FnB & Pavle have been so generous offering to do the first fundraiser for the kidney donation tonight.
Details:
http://blogs.phoenixnewtimes.com/bella/2011/02/saturday_night_fnb_supports_ti.php
I am so thankful, grateful & humbled by the amount of support we’ve gotten. Thank you sooooooo much, everyone!
After a wonderful weekend away, a much-needed mini-vacation, it was back to reality yesterday. I still have a couple more days to go to the hospital for testing. Luckily, none of them will compare to last week!
I was given a blood pressure monitor yesterday. No big deal, right? I had to wear it for 6 hours. Every so often, the cuff around my upper arm would puff up and i Had to immediately stop what I was doing until it was done releasing. So, there I was, in the grocery store, asking a woman where the sun-dried tomatoes were. And it started inflating. She walked away, expecting me to follow her to the next aisle. I felt a quick panic, because I couldn’t move. I had to stay put. As it finally started deflating, she walked back with the jar of tomatoes. “Sorry,” I said, “I have to wear this blood pressure monitor for 6 hours. When it starts inflating, I can’t move. Don’t worry, I’m healthy.” I started laughing when I saw the puzzled look on her face. “Well,” she said, “I’m glad you’re healthy!” I don’t want to go around telling people I’m donating my kidney, because it’s a long story and people don’t want to hear it.
I also got to see the results of the CT scan I had last week. Coolest thing ever! I saw the iodine rushing through my body and there they were…my kidneys. “Oh my god, they’re sooooooo cute!” That’s the first thing that popped out of my mouth. The doctor laughed and said “Yes, Amy, your kidneys are very cute.” Too bad he wasn’t as hot as the nephrologist (see all the freaking words I’m learning???) who put the BP monitor on me. My kidneys are really healthy and both the same size, but the veins and arteries are what could cause a problem re-attaching them into TinyMom. They were to meet today to discuss that.
So, got home from the grocery store and starting making dinner. Risotto and roasted chicken. Well, risotto has to be stirred constantly for about an hour. But, that darn BP monitor kept inflating every once in awhile. So, I stood there, at the stove, waiting for it to go down before proceeding with my stirring. I would have been PISSED if it ruined my risotto!
I had worn a really crappy T-shirt to the hospital and went to take it off to change into a tank top while I cooked…but the cords were intertwined around the neck and through one of the sleeves. I couldn’t get it off without unplugging the monitor and I was afraid if I did, it would start all over again and I’d have to wear it for another 6 hours. So, I got it off most of the way, slid it down to the monitor box on my hip, and put the tank top on over it. There I was, cooking, with a box at my hip and a crappy pink T-shirt hanging from it. Hysterical.
Once it came time to take the monitor off, I was sooooooo relieved!!! Until two hours later, as I was getting ready for bed, and I realized my left hand (the cuff was around my left arm) was really red and a little numb. I guess it’s blood vessels from the tightening cuff or something. It feels fine today, and the redness has gone down a lot.
On Saturday, I have to go in again for more tests. Next week Tuesday is my mammogram and psych evaluation. I think they should have done THAT first, but whatever. That is the last day of testing I will have to go through. I hope. The following week, I find out if I am approved to be a donor. If not, I’m gonna be pissed that I had to walk around with a freaking pink T-shirt hanging from my hip.
This morning, I had to be back for blood tests and to pee in a cup. I had to be there by 6:30 in the morning. Ugh! They took 10 tubes of blood out of me. I was fine with it, until the last tube when she squeezed my arm to get it to flow more and I heard it squirting into the tube. Gross. Then the phlebotomist gave me a cup to pee into. “When you make-a de pee, no touch!” Because, obviously, I so desperately wanted to touch my pee.
I met Kirti on Twitter about a year ago. We have a lot of the same friends, so it was natural to follow each other and see what’s up. We went out to dinner this past summer to FnB, a really great restaurant in Scottsdale. I don’t go to Scottsdale, but it was a great evening with my other friends Lara and Joel, who I know through Yelp. When people mock me for my involvement in social media, I let them know that the greatest people in my life are the ones I’ve met through Twitter & Yelp. Social media also saves lives…
Kirti started talking about how sick her mother was with kidney failure. She made a Facebook page to keep people updated on her mother’s condition. She also posted that her mother was put onto a wait list to receive a donated kidney. I didn’t hesitate and blurted out, on Twitter “I’ll do it. what do I have to do?” I don’t have much of a filter. It seemed like the right thing to do. I couldn’t help my father when he was dying, but I could do whatever I could to improve the quality of life for Kirti’s mom.
This past weekend, I finally got to meet her mother, Anu. I had to initiate the process of meeting, as the recipient is not allowed to do so. I guess it’s kind of like adoption: the child can search for their birth mom, but not the other way around.
Channel 10 was supposed to be there, too. I didn’t want our first meeting to be filmed, so I arrived about an hour ahead of time. I was anticipating a cry-fest and brought my makeup with me. I can’t be on camera looking a mess! I didn’t need it. The instant I met Anu, I got the biggest hug from the littlest person! I felt an instant connection to her. What got me most was her sense of humor. Both she and her husband have great senses of humor and I laughed a lot. Her father asked “Is your blood white, too?” Oh, they’re Indian. Dot, not feather. From India. (Hahaha). Hindu, too. I knew the question of my religion would come up sometime and her father asked “You are Christian, no?” “Uh, no. I’m just Amy.” It seemed an ok answer, because he didn’t bring it up again.
We talked about yoga a lot. I’ve been doing it for over 10 years. I was humbled with some history of its origins. Then, we started eating. Anu made me traditional Indian food, which is my favorite. The film crew showed up (a cameraman. No newscaster, just the guy behind the camera.) and filmed us eating, sharing recipes and interviewing each of us about the donation. It was really nice.
As lunch wound down, we all sat and drank Chai. I honestly feel I should have either: a. been born in the early 1900s so I could be at a ripe age to be a flapper and enjoy it or b. been Indian. There was a very spiritual connection that day and it exhausted and exhilarated me at the same time.
I don’t look at what I am doing as saving a life. What I’m doing is giving someone QUALITY of life. Because, honestly, I can’t see this tough little woman as being beat by ANYTHING.
As I left, I said out my car window “Thanks for lunch!” Anu’s response? “Thank you for the kidney!”
AHHAHAHAHA!!!
Today was my first day of testing to be approved as a donor. The Mayo Clinic is one of the best hospitals in the country and I had been there before to visit a friend’s mom after her knee surgery.
The organization there is incredible. I had an itinerary that mapped out my whole day. For each appointment, whether for my social worker, the advocate, blood tests, piss tests and CT scan, I had to check in on whichever floor the test was being held on and wait for my name to be called. Never was it more than 10 minutes for me to wait. I was prepared with my laptop and phone, juuuuuuust in case.
I have to take sick days at work for the tests, and I explained to the woman who does the scheduling that I can’t do it all in one week. I’d love it if I could, but no way was I going to be there on Wednesday, as originally scheduled. It’s my 40th birthday and I don’t want to be poked and prodded that day.
I got there at 8:15 this morning and got in with the advocate right away. I learned a ton of stuff, like my rehab, my rights as a patient, etc. I also learned that there will always be someone for me to call while I recuperate. She even gave me some advice on FMLA to secure my job, insurance stuff and things like that. (I am utterly exhausted but I have to write this now or I will forget how I am feeling.) There is a likelihood, after all these tests, that I will not be approved to donate my kidney. Something about how many veins/arteries go in and out of my kidneys, if they’re healthy enough even to donate. I still have a psych test to go through, too, but I am not worried about that part. The questions the advocate and social worker asked were very thorough and personal, but that was the easy part. My last appointment was supposed to be at 4pm, which was just lab stuff. As I went to check in, I got handed a new itinerary, which now included, for today, a CT scan. Well, it’s Valentine’s Day, but I don’t have a Valentine, so I just agreed to it. It also meant that I would have shorter visits and hopefully cut them down a day.
I’m not scared of much, but they put the insert for the IV into my arm. It burned. I couldn’t bend my arm all the way. It was the last thing for me to do today and I was completely exhausted, physically and emotionally. The past several days have been a whirlwind of publicity, getting things in order, paperwork and working things out at work. I was taken into the CT scan room and told to lie down on the table. They were going to put iodine into the IV and then LASIKS, which flushes everything out of my system. I was put through the CT scanner a couple times before any of the fluids were added to my body. I was on the table, in a gown and pants, alone and that’s when I started to freak out a little. My eyes welled-up with tears and I just kept thinking that I need to get this fucking thing out of my arm and it burned and it was sterile in there. And then I thought of Anu and what she is going through. All day the thought that she hasn’t been able to eat pizza in ten years kept popping into my brain. It calmed me down, because, after meeting her, I just knew I could be strong. It was just a stupid IV and people go through it every freaking hour of every day all over the world. I can handle it.
The iodine was weird. It rushed through my body very quickly and it was HOT. I felt like I was going to piss the bed. In an instant, though, those sensations were gone.
I have never been so relieved for a day to be over! As soon as I got home a little while ago, I put on my comfy clothes. I’m going to eat dinner and pass the fuck out.
My next tests aren’t until next Monday at 1:30pm. I’ll be meeting with the urologist and the kidney doctor. I haven’t read over anything yet about next week.
Oh, and the LASIKS they gave me to flush my system? Makes me piss every 15 minutes. I am a peeing machine.
I finally got the news Friday afternoon that my blood was a match to the recipient to donate my kidney. I started crying at my desk instantly. I’d been waiting for over a week to find out and I was just so relieved.
Now, the real testing starts. I’ve got to get a CAT scan on my kidneys, a mammogram, a pap smear and a few others. I’ve enver had a CAT scan. Isn’t that the one where you have to lie still for awhile? How the Hell am I gonna do that?????
I’ve written a few friends who have media connections. I met a girl at a gig last week who is young, about 20 (I think) and needs a lung transplant. She’s on state aid and the governor cut benefits so that they don’t cover a transplant. What??????? Does that even make sense? It doesn’t. I am doing a benefit for her next month to try to help raise funds to get her better. She’s at 25% of her lung capacity and on a wait list that is years long. It’s just not fair.
My friend Kirti’s mom is getting my kidney. Luckily, they have full health insurance. I think, though, that people need to be aware of how easy it is to be a live donor. Yeah, the tests will be somewhat time-consuming, but that’s about it. The recovery time in the hospital is two days. Medicine has changed a LOT over the past two decades and with lasers, things heal much more quickly. I’m not worried at all. I’m anxious for it to finally happen, but I know it will take time and I just have to be patient.
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