Mommy's Sharing a Kidney

4/1/11

Day 7 of 10 to 14 day wait for the results of our crossmatch test and I am going crazy. How do people wait? I usually take pride in my patience, but I guess that does not apply to this situation. I can’t imagine if the tables were turned and I was the one receiving the kidney! How does Cherina do it?

Last Sunday I did my first 24-hour urine test and my 3 year old walked into the bathroom while I was filling the toilet hat. I guess most people would have locked the door, but at least I shut it! She asked me a zillion questions about what I was doing and why and she wasn’t satisfied with half answers. I explained everything to her – Miss Cherina is sick, and mommy is seeing if she can help ... She has bad kidneys and I have 2 good ones and I can hopefully share one with her. We will have an operation and the doctor will give her one of mine. I will be tired for a little while and have to stay in a hospital for a few days, but she can come visit. She wanted to know everything! Where are your kidneys? Why do you have 2 if you only need one? Why did God give Miss Cherina bad kidneys? How does the Doctor take one out of me and give one to her? Will I be gone for a little while? When will she get to see me again? Will it make Miss Cherina all better? She asked question after question for at least five minutes until she was satisfied. She was very focused on my answers and repeated things back to make sure she understood. Finally, she said “mommy, it is good to help people that need our help.”

That night we went up to (I say up to because they live next door) my in-laws for our weekly family dinner and Ainslee told her aunt that miss Cherina was very sick and God gave mommy 2 kidneys so she can share one with her. My sister-in-law came over to me in tears repeating what my special little three year old had said. If nothing else, this whole experience has allowed me to teach my daughter about the importance of sharing.

4/8/11

I guess this entry should start with Wednesday’s email to Kami. I couldn’t take it any longer and made up a reason to email. Since I botched the second 24 hour urine test on Sunday by accidentally going pee in the toilet – come on Kara! – I needed to figure out how to clean out my container. Soap? No soap? Wash it in the dishwasher? Bleach? Does it need to be sterile? I emailed Kami to ask how to clean my container and she said:

 HI,

yes, I did get the first one. Your HLA is still in process but the initial results look good. I called the lab yesterday to see if you did your second urine.

If you can just rinse with hot water and air dry that would be fine.

Once labs are complete and you do the second urine, I will forward your chart for review to Dr. Kendrick.

Thanks for letting me know.

Kami

Did you see the second sentence in the first line? Blah Blah Blah initial results look good! Woo Hoo! Look good, I like look good. To me, any sort of optimism from a medical professional is a really good sign. I don’t think they spread optimism easily.

So, since the tests are looking good, I started the second 24-hour urine output test on a Thursday and did it while at work. I carried around a red soft-sided cooler with a 3 liter jug, an ice pack and a toilet hat in a plastic sac. Everyone noticed. I am split between two schools, and the first school’s staff bathroom is a single toilet room, so I left the cooler in the bathroom and people thought it was all sorts of things. About 20 bathroom jokes later, I headed over to the other school where it is a staff/student bathroom so I could not leave it there. I carried the cooler off to the potty in the afternoon and ran into one staff member who started laughing at me bringing in the cooler. We talked for a few minutes, then realized another staff member was in the bathroom too and she joined our conversation. Walking out of the bathroom a male teacher asked what I was having for lunch and one of the office secretaries said it was my spare kidney. She had no idea. I told her it was my pee to see if I could donate a kidney, and she was shocked. So after explaining the whole story to her, about ¾ of the people I work with know about my plan to donate.

As I was leaving school I decided to go and talk to one of the teachers at the end of the hall who hadn’t seen my cooler in action and tell him about my journey so far. I walked into his room, sat on a table across from his desk and asked if I could share my good news. I started my story, from the initial email until now and by the time I was finished he had tears in his eyes and said that his good friend is scheduled to have a kidney transplant on April 29. He said they have not heard from a donor’s point of view, and no one has expressed any positivity around his kidney disease and upcoming transplant. No one has heard his brother say that he is excited to be able to give the gift of life – that he is donating out of anything other than a sense of obligation to his brother. None of their friends had offered to donate, and no one had any sense of hope. My story allowed him to see kidney donation in a different manner. To see it as a gift of life. He was moved beyond words and it was, again, a sign of conformation to me. I am doing this for a reason; right now it is looking like many reasons. My purpose in donating to Cherina is bigger than my own selfish reasons of wanting to say that one time I did something great. God’s plan for me in this is bigger than I know, and reaching farther than just my little family and hers. We shall see where it takes us

~Kara

First Donor Evaluation Appointment at UWMC

3-26-2011

Yesterday was my Evaluation trip at UW. I had six appointments on the docket, and I was prepared to be put through the ringer. I had initially planned on going myself, since I had expected it to be a long and boring day in the hospital. In the time between setting up appointments and actually going I had received a packet in the mail asking for the person who will be caring for me to attend the meeting with the Donor Advocate as well, so my husband Shane decided to come along.

On Wednesday Night, 2 days before the appointment, I received the following texts from Cherina:

“Hey I was just thinking about you today. Thank u so much for taking the time to go to uwmc on Friday :) hope all goes well.”

“I’ll call you sometime this weekend if it's okay to chat? I'd like to plan dinner. My parents want to meet the person that’s willing to save my life. Only if u r comfortable. Absolutely no pressure.”

“…Appreciate u as corny as that sounds! Night”

I was moved by how much she cares. I think it would be hard not to just expect this from someone. Not to think that of course someone was going to do this and feel like it is owed to you. Cherina, on the other hand is the complete opposite. She can’t believe someone is willing, and doesn’t at all expect anyone, to just give up part of them to save her life. I am again so amazed by her and her humble attitude towards all this. I can’t imagine what it would be like for me if the tables were turned. I don’t know how I would handle it, hopefully with as much grace as she has.

The truth is that I think about her every day though. I wonder how she is feeling and pray that she can stay off dialysis as long as possible. I pray for her family and friends too. I can’t imagine what it must be like to be her mother, knowing exactly what she is about to go through and not be able to protect her daughter from the same fate. I hate it when my kids fall and get a bump or scratch, I can’t imagine what it must be like to wait with your daughter while she is on a National Transplant list.

Anyway, back to my appointments on Friday. I had a fasting blood draw (with urine test too! Yippie!), an EKG, Chest x-ray, a tuberculosis test, an appointment with a nephrologist (kidney doctor) and meeting with the Donor Advocate and coordinator of the living donor program at UW. My only scheduled appointments were for 1:00pm and 3:00pm and everything else was walk in. Since I had to fast for my blood draw, and since I get very grouchy when I don’t eat, I wanted to head over early and get that out of the way. Also, I was thinking that each test was going to take a while and thought that it might be necessary to be there way in advance to get everything done by the 3:00pm appointment so we could return to the little ones after we were done.

We took an 8:45am ferry, paid for by the NLDAC, and were getting my 13 vials of blood drawn by 10am. I ate a bagel, went and had my EKG – which only takes 10 seconds by the way, seriously 10! – then down to have a chest x-ray. Two pictures and I was done. In each department I walked right in and right out. It took us longer to find the different departments than it did to have the procedures done. We were finished with all of the tests that we could do by 11am and had two hours to kill.

It was a beautiful spring day in Seattle, so we walked through campus to the book store, had lunch at a pizza place on “The Ave”, again courtesy of NLDAC, then treated ourselves to some Haagen–Daz ice cream. After all, we did have $113 to spend on food!

While I was still checking in at the counter in the transplant department of UWMC, I was called back for my appointment – again, amazing service! I was weighed (131.1 Yeah!!) and checked for height (just under 5’4” she said. Bummer, I was sure I was 5’4”!) They took my blood pressure, temperature and pulse then in walked Kami with a few papers to sign. Apparently they take the selling your organs thing very seriously and I had to sign another form saying that no one had offered me money for my healthy kidney. I was asked a few more times about prostituting my kidney throughout the appointments. She told me that I would be having all of my appointments in the same room.

Dr. Kendrick was the first up. She is a nephrologist and a very smart lady. You can tell that she has always been very smart and certainly was good at her job. No candy coating or beating around the bush, very thorough, to the point, and had very sensible shoes. She ran though the risks of kidney donation, took a family health history and asked about my lifestyle. She reassured me that pregnancy after donation was very safe. She said that the one kidney should be functioning at the rate of my previous two after two months so they suggest waiting six months before getting pregnant, just as a precaution. She said that sometimes your uterus can get so large during pregnancy it puts pressure on one kidney, and because of that you might have increased blood pressure, or decreased kidney function, but that is rare. She also said that there was a study that followed a group of women’s pregnancies before and after their donation and they did have a higher incidence of preeclampsia but they were not sure if that was due to the kidney donation or if it was because they were older, which also increases your risks. She said basically you just have to tell your OB on your first appointment that you have one kidney, then the rest of your prenatal care should be the same. Nice. Shane and I were feeling really good after that. Bring on the surgeon, I am ready to go!

Paige was the next person to come and talk with us. She is a Donor Advocate and doesn’t know Cherina and most likely won't ever meet her. She wanted to know everything - why I want to be a donor, if this was my decision, all about my family, where I live and where I grew up. She did a psychological exam asking if I have ever wanted to hurt myself or if I was irritable – yes I am irritable! I have 2 kids under 3 and work full time. I am a math teacher, of course I am irritable - I told her I was not more irritable than the next person and on we went on to drinking, drugs, mood swings … the list goes on. Looks like I passed though - does that mean I am sane?

Toilet hats and urine cups in the nephrology bathroom.

Finally Kami came back in and went over a few more things. She gave me 2 jugs and a hat, for the toilet not for my head, and instructions on how to do two 24-hour urine output tests. I have to pee in the toilet hat then pour it into the jug, which is to be kept in the refrigerator, twice. I think this might be the worst part. At least the jugs are brown and you won’t be able to see my pee through them. It might be fun explaining to the staff why there is a gallon-sized brown jug in the fridge at work. Ahh the glamorous life of a kidney donor! Kami also told me that they were doing the crossmatch today. The whole donation hinges on the crossmatch test, if it is positive then Cherina can’t accept my kidney, if it is negative it means one more trip to the UW for a CT scan and a meeting with the surgeon where they tell me about the surgery, etc. If I have two healthy kidneys in the CT scan, normal looking uriters and nothing else weird then we schedule the surgery. I will be praying for the next 2 weeks while we wait for the crossmatch to come back, part of me is scared that it might not work out, but I hate to doubt God like that. Optimism at the forefront, I am hoping that the three to six months that Kami said it takes from that date to surgery date is as close to three as possible.

I will try to spare you the gory details of the pee test, but you know me. If there is a good story it MUST be told! You can hope for no good stories. Until then, Pray for negative crossmatch, and all of the rest of my tests to come back normal.

~Kara

Evaluation to Donate Begins

2/17/11

It has been a month and a half since I have submitted my paperwork, including three blood pressure readings, a copy of my recent physical and a lengthy questionnaire about my reasons for donation and family health history. I have thought about Cherina in the meantime, but have been busy with my family and life. Today I received an email from the UWMC Living Donor’s program. I have been selected for “evaluation” and can begin the process to see if I will be able to donate a kidney. It was the best news I had heard in a while. I was sitting in the middle of a workshop for teachers, and checked my email on a break. I am pretty sure I said “shut up,” while hitting the lady next to me, which is just something I would do.

2/26/11

I have been emailing and talking on the phone to people who are with the university transplant team and doing more texting with Cherina. I told her I was in evaluation and, of course, she was more than excited. I know she has been confused, surprised and excited that someone she doesn’t even know wants to give her this gift, but again, I maintain that this is the right thing to do.

I have completed information for the National Living Donor Assistance Center, and received a call yesterday from a very nice lady saying that I was approved for travel and meal assistance throughout the process. She explained that I would be mailed an American express card, which was to be used on days of travel to UW for appointments and the surgery. They load a specific amount of money for each trip and whatever is not used gets put back into the fund for other donors. I was allotted $70 for mileage and $113 a day for food and other incidental expenses like parking. They will pay for a hotel for the night before the surgery, and would have paid for up to 14 nights for the donation surgery for myself and an accompanying person. At this point I want Shane to sleep at home with the girls while I am in the hospital to try to maintain some sort of normalcy for them. I am sure when I come home that it will be a challenge for us all, but one that we can certainly handle.

Again, there is the positive talk about this happening. Why do I feel so certain that this is going to happen? I met Cherina on Thursday evening for a great cup of chai at a local coffee house. I had seen her before, but didn’t remember who she was. I was so nervous about meeting her and I am not exactly sure why. As it turns out I had nothing to be nervous about. Obviously what I am doing for her is a huge gift, but I don’t want a forced friendship because of it. I don’t want her to ever feel like she has to make it up to me. I am doing this because every life has value, and every life is worth fighting for. And, because God told me to. We talked for three hours about almost everything: our lives, family, work, her health, hobbies and more. If I had met Cherina under different circumstances I would have liked her, but I met her now as my recipient, and I am so impressed by her. She has an incredible inner strength, an inspiring faith in God and the ease of a person who has already found their place in life. After non-stop talk at the coffee shop I realize why this is going to happen; it is Gods plan. I have not a doubt in my mind that at this time in my life I am supposed to help her. I have felt strongly about things in the past, like wanting to be a teacher, my desire to be a mom and knowing that my husband was the one. And the feeling that I have right now is comparable to those. I am not sure how I will feel if it turns out that I am not a match; I can’t even imagine that as a possibility.

~Kara

Beginning My Road To Kidney Donation

I was forwarded the following email exchange from my brother Kyle in December of 2010 …

Cherina is my niece.  My name is Swedini, and Cherina's mother is my younger sister.  Cherina is a beautiful, kind hearted, generous, and compassionate 23-year-old young lady. She is very special to me and I love her deeply.  There is nothing I would not do for her.

When Cherina was a young girl she inherited a kidney disease called Focal Segmental Glomerulosclerosis (FSGS), which has decreased her kidney function greatly.  As a result, Cherina will require a kidney transplant in the very near future (possibly before this coming February).  Presently, her kidneys are functioning at 17% and continue to decrease rapidly.  Without a transplant, Cherina's survival rate will be greatly decreased. 
By now you must be wondering why I have been telling you about Cherina.  My reason is that I am making an appeal to all who are reading this to seriously consider donating one of your kidneys to my niece; without a new kidney she will not have the opportunity to experience a normal life, including having a family and children.  She deserves to have a healthy life just like the rest of us!  Would you share your life with my niece?

Now let me tell you something about myself: when I was 18 years of age, I donated a kidney to my sister - Cherina's mother.  She was diagnosed with the same condition as Cherina.  I am so grateful that I had the chance to share a part of my body with her, which gave her the opportunity to have a quality life enjoying good health for the past 33 years.

There have been absolutely no ramifications to my health as a result of giving one of my kidneys.  I have enjoyed a healthy life and my lifestyle has not been compromised in any way.  Living with one kidney has not disabled me from doing anything that I have desired. Medical statistics reveal that there are no health dangers to a kidney donor and I am living proof of that.

There is no cost to you as a donor; all expenses will be administered by Cherina's medical plan.

None of us need two kidneys to live; maybe we have two because we are meant to have the opportunity to give the gift of life.  I urge you to please think about my appeal and consider sharing a part of yourself with my niece, Cherina.  You will be richly blessed for your generosity and unconditional love as I have been for the past 33 years.
 Please forward this on to anyone you think would be interested.
Sincerely,
Swedini
If you want more information about the possibility of becoming an organ donor, check out the following link.
http://www.transplantliving.org/SharedContentDocuments/Living_Donation_Booklet_Final.pdf>http://www.transplantliving.org/SharedContentDocuments/Living_Donation_Booklet_Final.pdf

To become a donor candidate for Cherina, call the University of Washington Medical Center Donor Program at (206)598-3627.
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Hey Everyone, 
Just passing this along in hopes of someone wanting to help another individual, who is capable.  Please read below, and pass to anyone else who you think may be interested ... Cherina is a good friend of mine, and her kidney is decreasing rapidly.  Please take a moment to read and God bless.
Sincerely,
Jeanna
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Where do I sign up to find out if I'm a match?  I'd love to help, if I'm able!


Kyle
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To become a donor candidate for Cherina, call the University of Washington Medical Center Donor Program at (206)598-3627.

The first thing to qualify would be to match her blood type.  She is an O, so she can receive from another O or an A2 ... if you don’t know your blood type you can donate your blood and ask them when they draw it.
God bless you!
Jeanna
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Is an 'A2' an 'A Positive' or 'A Negative'?


Kyle
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Positive or negative doesn't apply...you can be A Negative or A positive.  If you are an A then you would have to get further testing to see if you’re an A2 … there is no way to know if you’re an A2 unless you were specifically tested for it ...
thank you!
Jeanna
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So I got some clarification.  It appears that O's can only RECEIVE from other O's...correct?
Kyle
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Yes, but she can also receive from A2 ... but O is her best bet, and someone 35 or younger, because of her age ...  O is obviously more-rare, so it's disheartening to her, but she will find a donor, I know it!  But it is best to have the transplant before starting Dialysis (sp?) which at the rate her kidney is decreasing she could be needing dialysis soon :(  So, we are on a serious search for a donor...
thanks again!
Jeanna
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So as it turns out, I’m an AB Negative and my wife Lindsay is an AB Positive … so we are both OUT (as far as a donor is concerned) … so we need your help!  If you know of anyone who is willing to donate, please contact me, and I will put you in touch with Cherina.  Feel free to share this email with your database as well!!
Thanks SO much!!!
Kyle

As I read the story about Cherina’s aunt donating a kidney to her sister when she was young I had this feeling that I don’t know how to describe. I got to the bottom of the email and saw that they were looking for a donor with an O blood type. I must have been holding my breath the whole time because I remember letting it out while a voice deep inside of me said “your up.” What a strange thing to say; “your up.” I am pretty sure that is not regularly used in my repertoire of self-talk phrases. It was like someone else was calling me to bat, someone else was there telling me that I was going to do this. It was said with such confidence. It was a statement and not a question.

I spent the next three hours researching kidney donation. I read everything I could in those three hours; the surgery, the donation process, the side effects, the selection process, kidney disease, other peoples’ experiences, etc. And I said before, I was reading this not to decide if this was something I was going to do, but more like learning what was going to happen. From the moment I read the O blood type I knew I was the one that was going to give Cherina a kidney, and I was learning as much as I could so I could convince those around me that this was the right thing to do. I have always been determined, some would say stubborn, and have always been able to work things in my favor. So while I was somewhat nervous about bringing this up to my family, I knew that they would help me support Cherina.

After the initial conversation with my family, I spent the next week obsessed with this donation. Reading more and more, calling people, talking to my insurance company and my employer. Again, I was reading out of curiosity, not to be convinced.

The funny thing is, I don't really know her. Cherina is my niece and nephew’s preschool teacher. My brother and sister-in-law know her pretty well, and they all love her. She did come to a family Halloween party, and I'm pretty sure that we were introduced, but don’t remember her more than thinking that she was a pretty good Sarah Palin. We have talked on the phone once and texted back and forth a few times, but nothing more than kidney talk. I guess we will get to know each other a little better in the months to come.

I should probably say somewhere in here that donating a kidney is not going to be something that people will be surprised to hear that I am doing. I have always been a giver, and that is obvious to people who know me. What may not be so obvious is how I feel about organ donation. My college roommate’s dad is a heart transplant recipient. When she was 5 a dying person saved her father's life. It has been 23 years since his second shot at life, and I know how much that meant to her. Sitting on her bed in college, listening to her tell me about a conversation she had with other students in her class about thinking it was “gross” to donate an organ so they were against it, I decided that I was going to be a donor. I just never realized I might have the opportunity to do so while I was still living.

And so it begins …

~Kara

I Dontated a Kidney

Kohen, my 5-year-old nephew was sitting on a blanket eating a Popsicle next to my almost 4-year-old daughter, Ainslee.

Kohen asked, “Ainslee, do you know miss Cherina?”

“Yeah, my mom gave her a kidney,” Ainslee said, without even looking up.

“Oh, she’s my teacher,” Kohen informed her.

I was sitting in a nearby rocking chair talking to Cherina on the phone, 6 days after our transplant surgeries, and was able to overhear this conversation. It was so cute, so honest and so simply stated. I gave a kidney to my nephew’s preschool teacher, Cherina.

Cherina and I have decided to share our story – the story of two people, essentially strangers, who met under these crazy circumstances and now share an indescribable bond. I will start at the beginning and be posting chronologically leading up to our donation, which happened on June 1, 2011. Cherina did not start journaling in the beginning, but rather wrote her version of our story a month or so before the transplant occurred. Instead of trying to rework her story, we will post all of it at once.

Our goal for this blog is to be able to share this experience with our families and let them in on what we were feeling at the time, to document our journey for our children to someday read and fully understand the miracle that we were so lucky to be a part of and hopefully inspire and encourage others who are embarking on the path we just stepped off of.

~Kara