the weirdest, longest craziest day

i had monday off from work (summer session hasn't started, so office staff and administration was given the day off), so i made an appointment to have my cat scan at 2pm and the meeting with the psychiatrist at 5pm. i wasn't allowed to eat 5 hours before my CT scan, so i had a piece of toast and stopped eating at 9am.

my train was a 1/2 hour delayed (the first time that has ever happened to me on the LIRR), so i was running a little late. i jumped in a cab and sped over to 70th and york for my appointment. i tipped the cab driver extra well since he got me there 

so fast. i made it into the x-ray and CT scan department, signed in and finally caught my breath and sat down. and i waited. and waited. and waited. after an hour of waiting, i checked with the front desk to make sure they hadn't misplaced my file or forgot to put my chart with the rest of the charts. but they assured me everything was fine and i'd be called in shortly. once it was pushing 4pm (2 hours of waiting, 7 hours of not eating), i started to get worried that i wouldn't be seen and consequently that i'd miss my psychiatric appointment. i didn't want to have to travel to manhattan another day and miss another day of work! so i explained to them my situation and this nice man overheard me and said "come with me young lady," and promptly took me back to the CT scan room with him. after another 1/2 hour of waiting, i was finally ushered into this tiny room with a large mirror and 2 lockers. i was asked to remove my pants, bra and shirt and put on a hospital gown. i did. and then was just as quickly taken in to get my CT scan. the 2 men (the CT technician and th

e RN present) were extremely friendly (and quite touchy, haha) -- they kept me entertained and apologized for making me wait so long. i had an IV inserted into my right arm where i was told a contrast medium would be later injected. they took some preliminary scans of my abdomen and 10 minutes later the 2 men came back in to prep me for the contrast scan. i'm not quite sure what it was (i think barium), but it was injected into my system very quickly. within seconds, my face got very hot and i tasted metal in my mouth (all of which

 he said would probably happen)...

 but the worst part was at the same time all that was happening, i felt like i was peeing my pants. over the intercom, he asked if i was okay, at which point i nervously said, "my face is on fire and i think i just peed myself!!" he assured me that all of that was normal, and just as fast as it had come, all the same sensations disappeared. for one final scan, they had me lay on my stomach and they scanned me one last time. i hopped off the table, they made me sign some consent forms and i was on my way.

23 floors up i traveled to my next appointment. i met with the psychiatrist, who was a little strange and had the best poker face i'd ever seen. he asked me the usual questions: why are you doing this, do you know the consequences, do your parents know, have you ever been depressed, used drugs, blah blah blah. he seemed wary of my answers for some reason and asked if it would be alright to call my parents to get their outlook about this whole thing. so i said of course and provided him with their numbers. after an hour of being under the microscope, i was finally freed and left the building.

i met my friend mirinae for dinner (10 hours of waiting to eat) and we went to little japan and ate crazy things, like some kind of octopus balls and raw tuna and then walked back to her apartment. i caught the train home at 9:40 and was back at my apartment by 10:30ish.

a long day, but well worth it :)

heading into the city again...

just wanted to keep everyone updated:

i will be heading into the city again -- this time for an cat scan and a meeting with a psychologist, then ill be meeting some friends out for dinner. everything is going extremely well and i believe after the results today (providing that everything turns out normal) we schedule for surgery.

i told my mom this weekend (i saw her because i went home for my little sister's HS graduation **YAY for her!! she will be attending johnson and whales in RI in the fall** my parents just moved to indiana in may, so i don't see them as often as i'd like because i'm still living in NY) and my mom took it SO WELL!! she said she was so proud of me for doing this and is inspired and in awe of my bravery and courage. i think it is wonderful that my mom had such a great reaction. i think i was freaking out over nothing-- i was so worried to tell her, that she would try to talk me out of it because she didn't want to put my life at risk. but i should have known that she was going to be so understanding; both her and my grandmother were very very very giving and loving people. not a day goes by where i don't thank them for showing me how to be gracious, loving, giving and thoughtful towards others. my halmoney was, hands down, my biggest inspiration to do this and i am so grateful that i have a supportive, loving family who is behind me 300%. my mom and dad want to come and stay with me a 2 weeks before and 2 weeks after the surgery (for a total of 1 month). i knew that my mom would want to be there for it-- but i didn't think she would want to come for such a long time. i'm so lucky to have great parents who will be there for me. not everyone can say they are this lucky.

anyway, i have to go out and run errands before i jump on the train to manhattan. ill write later tonight to let everyone know how the appointments went.

xoxo

a small sign of my gratitude... :)

i just wanted to say thank you to everyone who has taken the time to read about my personal story, answer my poll, read more about kidney donation and spread the word. 

but mostly, i want to thank all of those who have offered me love: a place to stay before, during and after the surgery, kind hearts that have offered to come take care of me, get me things, run my errands, drive me around, stay with me, sleep next to me and love me. it honestly has touched my heart at the number of people who have offered their help and kindness during my journey-- just to make sure i am okay and well taken care of. it is amazing to see so many people who want to help and get involved, so i want to thank you for it :)

i think this step in my life has shown so many people that even little things that we take for granted can touch someone in such a strong way - kind hearts run far. i think we should all take the opportunity to appreciate life; i am healthy, loved, strong, brave, literate, able and learning. what can you say you appreciate from life? life is a gift and whether you believe in God or not, we should be thankful for it. [[i don't mean to preach, haha, but it is really true.]]

think about that next time you get mad at someone, the next time you get angry at a petty situation or the next time life has given you an opportunity - appreciate it and embrace it! 

my life is mine, and I LOVE IT! 

xoxo

some information on PKD

Polycystic kidney disease (PKD) is a genetic disorder characterized by the growth of numerous cysts in the kidneys. The kidneys are two organs, each about the size of a fist, located in the upper part of a person’s abdomen, toward the back. The kidneys filter wastes and extra fluid from the blood to form urine. They also regulate amounts of certain vital substances in the body. When cysts form in the kidneys, they are filled with fluid. PKD cysts can profoundly enlarge the kidneys while replacing much of the normal structure, resulting in reduced kidney function and leading to kidney failure.

When PKD causes kidneys to fail—which usually happens after many years—the patient requires dialysis or kidney transplantation. About one-half of people with the most common type of PKD progress to kidney failure, also called end-stage renal disease (ESRD).
PKD can also cause cysts in the liver and problems in other organs, such as blood vessels in the brain and heart. The number of cysts as well as the complications they cause help doctors distinguish PKD from the usually harmless “simple” cysts that often form in the kidneys in later years of life.

In the United States, about 600,0001 people have PKD, and cystic disease is the fourth leading cause of kidney failure.

Autosomal dominant PKD is the most common inherited disorder of the kidneys. The phrase “autosomal dominant” means that if one parent has the disease, there is a 50 percent chance that the disease gene will pass to a child. In some cases—perhaps 10 percent—autosomal dominant PKD occurs spontaneously in patients. In these cases, neither of the parents carries a copy of the disease gene.

Many people with autosomal dominant PKD live for several decades without developing symptoms. For this reason, autosomal dominant PKD is often called “adult polycystic kidney disease.” Yet, in some cases, cysts may form earlier in life and grow quickly, causing symptoms in childhood.

The cysts grow out of nephrons, the tiny filtering units inside the kidneys. The cysts eventually separate from the nephrons and continue to enlarge. The kidneys enlarge along with the cysts—which can number in the thousands—while roughly retaining their kidney shape. In fully developed autosomal dominant PKD, a cyst-filled kidney can weigh as much as 20 to 30 pounds. High blood pressure is common and develops in most patients by age 20 or 30.



The two forms of polycystic kidney disease (PKD) are

• autosomal dominant PKD, a form that usually causes symptoms in adulthood
  


• autosomal recessive PKD, a rare form that usually causes symptoms in infancy and early childhood
  

The symptoms and signs of PKD include

• pain in the back and lower sides
  


• headaches
  


• urinary tract infections
  


• blood in the urine
  


• cysts in the kidneys and other organs
  

Diagnosis of PKD is obtained by

• ultrasound imaging of kidney cysts
  


• ultrasound imaging of cysts in other organs
  


• family medical history, including genetic testing
  


• PKD has no cure

Treatments include:

• medicine to control high blood pressure
  


• medicine and surgery to reduce pain
  


• antibiotics to resolve infections
  


• dialysis to replace functions of failed kidneys
  


• kidney transplantation
  

perspective

"it is like i am desperately trying to stay afloat on a soaking wet piece of wood, and everyone is passing me, waving goodbye. but no one has offered to help. but you, you risk your life to swim out to me, just to make sure i am okay. and when you get there, you offer me help to get me to land safely. that's what you do."

perspective is a wonderful thing. 

great news!!!!!

i heard some great news today!! all my test results came back great! i am cleared to donate for the most part. i have to meet with the psychiatrist, with whom i scheduled an appointment with today for june 30th at 5pm. 

i called my recipient to inform him of the news; so rewarding to hear that he is so thankful and grateful. but this is one HUGE happy giant step towards surgery. yay!!

the big day!! (well, one of the big days)

today was the day of extensive tests (the word extensive being used lightly). i went to bed at 2:30am, woke at 5:30am, was on the LIRR (long island rail road) at 6:50am and at the Rogosin Institute by 8:30am. it was an incredibly early morning, but SO worth it!! i feel more confident and excited about the donation more than ever. besides the awkwardness of carrying in a pitcher of urine, 3 QUARTS!! to be exact, it was a great day! 

first, i met with my transplant coordinator. she briefly went over what was going to happen that morning. i had to sign consent forms to be tested for HIV, hepatitis B and C and have more blood work. then i waited. while i was waiting, i noticed this woman. she sad down with a blue lunch cooler. she looked so tired, worn out. shortly after she sat down, she opened the cooler and took out the biggest pill case holder i have ever seen. literally, it was the size of a textbook. she took pill after pill after pill. i couldn't imagine having to live my life like that-- relying on pills to maintain my body. seeing that made my mind stop running for a moment and appreciate life. after a while, i was called into the back to have more blood drawn. the same guy who did it the 1st time i went did it this time. he was very nice... tried to make small talk; "where you from?" "how did you hear about this" "what do you do/where do you work" "what nationality are you??" etc. he was nice; kept me entertained. 

i learned today that i am an altruistic donor, meaning that i came out of no where and am doing this for a stranger with no personal gain or benefit. altruistic donors are far and few between. it is true that most donors give to family members or close friends. random strangers are more rare. anyway, after they analyzed my urine (all 3 gallons of it) and poked my arm a little more for some blood, i was off to meet with the MD. he had a funny sense of humor- like a bad, flirty kinda of conversation; he kept trying to joke, but it was so weird. it made me laugh though! at the end of the medical history check, he said i was a great candidate. then i met with a social worker, who was also very nice. she asked me a lot of questions regarding my decision to donate, if my family knew and supported my decision, family background, my personal, financial and social stability -- all of which was great. lastly, i went to another medical building to get a chest x-ray and an EKG. the EKG was a little weird because she asked me to undress from my waist up (so basically my shirt and bra had to be removed) and put on a gown with the opening in the front. anyone who knows me knows that i am not ashamed to be naked, so i did-- except that she never left the room while i was changing, so i undressed in front of her. then she laid me on the table and opened the gown so i was exposed to everyone. again, i am not shy about being naked, but what was the point in putting on the gown if she was going to watch me undress and then pull it off once i was laying down?? haha. i don't know why, but this bothered me a little, the concept of the gown and all. maybe it was just protocol. who knows. anyway, it took like a minute to get a reading of my heart and then i stood up, baring breasts, got dressed and went on my merry way. 

the one downfall of the day: i wore my favorite flats and got blisters, so before i hopped on the train home i bought some flip flops. but other than that, my day was very exciting. oh! i hear the results back (if i am healthy enough to proceed) next week sometime. after i hear back, i have to schedule a catscan and a meeting with a psychiatrist. once i am cleared from that as well, we are setting a date for surgery. i asked when they thought it would be and they said the end of august; which actually works out perfectly because my sister will be coming back from korea then and can be my nurse :)

xoxo

the start of the collection...

i started my collection this morning, with the first pee at 6:30am. so far so good (i've only gone twice now-- it is only 9:30am). it is a little awkward walking up and down the hall at work with a container of pee-- even though it is in a plastic bag. some people look at me funny, but no one has asked what is in the bag yet. today is going by slowly, and mostly i am just planning out my day for tomorrow. figuring out how i am going to take the train and subway in the city while carrying my urine and pretending it's normal, haha. but hey, if someone asks, i'll just tell them.

anyway, if anything crazy happens during the day with the urine collection, i'll let you know. so far, nothing exciting though! :)

a little update

i haven't written in a few days, so i thought i'd take the time to update a little.

so there is going to be a documentary made about the man i am donating my kidney to; the same man who produced "supersize me," will be producing this documentary (if i am not mistaken). my recipient just finished up with his interviewing for the most part, and i think i will soon be interviewed as well. i'm a little nervous about that, because i don't want anyone to think that i am doing all this for attention. in fact, that isn't even how it all happened. it all came in the aftermath of my decision to donate. but regardless, it makes me a little nervous.
secondly, today is my last day as a 22 year old!! tomorrow is my birthday (june 13th)-- and i am so excited because some of my really great friends are coming to celebrate with me for the WHOLE WEEKEND! and i am extremely excited to see them (if you can't tell already) : ) also, i got my hair cut, as you can see in the picture. 

andddd i think i am getting a bonus tomorrow from work.

so i do not think this week could have been any better! next week should be just as good, except all day on the 19th, i need to collect my urine. i think it's going to be a little bit of a challenge with being at work and all, but i've already purchased a container to hold all that pee-- haha. and i plan on bringing a smaller container to work, in case i have to go here. i think the hardest part is not only having to get all my urine for the day into one container, but i am expected to keep it cold all day, too. haha. however, i think about the struggle that my recipient has to face everyday with his challenging PKD, and all of a sudden, collecting a little urine for one day is nothing. funny how a little perspective can slap you in the face and make complaints go running. ah, i love it.

don't forget to leave comments, suggestions and questions! and vote on the poll!! ------>

xoxo

getting nervous

eek, i am starting to get a little nervous about the last stage of testing i have to go through. i kind of feel some pressure (not really in a bad way though) about "passing" these tests. i would feel so bad if i didn't. i can't really forsee why i wouldn't pass-- but i can't lie; i definately think about it.

anyway, i still feel that there is something calling me to do this. with that said, i have more faith in the fact that this will work out than i have doubt. anyway, just wanted to jot down my feelings. i am still excited! just a little nervous that i've told so many people now (and started a blog!!) and i may not even be qualified to really do this.

i guess only time will tell. and now that i've gotten to worrying out of my system, i just have to see on the 20th what happens.

yay for kidney donation!!

some positive feedback..

i was babysitting all day (8am to 10pm ughhh) and came home to a very encouraging, positive comment regarding my decision to donate my kidney. since i don't usually get this type of reaction, it really melted my heart. i'm glad to know that there are some people out there who don't automatically want to yell at me or call me crazy. it kinda made my day :)

"wow melissa. i was sitting here just being bored so i decided to read people's profiles and i clicked on your blog. wow that is amazing! i didn't even know about stuff like that! good for you! you really are something else!! you should be very proud of yourself!! if there were only more people in the world like you!! i am truly blown away!"

i really am so happy that i opened up someone to this experience. it's nice to know that my decision had an impact on someone in such a positive way! 

perhaps i'll put my writing minor to work and write a book on this experience. meg woolbright would be so proud :)

spreading the word...

so i decided to tell one of my favorite co-workers of my donation. her initial reaction was, "what the heck is wrong with you?!" but then, with my convincing tact, i was able to explain to her why i was doing this and what it means to me. she understood immediately-- but it is in fear of that reaction that i don't tell most people.

i mean, i think those who REALLY know what kind of person i am aren't too shocked to discover my interest in donating one of my organs. i do kinda kooky things like this all the time; ideas pop into my head and im off like the wind trying to accomplish it.

she then said to me, "i'd slap you if you were my daughter." she said it with a smile, so i think she was half joking-- but serious in the fact that if i really were her daughter, she would not let me do it. my reaction was, well, you donate blood, don't you? that's an organ.

ok, ok. i know. not really the same thing, considering donating blood doesn't involve surgery. however, live transplants have been really successful and YOU SAVE SOMEONE'S LIFE! what could be more rewarding than that.

anyway, i just thought i'd share my experience, because as i tell more and more people, i'm sure to hear this reaction more often. i've got to build a tough skin between now and then : )

blog ya later... xoxo

appointments scheduled...

i came home from work today and received some paperwork in the mail regarding my appointment on June 20, 2008. 

i will initially meet with the living donor coordinator (whom i have mostly been in contact with). i need to collect my urine for creatinine clearance and total protein to determine my kidney functions. i am not allowed to eat the morning of my appointment.

later that day, i will do the following:

• have more blood work done
• review the previous day's 24 hour urine collection
• meet with the m.d.
• meet with a social worker
• have an ekg
• have a chest x-ray

hopefully if all goes well, i'll have more to blog about soon! 16 more days until the next step!

a little adaptation

please note that donating my kidney is my complete and ultimate decision. i was never coerced or talked into doing this. i am also not receiving any monetary gain from doing this. like it has been said in my blog, i have never met the man i am donating my kidney to previous to speaking with him about the entire process beforehand. thanks!!

the beginning of my journey

so, i decided to donate my kidney to a total stranger.

well, it wasn't as easy as that sentence was to write. but a few months ago, around the beginning of March 2008, i made the decision to donate one of my fully-functioning, healthy kidneys. now of course this decision did not come out of the blue sky, but rather with the news of my grandmother's (halmoney, in korean) fading health due to pancreatic cancer.

the day i found out of her affliction with cancer, i was devastated. although very cliche, i felt like i was just sucker-punched in the gut and the wind was knocked out of me (very much the same feeling i had when i received the phone call to learn of her passing). i was at work and had no where to run, no one to talk to. i turned to the internet and did all the research i could. i was heartbroken to find that there really wasn't much that could be done for this fast-killing cancer. my attention then turned to finding something that i could do to help. the idea of kidney donation popped into my head almost immediately. no idea where it came from. being a college education girl with a good head on my shoulders, i knew that my best bet was to research the process, procedure, recovery time, hospitals, places that offer donation, etc. and so that's how my journey started.

within a half hour, i had printed pages and pages of information. i went from being kidney donation information-less to being so overwhelmed with all the kidney information i could ever ask for. i knew size, shape, color, what they do, how you can die from improper function, disorder and diseases of the kidneys, and most importantly-- how life threatening this can be. no worries though. i sifted through it all-- weeding out the biased information. and then i made a list. pros on one side, cons on the other. although i had about the same number of reasons on each side, the pros were much more substantially meaningful than the cons. i knew from the beginning, this was something i was meant to do. i just felt it.

so with that, i signed up on http://www.matchingdonors.com/ and within a few minutes, i found 3 potential people who matched my blood type (A+) and who lived within my area. i e-mailed all three and the next day i received a call from one. it was in such a whirlwind, but i was scheduled to go in for preliminary blood and psychological testing on April 24, 2008. a short 2 weeks later, i found out that besides not being a genetic match (which we knew wasn't going to happen anyway) we were perfect matches on all other dimensions and i needed to schedule an appointment for further testing including a 24-hour urine collection period and meetings with the donation team and psychologists and social workers.

right now, i am waiting to go in for that day of intensive testing-- it is scheduled for June 20, 2008 at 8:30am. i feel bad that i have to ask for the day off from work-- because i just missed an entire week due to the passing of my halmoney. but, i feel this is something i really want to do, so i am going through with it.

the day of my urine collection and the following day of testing, i will continue to blog. but im glad you've caught up to me on my journey and i look forward to my continued blogging. if you have questions, feel free to contact me. i'd be happy to answer questions regarding my kidney donation.

when i finally opened up and told some friends and most of my family (i have decided to keep it from my mother so far because it was her mother who passed. i think right now it would be too much to deal with, so when as this whole thing becomes more solid, i will continue to wait to tell her) many were confused. "why would you give your kidney to a total stranger??" is the most common question i get. my roommates boyfriend thinks i am crazy. but the best way i can explain it is with a question....

what if you had a kidney disease or disorder that was killing you? what if everyone in your immediate family has already lost their battle with this disease? what if none of your willing friends were positive matches? what if you had no where to turn to? you would give ANYTHING for a total stranger to come along and offer this second chance at life. ANYTHING.

and this is why i've chosen to donate my kidney.

live life to the fullest. love every moment. and listen to your heart. mine has guided me here.

xoxo melis