Brandy- new to board

[brandywine]

I am 34 and I live in Northeast Florida. I was diagnosed with IGA Nephropathy in February of 2009. I had been living with blood pressure of 180/120 every day for 10 months. My family physician sent me to get a stress test and everything. Couldn't find anything, just kept working with meds, which as we now know required a healthy combination, and it took being in a hospital for several days for them to find the right combo.
My creatinine was around 2.2 at diagnosis, and has fluctuated all the way up to 2.8, but seems to be a stable 2.5 right now.
I have been feeling just awful and I'm thinking it's the PTH, since the doctor just put me on Zemplar after seeing my labs.
I currently take 20 mg Lasix, 150 mg Toprol, 300 mg Avapro (Lisinopril gave me a horrid cough), Caduet 10mg/10mg, Now the Zemplar, and two sodium bicarb pills. I have been giving myself a B12 injection weekly which seems to help, and iron supplements inconsistently.
My edema is through the roof these days. I can only wear this one pair of ugly shoes. 
On top of all of this, I have psoriasis and psoriatic arthritis (successfully treated with HUMIRA), and the kidney disease was actually discovered by my rheumotologist through regular bloodwork. Lately my mouth is dry as a bone at night, and my eyes are dry. He thinks I may have Sjogren's Syndrome too. Somebody shoot me! Seriously? FOUR auto-immune diseases? I'm 34. I'm too young for all this.
Any ideas on how to get to the core of my problems would be great.
I know that dialysis is just around the corner, and I joined because I need the support, and your family and friends get sick of hearing about it-especially when you LOOK just fine and dandy.

[Dianejt]

Hi Brandywine,      to IHD. Hope you get to the core of your problem.

[RichardMEL]

Welcome Brandy! Yes, you do look just fine and dandy to me!!! 

You've certainly been handed quite a varied plate of things to deal with haven't you?!! I don't have any answers unfortunately. One thing though - your creat isn't THAT high which is a positive. Do you have a measure of your eGFR?

The other thing that must be so difficult for you is that it seems all of this has happened in a fairly quick period of time and it's a lot to handle and come to terms with in a short period of time.

I don't have any medical answers for you unfortunately, but you ARE in the right place for support and understanding!!!

Hopefully we can help you as you navigate the choppy waters you seem to be in.

 

[Marsh]

Welcome to the forum from another Floridian!!

[Bajanne]

Welcome to our community!  And a special welcome from your Caribbean neighbour!  We have a place here in the British Virgin Islands called Brandywine Bay, not far from where I live.  I have always loved that name (and it is a beautiful area too).  You have been given some real challenges, but I sense that you have a fighting spirit and that makes the difference.  So glad you found us.  This is the place for information and real support.  Please consider this place your family    Take advantage of all that the site has to offer.  Keep reading and keep posting.





Bajanne, Moderator

[Brightsky69]

 

I have IGA alos....welcome to the boards.

[peleroja]

Welcome to the group.  Lots of good information and friends here.  Come on back and post often.

[Beth35]

I have IGA Neph as well.  I found out through regular bloodwork though my pediatrician at 15 years of age.  It took me about five years before being sick enough to be on dialysis.  I was on dialysis for five years and then I got a transplant.  My transplant has lasted me for about eleven years now but my health is starting to decline again and I will be needing dialysis again soon. 

We are on a lot of the same meds.  LOL!  Willl you be getting a fistula?  I just had my second fistula operation as the first one closed off about five weeks after the surgery. 

I know it's hard to be young and be sick.  Hang in there. 

[galvo]

G'day, Brandywine, and .

[brandywine]

Thanks so much for the posts. It's nice to know that I really have a network here to lean on.

[Rerun]

Brandy we don't allow fire arms on here, but hope this helps....

                                                         

I'm so glad you found us.  Yes, when friends and family don't "get it" we do.  We understand and we can laugh at things because we do understand.

Glad you joined.             

Rerun, Moderator

[looneytunes]

Hi Brandy and welcome to IHD!  Lots of great folks on here who will listen (read), offer encouragement, answer questions or just "be there" for you.   

[mogee]

Hi Brandy.  I too have IgA glomerularnephritis and have been on dialysis since 2004.  I was diagnosed six years before I suffered ESRD, and was fortunate to have had an amazing nephrologist who helped me manage my CKD.  I am on home nocturnal hemodialysis, and recommend it to anyone facing ESRD.