View Full Version : New to the Site My names Nicole

12-04-2012, 12:51 PM
Hello My names Nicole and i just found out i have Lupus Nephritis stage 4 i also just recently delivered my newborn son Liam who is now a month old today I had to have hims at 29 weeks due to my kidneys which is how this journey for me began before pregnancy i had next to no symptoms that i thought was anything serious when i got pregnant by my 20 some weeks i started swelling up from my feet to my face and high blood pressure dr got concerened with my blood work and urine told me to go to the hospital i went to the hospital november 2nd and they flu me out of town i had my son november 3rd they said i had preclampsia and sever Toximia which would go away after birth but swelling continued and didnt get any better they pumped me with magnesium to get my Kidneys to flush the fluid out but my kidneys reacted differently to the medication and almost overdosed and all the fluid just remained under my skin my legs and stumach grew bigger and bigger i couldnt move i wasnt able to see my son for the first week or so of his life i was so swellled my vains wouldnt work they kept collapsing so they tried an artline eventually that wouldnt work anymore so they put in a picline finally that worked and lasted for about 2 weeks i remained in the hospital for 3 weeks and a few days doing treatments and trying to find out what it was causing this they wanted to do a kidney biopsy but my blood count kept dropping and was nervous of me bleeding out almost had to have a blood transfusion twice Finally got to have the kidney biopsy and it deffinetly said i have Lupus Nephritis iv been on medication for it for almost a month now as far as i know right now the lupus is still progressing it hasnt settled down at all and eventually will prolly start different medication some form of chemotherapy im still trying to wrap my head around all this and still trying to understand what exactly is happening im glad tho that i found this site cause reading everyones story helps make it a little easier to accept the fact that i have this disease and im not alone.

12-04-2012, 07:46 PM
hi nicole, and welcome.
it is usual for it to take a little while to get the right balance of medication.
and as your lupus becomes quieter or more aggressive....
you may have to alter medication dosages.

once the doctors know more about what you have, and where the lupus is trying to attack, they will be able to explain more.

12-05-2012, 06:48 PM
Hello Nicole..I am Amanda and I am new here myself..I am so sorry abt your lupus nep..i know its a shock and it does change your life believe me I know..Ive had lupus nep before too..I have systemic lupus which is same as u have..I am a registered nurse and know abt this..Which in a way makes it more difficult..Being on the other side of the fence so to say. I am so glad your baby is ok..I will pray for your healing and hope u feel better soon. Im here if u need to talk..

12-06-2012, 10:42 AM
Hi Nicky; Welcome to our family. I am sorry to hear that your symptoms are causing so much problems. Since each of us suffer differently from this disease, there is not standard treatment regimen for any condition that we suffer from due to this disease. So, it is quite normal for you and your doctors to have to try several medications, in different doses, in order to find a regimen that helps you. I do hope that you find relief soon, in the meantime, we are here to help you as much as we can. Again....Welcome!

Peace and Blessings

12-07-2012, 02:09 PM
Hi Nicole, just to say "Hi!" and welcome to the WHL forum. Read all you can on the subject, being careful of the source of info, and ask questions of all your doctors. If they don't explain something to where you can understand, have them try again. If you are like some of us, you'll have to start writing things down in order to remember them, or start using your "smart" phone, to help you remember important points and symptoms for the docs. Wishing you well, praying for good health.