Life Of A Transplant Wife

One of the things I want to accomplish with my new blog is to connect with people that are going through medically trying journeys and understand the organ transplant process. We are a community. One where we seem to "get" each other, in ways quite honestly, other people just don't.

When Scott got "sick" I felt very alone. No one understood me. I was 17 weeks pregnant. We just found out, our little baby was A GIRL! And he didn't look sick. He didn't act sick. He didn't know he was that sick.....While we tried to tell friends and our colleagues our new reality, no one really understood what it was like. We were barely 30. We had just found out we were having a baby. We were still having fun as newlyweds....suddenly, we were this rare percent of the population. Who gets end stage renal disease out of the blue this young!? There wasn't anyone we could relate to.

I want people like us to know, you aren't a lone. We get it. And I want people that havent gone through things so though to be a little less judgmental. A little less demanding. And quite honestly, a little better of a friend.

THE JOURNEY
So here is how we found out Scott was "sick." The short version.
He woke up one morning with a popped blood vessel in his eye, so he went to an eye doctor. The doctor said your eye is fine, maybe it's caused by high blood pressure. He went to CVS to check his blood pressure and it was off the charts so high. So he went to a cardiologist. The cardiologist ran labs and the next day they called him and said he needed to do his labs again to make sure there wasn't error. He did them again, and not even 24 hours later, his doctor called me on my way to work and told me my husband was in kidney failure, his kidneys were functioning at about 3-5%, that I should go be with him and we would be admitted to the hospital immediately. I was STUNNED. WHAT DO YOU MEAN, I just saw him this morning and he looked completely fine.

I met Scott and we went to St. Luke's Hospital in The Woodlands, TX. In comes our new Nephrologist, he said, I'm going to run a test to see if this has been going on for a while, or if it just started...that night, the nurses kept coming in Scott's room.....Drawing more blood, doing other things to him, giving him more meds....I knew something very wrong....that morning Scott's Nephrologist again was like okay, let's do a biopsy. That ended up taking what seemed like an eternity...Turns out, Scott's kidney's were so far gone- they couldn't even find them the first time they did the biopsy....so they had to do it a second time....I remember Scott's doctor coming back in and telling me "I'm not optimistic about treating the current kidneys." WHAT! I about died. Here I was 17 weeks pregnant, my husband, the love of my life, the person that completes my world go round, and you're not optimistic about treating his current kidney. I was FREAKED. Long story short, he went in to the options of a kidney transplant.

Fast forward to Scott has two brothers. The first time, his middle brother was ruled out by high blood pressure. I was devastated. Being pregnant, they wouldn't let me test. I called and begged to let him re test his blood pressure and at first they said no. But I kept on them and they said his blood pressure was too high, it wouldn't change anything but sure, he can retest....turns out, he passed.....On to the blood test.

I remember being in Target, Scott called, his brother, the one they ruled out initially was a 100% MATCH. I squealed to the stranger next to me. I told them "My husband is getting a kidney!!!

YOU WONT BELIEVE WHAT HAPPENS NEXT
 That night I was so happy. Alllllll of my dreams, everything I had prayed for, every second of my life, came true. The next day, I go to my OB for a routine pregnancy check up on my way to work. I was just 36 weeks. They pretty much told me do not pass go, do not collect $200, do not go in to work, do not even go pack a bag. Go strait to the hospital you have preeclampsia. AGAIN I'm like WHAT! NO MY HUSBAND NEEDS ME. They said you really need to be in the hospital on bed rest....This is the very next day right after I found out my husband was getting his kidney, I went from being so happy to so upset....I wake up in the hospital a couple of days later and the doctor tells me my preeclampsia had become severe and they needed to induce me that day! Talk about a turn of events! That night, they started some meds and in the morning, the doctor walked in and said plan B, scratch the induction, you need a C Section right away and your next on the list to go in to the OR. WHATTTTTTT!!!!

I mean, we didn't have one thing washed, I didn't even have a car seat installed. No crib set up. NOTHING READY AT ALL.

Tiny little Aubrey Vargo Williams was born just 5.2 lbs. They actually had to use a vacuum during my C Section. It turns out it's a good thing I had her when I did, because her cord was small- she wasn't getting the nutrients she needed and her cord was wrapped around her neck 3 times. I saw her for a few minutes and they whisked her to the Level 2 NICU.

She graduated from there quickly and I finally got to hold and nurse my little miracle baby.

THE TRANSPLANT PROCESS

THE TRANSPLANT
When Aubrey was just 11 weeks old, Scott got his kidney transplant. Everything went great.

LIFE AFTER
Being immune suppressed, challenges.

WHAT WE RECOMMEND
Dr. Adam Frome- Nephrology- The Woodlands, TX (936) 273-0836
Methodist Hospital JC Walter Thompson Transplant Center. Houston, TX 713.441.5451
Dr. Osama Gaber- The absolute top transplant surgeon there is and Director of the Houston Methodist Hospital JC Walter Thompson Transplant Center. 713.441.5451




BEING A DONOR
The process

DONATE LIFE AMERICA. Donate Life America manages and promotes the national brand for donation, Donate Life, and assists Donate Life State Teams and national partners in facilitating high-performing donor registries;

http://donatelife.net

Register AT: https://registerme.org/

LifeGift  organization that offers hope to individuals needing transplants in 109 Texas counties in the Houston area, North Texas and West Texas. It is a founding member of Donate Life Texas, the organization that runs the organ, eye and tissue donor registry.

UNOS

MEDICAL JOURNIES WE SUPPORT
Martha Nell's Husband https://ourkindofcrazyblog.wordpress.com/about/ 
Stacey Ricks https://www.facebook.com/gimmeyourkidney/ 

PERSONAL VIEW ON WHAT NOT TO SAY
We had people get mad at us because we didn't call them enough, they didn't hear things from us directly, or we didn't invite them to hang out with us enough.


Have You Thought About...
Ummm yes! I spend 24 hours a day racking my brain on how to make things better. I've gone through 8 million pages of Google doing my own research and I've asked millions of questions. Please don't act like you have some great idea that will help.

Are You Sure You Need To Do This...
I seriously had people ask if we were sure this is what he needed. UMMM. No. I just thought it would be fun to put myself through all this stress. We've be

Why are you not doing this or that...
Please just stop. I'm exhausted and I'm tired of explaining myself to everyone. I've either already asked the question and I'm worn out of talking about it or I didn't ask the question and for whatever reason, I'm not going to.

INSPIRING OTHERS
Scott and his brother and kidney donor Blaine, shared their story with our local 10:00 News!

http://www.khou.com/story/news/local/2014/12/24/houston-man-donates-kidney-to-brother/20846127/

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