Getting the Gift of Life – Our Story

Today is a special day in our lives. It is a day we think is as important as any birthday or holiday. It is the 2nd anniversary of the day my husband received a 2nd chance to live. I am excited to share this story with you and hope you will read it all, It is long but a 9 year journey cannot be told in 2 paragraphs.In September of 2003 I was 8 months pregnant with our first child and 2 hours away from home on a business trip. My husband called to say he was having cramping in his legs and could not walk. He had put some all natural joint relief cream on his legs our friend Cristina gave us and now had tiny purple spots on them which he thought was an allergic reaction. He was on his way to the Doctor and would call me after.
The next call that came would set us on a roller coaster that we will never get off of. His doctor said he had no idea what that was and that he was admitting Chris into the hospital for testing. Knowing that heart disease ran in his family this was our immediate fear. They ran some tests as I headed back to Atlanta to be with him. That evening we saw 5 different doctors, including an infectious disease specialist. Let me tell you when you have 5 different doctors looking at you with a quizzical look and an INFECTIOUS disease guy come in you are completely FREAKED! We called a few friends to ask for prayers and one of them was Jenn, a pediatric nurse. We explained to her the symptoms and she said, “Oh that sounds like HSP, but it’s very rare in adults” little did we know that statement would be the common thread of our new venture.
Sure enough is was Henoch–Schönlein purpura or HSP. Chris contracted it from a bad case of a common ailment, strep throat. He was placed on extremely high doses of steroids which made him bloat and pretty much obliterated his immune system making him susceptible to any virus or illness around. 
On Thanksgiving Day 2003 2 months later our first son was born. The delivery was as by the book as it could get and was beautiful. Christopher Garrett Wilson 6lbs.7oz.

Over the next year Chris was put into the hospital 5 times. Each time it was due to dehydration from contracting some kind of virus because his immune system was so low or the HSP was flaring up. Every time my wonderful parents would drive 45 minutes 2 ways to pick up the baby and the dog or to take Chris to the hospital while I got the baby and dog settled at their house. We would never have survived this without them. After a 1 1/2 years of this roller coaster we decided to go to Emory for a second opinion. We met Dr. James Tumlin who told us that it was a distinct possibility that Chris’ Kidneys were being affected and he wanted a kidney biopsy. Sure enough we were told that Chris was in the 1% of HSP sufferers who developed a kidney disease called IGA. He has already lost 20% of his kidney function so chemo therapy was recommended.

For the next 6 months once a month on Friday Garrett and I would pack up Daddy and drop him at Emory. I would always try to put new funny pj’s in his suitcase, his favorite chocolates and movies to watch while he was there. We would then come home and make homemade pizza together and watch a movie. The next day we would pick up Daddy and bring him home where he would chill on the sofa from the chemo. Usually by Monday he was up to working 1/2 a day and by Tuesday he was more normal. The chemo he took was about 20% of what a cancer patient endures. The chemo was used to stop the spread of the IGA. My husband is self employed and through all of this never told any of his clients what he was going through. He runs his business out of our home so when he needed a nap he could go take one. After the Chemo we were good for 2 years. He was still on steroids and could get sick easily but the dosage was lower and it was not as often.

We had to wait after the chemo for 2 years to have another child and on August 19, 2008 Matthew James Wilson was born via c-section at 9lbs 14oz.

 
Chris was doing well with only a few minor bumps and we felt we were out of the woods, or at least I did. The journey so far had lots of ups and downs, frustrations, fear and anger. We had out new baby boy and were doing great.Garrett had been diagnosed with Sensory Integration Disorder and was going through Occupational Therapy so most of my focus was on them. In July of 2009 Garrett started Kindergarten at St. John Neumann Regional Catholic School. He had many challenges with his sensory issues and we were focused on helping him. Chris’ business, although hard because of the economy, was surviving. In March of 2010, Chris went in for his yearly checkup at Emory and a few days later our roller coaster would begin again. We were told that Chris had only 15% of his kidney function left and would need to be put on the transplant list. We felt like our whole world had been yanked out from under us and it had.Still in shock we began the process of telling friends and family. 
 
Almost immediately we had many friends and complete strangers call Emory to be tested to donate. Emory said they had never had so many people call for one person to be tested. The donor would have to be in pristine shape so none of Chris’ immediate family were candidates. One Sunday in Mass Chris had to take Matthew into the narthex because he was restless and not being quiet. Our friend Cristina was out with her child as well and they started to talk. Chris, Cristina, and her husband had been acquaintances when they all attended Catholic University and had not seen each other for years after graduation until we were married and started attending our local church. There they were when we attended the church one night and in that same narthex we saw each other and struck up a friendship. Chris asked her if she heard he needed a kidney transplant? She said. “No what does that entail?” , “An O+ blood type” Chris replies, Cristina says, “Well I’m an O+!” and the journey began.
 
We attended a class at Emory with both our Dad’s to learn about the transplant and how much it would cost. Due to being self employed and being stuck with a preexisting condition we were faced with a yearly insurance deductible of $10,000 per person per year. Garrett was in OT which was $325 per hour each week, in addition to Chris’ regular check ups so we were drowning with medical bills. Our parish, St Stephen the Martyr and the Knights of Columbus threw a BBQ fundraiser for us which raised the $10,000 deductible we needed. This is one of my favorite pics taken of us, as you can see Chris’ skin was yellow because his kidneys were unable to filter correctly.
 
 
 
Our friends, the Shannon’s, restaurant Three Blind Mice threw another wine tasting fundraiser for us as well. We had strangers who donated money to help us, we had teachers from my sons school who had never had him in class come to the fundraisers. These were just some of the few blessings we received during this trial. Chris was getting to the point that he would sleep all night and half of the day, he was very weak and basically had to shut his business down as he was a one man show. Through all of this we knew God was with us and that a kidney would be found. We always had that peace with us. That is not to say we were not scared. There were many nights I sobbed in the dark as I rocked Matthew to sleep wondering if he would have a Dad. I was exhausted from trying to keep it all together and make it look like everything was fine. This was however more for my sanity than for anyone else’s.
 
Cristina called us with the news that she had been approved as a donor but was second in line, there was someone ahead of her. We learned that the first donor, Patricia,  was a stranger that had heard about Chris in a church prayer group at Garrett’s school. In a turn of events when Patricia was going through her last round of tests it was found that she had a thyroid condition that could have killed her in her sleep. Because of her selflessness Chris had inadvertently saved her life. This was a cold reality for us. We were putting someone else’s life in danger to save his. In late September we were told everything was finalized and Cristina would be Chris’ angel of saving grace. If you ever wondered if God works in mysterious ways here is your answer. 
 

A week or two before the surgery our church held a special Mass for the two families. Families and teachers from Garrett’s school came, friends and family all gathered to pray and celebrate this special event. My lovely friend, Angelle, sang Ave Maria which made us all cry. On November 12, 2010 family and friends all gathered in the surgical waiting room at Emory University Hospital. Chris’ business is promotional merchandise for companies and individuals so he had t-shirts made for he and Cristina.

They say remove from here and place here. As scary as this was you could feel the presence of the lord in that room. Everyone was a peace and even joking and laughing. The new joke is that now Chris is Cuban/Irish. The surgery went without a hitch. My first breakdown was after seeing my husband in recovery. A mixture of relief and fear at seeing him in such a fragile state. When we got them to the hospital rooms I went to check on Cristina, I walked in her room and her first questions was, “How is Chris?” I said, “He’s turning pink!” and we both hugged and cried in relief. I was amazed in the next 2 weeks at how different I felt. A wise friend told me, “You don’t realize how much stress you are under, you will see it when this is over.” She was right it was amazing the sense of relief when the Dr. called us in the waiting room to say it was working fine.

We are now 2 years later, Cristina is fine and Chris is doing great. In our common theme of being in the very small percentage that this can happen to, last Thanksgiving we were told the kidney disease was attacking his new kidney. The good thing is that they caught it early enough at and at his yearly biopsy last month they told him it was under control and was receding and we are doing great. I have come to realize even though the surgery is over we will always be on this roller coaster and you never know what the next hill will bring. Chris was able to start his business back in 2011 and had to start from scratch. It has not been easy for him but he has proven to be the strong wonderful husband I married 12 years ago. In this economy he has fighting the uphill battle and slowly but surely winning the race. I am so proud of him. It has tested the boundaries of our marriage and our friendship and has not been easy but through love, respect, and commitment we are surviving.

I don’t know how you ever thank anyone for such a gift, you really can’t. Cristina is so humble about the whole thing that she never expected to be. When I told her last year that the kidney disease was attacking the new kidney and Chris was afraid to tell her she said to me, “I don’t know why? That kidney is his, it was not longer mine a long time ago!” She is an amazing woman and I can’t wait share with you her side of the story tomorrow.  It is on audio so you will hear it strait from her.

The best thing of this hard journey is that we really have received more blessings out of it than hardships. We have been able to see the beauty of the human spirit. The love of sacrifice and giving. The support of family and friends and the kindness of strangers.

If you are able I hope you will consider the opportunity to be a live donor. You can find out more information on live donation at the National Kidney Foundation.

If you would like to hear his donors story click through here
 

© 2012 Miss Information.  ALL RIGHTS RESERVED.

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Kelley Wilson

I love to cook, drink wine and craft. I live in Georgia with my husband and 2 sons. My goal this year is to become a better photographer and spend more time with my boys,

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Comments

  1. Anonymous says

    There's so much love in all of your words, Kelley. What a gift to be able to hear your story. Thank you for sharing it. Tina

  2. says

    Thank you for sharing your story. Your family has overcome so much, and I know you are stronger because of it. What a blessing that your husband found a kidney and that he is doing ok! I pray that things will continue to go well.

  3. Anonymous says

    To borrow the words of others…WOW!!! When you were growing up I knew that God had an incredible journey planned for you. It's probably not how you would have planned it… but there is no doubt from reading between the lines and seeing the love and the wisdom gained from all of this that you are thankful for His plan. May He continue to use you to minister to others… this really helped me as I try and help my husband.

  4. says

    What an incredible God-story! Thanks so much for sharing. I know God's grace was very evident to you during this dark journey. Praise God for all He's done for you. These kinds of trials sure does grow one's faith huh? Sweet blessings on all of you – Cristina too!

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