happy, healthy blood

Let's review, shall we? So, as I mentioned in my last post, they have found a match for me. Yeah!  The match they located is from the UCLA Medical Center, in sunny California. Their transplant coordinator mailed me a blood kit and instructed me to get one more blood test that would then be shipped to CA for the final test to complete the match process.

My primary physician's office suggested I go to a blood draw facility, where they would be more familiar with this type of unique situation for a blood test. So, I did. Last Friday I promptly made the appointment for 7am Monday morning at the local LabCorp here in Schenectady, thinking it would be so convenient to pop in on my way to work and still not be tardy. Nope. Mr. Blood-draw Man suggested I take it to Ellis Hospital's Blood Draw facility for testing, where they would be better equipped and familiar to do this type of test. Do I sound like a broken record yet? 

I drive over to Ellis Blood Lab and Ms. Blood-draw Lady says, "60 cc's of blood? We can't do that here, it's too much."  Ok, so where do I go then, Ms. You're-Letting-Me-Down-and-My-Patience-is-Wearing-Thin Lady? She tells me to go to the main entrance of the hospital and they can do it there. I get in my car and drive to the hospital, park, and am now arriving to have this test 40 minutes AFTER I was supposed to have had my original appointment at 7am. I sign the sheet at the desk. Can I just say that I'm always hesitant to sign one of these when I'm still not sure I'm in the right place to get the service I'm there for. It's like standing in a customer service line for 20 minutes to have them finally call your name only to inform you that you're in the wrong line. Who doesn't love that?!

The administrative assistant at this lab was so nice, but she too suggested they might not be able to do this test here either. Really? Ok, I have an idea - give me the needle, I'll fill the vials, box them up, slap a FedEx label on it and drop it in the orange and purple box. I mean, how difficult could this be? You throw the phlebotomist a curveball by actually being prepared with a ready-made kit for this procedure and they look at you like you are asking them to fill the test tubes with chianti instead of blood. She eventually fills 7 vials with my happy and healthy blood and sends it off FedEx.

Now what? As always, I'm not sure. I think it gets mixed with the recipient's blood and then the smarty-pants technicians come out in their white lab coats and run some crazy mathematical formulas on it and bamm! - it's a go! At least I hope so. I should be hearing from my coordinator from Weill-Cornell within a week, which at that time she will inform me of the final results and if it's positive, a surgery date will be scheduled. This is an exciting time for me right now. Not excited as in... I just stumbled across a shoe sale at Macy's kind of excitement. It's more like the type of anticipation an expecting mom might be experiencing, or the butterflies that flutter in your tummy when you're waiting to hear about a job offer.

This journey is now becoming all the more real for me. It's really happening, and it's sneaking up on me quicker than I had imagined it would. I'm loving every minute of it, and I'm so anxious for that phone call to come to inform me that my kidney is going to be transplanted into another human's body. It's absolutely amazing to me to think that we have this ability to help someone by passing off an organ to them that was once our very own. I'm fascinated that something that is coming from my body will be able to provide a better quality of life for someone.

You can do this too, ya know! Just think about it, please? It's such a small sacrifice. The urine collections, the multiple blood tests, the x-rays and body exams, the phone calls and research are nothing. Nothing. If anything, I have found that during this time, I have gained so much information and knowledge about something that quite honestly, I never knew was possible. It's been so interesting to me, and I'm intrigued by the science behind it all. I am looking forward to the next step!

Until next time... summer is coming to a close very soon, enjoy these final days outside in the sun!

so happy

I received a call this afternoon from Weill-Cornell with wonderful news - I passed all my medical tests! I almost peed my pants when the coordinator told me, but I didn't, I shed a few tears of joy instead. I didn't expect to hear from them so soon, so when I saw the 'missed call' on my phone, from Marian (the coordinator), I wasn't sure what to expect when I listened to the voice mail. I returned the call to find that everything looks good and I have great kidney function! YIPPIE.

I didn't even have enough time to write a post on my big day there. So sit back and relax and I'm going to share with you my experience. What a great day it was - it far exceeded my expectations, with the exception of the crappy weather. I departed home at 5am on the dot and arrived at the hospital with only 15 minutes to spare for my first 9am appointment. I was so impressed with the fluidity of the appointments. I know I didn't have to wait more than 10 minutes between each one.

Appt. #1: I started with meeting Marian at 9am. She went over the basics of this process, I filled out some paperwork and she confirmed with me my itinerary for the day. Marian was very nice, informative and thorough.

Appt. #2: I met with a nurse and dumped off the 2 jugs of urine I had been schlepping around with me since daybreak. Ugh, what an awkward feeling walking around with a borrowed NASCAR cooler filled with iced-up urine. The nurse then proceeded to take 13, (yes, 13) vials of blood from me. I counted them. EW! I then was asked to pee yet once again and waited to see one of the kidney doctors.

Appt. #3: I met with a kidney doctor, and forgive me but I don't remember his name. Nice man, who asked me many questions about my health history, my motivations to become a donor, family history and some basic personal questions. He went over the basics of the surgery and filled me in on what might possibly be a minor setback with regards to a kidney infection I had about 18 years ago. He mentioned the possibility of scarring, but in the same breath told me I have great kidney funtion. The CT Scan would provide the results of that. He listened to my heart, tapped me here and there and I was done.

Appt. #4: I met with Samantha, the social worker. I again fill out more paperwork and we chatted for about 20 minutes or so about my desire to be a donor and I answered her questions about my personal life, medical history, etc. She too was kind and informative and I felt very comfortable sharing so much of myself with her.

Appt. #5: I still have not eaten, nor have I had a drink of anything since the night before. I feel a headache coming on and more than anything, I just want a drink of water. This appointment was for my EKG. I have never had an EKG. Honestly, it took her longer to put the sensors on my chest than it did for her to operate the instrument that provided the test results. No sooner did I have my shirt off than she told me to put it back on. I seriously don't think I was in there for more than 4-5 minutes. Love this!

Appt. #6: Now I'm getting really excited. Why? Because when I'm finished with this one, I'm going to eat my left arm. I am so hungry now and am very anxious for this next test. It's a CT-Scan. I didn't wait more than 5 minutes for this one as well. I actually felt a little weird because there were many people in this particular waiting room and I cut in front of each one them. Hey, they called my name - you don't have to tell me twice! I lay on a table and it slides into this x-ray type of device. I'm hooked up to an IV and am told that soon they will begin the transfer of the dye, through the IV, that enables the equipment to read the x-ray. She told me that I would feel like I peed my pants. Can we just get off the pee stuff for a while, please? Well, it did feel like I peed my pants. Ew! That exam was probably the longest, approximately 20 minutes or so, but not uncomfortable at all.

Appt. #7: Chest x-ray. Quick and painless! I finish, get dressed and inhale the Soy Joy bar(s) I had packed in my bag. I ate them so fast that I don't even remember what they tasted like.

At this point I have one more appointment scheduled for the day, but it's not until 5pm, and it's only 1:30! I call me niece and her boyfriend and ask them to come back to the hospital to meet me for lunch. They hustled back, in the downpour, and within 20 minutes they arrived soaked literally head to toe. I felt SO bad, and yet there was nothing I could do. We swam across the street to a deli and had a great salad and sat down for a while to catch up on the day's events. They walked me back to the hospital and were soon off to search for an H&M store to purchase some dry clothes. My heart was sad because I felt so bad for them in their discomfort.

I decided to visit the psychiatrist's office in which my 5:00 appt. was scheduled for, in hopes that I just might be able to squeeze in sooner. No such luck, but he was kind and told me to come back at 4:45. I went back downstairs and hung out in a nice, comfortable chair in the main lobby and read my Esquire. I dozed off for about 15 minutes but found that the many distractions prevented me from getting some serious Z's. At 4:00 I found a cafeteria that offered Starbucks and washed down yet another Soy Joy bar with some hi-test.

My view from the lobby of Weill-Cornell - all afternoon!

Appt. #8 Of all the appointments scheduled for the day, this next visit with the psychiatrist was really the only one that I felt slightly anxious about. When I know someone is examining my mind instead of my body, I get the heebie-jeebies. Dr. Loftus was so kind. What a great visit I had with him. We chatted for quite a while and although the conversation touched on many personal elements of my life, I felt completely comfortable with him. I was honest and felt like I learned more about the donor transplant process from him than I had with any others I had met earlier in the day. I truly enjoyed my time with him and it was the perfect experience for me to end my day of exams.

I don't know how I could have done it all without the companionship of my wonderful niece and her caring boyfriend. A special thanks goes out to Amber and Nick for being with me on what was to be such an important day for me. They were so flexible and supportive, offering their ears to listen to my updates, and providing me with a belly laugh at their sarcastic commentary. I love those two!

My niece Amber providing me with humor in the waiting room

I arrived back home in Albany at around 9:30. Long day, but a good long day. Information overload, lots of stimulus, lots of learning, and lots of thinking. I felt so good and relieved to have experienced so much in such a short period of time. I never dreamed I would be getting a phone call so quickly to let me know that all the poking and prodding paid off, big time!

I feel blessed today. I feel so fortunate that God has given me a body that has the ability to share something that is so precious to me, with another person that so desperately needs a slice of good health.

Until next time... take a break from your computer for a day, it will offer you some added time to share with a friend.

pee-pee time

Tomorrow is my big day at Weill-Cornell in New York. I will begin testing at 9am, and part of the tests involve yet another capture of urine for 24 hours. So, at 6:45am this morning I began the process of saving all my urine for the next 24 hours. I took a vacation day from work since I knew it would only make life a lot easier for this task, plus, I am so anxious about tomorrow that I felt being in the office would be counter-productive.

The last time I had to save my urine, the lab provided me with a container for this purpose. This time, I was out of luck since I'm working with the medical office in NY. I was told that I could stop in to any pharmacy and pick one up. They were wrong. So, on Sunday as I perused the aisles of Wal-Marts, CVS and the local supermarkets, I started to get a little concerned as to what the hell I was going to use to keep my golden liquid in... yikes! All I have here at home is a pickle jar and I dared not attempt to put anything in that since I felt like it would take nothing short of a blowtorch to sanitize it. My last resort was... are you ready?... a male urinal container! Oh. My. God. I don't think I would have been as embarrassed purchasing Depends. Not only did I have to purchase it once, I had to go back again this afternoon to get another one because I had already filled the first one. It must be psycho-somatic, because the last time I did this I swear I don't think I captured more than 2 cups. Today was more like 2 gallons. Whuh?

It's around 9pm and I will be hitting the hay soon, as I want to try to get a nice solid sleep tonight. I have to depart home around 5am to give me enough time to make it into the city for my 9am appointment. I am building in some time for rush hour traffic, construction and any accidents that might delay my arrival. Punctuality is my middle name! My niece and her boyfriend will be coming with me as my travel companions and this has made me so very happy. It's just going to be nice to have someone with me to chat with on the trip home, and of course be my chauffeur - woo hoo!

My exam itinerary for tomorrow includes:

• 24-hour urine sample and a blood test
• meet with coordinator
• meet with MD consult
• blood tests
• meet with social worker
• EKG
• chest x-ray
• CT of pelvis and CTA of abdomen
• meet with psychiatrist (boy are they in for a ride!) ha!

I have to say that the only thing I'm nervous about is finding the parking lot. Yep, that's it. I'm very excited and more than that, I'm very curious. Since I've been blessed with such good health my whole life, I have never been exposed to any extensive medical testing. This is all new to me an I am anticipating a lot of medical mumbo-jumbo that I will know nothing about, but that is exciting to me. I will be taking notes and asking a million questions so I can bring it all to the blog and share with others. The entire staff will be relieved when I finally make my exit at the end of the day - they will definitely earn their pay tomorrow!

The one thing I am dreading tomorrow is my fast. I can't eat or drink until around 2:00 or 3:00! What, no Starbucks?! Are you kidding me!!! I have packed up some snacks to munch on once I get the green light to eat later in the afternoon, and you better believe I will inhale every one of them. I'm prepared with all my paperwork, driving directions, magazines and a book. Hurry up and wait, right?

Time to sleep now and I will pray that I'm going to see some very positive results from all my tests within the next two weeks!

Until next time... turn off the TV once in while and get to sleep early. You will feel remarkably rested the next morning.

may the testing begin...

My decision to become a living kidney donor gives me the option to donate to a specific individual that I may personally know (whom I might be a match for) or, be a non-directed donor to a recipient that would essentially be a stranger. My hopes are that I might be a candidate for a never ending altruistic donation. It appears complicated at first, but if you view this short animated diagram, it explains in simple detail exactly how this donation chain happens. If it’s possible to donate to one recipient and allow an opportunity from that transplant to set off many others, I would be crazy not to be a part of something that could help so many others. As I mentioned in my earlier post, Cara was an altruistic donor that set off one of these chains. At this point in my journey I have no way of knowing if this will be a possibility for me as well, but I am hoping and praying that this opportunity becomes available.

Having made the decision to be a non-directed donor, my next step was to complete a Medical Certification Form from the National Kidney Registry. This form features the many blood tests, and a 24-hour urine test, that I must have completed by my primary physician here in town. I made the appointment to visit my doctor immediately after downloading the form. I remember telling my doctor “Please don't think I'm crazy but I have something to tell you.” I shared with him my desire to be a part of this process and was curious to get some feedback and opinions from him as to what his thoughts were. He expressed his support, and I was back in his office on May 11 to complete the blood work.

Along with the blood work required for this initial basic set of tests, is a 24-hour urine capture. What? I know, that’s what I said. Bottom line is that for a 24-hour period, I have to save all my urine and keep it refrigerated, right next to my eggs and milk. I needed to pick up the container at another office and was a bit surprised when they handed me what seemed to be no more than a quart-sized container. I looked at the nurse and laughed and said, “oh, that won’t do, I will need at least 2 of those.” The last thing I wanted was to be without a container after filling one jug and having to reach for a half-empty pickle jar to complete the test. Well, I can say that upon completion of this fun test, I barely filled 1/4 of one of the jugs. What the hell was I thinking, being all Superwoman-like, as if my urine was all powerful and so strong! I’m sure a Yoo-Hoo jar would have been sufficient.

I received a phone call from my physician on May 17 with some positive results from all my tests and felt relieved that he didn’t find any red flags that might eliminate me at this stage. At this point in my process, I was put in contact with an administrative coordinator, Diane, at the National Kidney Registry. Diane was my liaison with the NKR to ensure that my paperwork was being received and evaluated. She was extremely helpful in answering more questions I had about the process and also filled me in some more on the actual surgery, should I be considered as a donor. On May 25, the NKR still had yet to receive my blood work results and I was growing impatient. I called my doctor and asked the secretary to fax ME the results and I would then forward them to the appropriate department at NKR. On May 26, I received an email from Diane confirming the paperwork was received. Now I had to wait for their medical board to review the results. Tick, tock, tick, tock....

On June 3, I received an email from Diane stating that the medical board had reviewed my results and everything looked good! I almost peed my pants!! I was so relieved, excited, anxious and happy. From the beginning of my contact with Diane I had discussed my wish to have my surgery with the team at Weill-Cornell. Diane then put me in contact with a Transplant Assistant with Weill-Cornell who would be handling my case with the team there. After exchanging some emails and a phone call with Julie, I requested a date to go to New York to begin my tests and be evaluated as a potential kidney donor. On July 13, at 9am I will begin what will be approximately 8 hours of medical tests and a psychiatric exam. I can’t remember a time when I have been this excited to visit a doctor!

Until next time... it's summer, don't deprive yourself of one of life's simplest of pleasures - ice cream!