TODAY is the second anniversary of my kidney transplant. I thought about calling Mandy and Ted in San Diego but it is just too early to call the West coast. While I am happy that this day commemorates a day of renewal and purpose for me, I can't but help but think of Hillary and Avery Stern who lost their husband and father. There are always two sides to fortune. Since I have received this gift of life, I have made it my purpose to spread the word about the life saving benefits of organ donation and the meaning of the gift of life. I can only hope that I am not wasting the opportunity that I have been given. There are so many existential questions that come up with life or death matters and making meaning out of them. It think one of my greatest challenges has been to grapple with the question to which there is no answer- would Bob and Brett be content with the way I have I lived given their sacrifices to me? Am I honoring their lives? No one wants to feel like they have lived a wasted existence, especially the second and third times around.

"Hmmmmmm....I wonder where we are going?" A blindfolded Scott asks.

All the girls joined in the fun! Mandy, Jill, Kate (now the new bride), Cynthia, and, (standing) Courtney, who was just about in labor at the party and gave birth to Chatham Grace just last week!
The Beauties of Camelot Park: Alison, J, and Jill - watch out for that Level 3 Sex Offender. Although I am 30 everyone tells me I still look 14! DANGEROUS!

I could have killed her! Mandy gives me the sob story about how she won't be making it out for this Thanksgiving holiday. I truly believed every word!
If anyone else has pictures of the party, please share them with me. I would greatly appreciate it!

Happy Holidays! I can't believe that it is already the first of December! Thanksgiving was wonderful split between my dad's house for the first round of turkey and my mom's for the second. The family got some joyful news when my eldest brother Scott and his wife Audrey announced that they were expecting in June. It will be exciting to have a baby around. Since I have Jude, I put in an order for a niece. Though we all know that gender doesn't really matter as long as the baby is healthy.

The big scoop for the weekend was this "Family Surprise." While I thought that perhaps it was my 30th birthday celebration, I spoke with Mandy who told me in no uncertain terms that she was not able to come home for the holiday. I knew that my mother wouldn't arrange for a party without her knowledge. Secondly, when Scott came home, he began asking questions about the surprise and my mother pointed out that I was being selfish: "not everything is about YOU, Jill." This was true so I began focusing on other options. I have to say that Scott, Audrey, Kristen, and Todd were great accomplices to the rouse. Todd took us blindfolded on a seemingly wild goose chase and we arrived back at the Seton Hoghlands Clubhouse for a surprise party! I've never had a surprise party and I was quite impressed that my friends and family were able to keep the secret from me for so long! Pictures will follow later. So many of the important people in my life were there, including Mandy and Ted, and Courtney fully 9 months pregnant and her husband GW. Old friends like Cyn and Kate were there with even older friends like Alison. My dad's side of the family was there too, which really made it special. My mom also had a psychic there to do readings and everyone was intrigued by the responses they got. My 30th birthday was actually in June but because I was sick, we put off celebrating. 30 for me was a real milestone. No one ever would have imagined that I would live to 30, but through blessings, prayers, a positive attitude and a lust for living, I shattered those odds! I am so thankful for all the people that have touched my life and have gotten me through the many tough times.
more later...

Some how, I'm not sure exactly how it happened, but all of my email contacts have been erased. So if you haven't heard from me, this is why. To remedy this situation, please email from the address you'd prefer me to maintain contact with you so that I can recreate my contacts as soon as possible. Without it, I feel that my Christmas card correspondence could be irreparably damaged.

I am trying the dating scene once again and really, really hate it. It sucks to meet new people and test the waters with the transplant thing. So far, I have found that by talking about the kidney first, it opens up a good dialogue. Kidneys aren't as scary as other transplants since they're done with such frequency and the surgical aspect isn't quite as daunting. Depending on the response there, I try to slip in the lungs- a much different animal than a run-of-the-mill kidney. Still even with some gentle hints it's a whole different story when it comes down to dealing with the consequences of post-transplant life. Recently, a book was published by Amy Silverstein entitled Sick Girl, and while you might think this is a hopeful, inspirational memoir about a heart transplant recipient and nearly twenty years of post-transplant bliss, you couldn't be more wrong. In fact, the book is the exact opposite. The author mentions the thought of killing herself several times and hates that her transplant has made her sick all these years. I was disgusted upon hearing about the book, that I went out and bought it. While I understand her perspective and similarly, her guilt for not being "thankful", her perspective is still valid. Not everyone that has experienced a transplant shares the same story. In the author's case, her transplant was a necessity by emergency. She didn't have twenty years of progressive debilitation riddled with long hospitalizations. There is a different type of "learning" that one experiences through chronic experience over an acute bout. Essentially, the author had a transplant without a lot of forethought of what life would be like after, without knowledge of how the transplant would consist trade-offs: a economic balance of transaction costs and benefits. If Amy Silverstein had not been in a life or death emergency and had gone through the rigorous work up that most patients have to go through, like a psychological fitness screening, it would be likely that she wouldn't be a candidate at all. SO, wait until it comes out on paperback, or buy is used on Amazon because all and all, it sounds more like a rant of a child than of a woman with 20 plus years to be thankful.

More of my own ranting later....

This is a picture of Lydia Halunen and me at Mandy's introduction party for Ellie.

Today was uneventful. I finally met up with the GI people and instead of doing a full colonoscopy and prep, they are going to do the biospies through a sigmoidoscopy,which doesn't go as far up your colon. It is dangerous to do a larger scope because of the level of inflammation. I have homework to do, but I am a bit uncomfortable for concentration. I have been worrying about what I am going to do about the work I have missed and how I am going to adjust my budget. I can't imagine what it is like for people that have no insurance and have a health care issue. My friend Kelli Belfatto is also having an abdominal crisis, but is going to the doctor. I'm glad she isn't one of those people that you have to argue with to get ther to got to the doctor's. She was sipping her colontini, an awesome new word to add to our Wiki, refering to the colonoscopy prep! Wonderful linguistic contribution Fatto! So I might not likely post tomorrow depending on how miserable I am and how much of my colon they snip out. I have an hour and half left to eat so I think I'll walk down for some Animal crackers to out of the vending machine to coat the stomach for the awful oral medicine they are shooting at me. So nothing exciting to report today!
GO SOX!
more later....

My bag is packed, and tomorrow, at a still undisclosed time, they will admit me to the Brigham and Women's Hospital, where they'll delve into my colon and snip pieces off in effort to find the disease process that has ravaged me since August. I have severe colitis, which is part of the reason I have been writing less frequently. I am hoping that despite the brave faces I have been putting forth the past few months I wil be able to smile for real without the aid of pain meds. I am also hoping that I will be able to work more regularly because my bottom line really sucks right now. I know that if it wasn't for school right now, I would certainly be in a bad place right now. School has given me something to look forward to. It's given me assignments and short term projects to take my mind off the day to day shit, literally. When I talk about my thesis ideas I can feel my heartbeat quicken and the excitement grow, like a new love. Truly, there can be no fear of commitment when you take on a dissertation topic. You have to jump in with both feet and let the passion you have for the topic drive you. The quest for knowledge drives you deeper and further into places you've never been in yourself. It's a lot like falling in love. let's hope my love life consists of more than paper and ink for the next two years! Otherwise, it could make for some nasty papercuts! Just kidding- you know I have to push the limits of decency... I have also been able to make some very good friends in a short time. I feel very lucky to have such a diverse group of people enter my life and our paths are intersecting now for no other reason on the surface than this program, but beneath, we have to be part of a bigger, more important picture it seems.

I was so blessed this month to meet Mandy's baby- Elena Rushforth Fates or EllieRoo,as she is adorably called. There is something about holding a new life that makes one aware of the fragility of life and the need to celebrate its beauty and newness. All of a sudden, my friend is now wholly responsible for protecting and guiding this new life to a safe place (but is that place ever a final destination). All my friends that are now mothers have truly embraced this new life position with such beauty and grace that I can only hope that I could obtain a similar position with my life choices.

Things have been rather busy since I last wrote. I am a bad blogger. I have started the Law and Policy Doctoral degree and I love the new challenge! Changing the way you see the world, then making a change to have a positive effect on the world. My dissertation is going to focus on strategies to increase organ procurement. Donation and altruism are great, but people are not giving. Right now, no other options are offered or are being considered. I plan to change that. I am pleased that I received financial aid, but contributions are always welcome! Just kidding...

The people are great! I have made some great friends and connections. The intensity of the program is like none I've experienced, but it is like a retreat,a transformation all of us our experiencing together.

I have also been pleased to be working for the family business. I am the official collections bitch, and it is good to be in a position where I can see progress, or the money coming in. I know that my grandfather would be proud. I am also spending more time with my deaf aunt, getting out of the house, taking care of the cat for her, and then going to movies twice a month. I know my grandmother would be happy about that. So all being said, I am coming into my own being recognized as an adult, managing responsibilities personally and professionally. Although I cna't operate a machine or do any heavy lifting, my position in the family business is just as important.
Off to read...

It's been quite a while since I have blogged and I am in a much better mental space than I was in my last post. My mother encouraged me to update immediately since my readers might think that I am really on the brink of bad things. However, those who know me well recognize that my states of occasional sadness are fleeting and each day brings a new opportunity.

Good news number 1: I got financial aid! Even with the poor remnants of my credit report, I was eligible and was able to cover this year's tuition. I breathed a huge sigh of relief realizing that if you let go of control of things that you have very little control of and let yourself come to peace positively about the issue it will work out. Since the program is new, I will have the opportunity to apply for scholarships and grants for next year instead of relying solely on loans.

Good news #2: I finally have a place in the family business. Although I am not getting paid in the traditional sense, it means a lot that I am being included and that I have responsibilities of my own. I am the Collections girl! Given my experience with creditors and my people skills (finesse) I have been pretty successful to date. I have been complimented by both my father and aunt, which is really, in all honesty, the payday I have been looking for all my life.

Good news #3: I have been put in touch with a young girl that is being evaluated for a double lung transplant due to pulmonary hypertension. She is being evaluated in Pittsburgh this week to see if she is a viable candidate. I sat with her and her mother for 3 hours last Friday and answered every question I could think of. I told stories and remembered back to the day 8 years ago when I was given a second chance at life. I was honest and told her the good and bad things. She was really cute, as she asked me if she highlight her hair. I pointed to my own and pointed out my roots- "of course you can honey!" We laughed. I really feel like, though I have been drawn to helping others all of my life, I feel best when I can see that I made a difference. I hope to mentor her through the trials and waiting, which is really the hardest part.

Good news #4: I have decided my dissertation topic. I am going to look at the law and policy around the economics of transplantation and organ procurement. I want to see if there would be a change if financial changes were made to the overall process, not buying organs, but giving incentives to cadaveric donor families, such as reimbursement towards funeral expenses or an estate tax credit. It raises a lot of eye brows and questions whether a market mechanism in this field is ethical- hmmm.... there's also a lot of research out there for me to sift through, but there is no consensus.

My body has been very tired with all the work I am putting in to school, work and thinking. This time though, the thoughts are positive!

More sooner than later!
-jill

I haven't been blogging much these days. I guess that I have a lot on my mind that has kept me away from sitting at the computer and letting loose. Perhaps, it was the article I read on blogging that wrote that it was a "performance" for the readers rather than a true, genuine place to write about life and share with friends and voyeurs. That really put me off.

But I don't own that definition or purpose for blogging. It gets me in the habit of writing and thinking critically about myself and my relationships. God knows, I need to do more of both. I have spent most of July in my house. This summer marks the least tan I have ever been. With the inability to sleep comfortably at night, I am religated to find the peace of sleep during the day. No one quite understands that my sleep cycle is flip flopped right now. I am hoping that with some continued practice I will get on a cycle like the rest of humanity and I can crawl out of the bat cave, my windowless bedroom, to see the light of day. I've fallen into depressive and anxious thoughts, as I am still without a pancreas and still without financial security for my Doctoral program. I think that I am a planner by nature, even though most times the plans require some form of modification. I like to look at what the future has in store and I like to look forward to it. It gets me through the doldrums of here and now.

In other news, Kevin and I are on a "break". I'm not sure that this will turn into a break-up. But there's a reason they call it a break and not a fracture. There's the question of what will be healed if anything. I am embarking on a lot of new things, so maybe the timing is right. I guess I'd rather be sad because I have no one to call me than to be sad because the someone I have doesn't call. I'm trying to keep everything in perspective.
Will be better at blogging ....until then.

It's been a while....
It's been a while since I have written anything or really have even checked my account. I have so much going on, though really it is very trivial. I have been doing a lot of reading for the Doctorate of Law and Policy program at Northeastern. I have been crunching numbers and variables to see what options I have as far as affording it, finding a home for the dog one weekend a month and a home for me while I am at school. It seems all insurmountable and yet I am giving it up to God to make it happen if it is meant to be. I don't think that my family understands my rationale for wanting a doctorate, but few have experienced higher education in the circles my family associates with. I tried to explain my purpose to my dad, who was looking at the bottom line. Never mind my goal of making a lasting permanent change within the American Health Reform Movement, especially targeting organ donation. It seems that my speaking engagements are moot, since they are volunteer and although my skill set is advanced, I don't think anyone truly understands what I am capable of. I gave my dad a copy of my admission's statement but I didn't get any comments.
I also have been experiencing huge amounts of anxiety and frustration as my wait for the pancreas continues. My MassHealth (medicaid) was cancelled this month and I spent one whole day this week working on getting it reinstated. The good news is that I have it back, the bad news is that my premium has tripled- ah the vicious circle of worry. Especially now that I have less income and even less when I can't work.
I thought it was going to be simple, but now that I have other things to think about and my health has deteriorated so that diabetes and digestion are constantly invading my thoughts, it is a hassle and easier just to stay home in the Bat Cave asleep than to deal with the outside world. I used to shop for comfort, but being on the verge of bankruptcy and the embarrassment that comes with it, I'd rather just hide. Now, The inner counselor tells me that such behavior is unhealthy so I have decided to make like a surgeon and sharpen my scalpel with a trip to the therapist to regain my perspective and my subjective take on my objective reality. Blah, blah, blah.

Today is a great day! I am here at work checking my email when I see a message from Northeastern, my alma mater for my Master of Science in Leadership with a concentration in Nonprofit Management, diploma to be mailed, as of May 5th. But this message contains a CONGRATUALTIONS header. That's right- I have been accepted into the "highly selective Law and Policy Doctoral Program" - woo hoo! It continues to say (from the program director), " I look forward to your participation in our unique scholarly knowledge creation and professional skill development adventure" OOOH a scholarly adventure, my favorite kind, as I have never been very outdoorsy.

I really fell like my work towards this degree will be life changing as I have selected to pursue a concentration in helath care policy, paying careful attention to issues related to organ donation, allocation, ethics, financing, etc. I feel that I will be the voice for both recipients and donor families. I can't wait to see the crop of colleagues I will be networking with, as the program is a cohort type.

Phew!

A very special Mother's Day to all my friends with children or children in utero. Not to mention my own very special MOM and step MOM and second MOM's like Mrs. Rushforth and My Russian Mom and NANA. AND to all those specials MOM's that have passed on. May they all be remembered for their sacrifices: past, present and future!

I am,
Jill

I would have never believed it myself, but last night my mother and I attended my Sigma Epsilon Rho Honor Society initiation at Northeastern. I thought there would be more people from my program there, but there weren't. It's sort of like Omicron Delta Kappa, the undergraduate leadership honor society accept that this one is for high scholastic achievement, carrying out your work and lfie so that you can look in the mirror and tell yourself you've done well, and Research, a lifetime commitment to seeking and passing on the truth. It was great with a bar and yummy food, including chocloate covered strawberries which is always a sign of a classy function. My real graduation is Saturday, but I need a day off so I am going to see my friend Kelli C and her husband Jon. I have worked a lot to keep me busy, I mean a lot for a handicapped girl, and I could crawl under my desk and sleep anytime now. It's beautiful day and I am thinking of sitting outside. I am also trying to think of what is next to come. How do I occupy myself while I wait for this pancreas? Any suggestions besides shopping and reading?

A very happy month of May to you! I haven't been writing much because there isn't much that has changed over the past couple of months. I am trying to keep myself as busy as possible so I have picked up some extra hours at mini-storage, just trying to keep myself occupied and perhaps a bit more in the loop. Kevin has been very busy with work and I have been trying to get him jobs and connections, such as with my aunt Deb since she knows everyone in town. I got my meds refilled so the struggle to sleep is less on my mind than in previous posts. But for me, even working 30 hours a week burns little Jilly out.

I am graduating this weekend, and have been invited to join an honor society at Northeastern so initiation is on Thursday night.

So I just got an email from Jenn Cray, the nice volunteer coordinator at NEOB informing me/us of an essay contest about your transformation from transplantation. The winner gets a trip for 2 to Pasadena, CA to be on the Gift of Life float in the Rose Bowl Parade. Here is what I have written as a first draft. Pleasesend suggestions for editting. It is supposed to be 500 words and I am over slightly, but 5 days in Cali for New Years' would really hit the spot!!! It's only for kidney, liver and heart transplants so I am trying to work the multiple organ angle.

Dear Selection Committee,

Thank you for the opportunity to describe the “Ride of a Lifetime” I have experienced through the miracle of transplantation and all the associated research, technology and caregivers that have made my ride all that much more smoothly. Growing up with cystic fibrosis, the “T” word was always in the back of my mind, but when my doctor finally told me it was time to be evaluated for a transplant, it still came as quite a shock. You see, I had battled the disease, with some success, despite some bumps in the road, all my life and was no worse for the wear. Unfortunately, my disease outpaced the speed and application of technology. But by the time I was in college, I couldn’t walk to class without stopping for air, and was asked to leave class on occasion because my coughing was too disruptive. I agreed with my medical team that I did need more extreme intervention, but not until I graduated: a lifelong goal I refused to forsake. In 1998, I graduated with honors from the University of Central Florida and moved back to Boston to be “listed.” I waited nearly a year and was fading fast. No one thought I would make it to my next birthday, but in April 1999, something so miraculously occurred, my family was speechless. My great Uncle Bobby (my grandfather’s brother) had an aneurysm and died. My family carried out his final wishes, one of which was to have his lungs donated to me. His lungs were a perfect match to me in everyway. I joke that now my lungs are 75 years old and puffing along great!

Sometimes, however, challenges are put before us in pairs. In 2004, I discovered almost accidentally that my kidneys had failed. I was living in Florida at the time and had to stop working to start on 4 days a week of dialysis for four hours each. But I didn’t give up! I received my kidney transplant through a circle of faith and friends after a year. My donor was a young, healthy, loving husband and father who died tragically in an accident. I felt a difference the minute I got the kidney. I could feel the toxins filter out of my system. I saw my color come back. I had received my second, yes second, lease on life!

Some people search their entire lives for a sense of purpose. I feel blessed that mine was presented so clearly to me. Though my body may have been a little battered, my soul did not break. I have learned through the pain that patience will rein; I have learned that with hope almost anyone can cope; and I’ve learned that your legacy isn’t always in what you live but what you leave. Each day I wake up with the goal of spreading the word of organ donation education and awareness. I live the example for my donors, who are with me every step of the way. I have earned two Masters Degrees and volunteer weekly, speaking and serving the New England Organ Bank. When I am healthy enough to work, I plan on using my degrees to honor my donors and donors everywhere in a way that pays homage for their sacrifice. I am what remains for the families that they have left and the legacy by which I am graced.

I recently received an email from Emily Wilcox regarding the letter I sent to the Old Colony Memorial, Plymouth's local newspaper. Emily Wilcox wrote the article about Chuckie Vandini, the man who recently died in a horrible yet preventable motor cycle accident. His family donated his organs. I always do something in April to promote organ donation awareness. This year, between my myspace page (myspace.com/don8life), letter to the editor, and volunteering, I think that my donors and their families would be pleased. Anyhow, Emily wrote that I had made her day with the positive reaction to her article. Yippee! I am not sure if they will be printing my letter, but at least Emily had a chance to know that her writing was well-received and inspirational.
More later...

It's been a while since I have posted. I have been in a funk after Papa's death and being sick most of March. I missed out on a lot because I didn't want to get anyone else sick and I felt better off just staying in bed. Recognizing my depression, I got up and got on with things, which has made me a lot better. It's April, a month of renewal, though Spring has been elusive. I celebrated my 8th lung transplant anniversary (4/10/99) and I can't believe it has been so long! I am currently number one on the pancreas list after being reactivated from status 7 (inactive, accruing time) due to my bout of pneumonia and hospitalization back to staus 1- ready to go! I would like to thank everyone (especially Kevin) who supported me and dealt with me while I was sick emotionally and physically. I appreciate all the cards and emails. I am so blessed to have friends and family like you!

April is also important because it is Donate Life month. I recently submitted this letter to the editor of the local newspaper:

Dear Editor,

As I read the article by Emily Wilcox focusing on the late Mr. Vandini’s tragic death and subsequent gift of life, I was particularly touched. I did not know Chuckie Vandini personally, but as a two-time transplant recipient awaiting a third, I know the value of his legacy. I know the value of a new lease on life. On behalf of his recipients and recipients everywhere, I want to thank his family.

April is National Donate Life month, focusing on bringing awareness and education to organ and tissue donation. Currently, there are nearly 100,000 Americans waiting for an organ transplant. For many, transplantation is their last hope, a final effort to sustain life. In my case, I was losing my battle against the ravages of Cystic Fibrosis. I was 21 and not likely to see my next birthday. However, with the passing of my great Uncle Robert Balboni and the donation of his lungs to me, I have not only survived but thrived. Last week, I celebrated my eighth anniversary. In fact, I celebrate life everyday and honor his legacy by speaking and teaching others through my volunteer work with the New England Organ Bank.

Sometimes lightning does strike twice. In 2004, I experienced kidney failure. After a year of dialysis left me with a bruised and battered body, I received my second transplant. My kidney came from California. A young, healthy husband and father died tragically in a car accident. Thankfully, he had made his wishes clear to his family just week’s before. I have spoken with his wife, family, and friends to let them know that their loss was not in vain and they are content to see that part of him lives on in me.

A recent Gallup survey has found that while 90% of Americans have heard of organ transplants, only 30% know the proper steps to become a donor: designating it on your driver’s license, signing an organ donor card, and talking to your family. When I speak about organ donation, I try to drive the point home that whether you want to donate your organs or not, let your family know so they don’t have to try to figure it out while dealing with such a huge loss.

Currently, I am waiting for a pancreas transplant to help with my brittle diabetes. While my body may be broken, I am no worse for the wear. I am blessed to know and to treasure the gift of life.

Sincerely, Jill ....

So what do you think?

Dear Friends,

It comes as a great shock to all of us, but my grandfather unexpectedly died this weekend. The only redemption I can see is that while it was unexpected, it was quick and he did not suffer. Just last week he had purchased his fourth motorcycle and was riding about town on a good day. He couldn't wait for the spring to really arrive so he could get out on his bike. Yes, the services are at Cartmell, the funeral home with the good mints, but I feel so numb inside that the mints don't matter.

For almost always, I thought that I would die long before my grandfather. With his unswerving spunk and zest for life, even the two times he battled cancer, dumped his bike, took a fall breaking his leg, I knew that he was a fighter and would make it through. Perhaps the only thing I ever considered that would kill him was the lonliness and broken heart he suffered after losing my grandmother. He lost his faith and went astray from his true heart, if only for a short time he was recreated by his anger from his loss.

I believe I got my fight and ability to bounce back from him. Part of me too, is angry with the cards I've been dealt, but he always told me to pick yourself up and carry on, my dad is like that too but with less of the emotional fervor. But what now? I believe that he will be in a better with my grandmother, the love of his life, who will be buried in her urn in with his casket, as they both wished. I know that I will go on, but it will be so much different. What becomes of the compound? What will their legacy be? What will my legacy be with out my guiding hand to push or pull me through to make mee feel like anything was possible, even fireworks on my thritieth birthday if it gave me the wherewithall to get healthy. Since my grandemother has died I have thought about her everyday. Now with both of them gone, I know they will take a large part of my mental space. He helped keep me grounded, emotional, physically, financially with just about everything. He loved to reminisce about the "good ol' times," the times when his brothers were alive and Liberty Street was his life and he longed for nothing more. Those were simpler times, full of lessons and times to be cherished even though they have passed and now collect dust.

He was 78, but his birthday is the 31st and he would have been 79.

HIS OBITUARY FROM THE BOSTON GLOBE...

Joseph Anthony Balboni Sr.

Of Plymouth, age 78, died on March 24, 2007 at the Jordan Hospital. He was the devoted husband of the late Janice M. (Seaver) Balboni & loving father of Joseph A. Balboni, Jr. and his spouse Ann, and Debra Balboni and her spouse Merle Frissell all of Plymouth. He was the cherished grandfather of Jill, Christopher, Douglas, Jennifer and Johanna; also great-grandfather of Jude. The Funeral will take place on Tuesday morning at 9:15 from the Cartmell Funeral Home, 150 Court St., PLYMOUTH followed by a Funeral Mass at St. Mary's Church in No. Plymouth at 10:00 AM. Friends may call at the Cartmell Funeral Home on Monday from 4-7 PM. Interment will be in St. Joseph's Cemetery, Plymouth. Donations in his memory may be made to Cranberry Hospice, Inc., 36 Cordage Park Cr., Ste 326, Plymouth, MA 02360. For more info or directions http://www.cartmellfuneralhome.com/.

Happy March! Unfortunately, it hasn't been so great. First, on the first, Kevin's dad passed away. Although he was ill and infirm , it was still unexpected. Heather's birthday was on Sunday the fourth, but we weren't sure, even though invitation were out, the cake was ordered and everything was ready to go. Kevin wasn't sure whether or not to have it. His mother is now living with him since Kevin's father had to be put in a nursing home and really couldn't manage on her own. She said that her husband would've wanted Heather to have her party so the Dora Show went on. Kevin's birthday was the next day. I took him to Isaac's, like he took me for my birthday. Then we went to get his present: sneakers, his choice I might add. The visitation service was at Cartmell (which I love because of the free mints), but I had to present a class project and I couldn't let my team down. A huge percentage of my grade depended on this presentation. Kevin was peeved but I know he wanted me to be there. That night at class, I was freezing but I got through the class. When I got home I immediately took my temperature, it was 101.9. So I scoured my house for some tylenol, no luck. I couldn't really sleep and developed cough. I told Kevin that I didn't think that I could go to the funeral since it was going to outside and 10 degrees. He told me I was essentially a bad girlfriend. I tried to explain that I was probably was going to end up in the hospital. I think I made a rude remark like why would I go to a funeral that could lead me to death? Terrible of me, but he doesn't often get it. Needless to say, I didn't go. My mother brought some tylenol, which helped a bit, but I went to Jordan Hospital for a chest x-ray. When I saw the film, it looked like pneumonia. Whe the doctor's got the report they shipped me to the clink. I have a bit of a sinus infection and I can't hear very well either.
Luckily, the patient and family services department provides wireless internet access- psych! I am not cut off from the word and needing to use the phone.

Vital sign time.
More later...

Just another update: There is still nothing new to report. I did write an email to my doctor, who has been on vacation through this whole "stand by" situation. Nonetheless, that is what I am doing. I have had a bit of relapse on the retail therapy front, but luckily, I have been working so I haven't done much damage. I have been trying to organize my space so that at least one space in my life is uncluttered. As it turns out, more things have ended up with labels than truly organized. I still have difficulty sleeping, but I have a new class for reading so I am hoping that will do it. I am deflated about school and the DLP- I still haven't heard whether or not I have/not been admitted but I have a bad feeling and I haven't yet come up with a practical plan B. So blue is my color right now, even though the shoes I bought were pink (and very cute).
More later... send positive thoughts my way and keep me in your prayers. (thanks)

IMPORTANT SURVEY INFO. WE'VE BEEN WAITING FOR....
U.S. Public Is Taking Action to Support Organ Donation, Gallup Survey Finds
February 15, 2007
HHS's Health Resources and Services Administration (HRSA) today announced the results of a 2005 Gallup Organization survey which indicates that Americans continue to strongly support the donation of organs and tissues for transplantation. More importantly, the survey also finds that far higher percentages of Americans have taken personal actions to become organ donors since a similar 1993 survey on donation.
The percentage of individuals who have granted permission to donate their organs or tissues on a driver's license or an organ donor card reached 53 percent in 2005, almost double the 28 percent who had done so in 1993. HRSA Administrator Elizabeth Duke urges anyone interested in becoming an organ donor to learn how at OrganDonor.gov. HRSA directs federal efforts to promote donation.

Nearly all of the survey respondents – 97 percent – said they would donate a family member's organs if they knew the person's wishes ahead of time. The 2005 survey reported that 71 percent of Americans had talked to a family member about their donation wishes, up from 52 percent in 1993.
"Make sure you tell your relatives about your intention to donate once you sign up. Sharing your intentions with family members is an important part of the donation process," Duke added.
Gallup also found that among U.S. racial and ethnic groups, Whites (61 percent) in 2005 were most likely to indicate donation on their driver's license, followed by Latinos and Asians (both at 39 percent), and Blacks (31 percent).
"The results of this survey show that more Americans than ever are aware of the importance of organ donation and are taking action," stated Duke. "But we must do more, particularly in minority communities where support for donation is weaker. I encourage more families to discuss this issue, because their decision to donate in a time of grief can bring hope and life to many others."
The Gallup Organization's 2005 National Survey of Organ and Tissue Donation Attitudes and Behaviors queried over 2,000 Americans concerning their attitudes toward donation of organs and tissues for transplantation. The study replicates the 1993 survey and includes new items as well. For more information on how you can become an organ donor and more detail on the Gallup survey results, visit www.organdonor.gov/survey2005.
The Health Resources and Services Administration (HRSA), part of the U.S. Department of Health and Human Services, is the primary federal agency for improving access to health care services for people who are uninsured, isolated or medically vulnerable. HRSA also oversees a national organ and tissue transplantation system. For more information about HRSA, visit www.hrsa.gov.

Sorry for the delay in posting, I know that many of you have called today looking for updates...
Well, 5am came, then 7am, both passing without a call or word on my status. At 9am I called the doctor (my doctor is on vacation for 2 weeks), to find out some word.
"Oh...I don't know. I haven't heard from the oprgan bank. I don't know if the organ is available yet, if they passed you over or what. I'll let you know when I hear something." It is now 3:30 and I have been trying to nap or watch the Family Feud in order to distract. Basically, unless, I am told otherwise, am still on standby. But I am planning to work tomorrow and my mom is going home and just operate normally. It is a huge stressor and a bit of a let down after such an adrenaline rush. When I have spoken today, I think they are also frustrated that I don't know. I just don't know. In any case, you will know when I do.
-Jill

Hello Everybody. I hope that you are enjoying your Valentine's Day and National Donor Day. I have some news...I got a call from the Brigham at about 8pm this evening telling me that they have a very good pancreas that's about to become available. I am number 2, so they wanted me to be ready. The next step is to WAIT for another phone call, possibly around 5am. It all depends on how the pancreas looks. The anxiety is killing me, but I called Kevin and my dad. My mom is here for a sleep over and to help manage the stress. So more will come...

Dear Friends,
It is with a great amount of honor and pride that I introduce Mrs. Hillary Stern and Miss Avery Stern, the family of Brett, my kidney donor. I often think of them, and I know many of my blog readers do as well, so now I can share them with you! I have received many inquiries about Avery: you'll be glad to know that she is a beautiful (as you can see), happy 3 and a half year old, busy with swimming, dancing and school! Since Heather has come into my life, I have often thought of Avery and how she was doing, knowing that they are about the same age. Are they doing the same things?
As I discussed with my mom recently, we questioned if the timing was right to check in with the Stern family. Hillary actually contacted me for an update. December 1oth was my 1 year kidney transplant anniversary and I wondered whether or not it was appropriate to contact her around the holidays. Thankfully, she found me! I am grateful to have this connection since so much of my recovery was spent reflecting on the joys and blessings of my life, so far. I have much more living to do!

Gosh! Where has January gone? I have been really focusing on school since this is my last required class! I am not sure whether or not I will walk at Northeastern (Saturday, May 5th), but my attention is already set on my next challenge- the Doctorate in Law and Policy. I have been preparing my personal statement wondering is this too personal? Will my personal statement make me unique or make me look like a drama queen (that I am)? In any event it has helped me get back into the creative process of reflecting and writing.

Still really having insomnia problems...
until next time...

I haven't posted since before Christmas so I figured I should get down to business. Not that there is a whole lot to report. I have been generally in good health, although holiday food did not sit well with me, nor did the stomach bug I got after New Year's which persisted for almost a week. I went to the Lung Doctors and the Kidney folks and both had few complaints. Though I was a bit dehydrated given the stomach issues. My weight dropped to 120 from the lack of absorption, not that I was complaining. I have been doing a lot of reading and have read four books in a month. Since I have such trouble sleeping, the books have helped me relax although having a bedrrom with no windows, I find that I sleep all day.

So did you make any New Year's resolutions? I did and I am hoping that my friends will help me along the way. First and foremos, my resolution is to get my financial house in order, even if it does mean filing for bankruptcy. You really can't be sick and live the lifestyle to which I was accustomed so I have put action steps in place and mini- baby step objectives to make things more manageable. I have read every online article on MSN money and Oprah's debt diet, and all the tips in Real Simple. My first objective is to stop buying magazines in which 60% of the content is advertising anyway. My next objective was to save all my receipts and my bank statements from 06 and categorize them to see where my money goes. Any guesses? Not shopping for clothes, but to Target, Bull's eye, they've got me. So I have taken to list writing, doing errands in bulk and avoiding the Red Monster. I find that I can ge tthe household stuff I need at Benny's (a Plymouth staple for many generations for household, plumbing, paint and automotive supplies, much less glamorous than Tar-je`. I paid off one looming debt with my holiday money and although that's the last thing we all want to do it has been a huge burden. Lastly, so far, I am taking on a second day at ministorage and although it isn't much we could all use a little extra. I am debating do my taxes myself, because I do anticipate a refund, but then again, I am not the best with numbers and I would hate to make a costly error.
My next resolution is to keep in better contact with friends and family. I now have a land line (listed) in case of emergency and I really need a phone with better reception. I looked up Sprint's user map and it seems that all of Plymouth is the same color for service so maybe it is my cheap phone. I am considering a Treo, but that seems like it would contradict the above so I am torn. I could really use a nap right now.
School has started again and I am taking my last required class, but since I have a credit from last year's kidney transplant semester, I figure I will take an elective after the first 6 week class finishes. I am still involved with the organ bank and I got a standing ovation at Stonehill when I went for my second visit. I think this is one of the reasons I am here on this planet and it makes me feel very proud to spread the word.
In more superficial news, I cut my hair to about chin length because the lack of sufficicent nutrients and the medicine was making my hair dry, brittle and frizzy so I cut it off. No special salon job, just a quickie at Procuts, North Plymouth for life! Alison will once again be in the neighborhood moving into her grandmother's old house. Just like the old days. By the way- she turned 30! this week. Only 6 more months to go...