shortest cadaver waiting lists in NC.  I realize NC is a large state, but you would have plenty of notice for a cadaver transplant.

[Rerun]

Hi Mike and welcome to IHD.  Bummer on the surgeon who left you high and dry.  Like he cared!  Really?

I hope you can get things straightened out.  This site is a great place to come.  Lots of people to talk to.

Rerun, Moderator    

[Mike_NC]

Thanks for the replies everyone....

I'd really prefer to stay local due to all the follow up care that will be needed if/when transplant comes along. I did look into UNC, Duke and Norfolk as recommended by my then Dr but Duke had just had a failed heart/lung transplant and nitpicked the reports and wouldn't accept me for transplant. I honestly can't remember what happened with UNC and Norfolk though. The center here, PCMH in Greenville,  has grown since 2007 and now has surgeons on staff to perform donor surgeries, so a fiasco like I went through in '07 can hopefully be avoided. There are also a few more transplant surgeons as well. I've been on the list since '07 so it's all a waiting game. My mother is beyond the acceptable age for being a donor. Her age was considered borderline in '07 so she's not able to be a donor.

No worries on me staying a squeaky wheel. My Dr and nurse are often caught off guard by my questions and input. I'm very vocal when it comes to my treatment. I wish more people would advocate for themselves rather than taking the word of their Dr just because he/she is a Dr. I told my Dr from the day I met him that I would be a challenge for him. I figured he deserved fair warning.

@bluesgirl ... nice to "meet" another spina bifida patient. I have met a few over the years so it'll be cool to trade stories/experiences.

Catch up with you all somewhere on these boards soon. I'm off to bed. It's 3 am here and I need to get my act together and get hooked up to my dreaded Liberty cycler. I SO miss my Baxter cycler.

[Poppylicious]

  Mike!

 

[galvo]

G'day Mike and  . 

[peleroja]

Welcome to the group, Mike.  Bummer about your transplant.  Never be afraid to rant: I think it clears up the blood!  Glad you found us.