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Username: Lisasmith11692

Post Number: 2
Registered: 09-2007
Posted on Saturday, September 05, 2009 - 01:13 pm:   Edit Post Delete Post Print Post

Today I am pondering having Sarcoid and Lupus disease. My faith has stepped beyond spiritual. It all started when I went to visit my mother. She had a stroke and it was my turn to take care of her. Well I decided that I was going to treat her like a queen and make sure she did not want for anything.
1996 my mother fought to give me a kidney, thank you mom. she had a stroke April 2009 and July I was going to stay and help her out. She lives in NJ Atlantic City Pleasantville. After a few days I noticed my ankles swelling up and water pockets were hanging from the side of my feet. I said to my mother I think salt is in your water.
I began to buy water but I noticed I was retaining water even with the bottled water. My father said " we have a filter on the water in the frig". Than I wondered, how do you filter salt?
August 11, 2009 I returned home and I went straight to the doctor's. I saw my Reumatologist, Nephrologist and Primary Care. Both specialist had taken labs and the reumatologist called and said i was lacking vitamin D.
The next day the nephrologist called and said I needed to go up on my rapimine. The following week I was scheduled for a kidney biopsy, than steriod infusion, Procrit and now I am taking test for Sarcoid disease.
Wow, I have a whole new level of faith. I have been crying and praising at the same time.
My story goes like this today I am having serious pain in my bones, I hated being on steriods but now they're my best friend. If I talk about it I cry therefore I just talk in my head.
Today is the beginning of me sharing my experience and hopefully this will help someone who is having a hard day and we can become friends.
Username: Lisasmith11692

Post Number: 3
Registered: 09-2007
Posted on Saturday, September 26, 2009 - 04:17 pm:   Edit Post Delete Post Print Post

Well I am sorry I ahven't been posting but I have been having a hard time accepting my diagnosis and what has been happening to me. First I am allergic to the transplant medication Rapimune. Second I am back on Prograf and third, I have been experiencing serious bone pain and have been given steriods for what-ever-beens happening happening to my body.
Username: Lisasmith11692

Post Number: 5
Registered: 09-2007
Posted on Sunday, November 15, 2009 - 05:29 pm:   Edit Post Delete Post Print Post

Well what been going on with me is I am back on the transplant list but not on dialysis " thank you Jesus". As for the bone pain it has subsided but the muscle pain is still here. Well at the present time I am focusing on my Masters' Degree finishing up my classes; i have three to go!

Moreover, God has the last word!
Hostess Rise'
Forum Leader
Username: Risa

Post Number: 11100
Registered: 05-2003
Posted on Monday, November 16, 2009 - 01:03 pm:   Edit Post Delete Post Print Post

Hi Lisa

I am new to your blog. Sounds like you are accepting your life's journey well. It is never easy. How is your Mom?
Transplant Buddies flyer -share with friends and your transplant center by printing our flyer.

Cystic Fibrosis- dx at 2 years old
2nd double lung tx-05 JMH

Contact me
Kate/Jeremy's Mom
Username: Dixieluvinchik

Post Number: 111
Registered: 06-2009
Posted on Tuesday, November 17, 2009 - 12:14 am:   Edit Post Delete Post Print Post

Hey Lisa,

Today is the first time I've had time to sit here long enough to read.

You are going through all this and getting Your Masters' Degree? Do you have three more days of class, and you are finished?

God Has great plans for you! You don't have to keep stuff to yourself here, we will cry right along with you.

Give them time to find this blog, and you will get some great advice,
ideas, and the best friends!

Kate/Jeremy's mom
Forum Leader
Username: Ladydi

Post Number: 1997
Registered: 03-2008
Posted on Tuesday, November 17, 2009 - 10:12 pm:   Edit Post Delete Post Print Post

Sounds like you have lived through a lot, Lisa. Hope your wait on the list is a short one.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

I walk slowly, but I never walk backward - Abraham Lincoln
Forum Leader
Username: Dap1122

Post Number: 1218
Registered: 05-2008
Posted on Wednesday, November 18, 2009 - 08:22 pm:   Edit Post Delete Post Print Post


You have gone through a lot over the past number of months. But, you've come to the right place to talk about the issues you are dealing with.

You are correct, God does have the last word. It's God's plan.

May you have a short wait on the list.

God Bless
New blog/web page -
Heart Tx - 5/11/2007
Ohio, USA

Link to the Transplant Buddies Calendar -
Karen R.
Forum Leader
Username: Relivkaren

Post Number: 3840
Registered: 07-2007
Posted on Thursday, November 19, 2009 - 08:37 pm:   Edit Post Delete Post Print Post


I just read your blog. Goodness you are going through some tough times right now. I am sorry to hear that you are back on the transplant list. Please continue to share your story with us through your blog. Sometimes I think it helps just to get those emotions out of your head and on paper or the computer. We are here to help in any that we can.

God Bless!
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.

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