It was early February, 2010 around 9:30 AM. I was a 23 year old student at the University of Washington living a normal college life. I received a devastating call that would change the course of my life for the next year and four months. The person on the other end alerted me that my beloved Uncle has passed from terminal cancer. As I wiped my tears from the news, a second call came in. It was the University of Washington Medical Center this time. My Nephrologist, or kidney doctor, explained that he believed I had a different kidney disease than what was thought for the past 23 years. It was something worse that could reduce my kidney functioning. He told me that I would need another biopsy as soon as possible to see what was happening on a cellular level. I remember feeling anxious with this news. So the next week I went in for the biopsy and came out with an undesirable result. The doctor informed that I had something called FSGS, Focal Segmental GlomeruloSclerosis. It is a disorder in the blood-filtering parts of the kidney called the glomeruli. I was told that I always had this disease and that it had disguised itself as Minimal Change Nephrotic Syndrome (which was what I thought I formally had). My kidney functioning was unharmed before and now it was functioning at around 40%. At this point I remember feeling scared and wondered what would be in my future. Would I be like my mother? Would I need dialysis one day?
My mother had a kidney transplant when she was only 15 years old. Her sister gave her a kidney and now she has been living life for over 32 years!! Virtually unheard of. I always knew there could be some sort of genetic link between my mother and I in terms of kidney disease. Just how closely related the diseases were was quite a shock though. I was told by the doctors at childrens’ hospital that I would never need a transplant or dialysis; unfortunately that wasn’t the case. I knew it was going to be a long, hard road and that I would be tested. I reminded myself to stay positive and try to make the “most” of it. It was difficult for sure but I told myself that I would learn things and grow from this in ways I couldn’t have grown otherwise.
I should preface all of this by explaining that about one month before the phone call that started it all, I experienced God for the first time ever in my life. I had always heard people say that they had, but I had not. The Lord gave me an unexplainable meeting with him which allowed me to feel presence. I couldn’t understand why it was all happening. I questioned it at first because I hadn’t done anything spectacular or worthy. Then what do you know, about one month later to the day, all of this unfortunate news came barreling in. Then I had a light bulb moment; I knew why I had that experience. The lord was showing me I was going to be okay and that he would protect me. It was so moving and eye opening to say the least. If I hadn’t have had that experience to assure me, I don't know where I would’ve or could’ve been. I felt so comforted and that’s what has sustained me throughout this journey. Everything made sense now. With this new shield of hope, I knew I would be stronger and could use this experience to recall on when I needed it most.
So now the roller coaster really had begun. With everything that had transpired, I started to feel that the UW medical center was a second home. I knew staff members on a first name basis and even got used to blood draws. What a far cry from the days I would have the lab tech count to 3 before poking me! I can’t be bothered anymore! :) As each appointment passed, things grew more serious. Numbers that should’ve stayed down, went up, and vise versa. It was very hard emotionally for me. My routine checkups morphed into therapy sessions due to my sensitivity towards the situation. I really relied on family and good friends to get me through those times. My boyfriend always knew when it was an appointment day because my whole demeanor would change. It was not only a trying time for me, but also for my loved ones.
The day finally came when the doctors revealed to me that I would definitely need a kidney transplant in the future. They couldn't tell the exact trend of the disease to know when I would need that. The fear of the “unknown” was a tough. My solution was to just simply pray for God’s will to take course in my life and to trust that he would take care of me. I was a young person coasting through life, feeling invincible and this happened. To some degree I probably took advantage of being healthy and feeling “normal.” I’ve learned now to really appreciate life and all the little things that make it so great. I know that I am ultimately better since I’ve had these experiences. It has shown me a perspective that I may not have seen otherwise.
I remember the day I was eligible to be listed for transplant. Once a person reaches 20% functioning, they are eligible to be listed. It was hard to accept yet also a good thing because I knew it was the start to getting better. I was then financially cleared for surgery and ready to look for a donor. I met my transplant team; which consisted of a transplant coordinator, a surgeon, nutritionist and social worker. They all did their job in preparing me for the long road ahead. I was told me watch my salt, potassium and phosphate intake. This was a tall order for someone like me!! I love salty, unhealthy foods! I was also given the phone number to call if one wanted to see if they were a potential donor. They warned me that if I didn’t find a living donor, that I would have to wait on the United Network of Organ Sharing List for approx. 3-4 years. The amount of time one waits, is dependent on their blood type. I knew I really didn’t want to be waiting that long so the search began.
My family knew we would have to cast our net wide in order to save my life from being on dialysis for years. We knew we only had anywhere from 3-6 months before having to start dialysis treatments to get the word out. My loving aunt Swedini crafted an email mass forwarded it to everyone we knew. There was no room for shame, embarrassment or pride. I just had to fire it off and not care what anyone thought of me. It was a matter of life and death. Remembering that my aunt was a donor herself, she wrote from the heart about her experience with giving and about my condition. The amount of support we received was overwhelming. Everyone said they were praying for us and some even wanted to get tested to see if they would be a match for me! I didn’t even know some of the people that wanted to get tested for donation! I was so overjoyed that people were willing to not only support me ,but help save my life too!
I just want to take this opportunity to personally thank everyone for all of their prayers and help. Thank you from the bottom of my heart to all those who called the number and wanted to save my life! It means more than you could ever imagine. I’m thankful for all of you. I’m so blessed to have so much support from my wonderful friends, loving family, boyfriend and my angel, my donor.
At this time, it felt like we finally got the wheels turning. A few people turned out to be the right blood type and could move forward. I was grateful to get to this point. I knew God was helping me every step of the way. I laid awake certain nights just wondering who my donor was going to be. Was it going to work out? Would I wait long? Who knew. I forwarded the email to my friend and coworker, Jeanna. She forwarded the email on to a friend she went to high school with, Kyle. I knew Kyle because his wonderful children went to the school that I taught at. Kyle then forwarded the message onto his sister, Kara. For some reason Kyle felt comfortable passing on the email to her even when I didn’t even know her. That was a miracle in itself. He said he felt she would do it, which was a stunning notion for most. It was such a foreign and crazy thought to think someone would give their kidney without even knowing me!! Low and behold, we hear from Kara! She was excited and willing to be tested and to boot, she was the right blood type!!! This was a real real miracle that gave my family and I so much hope! She is my whole family’s angel now and forever!
All I wanted to do was to meet her and thank her. Just to note, her entire family wanted to help. Kyle and his wife Lindsay both wanted to help but they weren’t the right blood type and even someone in their family, Christy, wanted to help too! There was some genetic goodness build within this family!! I thought to myself, “What if everyone in the world were like this family, it would be a great great place!” What a blessing this all was. When I met her, I instantly hit if off with her. She was so warm and easy to be around. She was a person with good morals and standards; someone worth building a friendship with forever. She is such a strong and loving person. I hope that everyday I can become more like her. During our three hour first meeting, we laughed, we had serious moments and just chatted about real life stuff. It felt like we had a lot in common and had similar outlooks on all sorts of things. I left the coffee shop that day hoping to build a stronger relationship with her in the future. I was so excited to keep moving forward!
Kara has been so diligent in doing her part in all of this. She has had several appointments and tests. She has kept me updated every step of the way! She even suggested we blog and here you go! I also want to take the time to thank her husband Shane. He has been so wonderful in the process as well. It would be so hard to do any of this without his support and he’s been great! I’ll never forget thanking him for being there for us in this and for supporting Kara, and his response was, “she does what she wants!” I laughed and laughed. I’m so lucky that Kara has such a great family who is so involved and helpful. Her children are also sweet. She has a 3 year old daughter who is also excited about sharing her mommy. I couldn’t ask for a better situation, really.
After we found out Kara was a blood type match, we had to do this test called a cross match. It’s simply where they check our blood against each other to see if there’s any antibodies. It would see if our blood is compatible and if our bodies are. This test would HAVE to come out negative in order to move forward. If we got a positive cross match, it would all be over with Kara and it would be back to the drawing board. It was a lot of pressure while we waited for the cross match. Each day that passed with no answer, I grew more anxious and nervous. It was hard knowing that this cross match is basically a crap shoot! No one could predict the outcome. If I ever wanted a crystal ball, now was the time! We finally got the call and I couldn’t believe it!!! IT WAS NEGATIVE! I couldn’t have been happier! I was seeing rainbows!! My faith was overflowing now. I felt like a runaway train, but in the right direction this time. The Lord proved himself yet again.
Now it came down to a few more tests I believe. Kara went in for a scan so that the doctors could examine her kidneys to see if there were any nerves wrapped around the organs. She passed that test with flying colors too! Everything was working out seamlessly. What inspired me was Kara’s unwavering, positive attitude throughout it all. She restored my hope when I needed it most and her courageous approach also gave me strength. She is so sure of it all which also aided me in more ways than one. I’m so lucky and happy my donor is her!! She is the right person to do this with, and now I know that. everything had fallen into place beautifully. Which brings me to the next miracle on the list. At this stage we found out that there was a month wait period that is mandated to give the donor time to make an informed decision. Although Kara informed the hospital that she didn’t need this time, it was forced. This was fine and needed to be accepted. Once the time elapsed, we were then able to get something on the books with the hospital, if they put one last stamp of approval on us.
We waited to hear back to see if they gave us the final go ahead. It was May third, my Birthday, and no joke Kara contacted me with the good news! God gave me the most unforgettable and best Birthday gift ever! She explained that she found out that very day that we got the approval for surgery and that it would take place on June 1, 2011. It was less than one month away!! No one could anticipate it being so close. I remember I cried on the phone I was so thrilled for a lack of a better word. What an uncanny thing to find this out on my Birthday! It was a definite miracle. Ever since then, it’s been a count down to the start of a new lease on life. Kara and I regularly talk about the surgery date and how many days are left. I love talking to Kara. It’s so awesome that we don’t only feel we can talk about the surgery but also are comfortable to discuss anything really.
So a waiting game it was. Today is May 21, 2011. Eleven more days to go. I feel like I count the hours! I’ve been doing peritoneal dialysis since May 2, 2011. I’m quite blessed that I won’t have to do it for long. Now it’s all about staying healthy and infection free until the big day. In the beginning of May, I quit my dream job working at the Cottage Montessori school. Working with all of the young children was too much of a health risk for me; for if I caught an infection, it could change the outcome of one last cross match they may preform. If that cross match were to change, the surgery could be off. It made me sad and broke to leave, but it had to be done.
The anticipation is killing me but I’m trying my best to be patient. I have good days and not as good days while on dialysis. Sometimes I hardly feel the dialysis and other times it verges on excruciating. It’s an odd thing to have a tube coming out of my stomach, but when I know it keeps me alive, I don’t have a problem doing it. It’s been a bit of a lifestyle change having to dialyze 4 times a day at 45 minutes per session or exchange. The four times must be spread out evenly over a day. They suggest doing it at breakfast, lunch, dinner and bedtime. It feels like I’m doing it all the time, but it’s easier to do knowing there’s a light at the end of the tunnel. Sometimes I feel tired and other times normal. It’s really one day to the next; or better yet, one session to the next! I always say, I feel so bad for the people that have to do this for years and years before they get a transplant. I can’t even imagine. It’s no quality of life or way to live and that’s why I’m so thankful and grateful to Kara for sparing me of it all. It would be so difficult to live a normal lifestyle while doing this four times a day!! There are some other options, like a machine that allows the patient to do 3 out of the 4 sessions while sleeping. My team suggested I not learn that process because surgery was so close; that it just wasn’t worth the time. My boyfriend lives in Seattle and all of my appointments are in Seattle too, so I commute often which also comes with its own list of challenges. You make things work though when you need or want them to. It’s also darn near impossible to have a baby while on dialysis too. I couldn’t even wrap my head around the idea of not having kids one day. Kara was giving me a chance to have that opportunity one day.
It’s funny looking back. I feel like I already have grown so much as a person and we haven’t even had the surgery yet! I remember being so vain and worrying about having a tube in my stomach or looking like I’m pregnant because of the fluid I’d have to carry in my belly for dialysis. Also worrying about needle pokes and the hastles of doing a 24 hour urine collection, but in retrospect, it all needed to happen to get me where I am today. It was all little things that were really no big deal when you get used to it. I will definitely appreciate my life more than I ever did. My relationships have made it through all of the turbulence which is sort of a nice test. It shows how strong they all are. My relationship with the Lord has grown and continues to grow everyday. I have more trust and faith now too. All in all, it’s worked out pretty good so far when all things considered. Now I’m just hoping for the surgery to be a success and for the aftermath to go just as smoothly. I’m not scared for surgery as of now; I know I won’t die. It all needs to happen for me to get a real life back so it’s easy for me to go under the knife. It’s Kara that’s the strong one. Shes CHOOSING to do it; I HAVE to do it. There is a difference which makes her truly exceptional. As I’ve learned, there’s not a lot of people out there like her, willing to help others like this. I don’t have any siblings but now I feel like I’ve gained a sister forever. It’s like the sister I always wanted and never had. She’s such a good role model for me too. I’m really fortunate. I also get to have a relationship with her loving family who are so kind and welcomed me with open arms.
Not too much longer! Until next time.
~Cherina
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