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

Love Your Heart

Happy Valentines Day, Kidney Warriors! February is American Heart Month!  Heart  disease, stroke, and high blood pressure are the #1 cause of death in the United States. High blood pressure is also one of the leading causes of chronic kidney disease. This is why it's so important as kidney patients we keep our hearts healthy and our blood pressure under control.  Today I want to share some "heart healthy" tips.

1. Know your heart health numbers ~ Establish with your doctor your baseline levels for your cholesterol, both good and bad, blood pressure, weight, BMI . Keep a yearly appointment to follow these numbers to make certain your on track.
2. De~Stress your heart ~ Stress causes increased high blood pressure, increased heart rate, and increases the stress hormone cortisol. Learning to "unplug" from life is one good way to reduce stress. Putting away the electronic devices for at least one hour a day has been proven to reduce stress
3. Get a heart healthy support system ~ Find an exercise buddy. Having a good support group of family and friends both lowers blood pressure and lowers the risks of heart disease.
4. STOP SMOKING ~ Smoking is one of major causes of heart disease.
5. A little alcohol goes along way ~ For women drinking one glass of alcohol a day and for men drinking two glasses of alcohol can help reduce the risk of heart disease.
6. Strengthening your heart with weight training ~  Reducing your  percentage of body fat, keeping your weight down, increasing your muscle mass, and increasing your aerobic endurance are just some of the benefits of strength training. It also increase your good cholesterol levels.
7. Reduce your salt intake ~ Reducing your salt intake lowers blood pressure, be certain to read food labels for added sodium especially in prepared food.
8. Eat a healthy diet ~ Eat plenty of fruits and vegetables at least five servings per day. A diet low in saturated fats, trans fat, cholesterol, and high in fiber.



As you can see many of tips for a healthy heart are also tips for keeping healthy kidneys. Many CKD patients are at risk of heart disease. Heart disease is any cardiovascular disease or CVD that affects the heart and/or blood vessels in the heart. Some complications that often found in patients with CKD can lead to CVD including: anemia, high blood pressure, high calcium and high phosphorus levels, and diabetes. Treating these conditions can lead to an overall healthier life and help you feel better.





On a very personal note I would like to THANK everyone who has given blood. I have needed many, many blood transfusions over the years and without blood donors I don't know where I would be. Please join me during the month of February to raise awareness for heart disease!

Thank you for joining me once again and help me spread the word throughout the month February for American Heart Month. As always I look forward to your questions, comments, or concerns.

Keep on fighting, you Kidney Warriors!

~ Kidney Blogger

What would you want to know?

Happy Wednesday and welcome back Kidney Warriors! The other day one of my online support groups posed an interesting question "What advice would you give to someone who was just diagnosed with kidney disease?"  The first thing I would tell them, after 15 years of living with kidney disease, is educate yourself about the disease . The more you know the more power you have over it. That's the first thing I did when I received my diagnoses. I knew absolutely nothing about kidney disease and really the only thing I knew about kidneys was that they cleaned your blood. Boy did I learn about how important the kidneys are to your overall health. Those two little bean shaped organs do some amazing things for the body. What I took away the most about learning about kidneys is they are 24/7 365 workings machines.

The second bit of advice I would share is, that your not alone in this battle. With the introduction of social media like Facebook and Twitter there are so many different support groups to provide education, support, and a place where others can relate to your experiences. I'm part of two different online support groups and both have provided me with support and comfort when no one else could relate to what I was going through. There are also offline support groups like the "Kidney Club" offered by The Northeast Kidney Foundation. If you live in New York please visit www.healthykidneys.org to find a local "Kidney Club" and if your area doesn't have one then contact Northeast Kidney to see if one can be setup in your area.

The next piece of advice I would share is, you can live a good life with kidney disease. And if  and when you advance to dialysis it's still a doable life. Yeah dialysis sucks but it will save your life. Having a good attitude towards dialysis is vital to the success of your treatments. As soon you learn that you need to start dialysis that is when you should start educating yourself about the different methods of dialysis. Please see blog posts "Kidneys and Dialysis 101, Dialysis 102, Dialysis 103, Dialysis 104 and Dialysis Wrap Up" to learn more about different dialysis methods.



The fourth piece of advice I would share is, that it's key to embrace a renal diet. Whatever stage of kidney disease you're in you should educate yourself on what's best during that stage. Each stage has different requirements and it's important to know what each is. Protein, sodium, phosphorus, and potassium are just a few things in your diet that you'll need learn how they affect your failing kidneys and the impact they have on your blood levels. This was one of the biggest challenges for me but now with a proper diet I have excellent blood work and feel so much better.

The last piece of advice I would share is, remember you are the captain of your own health care ship. If you don't like the doctor you are working with then find a new one. I have "thrown more doctors over board" than I can count. If you have questions, ask. If something feels wrong it probably is. Learn to listen to your body. You the best person to say when things are going wrong so pay attention to the signs. 

What would you want to about Kidney disease? Please feel free to leave a comment and ask! I would love to hear your questions weather you have just been diagnosed or you have lived with kidney disease for a long time. Thanks for joining me today! 

Keep on fighting, you Kidney Warriors! 

~Kidney Blogger