Two Good Kidneys

4/24/2011

On Thursday Shane and I went back over to UW for our last appointment before the surgery. I had a 12:15 appointment for a CTA (I think the A part designates the contrast dye, opposed to a normal CT where there isn’t any. The contrast dye allows you to see veins and arteries in the scan) and an appointment with a surgeon at 3:00. I was instructed to fast (clear liquids only) for 4 hours before the CTA.

We arrived right on time to the CTA scan, and this time we knew where we were headed. Second floor, radiology department, near the Pacific Elevators. We checked in and waited for a few moments while I filled out a questionnaire about being allergic to iodine or other contrast dyes, a short health history about heart and kidney disease and why I was having the scan done.

I was taken back to the CT waiting area and a nurse came out and started an IV and instructed me to drink a full glass of water. After the cup was empty I was lead back to the CT room, laid on the table and just had to pull my jeans down so the zipper was no longer covering my bladder. With a blanket covering me I began the scan. I was told to listen to the machine and hold my breath when asked, and they would warn me before the contrast was injected through the IV. I was told that I would experience a “warm sensation” immediately following the injection. The table began sliding back and forth through a giant white donut. After a few slides I was told that the dye was about to be injected and again I would feel “warm.” What she forgot to say was that the warmness would only be felt in my trunk, and I might feel like I was peeing my pants! After making sure that I didn’t have an accident, round 2 of the dye was injected and more sliding through the Krispy Kreme look alike. After fasting for four hours I felt like Homer Simpson lusting over the doughnut (MMMM doughnuts!) The whole process took about 15 minutes.

We had a quick lunch in the cafeteria of the hospital, called to check on our sweet little Ainslee who had pneumonia and was at home with grandma and her sister, then we headed up to find the 8^th floor transplant clinic.

When we got there the nurse/receptionist told us that we would have at least a half hour wait – our first wait in seven appointments at UWMC. The wait ended up being 1 hour and 45 minutes, but was well worth it. Dr. Bakthavatsalam (don’t even ask how to say it – I had to check the spelling three times while typing it!) was the surgeon that we met with, and he did a short physical, checked breathing and pulses and things, then sat us down to talk about the specifics of the surgery. It would take about 3 to 4 hours and would be done mostly lapriscopicly. I would have 4 incisions, 3 for the scopes and one where the whole kidney would be removed at the end. The surgeon said if my kidney was cancerous then they could chop it up inside me and suck it out a tube in one of the holes, but we need my kidney intact and in good condition so they will have to make an opening big enough for it to be removed. They will go in and shove (or gently nudge) the neighboring organs aside and inflate my belly with carbon dioxide, clamp off the veins and arteries running to and from the kidney, then detach the uriter from the bladder and clamp off that opening, then make a big slice and take the kidney out. They would move everything back into its original place, sew me up and I’d be done. Sounds pretty routine.

He went over risks and complications and said that chances of anything going wrong were like two in every 10,000. Sounds like pretty good odds to me, but to Dr. can’tsayyourname, he said that is too much for a healthy living donor. According to him, there should never be anything that goes wrong because this donor is putting their healthy life on the line for no physical gain of their own and even one mishap ever is too many in his mind. He said that each donor surgery he does takes 2 days off his life because of the stress it causes him. In his strong Indian accent he said that he does surgeries all the time in cancer patients where he stops the heart, but that is not stressful, just a challenge. He knows that it beats the alternative. But for a donor, the alternative is to live a healthy life with 2 kidneys if they do not do the surgery. I don’t think he was trying to scare me out of it, but simply saying the true facts. With his religious views silently displayed in the white and red markings on his forehead, he must understand the compulsion to fulfill God’s will, even if we do have different Gods.

After talking about the surgery, he showed us pictures from the CTA scan. Hopefully I can get copies of them so you know just how cool they were. He was able to scroll through a series of pictures, starting at the top of my diaphragm and ending at my bladder. We saw my two beautiful kidneys nestled in close to my other important organs. Then we moved on to a screen shot of my bright pink kidneys isolated from everything but the aorta and some veins and arteries. He could spin my kidney’s 360 degrees so we could see all sides and angles of them. They looked like a textbook pair to me. Lastly he showed us a picture of my white bones of the ribcage and vertebrae, white aorta and other veins and arteries, and the rest of my organs- minus the intestines because they cover everything up (those were digitally removed) in various shades of pink and red. We couldn’t believe we were looking at my insides. It really looked like a picture from my high school anatomy book. At the end he told me that the radiologist has to officially read the scan, but he thought I had two beautiful and donate-able kidneys. Perhaps he didn’t call them beautiful, but I am sure he thought they were. He said that they usually leave the better of the two kidney’s for the donor, but in my case, one wasn’t necessarily better than the other. Not sure which one, but there was one slightly bigger than the other, but the smaller had two sets of veins and arteries so that one had a better blood supply. He said it was normal to have different numbers of veins leading to either kidneys, so it was nothing to even think twice about.

Shane and I left the hospital on a huge high, and a very empty stomach. We ate dinner at the RAM in U-village and excitedly talked about the days events. We both still feel really good about giving a kidney to Cherina and can’t wait to move forward.

I talked to Cherina the for most of the drive home and recounted the days events. She was excited to hear the news, and I was excited to be able to share it with her. Her creatine levels are out of control and she needs to start dialysis soon. She hasn’t been feeling well and it is starting to take a toll on her. The poor thing needs a kidney as soon as possible, and she was on the phone worrying about me, how long my day was, the time I spent away from my kids and the time I will be spending away from them. Once again she wanted me to know that she would still appreciate everything I have done for her if I decide to change my mind, and to make sure that I didn’t feel any pressure to follow through with the donation. Seriously? She is amazing and I can’t wait to be able to change her life!

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