BOO!

Happy Halloween Kidney Warriors! I'm so happy to be celebrating my favorite night of the year. Influenced by the Celtic harvest festival called Samhain, a night when people wore costumes and lite bonfires to ward of ghosts and evil spirits. It was celebrated as fall turned into winter. After being Christianized in the eighth century by Pope Gregory the III it was celebrated as a dedication to the dead remembering the saints, martyrs and the dearly departed and was referred to as All Saints Day. Some of the Celtic traditions of wearing costumes and lighting bonfires remained. The evening before was called All Hallows Eve and that's what became our modern day Halloween and we celebrate it on October 31st. throughout the world. We still honor the tradition of wearing costumes and today we light jack~o~lanterns to ward off ghosts and evil spirits. Halloween has become a secular holiday and is geared for children as they go house to house trick~or~treating receiving treats along the way. It's a fun filled holiday filled with scary stories and haunted houses. The scarier the better. 

One of the best parts of Halloween is the sweet treats but as kidney patients we need to stay on track with our kidney friendly diets. So here is a list of some sweet treats you can feel free to indulge in: popcorn balls, jolly ranchers, lifesavers, gumdrops and jellybeans. A few treats that you want to eat in limited amounts would be caramel apples and toffee. You want to stay away from treats filled with chocolate and nuts as they contain lots of phosphors and potassium. As kidney patients we don't have to feel left out, we too can enjoy in the sweet treats of Halloween but we just need to follow some guidelines. 

Thankfully over the last few years more and more adults have been participating in Halloween activities like haunted hayrides, costume contests, and elaborate Halloween parties. These are just a few reasons why I love Halloween so much. The thrill of being scared and going trick~or~treating as a child with my parents are just a few of the fond memories of mine. But what I love the most about Halloween is the ability, for one night a year, to pretend your something/someone else. It's the one night of the year I get to pretend there is no kidney disease. I hope you enjoy your Halloween night and indulge in all those kidney friendly treats. 

Thank you for joining me once again for this Halloween edition of All Things Kidney. Keep on fighting all you Kidney Warriors! 

~ Kidney Blogger

A Fall Full of Fun Events

Happy Autumn and welcome back! It's nice to be back from my summer sabbatical. The last year has been extremely tough but coming out the other side has taught me a lot about life, death, and moving on. I'm glad to get back to what makes me happy, sharing my journey and spreading awareness about Kidney Disease and Organ Donation. Fall is my favorite time of year and I always look forward to all the upcoming events for the Northeast Kidney Foundation.

Northeast Kidney provides the following services through the donations they receive at all of their fundraising events:

* provide direct assistance to patients
* educate healthcare professionals, patients and the general public

* shape health policy
* increase organ donation

* raise awareness

The Catwalk for Kidney's has become one of Northeast Kidney's biggest events. It's so much fun; not only do you get to see great fashion but also get to hear inspiring stories of each models connection to Kidney Disease and Organ Donation. But you better bring some tissue as it will pull at your heart strings. The event includes a light brunch, unique shopping, and a silent auction. This is a fabulous way to spend a Sunday morning with family and friends. So save the date October 12th at the Saratoga Holiday Inn from 10 to 1pm. Come help support a wonderful organization and spread awareness for Kidney Disease and Organ Donation. For more information and to purchase tickets you can call 533-7880 or visit Northeast Kidney at:

http://www.healthykidneys.org/36-news/169-4th-annual-catwalk-for-kidneys-announced.html

This year I have to give a shout out to my long time friend Bonnalyn O'Sullivan! She's such an inspiring women and wonderful nurse. She will be one of the models strutting her stuff down the Catwalk. Thank you Bonnie for showing your support for this wonderful cause. 

There are also a few Kidney Walk/5K run events still left in 2014, If your in the Hornell, Oneonta or Poughkeepsie areas you still have time to register at  http://www.healthykidneys.org/:

09/20/2014

Hornell Walk.5K for Kidneys, YMCA - Hornell, New York

10/26/2014

Oneonta Walk for Kidneys, SUNY Oneonta - Oneonta, New York

11/09/2014

Walk over the Hudson for Kidneys, Walkway over the Hudson - Poughkeepsie, New York

All funds raised during these events are kept in the area in which there raised to help support the local kidney community with: 

• Patient assistance programs that help with medical, nutrition and housing needs
•  Free community screenings that can help identify people in early stages of kidney disease – when it’s most treatable
•  Public, patient and professional education
•  School based programs that can teach our kids about lifelong kidney health
•  Scholarship programs for young adults affected by kidney disease that helps them pursue higher education
•  Organ donor awareness including the recent launch of the Albany Kidney Connection, a vehicle for those waiting for a kidney transplant to be connected with potential altruistic donors
• And so much more

It look like it's going to be a fun fall with lots of Northeast Kidney events. I hope you can join in at these events to help raise donations and awareness for this worthy cause. Today there are 101,142 patients still waiting on the National Transplant List for a kidney transplant. This is why I write this blog to help spread awareness for all those waiting including myself. I've been waiting 6 years and 4 mos. We need more Organ Donors and New York we are way behind. As matter of fact, we are the 3rd worst in the country. We need to do better. If you have already signed up "Thank You" from the bottom of my heart if not you can sign up at  http://www.donatelifeny.org/

Thank you for joining me today and as always I look forward to your comments, questions, or concerns.

Keep on fighting, You Kidney Warriors! 

~Kidney Blogger

TGA Update & Photos

Welcome to the first update from the Houston Transplant Games of America. Team Northeast Kidney is bringing home the medals."Count 'em! 33 is the magic number. What, you say? 33 medals for Team Northeast at the 2014 Transplant Games of America. That is 23 Gold, 4 Silver and 6 Bronze" Says Carol LaFluer Team Manager of Northeast Kidney. Congratulations to Tom & Joan Jenkin's for receiving two gold medals each in this mornings cycling events. And to Tricia Shapiro who received a silver medal in the 5k race as well. Way to go Team Northeast. 

Below you can also find a link to the Transplant Games Opening Ceremonies last night:

http://new.livestream.com/accounts/9101896/tgahouston

*Team New England and Our Friend and Guest Blogger Robin Lataille at the Houston Games*
Team New England has done quite well at the Games and is bringing home gold and bronze medals.

*Scruffy Samuel making his appearance at the TGA*

Keep on fighting, You Kidney Warriors! 

~Kidney Blogger

Transplant Games of America Houston 2014

Howdy and welcome back Kidney Warriors! It's good to be sharing with you all once again. This week, I want to share updates and photos from the Transplant Games of America. They are currently being held from July 11th to July 15th in Houston, Texas. The Games represent the gathering of transplant recipients, living donors, and donor families to celebrate life. They "are a multi~sport festival event to help promote the need for Organ & Tissue donation. The purpose to show the world that transplantation is a treatment that does indeed work." 

Teams from all around the United States and Puerto Rico come to complete for medals and to enjoy their comrodery. These athletes range from ages 5 and under to 70+ and compete by gender in the following events: 

• 5K run (open to the public)
• Badminton
• Basketball
• Ballroom Dancing
• Bowling
• Cornhole (Bean Bag Toss)
• Cycling
• Golf
• Poker (Texas Hold'em)
• Racquetball
• Swimming
• Table Tennis
• Tennis
• Track & Field
• Trivia
• Volleyball

The Games are proof to the world that a transplant can truly be a "second chance at life." As someone who went through the transplant process, I can say with 100% confidence that it completely changed my life. I was blessed to have an amazing best friend who bravely stepped up to help save my life. Although my transplant only lasted five and a half years, I gladly wait for my second chance at a "second chance at life."  

Over the nest week I have athletes from Team Northeast and Team New England sending updates and photos that I look forward to sharing with you! It's an honor to be sharing the Games with you. They mean so much to me as someone who has gone through the transplant process and I hope one day to attend the Games myself. You can get more information about that Games at the following link http://www.transplantgamesofamerica.org/

I wish all the athletes the best of luck! Go Team Northeast and Team New England! 

Keep on fighting, You Kidney Warriors! 

~ Kidney Blogger

It's A Nice Day For A Walk

Welcome back Kidney Warriors! It's been a long, rough road of recovery and heartache. After eight weeks it's good to be back to feeling like myself. One of the hardest parts, after this surgery, was contracting pneumonia and being hospitalized for a week just six days after returning home from surgery. This really put me into a tailspin and made me wonder if I ever wanted to go through any of that again. But after two months of reflection, I realized that I needed to pursue getting a kidney transplant. The last month has also been tough with the death of my mentor and friend Kathe. She really me inspired to do the blog and it's been kind of tough writing it without knowing she was there to support me. But today I decided I needed to do in honor my friend. I think she would want me to continue sharing with all of you. I'm not sure how long I will continue but I knew had to finish what I started. 

*My Kidney Walk Team 2013*

I'm going back to where it all started with one of the first blog posts, The Albany Kidney Walk. On June 8th, 2014 The Northeast Kidney Foundation is holding their 11th Annual Kidney Walk/5K Run. This years event is moving back to the SUNY campus in Albany, NY. The SUNY campus allows Northeast Kidney to offer more family fun. Including pony rides, bounce house, and a celebrity dunk tank. The most important part of the Albany Kidney Walk/5K Run is this event is it biggest fundraising event for the Northeast Kidney Foundation. The Northeast Kidney Foundation helps provide:

• Patient assistance programs that help with medical, nutrition and housing needs
•  Free community screenings that can help identify people in early stages of kidney disease – when it’s most treatable
•  Public, patient and professional education
•  School based programs that can teach our kids about lifelong kidney health
•  Scholarship programs for young adults affected by kidney disease that helps them pursue higher education
•  Organ donor awareness including the recent launch of the Albany Kidney Connection, a vehicle for those waiting for a kidney transplant to be connected with potential altruistic donors
• And so much more

Registration to start a Walk Team or sign up for the 5K Run is now open. The 5K check~in time is 8 a.m. and the race starts at 9 a.m. The registration Fee for the 5K is $20.00 in advance and $25.00 the day of the event. The Walk Registration time starts at 9:30 a.m. and the walk starts at 11 a.m. There is no fee for the Walk but fundraising is encouraged for everyone. You can sign up for either the Walk or 5K Run at  https://healthykidneys.org/  to get started. 

The Northeast Kidney also holds Walk/5K Run events on the following dates and in the following areas: 

04/27/2014	Glens Falls Walk/5K for Kidneys, Adirondack Community College - Queensbury, New York
05/04/2014	Massena Walk/5K for Kidneys, Whalen Park - Massena, New York
05/18/2014	Binghamton Walk/5K for Kidneys, Otsiningo Park - Binghamton, New York
06/08/2014	Albany Walk/5K for Kidneys, SUNY Albany - Albany, New York
06/15/2014	Buffalo Walk /Tim Oehmler Memorial 5K, Delaware Park - Buffalo, New York
09/27/2014	Ithaca Walk/5K for Kidneys (LaChance 5K), Cass Park - Ithaca, New York
10/26/2014	Oneonta Walk for Kidneys, SUNY Oneonta - Oneonta, New York
11/09/2014	Walk over the Hudson for Kidneys, Walkway over the Hudson - Poughkeepsie, New York

I hope you will consider either going for a Walk or a Run on one of these dates or 

donating to one of these Walk teams or 5K runners. All funds that are raised in an area are kept in that area to help the local renal community. 

It's nice to be back Kidney Warriors! It's been a tough road but it's great to be sharing with all of you once again. As always, I look forward to your questions, comments or concerns. 

Keep on fighting, all you Kidney Warriors! 

~Kidney Blogger

March Sadness

Welcome back Kidney Warriors! It's with a very heavy heart that I write this blog post today. March has always been a cruel month for me, 19 years ago my mom was taken by Cancer. In five short months, it ripped through her lungs into her liver and took her life. It was some of darkest days of my life. From my misery I learned to be strong. It also taught me to be brave in face of the unknown. It taught me lessons which would help me survive the next 19 years especially when I was diagnosed with Chronic Kidney Disease.

On March 17th 2014 the cruel month of March would strike again. Kathe Lebeau, who was the Director of Patient Services and Public Policy at the Northeast Kidney Foundation, suddenly lost her battle with Chronic Kidney Disease. If it weren't for Kathe I would have never started writing this blog. She is the one who took me under her wing and became a mentor to me. Although I've only knew Kathe for a few short years she had become a very dear friend to me. Kathe and I had so much in common we were both fighting Chronic Kidney Disease and  both were NxStage Home Hemodialysis patients. Kathe also was an animal lover and rescued dogs this was something else we shared. 

 Kathe was a huge inspiration to everyone she encountered. She befriended every one she met and had a smile that was contagious. Although she lived everyday with a life threatening illness, Kathe still found the time to pursue her dream of becoming a clown. Spending much of her free time putting smiles on the faces of children. It was her way of sharing her joy of life with the world. She was known as "Kizmet" the clown which could not be more fitting. 

One of Kathe's biggest passions in life was being a patient advocate. She was a true Kidney Warrior! Everyday going into battle for all those suffering from kidney health issues. She often traveled to Washington D.C. to speak in front of the FDA and CMS to help forward the needs of kidney patients. The Kidney community has truly suffered a loss with Kathe's passing. She made an impact on every person she made contact with.

Kathe, I will miss you forever,  you touched my life and my heart! You will always remain an inspiration to me. I know you made a huge impact on the entire Kidney community. Rest in peace my dear friend. 

Keep on fighting,  you Kidney Warriors! 

~Kidney Blogger 

For All The Ladies....

Happy Friday and welcome back! Today I want to continue the discussion for American Heart Month and specifically about women and heart disease. Heart disease is the number one killer of women in the United States. It takes the lives of more women than all cancers combined. What most women don't know is that the signs/symptoms of a heart attack can present differently for a women than a man. I hope this lifesaving information will be passed on. Please share these will all the women you know, whether they have heart disease or not. 

1. Chest pain and discomfort ~ This is the most common symptom of a heart attack however women can experience in a different way than men. For women it feels more like a squeezing or fullness feeling and can be anywhere on the chest not just the left side. It's a truly uncomfortable feeling.
2. Stomach pain ~ Sometimes stomach pain indicators of a heart attack are mistakeIFn as the flu, heartburn, or a stomach ulcer. Reoccurring or intense abdominal pain should be reported to your doctor immediately. . 
3. Pain in the jaw, arms, back or neck ~These symptom are often missed as a sign of a heart attack because most women are looking for a pain in chest or left arm. These pains can be sudden or gradual. These symptoms can be so intense they can wake you from a sound sleep. Any unusual pains that are above the waist should be reported to your doctor. 
4. Sweating ~ Breaking out in a nervous, cold sweat is a common symptom that many women experience during a heart attack. 
5. Shortness of breath, nausea, or lightheadedness ~ The sudden need to throw up, a feeling of shortness of breath or feeling like you've ran a marathon and haven't moved, and sudden dizziness are all symptoms of heart attack especially when all presented together. 
6. Fatigue ~Most women experience extreme fatigue even days before a heart attack. With such extreme fatigue that they feel like they can't even do the simplest of tacks like walking to the bathroom.

IF YOU HAVE ANY OF THE SIGNS/SYMPTOMS OF HAVING A HEART ATTACK IMMEDIATELY CALL 911.

Another factor of heart disease for women may be linked to having a hysterectomy. This is something I just learned yesterday. I was at my cardiac clearance appointment for my surgery and my cardiologist shared this information with me. When a hysterectomy is completed the changes in estrogen levels can increase the risks of cardiovascular disease. This is why it's so important for women who have had a hysterectomy to step up and and be even more vigilant with their cardiovascular health. 

Since I will be having my surgery in a few weeks, I will be taking a leave of absence  so I can recover. It has been a rough road getting to the point of needing a hysterectomy and living with chronic kidney disease. I'm not sure how many kidney doctor's talk to their female patients about this issue. I know my kidney doctor didn't talk to me about this until it became an issue for me. Because our kidneys don't make the hormones needed to maintain healthy hemoglobin and hematocrit levels, anemia becomes a huge issue for many female kidney patients. When you add terrible monthly periods into the mix the situation only gets worse. This is one of reasons why I needed to have so many, many, many blood transfusions. After 14 years of living this way it not only wore me down physically and emotionally but also has lead to some heart issues. Although I know there are some risks for increased cardiovascular disease, I think in this situation the pros's far out weight the con's.

I really appreciate all those who have followed and viewed the blog over the past  9 months and I look forward to coming back and continuing this journey with you. As always I look forward to your questions, comments, or concerns. 

Kidney Warriors keep strong and keep the faith! 

~Kidney Blogger