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CodiefromTX
09-20-2011, 10:23 AM
Hello everyone,

My name is Codie, I live just East of Houston, Tx. I will start from the beginning, when I was 18yr. old I was diagnosed with something called ITP which is a blood disorder. Basically my symptoms were that i would bruis easy, a very low platlet count and was told that on hit to the head could kill me. That was almost 10 years ago. I got married in 2005 to the love of my life and even then i had no symptoms or anything. I then got pregnant and had a beautiful daughter in Dec. of 2009 and thats when some complications started. I was in the hospital for a week because they could not get my blood pressure down. After it was under control and I started taking medication for that everything seemed normal again. Later in the year around August-October 2010 my joints started hurting to the point where it hurt to do anything.

My husband tried and tried to get me to go see a Dr. but I would refuse until December 2010. I went to my PCP and was told that my thyroids were swollen and my blood work came back with my ANA as positive. So we asked what does that mean? She said I want to send you to a Rheumatologist. The Rheumatologist checked me out and did her own labs and the ANA was positive again. She believed I had Lupus but was just going to call it an autoimmune disease because of the insurance. I was immiately put on prednisone 5mg and then bumped up to 10mg which my body could not handle so it was dropped down to 5mg again. Then I was put prednisolone liquid, i think thats what it was called. Just 2 months after my diagnoses in late february of 2011 they ordered a kidney biopsy. I was nervous but because of the large amount of protien and blood in my urine they wanted to check out the kidney's. The results came back as stage 2.

We weren't pleased with the news but we knew things could be worse. My husband was going to every appointment with me because all this was new to the both of us plus he was researching everything he could about Lupus, print it out and bring it home and read it to me. After the biopsy the Renal Dr. put me cellcept, now to this day we don't know if it was a bad reaction or what but 2 weeks after my biopsy i was up all night unable to keep any fluid in me. Major throwing up and out the other end as well TMI I know. The next day i was feeling ok somewhat but then the confusion and being very weak i was rushed to the ER. They tried to draw blood but i was so dehydrated they could not even find a vain. When the Dr. finally came in he said I was very sick and according to the blood work I only had about 10% of my kidneys functioning. SCAREY. I was admitted immediately. My husband was talking to the Renal Dr. that was looking over me and he told him there was nothing he could of done for me at home because basically my kidneys were shutting down. He still feels guilty about not getting me to the ER sooner. But again we thought it was a bad reaction to the Cellcept because that was the day i was told to up the dosage. They also think that it was a misdiagnosis when I was 18 with the ITP, they think it was LUPUS back then too, but we will never know.

So I spent a week in the oncology department and there they started doing dialysis 3x a day for 3 days then 2x a day for 2 days and 1x a day for 2 days. Thats also when they started the cytoxan treatments. But after just 2 weeks my kidneys went from stage 2 to a stage 4. After i was released i stayed home for 2 weeks and my husband would stay and take care of me taking me to the dialysis place where i had to go 3x's a week 4 hours a day. I thank God it wasn't permanent for now. I take about 12 different medications, my bone density scan came back along with the blood work and i had no vitamin D in my body even while taking supplements. I just want to go one day without hurting, just one day where i can run around the house with my husband and daughter. I cry because i know i cant have any more kids and i feel like im fighting a loosing battle. My husband and family are always there for me but i just want to be normal again.

Thank you for listening to me rant on and on.

Codie from Texas

debbie-b
09-20-2011, 10:59 AM
Hi Codie,

Welcome to WHL.
Wow, you have been through alot. Where is your kidney function now?
I can understand, how a young mother like you, just wants to be normal. I am an old bag and I want to be normal again, but a young woman, needs it even more.
I am so glad, that you have such a caring husband, that makes all the difference in the world. Mine is very caring, helpful and understanding as well. Believe me, we are very lucky to have husbands like ours. There aren't to many of them around.
Anyway, I just wanted to welcome you to our family here on WHL.

Debbie

CodiefromTX
09-20-2011, 11:16 AM
Hi Debbie,

I am still at stage 4, this is what my papers say Chronic Kidney Disease, Stage 4 (severe) and that was 8-30-2011. I am still doing treatments of Cytoxan once a month. I'm going on my 7th or 8th tomorrow. I have read that some people split up because of diseases like this. We are very lucky to have husbands that will stick by our sides no matter what the circumstance. Thank you for welcoming me, It means alot to finally find people that are going through what i am going through.
Thank you again.

Saysusie
09-20-2011, 08:36 PM
Hi Codie;
I, too, wanted to welcome you to our family here. You have been through so much and are still dealing with some serious issues. I agree, you are very lucky to have a caring, supportive, and understanding husband (and family). I think that it is wonderful that he is learning as much as he can about your Lupus and how it affects you.
You are also fortunate to have doctors who do not dismiss you or belittle you and who are concerned with helping you to manage your symptoms and treat your kidney issues. Unfortunately, renal disease is all too common amongst Lupus patients and I am glad that your doctors are being aggressive in their treatment of your renal issues.
Please know that this place is filled with people who genuinely care about each other and we are dedicated to helping one another in any way that we can. I am glad that you found us and that you decided to join us, I hope that we are able to provide you with the help, comfort, information, and understanding that you need. Again...welcome!

Peace and Blessings
Namaste
Saysusie

magistramarla
09-20-2011, 08:53 PM
Hi Codie,
Welcome to another Texas gal! I lived in San Antonio for 17 years. The AF has sent us out to California for my husband to work on his PHD, but we'll be back in SA next fall or winter. We have so many members on here from Texas, we're going to have to get together after I get back.
You are lucky to have good docs and a supportive hubby. My hubby holds several science degrees and he is always researching these AI diseases that I have and sending me the info that he finds. Like Debbie, I'm a lot older than you are and all of my children are adults. I know that it must be much harder to feel so rotten and to have a young child to take care of. I feel for you there.
Welcome to our cyber family. If you have questions or just need to vent, let us know. We're all pretty supportive here.
Hugs,
Marla

tgal
09-21-2011, 01:01 AM
Hello from another Texan! I am on the other side of Houston!

I really don't have much to add to what has already been said but I wanted you to know that we are glad you found us!

steve.b
09-21-2011, 08:02 AM
hi from the other side of the globe.

i cannot add anything to what has already been said, but i did want to welcome you.

MisCamp
09-21-2011, 03:13 PM
Codie,
I'm new here too. And where I'm at on my journey I don't really know where to start relating to you. I can't really.
But I have a husband who I love with all my heart and is trying to understand this process; and I have the dream of children one day.
So even though I am not in your shoes exactly; I just wanted to offer my friendship and support.
We are both somewhere on the same road. Welcome. I hope we both find what we are looking for in this forum!
Misha from Alberta (CANADA!)

CodiefromTX
09-26-2011, 05:43 AM
Thank everyone for the warm welcome, sorry it took awhile for me to get back to ya'll but I had chemo and it seems like it's getting harder after every trip.