Hello from Chicago

[cattlekid]

Hello everyone! 

I am so happy that I have found this message board.  I am new to dialysis and am looking for as much real-life information as possible.

I was diagnosed with IGA Nepropathy in 1999.  My kidney function has been very stable up until sometime between September and December 2010.  In that time, my kidneys failed to the point where my creatine was up to over 9.  The creatine was going back down but not enough.  I had a catheter put in on January 25th and started dialysis that day. 

I can't believe how much better I feel now that I am on dialysis.  I have a transplant intake appointment scheduled for February 28th and my neph says that I should be a good candidate as I have no other health issues other than the IGA Nepropathy.  I also have 25 aunts and uncles and 20 first cousins so I should have plenty of choices for live donors, if they are willing to be tested. 

My only complaint so far is that I really have no information to go on from the dialysis center as to what I should/shouldn't be doing.  From what was explained to me in the hospital, they should have social workers, dietitians etc.  Well, so far I have only seen the techs and the clinic manager.  Should I be asking when I should be meeting with the social workers and dietitians? 

I look forward to learning a lot here!

[galvo]

G'day, cattlekid, and  . You'll get plenty of good advice, here.

[RichardMEL]

Welcome cattlekid! Glad to have you with us!!!

I am surprised that your unit has not scheduled at the very least a visit from the dietician (or that your neph hasn't gone through stuff you need to know also). Diet is very important for a dialysis patient (Sorry, have to limit those chicago style pizzas! ). Obviously it depends on your exact situation, labs etc but you do have to be careful with high potassium or phosphate foods, calcium etc. I am surprised that even though you are only a few weeks in to D this hasn't been gone through with you because it is very important.

Have you asked your unit's administrator about this? It's great you WANT to know what you NEED to know and want to get as much information as possible - information is power - even if it's power to control as much of your treatment and options as possible. I say get on them to schedule this stuff, and if they won't help then put pressure on your neph because this kind of stuff is very important - and don't rest till your questions are answered!

Anyway again welcome to IHD! Good to have you wish us!

 

RichardMEL, Moderator

[paris]

Welcome cattlekid.  You just found the best site for information, help and support.  Ask any questions - someone here will have the answer.  This is a great group and always willing to help someone out.  No one can understand this disease as much as another kidney patient.   Post often and ask lots of questions.   Welcome to IHD




paris, Moderator

[Chris]

Hello, and great name since it has a Chicago tie.
 
Yes, I would ask when you will meet them. They may not even know that no one went over anything from your doctor, any hospital visits, etc.
 
In April the NKF of Illinois is having a seminar for pre and post transplant patients, with some dialysis information. Most of the transplant centers in Chicago will be there were you can ask some questions and get feed back. Also you can network with others to ask questions. I got the email last month and I think it is April 7 (could be wrong, but it's on a Saturday from 8:30 am to 3:30 pm

[cattlekid]

Hello everyone and thanks for the welcome!

Well, I guess I spoke too soon on the visits from the dietitian etc.  Yesterday, I met with the dietitian and the medical director of the center.  Got everything I needed to know on the diet, good to hear that I was pretty much doing everything that I needed to do.  Only things I need to do is ditch the low-salt salt (not that I used it that much anyhow) and check to make sure that my beloved Clif bars don't have too much phosphorus. 

Medical director doubled up on my blood pressure meds and also increased the amount of fluid pulled off for each visit.  Of course, they tried pulling off 4 kilos last night and I got nauseous at the very end so they had to stop early - first time that has happened.

Also, thanks for the info on the transplant seminar - I'll see if I can fit that in my schedule.

[looneytunes]

Hi Cattlekid and so glad you found us.