Thursday, July 29, 2010

spreadin' the word

Once I received medical clearance from the hospital, I felt more confident in sharing my story with friends and family. I've graduated to a new stage in this process and it's becoming so much more of a reality to me now, and I'm going to assume this feeling will only continue to grow. I'm looking forward to the next step of receiving word that they have found a match for my kidney.

Surprisingly, my mother was extremely supportive of me when I expressed to her that I was going to donate my kidney. So much so, that she piped up about an interest in the opportunity to donate as well! Hey, mom... they don't take AARP kidneys - love ya anyway. My siblings were on board with me as well, and as I expected, my brother responded with his quick sarcasm and humor that I love so much about him. I'm thinking little sister immediately downed a margarita after our phone conversation, but shared her support for me, as I knew she would. They both had questions, and I directed them to the blog to catch up on the past several weeks of my journey. What would I do without my tribe - I have the best family in the world. Ok, second best - I really wanted to be one of the Huxtables.

Talking to my friends about this was a little bit of a different challenge. I know I've pretty much opened up about this to the world, via this blog, but there are still some close friends of mine that I have yet to sit down and talk to.

One friend in particular, I'll call her Jess (because she's on the lam), reacted pretty much the way I had thought she would. Jess is in the medical field, and let me tell you, she sees it all - ya know, the gooey and slimy stuff.  So, I knew that her opinion and thoughts on being a living kidney donor would reflect the feelings of someone that is very close to medicine, doctors, disease, and unfortunate outcomes. Her concerns are valid and real, and I respect her for being honest and upfront with me. See, that's why she's my friend and that's why I love her. I admire her for her honesty and her ability to not judge, but yet express her opinions with a tender and serious intent. To top it all off, she told me that should I ever need her kidney, she would charge me for it. I'm feelin' the love.

I have yet to spend time with yet another dear friend of mine, and I hope that I will soon get the opportunity to chat about this and let her know that it's not my intent to keep anything from her, but that she is so special to me that I feel the need to tell her face to face. Jeesh, like being a new mom is more important than time with me? Hello? Put baby in the corner and let's have some coffee talk! I'm kidding, folks. I love her and new little angel to death and am very much anticipating our chat.

For those of you that are considering being a kidney donor, I want to offer my opinion on how to comfortably share your news with those you love, and not be overwhelmed with anxiety and doubt. I decided from the beginning that regardless of what reaction and response I received from anyone, my decision was made up and I would not be backing down because of an unfavorable comment. The challenge for me was to be able to share my decision with everyone and not get too emotional from their response. I hesitated with my mom, and I did with Jess too, but it was because I love them so much. It's human nature to want to feel support when you need it the most, but the reality is that you don't always get it. You also don't always have the ability to convince someone to embrace something the same way that you have chosen to. Our friends are special to us because they are not exactly like us, so we have to understand that they won't always be able to agree with us.

Another bit of advice to any donor that is anticipating a challenging discussion with parents and friends - use the internet to connect to other living donors prior to these talks. Having conversations with donors about their experiences throughout their journey will open you up to a realm of situations that you might be faced with once you share your story. I am so thankful to Cara, Hope and Diane for sharing their advice on how to cope with my hesitation about telling everyone of my decision. I felt so much more prepared after talking with them.

So, I'm thinking that there are still going to be many others that I run into who will inquire about 'news' that they heard regarding me, and I will have to elaborate. And that's A-OK with me! I'm happy to share my journey with others. The more I can spread the word about the opportunity we all have to be a living kidney donor, the more successful my quest becomes. If through my journey I can enlighten just one person to be a donor, then I feel like I have made progress. It's kinda like that Breck commercial from the 70's... "she'll tell two friends, and they'll tell two friends, and so on, and so on, and so on..."

Until next time...  download the podcast of the Bob and Sheri Show - you will be amazed as to how these two people can bring laughter and meaning to your life!

Saturday, July 24, 2010


I wanted to get to this about three days ago but I have been very busy with a freelance project, plus a girl has to sleep and eat, ya know! I mentioned in my last post about feeling so anxious to get the results from my exams at Weill-Cornell. I had anticipated approximately two weeks of waiting, biting my nails, tapping my fingers, twisting my hair... ok, you get the point. Anyhow, much to my surprise, I received a call on Thursday, July 15th, 2 DAYS AFTER MY TESTS!!! Can you believe it? Well, I can't.

I saw the 'missed call' on my phone and when I checked to see who it was, a rush of excitement mixed with concern filled my tummy. I hesitated for about 5 minutes before I returned the call to Marian. Over the past month I had put a lot of thought into how I might react should I get the unfortunate news that I would not be able to donate. I also decided that should it come to that, I must accept it for what it is and know that everything happens for a reason. However, in my heart I just knew that this was going to work out and that I would pass with flying colors. I did!

It was in the middle of the afternoon and I was at the office - I wanted to scream and shout but thought I might wake the dead that I work with. I can't describe the joy, relief and excitement that I felt. It was almost as if Ed McMahon rang my doorbell and greeted me with a handful of helium balloons and an envelope the size of a VW Bug. Ok not really, but close. The conversation was short and sweet and she told me that the next step was to release the results to the National Kidney Registry so that they could then find me a match.

Again, I was going to give this about 2 weeks, and then I was going to get on the horn and annoy everyone at the NKR to fill me in as to whether they had received the paperwork yet. They must have been having a slow day (or they want to get the Stimpson file off their desk), because I received an email on Wednesday, July 21st, from the NKR. Diane, the administrative coordinator at the Registry, shared the wonderful news with me that they would now begin to look for a match for me! WOO HOO! I certainly hope that they have better luck in finding me a match for my kidney than I have had trying to find a match for my lovelife. This could end up being a 4+ year quest if they encounter the challenges that I have in that department. Let's move on, shall we?

I'm so impressed with the flow of this process as of yet. I think we can all agree that when working with the medical field, speed is not exactly their strength. Not unless they want a payment of course. I am truly surprised at the seamless transition from one institution to the other. I know, they have done this before. I also know that they are experts in their field as well. I guess I just anticipated having to make numerous phone calls and send dozens of emails to get answers and progress reports from stage to stage. None of that has been necessary and thank God because I'm a woman on a mission and they don't wanna mess with me when I've gone too long without sugar. Oh, did I say that out loud? Anyhow, I'm so pleased, I'm grateful and I feel like a million bucks that the last two weeks have been so progressive for me.

Now I sit and wait, and wait, and wait. It's all good though because I am savoring my moments in my journey. I'm enjoying the process, the phone calls, the information, the new contacts I have made with other living donors, and most of all I have enjoyed the love and support that I am getting from all my friends and family. I want you all to know that your presence in my life has made me the person I am today, and I thank you for that.

Until next time... don't ever think it's a good idea to run a 5K when the humidity is at about 130% with the temp at around 80. Just a thought.

Thursday, July 15, 2010

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.

Monday, July 12, 2010

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
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.

Saturday, July 10, 2010

feelin' good

As I mentioned in an earlier post, my health is a priority in my life and I never take it for granted. I can honestly say that a day does not go by that I don't find myself thinking about my health, my fitness, my nutrition, my energy level and my great DNA I inherited from my parents. I'm not sure exactly why it means so much to me, but it does. Perhaps it's because all it takes is to observe all the sickness, disease, illness, disabilities and lethargy that plagues so many people. I feel so lucky to be blessed with solid, healthy genes. Sure, I get a cold once a year, and until this past year, the flu would bite me in the winters and bring me down for one week. Other than that, I feel fantastic.

My aches and pains are self-induced, from my workouts - the best kind of pain to have! I've got severe pain in my right shoulder, diagnosed as tendonitis/bursitis about a year ago. Overuse I'm sure, from countless hours at the gym over the past 15 years. I have bad hips, a result of a tilted pelvis bone. I also suffer from asthma - so, I take a pill nightly and it keeps my respiratory system under control. These are minor. Very minor. All this pain is manageable and although none of it will ever go away, it's manageable. So when I hear that a friend is suffering from Lupus, Multiple Sclerosis, cancer, Cystic Fibrosis, leukemia, or any number of diseases and conditions, I feel so damn lucky. I feel lucky because I know how wonderful I feel when I finish a workout. People that are living with debilitating illness can't experience that feeling of physical exertion. It breaks my heart that they are missing out on one of the most exhilarating feelings that a person can have.

My medical workup is scheduled for this Tuesday at Weill-Cornell. It's all I can think about now and probably for the next 3 days, as I anxiously await my next big step in this process. As I was running on the treadmill today, I couldn't help but think about my body, my internal body - the organs and the blood and my heart and bones. All these elements that magically work together so beautifully to create a being. So many questions were rolling through my head. I was watching the Tour de France on the TV during my run and admiring the athletes and their strength and perseverance. I started to think about my future kidney recipient, and I wondered about his/her state of health: How severe was their condition, could they participate in any physical activity? What were their limitations? Would they even want to exercise, if they could? The cyclists in the race push themselves far beyond their limits as they climb those elevations. What are the daily physical challenges that my recipient has to face? I honestly don't think that those suffering from kidney disease have the pleasure of being active. That, is why I needed to step up and share a part of me that I cherish so much. My ability to give a gift of my good health to someone that needs it will by far be the most meaningful experience in my life.

My daily workouts have been so much more significant lately, as the days draw nearer to my tests. I am so curious to see the results from all this and perhaps I won't be as satisfied as I think I should be. Who knows what they will find in all those vials of blood and that big volume of urine - ew, did I just say that outloud? Anyhow, I'm feeling good, really good, physically and mentally. I'm embracing the anxiety and look forward to my big day of poking and prodding!

Until next time... don't forget to brush and floss!

Tuesday, July 6, 2010

sharing my journey

Until now, there are few people that I have talked to about my decision to be a living kidney donor. I have of course shared much of my thoughts and concerns with Cara, but that’s a given since it was my blooming relationship with her that inspired me to make my decision. The one person that I wanted to share this with first was my mom, but I really felt that I needed to wait until after my test results are in and I have the green light to proceed with this, to do so. My guess is that it’s going to be a small fireworks display in upstate New York when I drop this bomb on her, but I guess we can’t always choose the paths that our parents hope we will. I am thinking in the long run, my mom will support me but I also know that not unlike most mothers, she is going to be overly concerned. I felt that inviting her into this prior to any real confirmation of the transplant would be premature and could bring some unsettling news to her that might not ever come to fruition. My mom is probably the most important person in my life and sometimes we need to treat each other with extra care and caution. It’s just love, that’s all.

My father lives out of state and last week he was visiting my family for his annual summer vacation. I decided that I wanted to tell him while he was here, simply because it was the only opportunity I would have to discuss this with him face to face. I felt it was only fair to him and didn’t want to disrespect him by telling him over the phone. I also think it’s important to be with someone in person when you are discussing something that is so very important to you. I needed him to know how serious and sincere I was about my decision, and that I had done the proper homework and research to put him at ease a little bit. I made up a small packet of literature that outlined the entire procedure and provided him with a copy of my itinerary for my medical workup at Weill-Cornell so that he was aware of all the tests and procedures I would be participating in. As I had predicted, he had many questions and was so supportive of me. Of course he is concerned, and I know that it was important for him to soak in all the information in the packet to get the whole picture. I have been keeping a log of any and all websites that I feel are solid and factual resources about living kidney donors, and I gave him that as well. I hope that he will take the time to read and review a lot of that data and watch some of the many videos I sent him links to, as I feel they are all really well done.

I have also chosen to talk to my niece, Amber, about this. I called her to ask if she would accompany me to NY for the day when I go for my tests. She didn’t hestitate to accept and she also promised to keep quiet about our little excursion until I’m ready to share more with my family. It was important to me to have someone close in my life be with me for the trip since I am anticipating a long and tiring day. Although I won’t be in any physical pain, I know myself well enough to know that I will be exhausted for the return trip and having her with me to drive home will be such a nice gift to me.

I have mixed feelings about conversations with friends and family regarding my decision to be a living kidney donor. I am so confident and comfortable with my decision, but I am also anticipating some negative reaction from many. The technical questions thrown at me will be easy, because all I have to do it point to the numerous resources providing the information about kidney transplants. It’s the personal questions that I might find will be difficult to answer. I’m a brutally honest person; I say what I mean and I mean what I say. I certainly wouldn’t want to offend anyone, nor do I want to be put in a situation where I feel I might have to defend myself with my decision. I suppose I will cross that bridge when I come to it. I have chatted with other donors to get some feedback as to how to ‘break’ the news to those you might anticipate will not respond so favorably. Every case is unique, and so is mine. There is no script, and I'm the type that speaks from my heart so I'm sure when the time comes, the words will flow smoothly. I’m a strong woman with strong convictions and live with purpose. I suppose that they will just have to accept that I now feel I have a purpose.

Until next time... our summers here in upstate New York are short and sweet - appreciate and embrace the sun and heat!