Dispatches from Durban #2 ~ Team Northeast Athletes ~

This is Barbara Breckenridge; she is one of the Team Northeast athletes who are part of TEAM U.S.A now competing at the World Transplant Games in Durban, South Africa. Barbara, a kidney transplant recipient who received her transplant 14 years ago, has competed in several games, and has over 25 medals to date.  Barbara is also the Buffalo Community Relations Director for the Northeast Kidney Foundation. She participates in Track and Field events and won a Gold medal in the today's 5k race.

This is Robin Lataille, also a Team Northeast athlete who is a member of TEAM U.S.A competing in the 2013 World Transplant Games going on now in Durban, South Africa. Robin had a kidney transplant in 2010 and is competing in her second World Transplant Games. Robin has also won several medals and competes to "honor the donor families." She believes since receiving the gift of life, it's important to live life to the fullest. She will participate in swimming events and a 5k road race.

This is Tom Jenkin, another TEAM U.S.A member who is a Team Northeast athlete competing in the World Transplant Games. Tom is a resident of Queensbury, NY which makes him my neighbor to the north. So proud to see a local transplant recipient there representing all NYS Kidney Warriors! Tom has also competed in several World Transplant Games and continually brings home to Gold for Team U.S.A. Tom participates in both cycling and track and field events. Tom believes that "the kidney transplant restored my life and made it even better than it was." Tom also won a Gold medal in the 5k race today. 

* Imagine!  Monkeys on the 5k course where Tom and Barb brought home the Gold*

It's just amazing to see these transplant recipients completing in the World Transplant Games. I hope they know how proud and inspired we are by all of them and wish them the best of luck in each of their events! I'm so happy to be sharing the sights and adventures from South Africa and hope you're enjoying it as well. 

*Beautiful view of Coast of South Africa where the games are being held*

Thank you following the "Dispatches from Durban;" please come back throughout the week for more updates.

Keep on fighting all you Kidney Warriors!

~Kidney Blogger

Dispatches from Durban #1

Some photos from the first day of  the World Transplants Games in Durban, South Africa as the participants gather to register and get ready for a week full of excitement and competition. Wishing "Team Northeast Athletes" and TEAM U.S.A the best of luck!

19th World Transplant Games

HOPE! 

The one thing every transplant patient needs is hope and nothing says hope more than the World Transplant Games. The games "celebrate the triumph of the human spirit and the hope that is behind every transplant." This year the games are being hosted in Durban, a sun filled city on the coast of South Africa. In the pursuit of gold, silver, and bronze recipients from more than 55 countries come together to compete and share their transplant experiences. The games will host 13 different sports including tennis, track and field, and cycling. And Team Northeast transplant athletes will be there as part of Team USA:  Barbara Breckenridge, Robin Latalle and Tom Jenkins.  Barbara is a kidney transplant recipient, has competed in several games, and has over 25 medals so far. At age 70 there is no slowing her down. Barbara is also the Buffalo Community Relations Director for the Northeast Kidney Foundation. The athletes will be sending updates called "Dispatches from Durbin" and thanks to the Northeast Kidney Foundation I will be sharing them throughout the next week. The games are being held from July 27 to August 4, 2013.

 The official song of this year's games is called "Our Hearts Are Beating;" it's a beautiful song about the joys of organ donation and giving someone a second chance at life. I couldn't help but get choked up every time I listened to it and I think you will be touched by it too. You can download it from their Facebook page called "Raise Your Voice" or from the World Transplant Games website @ www.wtg2013.com . The purpose of the song is to raise awareness for organ donation and transplantation.

Currently there are over 118,000 people waiting for a lifesaving organ transplant, with 96,928 of them waiting for kidneys, in the United States alone. To see all these recipients come together in South Africa is just one of the positive outcomes of a transplant. It gives hope to all those waiting. This is why raising awareness for organ donation is so important and why it's just one of the missions of the Northeast Kidney Foundation. Remember you can be a Hero, Be an Organ Donor. You can sign up online at Donate Life @ http://donatelife.net/ or when you renew your drivers license. Talk to your family about your wishes and keep the conversation going!! 

Thank you so much for joining me on this journey, I hope you stop back during the next week to see the "Dispatches from Durbin" and follow Team Northeast transplant athletes' adventures. 

Keep on fighting all you Kidney Warriors! 

~Kidney Blogger

Kidneys and dialysis 101

Okay before we go much further let's discuss the functions of the kidneys and how important they are to our overall well being. Our kidneys are 24/7 cleaning machines. These twin shaped organs located below the rib cage work 365 days a year removing waste from the body.  Each and every day these organs pump about 200 quarts of  blood through about 140 miles of tubes. On top of removing waste products,  the kidneys remove extra fluid, produce hormones like Erythropoietin or EPO, and also help maintain the balance of minerals and chemicals to keep us healthy. And we can’t forget to mention one of the most important functions of the kidneys  which is to control blood pressure.

High blood pressure affects all the cells in the body including the kidneys which in turn can prevent them from doing their other jobs.  This is a major cause of CKD so if you are at risk for high blood pressure it’s very important to get regular checkups and follow your doctor's instructions to keep it under control. I had to make many changes in my diet and lifestyle that included reducing my salt intake. Now I don’t even keep a salt shaker on the table. I have also found it helpful for me to monitor my pressure at home and share these results with my doctor.

Erythropoietin is the hormone which is responsible for directing your bone marrow to make new red blood cells. Without this hormone your red blood cell production declines and you become Anemic. This condition either requires a replacement hormone or a blood transfusion. Many CKD patients, like myself, require injections of  a synthetic EPO hormone on a weekly basis. Anemia causes extreme fatigue and overall weakness. Other side effects of anemia include making you feel short of breathe and look pale. For me, anemia has been one of my biggest challenges with CKD.  Please see my blog entry "Anemia and Fatigue in CKD" to review information about anemia. Over the last ten years I have needed multiple blood transfusions due to severe anemia.

Health fairs are just one of the community events the Northeast Kidney Foundation holds to educate the public on the what the kidneys do and the risks and prevention of CKD.  On July 27 they are hosting the "Troy Block Party Health Fair" and will be doing risk assessments. This is just one way for them to build awareness about Kidney Disease. The event will be from 1:00 pm to 6:00 pm and you can contact Robert at (518)527-0649 or visit http://www.healthykidneys.org/ for more information.

Chronic Kidney disease is the slow loss of these functions and slowly gets worse over time until there is little or no kidney function left and this is called End Stage Renal Disease or kidney failure.

Once you reach  this stage you will require either a kidney transplant or dialysis. Most people start with dialysis. Dialysis is a medical process in which a persons blood is cleaned of toxins and extra fluids replacing the normal function of a person's kidneys. Since I have been on dialysis for the last five and a half years we are going to talk about the different forms of dialysis, the benefits of each, and how to live a healthy life while living on dialysis. The most important thing to know about dialysis is you CAN live a full and productive life while receiving it. With many advancements in dialysis technology patients are living longer, healthier lives. Your life will change but approaching dialysis with a positive attitude and a willingness to take charge of your health will go a long way!

The current modalities of dialysis include hemodialysis, which can be done either in~center or at home, and involves running blood through a special filter known as a dialyzer to clean it by removing toxins and excess fluids. Another method is called peritoneal dialysis, usually done as a home treatment, and involves using the patient's peritoneum in the abdomen as a membrane across which fluids are dissolved and substances such as extra fluids and wastes like urea are removed. We will get into more specifics in the weeks ahead about each of these methods and how you can decide which method is the best for you.

Knowing what your kidneys do, knowing the risks of CKD and knowing how to prevent further damage is the best way to prevent the need for dialysis.

Thank you so much for joining me once again, I look forward to upcoming posts talking all about dialysis. I appreciate your comments, questions and concerns.

Keep on fighting all you Kidney Warriors!

~Kidney Blogger

Its a heat wave!

I wanted to share some lifesaving information today about the dangers of extreme heat and humidity for those suffering with Chronic Kidney Disease. With the temperatures hitting nearly 100 degrees today it is vital to know the signs of heat exhaustion and heat stroke because those with a chronic health condition are at even greater risk. It's best to keep indoors and out of the heat if possible. Avoid long exposures to the sun and keep outside activity to a minimum. Today is not the day to work on the garden. If you have an air conditioner keep it running and if you don't many areas have cooling centers setup. You can contact your local department of health to find out where they are going to be. Going to the mall, library or visit a friend/relative that has air conditioning is a great escape from the heat and a great way to spend an afternoon.

Of course one of the biggest challenges for those suffering from CKD/on dialysis is dealing with the thirst issue. This extreme heat makes us even more thirsty than usual.and I wanted to share some tips that have gotten me through many a hot, humid day. First of all, stay out of the sun it only increases the urge to drink. Today is a great day for one of those "Pj days" I  always talk about.  Put on a comfy, lose fitting outfit grab a good book and sit in the a/c. If you can't do that make sure you have on a light colored outfit that reflects the sun. Avoid as much sodium as you can, that too will make you want to drink more. Another great tip is freezing your favorite fruits like grapes. They will provide a good way to quench your thirst, refresh your mouth while not intaking too much fluid. Some other fruits I like to freeze are strawberries and blackberries. Just remember they contain potassium so you want to be careful not to over indulge. My other favorite mouth quenching treat on a hot day is a sugar~free popsicle. Again you get the refreshment of the ice cold treat without a lot of fluid. Its best to plan out your fluid intake for the day, that way you don't get dehydrated while still being certain that your not over doing it. My fluid restriction is 1 liter per day so what I do is take a 1 liter container and fill it and that's what I drink from for the day. When I feel I need a little extra something I pop in one of those frozen treats. Finally, if you have diabetes maintaining good sugar levels will also help cut down on the urge to drink. High glucose levels makes you want to drink more.

I hope all you Kidney Warriors keep safe out in the heat today. As you can see heat exhaustion and heat stroke are nothing to mess around with so pay attention and know the signs. For even more information on keeping safe in the heat please visit Northeast Kidney on Facebook at:
 https://www.facebook.com/northeast.kidney?fref=ts.

I want to thank you all for joining me on this journey, I look forward to your comments, questions and concerns.

Keep on fighting all you Kidney Warriors!

~Kidney Blogger

Keeper of "The List"

The mission of the United Network for Organ Sharing or U.N.O.S. is to "advance the organ availability and transplantation by uniting and supporting our communities for the benefit of patients through education, technology and policy development." In other words they are the keeper of the kidneys and all organs for donation here in the United States. They are responsible for:

• Managing the national transplant waiting list, matching donors to recipients 24 hours a day, 365 days a year. 
• Maintaining the database that contains all organ transplant data for every transplant event that occurs in the U.S. 
• Bring together members to develop policies that make the best use of the limited supply of organs and give all patients a fair chance at receiving the organ they need, regardless of age, sex, ethnicity, religion, lifestyle or financial/social status. 
• Monitoring every organ match to ensure organ allocation policies are followed.
• Provides assistance to patients, family members and friends.
• Educates transplant professionals about their important role in the donation and transplant processes.
• Educating the public about the importance of organ donation.

The United Network for Organ Sharing was established after the "National Organ Transplant Act" was passed by the U.S. Congress in 1984 to address the nations critical organ donation shortage and to improve the organ matching and placement process. The law also established the Organ Procurement and Transplantation Network or O.P.T.N. which maintains the national registry for organ matching. This is when "The List' came to be. Now nearly 30 years later we have a "List" of 96,000 plus waiting for kidney transplants and the same shortage issue. Allocation of organs is one of the most important functions of these entities. Deciding who gets which organ has been a topic of discussion for years. Recently, the policies have been reviewed and changed;  the implementation of these new policies will be coming in late 2014. 

Organ donation and kidney transplant issues are my passions when it comes to discussing the lives of those suffering from chronic kidney disease. As you know by now, I have been living with CKD for the last 15 years and in need of a kidney transplant. So this decision affects me personally. The biggest benefit to me is that the new policy will create a sliding scale of additional priority for high sensitized candidates. What that means is patients whose blood has become highly sensitized mainly due to multiple blood transfusions will have a better chance at getting a transplant. Over the last 10 years I have had 28 blood transfusions due to multiple surgeries and severe anemia issues. This has been the reason I have waited so long to find a match. Under the new policies my chances increase to find a match. The new policies also will enhance access to transplantation for patients with biological disadvantages including less common blood types. I happen to be o negative which is harder to match than other blood types so this change in policy will also help me find a match. Also once a patient is accepted as a transplant candidate, their wait time will be calculated from the date their GFR scored less/equal to 20 ml/min. or when the patient started dialysis not from the day they were listed as in the current allocation policy. 

The new policy changes are expected to increase overall "life years"  of transplanted organs and reduce the need for future repeat transplants. The matching process will not change for the majority of kidney transplant candidates and will improve those who receive additional priority. I believe the new policies will improve the lives of many transplant patients but we still need to promote organ donation because as good as the new changes may be we still need the organs to accomplish these goals. 

Writing this blog is just one of many reasons I have enjoyed working with Northeast Kidney. It has allowed me a platform to talk about organ donation, the new allocation system and so many other topics that affect my life on a daily basis. And part of their mission is to promote organ donation through their Advocate's Alliance. 

I want to thank you for joining me on this journey, I look forward to your comments, questions and concerns.

Keep on fighting all you Kidney Warriors! 

~Kidney Blogger

Inspiration, motivation and donation!

I woke up this morning so excited about writing today's blog entry. I was inspired by an article sent to me about an "opt~in" verses an "opt~out" system of donation. As most of us know, here in the United States we have an "opt~in" system which means a person must register and declare their wishes to be an organ donor. This puts 100% of the responsibility in the hands of the donor. It's one of those things though most people say "I will get around to it and just never do." And the fact is, less then 40% of Americans are registered to be donors and we have a massive organ shortage in this country. Today 96,676 are waiting for lifesaving kidney transplants. Everyday 18 people die waiting for an organ and every ten minutes someone is added to the "List."

So how do we fix a failing system?? We can look to see what other countries have done to increase donation rates. Many European countries have moved to an "opt~out" system. The "opt~out" or presumed consent system presumes that all individuals would consent to have their organs used for transplant. Instead of having to go out of one's way to participate, all persons would be considered donors unless they specifically object to being part of the system. This system still relies on permission from a deceased family members to use their organs. With nearly 97% donor rates in countries like Belgium and Austria this "opt~out" system has had a definite positive effect on the number of donors and transplants. And again here in the United States we have only a 37% donor rate. Why not move to an "opt~out" system? One of the biggest challenges to an "opt~out" system here in the U.S. is that some feel it could be seen as an infringement on civil freedom and liberty. But if that is the main argument against this system, then people must remember that one can always "opt~out" of the system. It always comes down to an individual's choice.


I believe that some form of  an "opt~out" donation system is the way to go here in the U.S. But we need better education on organ donation before implementing such a system or that too will fail. Regardless whether you think we should move to an "opt~out" system or not I would like to hear your opinion. Because whatever the answer may be, we need everyone to see how dire the situation is becoming. Between the number added to the "List" on a daily basis and the number losing the battle it is just unacceptable. As kidney patients, it's our job to spread the word about Organ Donation because:

My 15 year journey with CKD is my motivation for starting a conversation about organ donation. What's yours? Whatever it is, please keep it going....

 I want to thank you for joining me on this journey, I look forward to your questions, comments and concerns.

Keep on fighting all you Kidney Warriors!

~Kidney Blogger

I had to share this with all you Kidney Warriors, after all the discussion about diet. This is so true and there isn't more a crucial element to the life of a renal patient then their diet! I want to thank my friend Sidney Kidney for sharing this with me. 

More renal diet................

It's good to be back Kidney Warriors! I had a relaxing week off and I'm ready to get back to sharing with you.  I hope you had an enjoyable Forth of July holiday weekend and were able to keep to a kidney friendly diet. I want to remind everyone in the Albany area the Northeast Kidney's "Kidney Club" will be this Sunday July 14th. The Kidney Club is a great way to connect to other patients and family members who are also dealing with kidney health  issues. Whether you are newly diagnosed or have been living CKD for a long time you will learn something new or just connect with someone who is in the same shoes as you. I also want to thank Kathe LeBeau, from Northeast Kidney, for being a guest blogger on Friday.

I want to continue our journey with the renal diet. I think we have covered sodium, phosphorus, and potassium well. And no matter what stage of kidney disease your in, it will be important to start monitoring  these. I also want to talk about those who are pre~dialysis and on a transplant diet. The major difference between  a pre~dialysis and dialysis diet is the amount of protein. Protein metabolism is hard on your kidneys, and so it's important for your doctor to set your protein intake to preserve your kidney function. Based on your lab values, your doctor will determine how much protein you should be eating. A low protein diet reduces the work load on your kidneys. It can also reduce the of symptoms of nausea, vomiting, fatigue, and loss of appetite which are associated with too much protein in a pre~dialysis diet. 

The transplant diet is far more forgiving then pre~dialysis or dialysis diet but its important to have a balanced diet of fats and proteins. You learn about higher phosphorus and potassium foods. It will be important to adhere to a low sodium diet though especially if you have high blood pressure. Or if you have diabetes you will still have to monitor your glucose level. Although the transplant diet is much less restrictive, its still important to eat healthy to maintain your new kidney and to reduce the chances of infection and complications. I can remember after my transplant when I was encouraged to eat a banana on a daily basis. My new kidney was working so well that I actually needed the extra potassium.  For a change, potassium was no longer my enemy and it was such a pleasure!

Two other minerals important to those suffering from CKD are calcium and vitamin D. Calcium is the most abundant mineral in the body and is needed to form healthy bone and teeth and help muscles contract and relax. We receive most of our calcium from the food we eat. Most foods that are high in calcium are usually high in phosphorus like diary items. Vitamin D and PTH hormones are both used to regulate how much calcium is absorbed by the body and how much is eliminated by the kidneys .Healthy kidneys turn vitamin D into an active hormone called calcitriol and helps increase calcium absorption from the intestines into the blood.  As your kidneys lose function they are unable to produce these hormones and therefore cannot regulate calcium. When your calcium or PTH levels are too high it can cause bone damage and weaken your bones. That is why as a kidney patient your doctor will do regular blood to monitor these levels.

So as you can see no matter what stage of kidney disease your in your diet will play a major role in your overall health. That is why it's so important to maintain healthy levels of protein, sodium, phosphorus, and potassium. Be a self advocate and educate yourself! Although much of renal failure is out of your control, managing your diet and what you eat is in your own hands. Make the best choices for yourself because its the one thing you have 100% control over.

I want to thank you for joining me on this journey, I look forward to your comments, questions and concerns.  

Keep on fighting all you Kidney Warriors.

~Kidney Blogger

What's Your One Thing ?

Dena, our Kidney Blogger, will be back next Tuesday with another chapter in the journey we all share living with kidney health issues. Meanwhile, here's a holiday weekend post from Kathe:

Today, as we celebrate the Independence Day weekend, I wanted to take a moment to think about perspectives – and what we can find to make our lives better.  Its what this blog is all about.

We all know that this diagnosis does not make for an easy journey.  Good days and bad ones, health ups and downs, things you don’t expect, upsetting news, loss, pity parties, and disappointments.  We all share them.  But in order to reclaim our life from the impact of this disease, each of us has to figure out the secret that only we know – what is that thing that will make a difference?  How do we still live a full, happy and productive life, in spite of this? 

Like Curly said in the movie “City Slickers,” it’s often just one thing, and it’s not the same for everyone.  Usually it centers somewhere around family and friends, work we love, things that make us laugh and bring us joy, or a sense of determination or optimism or dogged perseverance that gives us hope and motivation to start again each day.  I look for inspiration in a lot of places, largely from others who are dealing with something like this.  They understand and “get it” in a way no one else does.  So when they share what works for them - I listen.  Some of them I know personally and am lucky to have in my life, others I know only by their words.   

Michael J. Fox is one such person: although he doesn’t have kidney disease, he sure does know what chronic illness means.  Diagnosed with Parkinson's disease in 1991, disclosing it to the public in 1999, he semi-retired from acting in 2000 as the symptoms became more severe.  But then he began a second career as an activist, advocating for work towards finding a cure and he created the Michael J. Fox Foundation, for which he has raised almost $300 million for research. He continues acting and doing voice-overs, and has also released three books: Lucky Man: A Memoir (2002), Always Looking Up: The Adventures of an Incurable Optimist (2009) and A Funny Thing Happened on the Way to the Future: Twists and Turns and Lessons Learned (2010). 

He shares his perspectives in powerful words that I find helpful from time to time when I need them, plus a piece of advice in the video attached here: see if any of this helps you find your “one thing.”

“I realized that the only choice not available to me was whether or not I had this illness. Everything else was up to me.  After all that I'd been through, after all that I'd learned and all that I'd been given, I was going to do what I had been doing every day for the last few years now: just show up and do the best that I could do with whatever lay in front of me.”  

 

And a final thought you might not have considered; sometimes, there are even good things that come along with a medical U-turn like this one.  The people you get to know, values you develop, knowledge you gain, opportunities (yes – opportunities) that present themselves - all things that you might never have otherwise known, brought into your life BECAUSE of this.  Really think about this; its surprising when you do.  Fox’s perspective about this though is pretty amazing: “If you were to rush into this room right now and announce that you had struck a deal - with God, Allah, Buddha, Christ, Krishna, Bill Gates, whomever - in which the ten years since my diagnosis could be magically taken away, traded in for ten more years as the person I was before - I would, without a moment's hesitation, tell you to take a hike.”

Could you say that?  Hmmm … I don’t know either.  But I do know that I get strength from the words and wisdom of people like him – like you.   So think about what helps you - what makes that difference in your life.  And share it with us – as we all try to find our way and be happy for the good things.  Its all about moving forward.

Take care and stay well …

 

 

Annual Kidney Patient and Family Education Day!

Their mission is "...to improve the quality of life of those affected by kidney disease and related conditions through early identification, intervention, prevention and support services; to promote organ donation; and to empower those we serve for better healthcare both personally and at the local, state, and federal levels."   This is why Northeast Kidney held its an annual education meeting for kidney patients, their families and providers to come together and share information this Sunday.  It's only through education that kidney patients will feel empowered to take charge of their health. The presenters included an RN, pharmacist, nephrologist, dietitian and several kidney patients.

"Something Old, Something New: Treatments, Innovations and Advances" was covered by local RN Sean Cardone. Sean works at the Albany Regional Kidney center and has worked with dialysis patients for nearly a decade. His topics included different modality options including in~center hemodialysis, peritoneal dialysis or PD and home hemodialysis. In upcoming posts, I will explain each of the options and why one may be better choice over another for an individual. He also discussed upcoming advances for kidney patients. The most exciting advancement is an implantable bio~artificial  kidney called the "Kidney Project". The Kidney Project brings together scientists, engineers, and clinicians to create a surgically implantable kidney. The project is directed by Dr. Shuvo Roy, of UCSF. This is projected to go to human trials in the year 2017 and its mission is to enable end stage renal disease patients to live longer, healthier lives without the need for dialysis. This sounds so exciting to me and have been following Dr. Roy since the beginning. This is something I would consider as an option for myself. 

The next presenter was a local dietitian and who is also my dietitian at Capital District Dialysis Center Sue Kovy, RD. She discussed how to eat well to maintain healthy lab values. And the three major concerns whether your pre~dialysis, on dialysis, or had a kidney transplant, sodium, phosphorus and potassium. I refer you back to the section of the blog called "Sodium and phosphorus and potassium oh my" which goes into detail about these three. The major difference between pre~dialysis and dialysis diet is the amount of protein you should be getting. It's important to discuss this with your doctor when your first diagnosed so your getting the proper amount. Sue was followed by Nikki Buell, a graduate of the Culinary Institute of America. She presented four kidney friendly recipes perfect for the upcoming Fourth of July holiday or other summer picnics or BBQs. They included Pineapple Salsa, which can be enjoyed as a snack with low sodium chip or as a topping for meat or fish. The next recipe was her Grandpa Buell's Potato Salad which included tips for reducing the potassium by either double boiling them or soaking them. Then an Asian Inspired Orzo Salad for a main dish. The  last recipe was a Fresh Veggie Salsa with lots of summer veggies in small portions. We were all treated to samples - and let me tell you they were yummy and delicious! 

After a short break was Dr. Katie Cardone, a pharmacist and professor at the Albany College of Pharmacy Nephrology Group. The main point of her presentation was that as kidney patients we should take advantage of our local pharmacist whether its to go over our medications, help eliminate medications we may not need or make sure we are on the most cost effective medications, as that's what they are there to do. We all have a valuable asset that many of us don't make use of enough.  A pharmacist can and should be a member of your healthcare team.

The next part of the meeting is where I took part; it was the patient panel. The panel included myself, Kathe LeBeau, patient and advocate who works with Northeast Kidney, Mary Dengler, longtime CKD patient, and Dr. Tom Schumacher, who is the Medical Director and on the Board for Northeast Kidney and who is also my nephrologist.  Kathe, Mary and I all discussed different issues that affect CKD patients which included joint inflammation and weak bones, anemia and fatigue, and itching and insomnia. These are issues that your doctor may not go into much detail about, but you need to discuss with them if you are experiencing them. We all offered suggestions in dealing with these issues: Kathe suggested that to prevent itching among other things, keep your phosphorus level in control and also avoid hot showers or baths. Mary suggested that to help prevent bone and joint issues to keep your PTH levels in normal range and to stay as active as possible, working with a PT to avoid becoming deconditioned. And if you read "Anemia and Fatigue in CKD" you can get my full presentation. Dr. Tom then wrapped up the panel by speaking about being proactive in fighting CKD. He focused on hypertension and cardiovascular disease explaining the importance of limiting sodium, phosphorus and fluids. He also explained the importance of taking home blood pressures and doing this from the day you are diagnosed.

As you can tell the meeting was filled with valuable information; whether you were newly diagnosed or been fighting CKD for years, you would walk away learning something new like I did. The meeting was then concluded by Carol Lefleur, who is the Executive Director of Northeast Kidney, who spoke about the need to raise awareness for organ donation. She questioned all of us in the room "If not YOU then WHO, and if not NOW, then WHEN?'  This really struck me because she was right, who better then kidney patients to help spread the word about organ donation.  She urged us to get involved in the Advocates' Alliance.

So I'll wrap things up with this: if you have someone you love fighting CKD then get involved, there are over 96,000 waiting for lifesaving kidney transplants - the time is NOW!!!! 

I want to thank you for joining me on this journey, I look forward to your comments, questions and concerns. 

Keep on fighting all you Kidney Warriors.

~Kidney Blogger