All Things Kidney #7

Happy Friday Kidney Warriors! I wanted to share this important video about Organ Donation. I hope you will keep it going by sharing it. I'm already getting excited for March as most of you know it's National Kidney Month. A month to promote education and awareness. An entire month dedicated to spreading the word about the need for organ donors, providing education about kidney health, and holding kidney screenings. And the NortheastKidney Foundation is getting ready for the NYS Advocacy Day at the New York State Capital. This event allows patients, family members, advocates, and elected officials to come together to talk about kidney related issues and push the need for organ donation. This year it will be March 18th and if you are interested in participating and are in the Upstate New York area please contact Northeast Kidney at info@healthykidneys.org to get involved. 

During March we also celebrate World Kidney Day, March 13, 2014. This is a day about learning about your kidneys , learning about different types of kidney diseases, and learning how to care for your kidneys. Raising awareness about how important the kidneys are to overall health is one of the objectives of  this years World Kidney Day. One of the other objectives of this years World Kidney Day is to focus on Chronic Kidney Disease, its risk factors and the preventative steps like kidney screenings for the most at risk groups. The leading causes of Chronic Kidney Disease are High Blood Pressure and Diabetes. If caught in the early stages Chronic Kidney Disease can be treated which may reduce the chances of low term issues of chronic renal and cardiovascular issues. Of course raising awareness about Organ Donation is always one of objectives of World Kidney Day. 

Although I have waited six years for a kidney, I still have hope that one day I will get my call. Today there are over 10,000 waiting for a kidney, along with me, in New York State  that's why the NeFK NYS Advocacy day is so important. Here in New York our state legislators passed "Lauren's Law" which requires every person who applies or renews their drivers licence is required to fill out the organ donation section of the application. This law even applies to non~driver I.D. cards. This law is designed to increase the number of registered donors. Who Know's what legislation we can help encourage at the next Advocacy Day! This is the day for all patients to have a voice. This is the day to get involved and help make a difference. 

Thanks for joining me today for another All Things Kidney. I hope you're all getting ready for March and National Kidney Month. And will consider joining the Northeast Kidney Foundation for their NYS Advocacy Day on March 18, 14. I look forwrd to hearing your comments, questions or concerns. 

Keep on fighting, all you Kidney Warriors! 

~ Kidney Bloger

It's Complicated....

Welcome back Kidney Warriors! I've spent the last week celebrating my 44th birthday. I feel very blessed to be here to celebrate another birthday because my journey with Chronic Kidney Disease has had so many bumps along the way. What I take away the most from living with this illness is that although we may end up at the same place every kidney patient has their own journey to get there. During the last few years I have been dealing with some complications which comes with the territory of living with long term kidney issues. Today I wanted to discuss some of complications and how they have affected my life.

High blood pressure is one of the leading causes of kidney disease and it's something I have dealt with since I was age 22. Cardiovascular issues including heart failure is just one of most common problems associated with long term CKD. Controlling blood pressure has always been a struggle for me. Uncontrolled high blood pressure can lead to congestive heart failure so its important to take all blood pressure medications prescribed by your nephrologist or cardiologist. Another complication of CKD is anemia. This is something that I have battled since almost the day I was diagnosed. It has also led to having many blood transfusions. Blood transfusions are both good and bad. When the hematocrit gets too low it can lead to complications like shortness of breath and dizziness. For more information on anemia please review the section of blog called "Anemia and Fatigue in CKD" Another issue with having many blood transfusions is the blood becomes high sensitized. And if you are trying to receive a kidney transplant this makes you harder to find a match. At the same time blood transfusions can be lifesaving and have saved my life on several occasions. I just had my 30th blood transfusion in December.

Bone and mineral issues are another complication of CKD and affects almost every kidney patient. When the kidneys are unable to maintain proper levels of calcium and phosphorous it can leads to thinning and weakening bones. This often leads to bone and joint pain. Bone fracture is another symptom of low calcium and high phosphorous in the blood. This is the reason it's so important to follow a renal diet and control phosphorous levels. For more information on renal diet refer to the section of the blog called "Sodium and potassium and phosphorus oh my" Vitamin D is another important mineral for healthy bones. As the kidneys fail they are unable to produce hormones like calcitrol. Calcitrol helps the body maintain balanced levels of calcium and phosphorous and proper PTH levels. When PTH levels are too high the body takes calcium out of the bones. This also can lead to weak and thinning bones. Over the last few months my PTH levels have been on the rise and has caused me some bone pain.

  



As you can see living with chronic kidney disease comes with its long term complications. This disease has taken it's toll on me over the last few years. All I can do is keep fighting and moving forward. I have always been a fighter and that's what I'll continue to do. Today there are over 99,000 waiting  for a kidney transplant like myself. What I need more then ever is more people to become organ donors. This weekend I was honored to meet a women who was part of a donor family. It was very interesting to hear her perspective on having to make that final decision. Her son had died at age 29 and it was his wishes to be an organ donor. It was very touching when she told me of all the people her son had saved. I was honored to be able to tell her "Thank You" and express my undying gratitude for filling her sons final wishes. 

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

Keep on fighting, all you Kidney Warriors!

~Kidney Blogger





Still Surviving...

Happy Tuesday Kidney Warriors! This weekend marked the six year anniversary of my return to dialysis. If the day my best friend told me she was giving me her kidney was my best day with living chronic kidney disease, January 4th, 2008 would be my worst. After a five and a half year battle trying to keep my transplant this was the day it stopped working and it rejected. I can remember how scared I was knowing that once again I would have to rely on dialysis to survive. This was the day that I had my peritoneal dialysis catheter surgery to start dialysis again. This was the day that would change my life once again. 

What I've learned over the last 15 years living with chronic kidney disease is that you never know what your going to get from one day to the next. It constantly keeps you on your toes. What I've learned living with a kidney transplant is that you need to go into it with realistic expectations. A kidney transplant is not a cure; it is a treatment like dialysis just more permanent. There currently is no cure for chronic kidney disease. I've learned a kidney transplant has its own challenges. Be prepare to live the rest of your life on medications. For me these medications had some serious side effects. Be prepared in case it doesn't succeed. If you have a living donor prepare them, let them know of the chance that it might not work. I feel that was the one area where my transplant center could do better.  If I were to do anther living donor transplant this would be the first topic I would discuss with them before the transplant even took place. The costs of not preparing them may be one you don't want to pay. 

 What I've learned living on dialysis it requires you to monitor every bite of food you eat and every ounce of fluid you drink. I've learned that sticking to the renal diet is not an easy task but it is vital to living a good life on dialysis. I've also learned is it's imperative to do every treatment as directed by your nephrologist. Skipping treatments can only lead to a trip to the E.R. or worse. I'm not sure why there is such an attitude in the dialysis community about this subject, I see so many posts about how it's a  patients "right" to skip treatments. This seems foolish to me especially if you only do three treatments a week. Remember your functioning kidneys work 24/7 365 days a year so the 12 hours your getting a week is barely cutting it. I can see if a physical issue prevents you from going but not going just because "I don't feel like it" seems like an insult to those you have been dealing with dialysis as long as I have or longer. I know there are about 6,500 who would love to get the chance to do one more treatment, those who lost the battle to chronic kidney disease last year. And I can tell you this, I don't want to be one of them this year. I've learned that home dialysis treatments are the best for me. After trying in~center, PD, and home hemodialysis I realized home hemodialysis was the most effective for me. What I've learned is that it important to educate yourself about each option available to you. And if you don't have options DEMAND them. Yeah dialysis sucks but it will save your life. 

How can you help me not be one of those 6,500? First, if your not an organ, eye, or tissue donor sign up at DonateLifeAmerica.org   http://donatelife.net/.  In New York State you can also sign up on your driver's licence application or  if you renew it. Did YOU know you could save up to eight people? Second, tell your family of your wishes. Make sure they know your an Organ Donor and you want to give the ultimate gift, the gift of life! In the end, they will make the final decision for you. Make sure your wishes are known. And last but not least, start a conversation with your friends about organ donation. Tell them the importance of being a donor. How it costs nothing to sign up and the impact it will make on someones life!  Please do it for me, do it for the nearly 100,000 who are waiting for kidney transplants, do it for the good Karma! 

I want to thank you for joining me on this journey, I hope that in another six years I can share the additional things I've learned about living with chronic kidney disease. That's the thing about this disease there are always things to learn. I look forward to your comments, questions, and concerns. 

Keep on fighting, you Kidney Warriors! 

~Kidney Blogger

2013 A Year In Review

Happy New Year and Welcome back Kidney Warriors! I'm sure we all have been busy with the hustle and bustle of the holiday season and I hope you had a wonderful Christmas and New Years Eve. It was a very difficult Christmas for me. The absence of my father was really felt this Christmas morning. One of the hardest things about a loved ones death is how it changes all your traditions. I think it's all part of life and at some point it happens to each of us however that doesn't make it any easier. I think 2013 was the year of the lessons. The biggest lesson for me was that life can be fleeting and tomorrow is never promised. It makes me realize that even though I live with a life threatening illness I should appreciate everyday. I should appreciate the fact that I live in an area where we have a variety of dialysis options. I should appreciate the fact that the Northeast Kidney Foundation gave me the chance to write this blog and share my journey with each of you. I should appreciate the fact that I have a loving and caring care partner/husband who has stood by me through thick and thin. 

With the end of 2013, I would like to review some of the important information from over the last six months of blog entries. It was scary when I was first diagnosed with CKD and I went through a variety of tests preformed by my nephrologist to help determine the caused of my kidney disease which included: "The first test involved finding my GFR. Your GFR or Glomerular Filtration Rate is one of the best methods for determining how much kidney function you have. It uses your individual blood creatinice, age, body size and gender. It then calculates a value which determines the stage of  CKD your in. At the time I was well into Stage 3. There are 5 Stages to CKD with stage5 being kidney failure and needing dialysis or transplant. Prevention is the best fight against kidney disease so know your numbers especially your GFR if your at risk.. Knowing these numbers can help decrease the damage to your kidneys

Some of the other tests he did were to determine my BUN which measures the amount of nitrogen in the blood that comes from urea. It's another way to see how much kidney function is left.  He also did a 24hour urine collection to check how much protein was in the urine. Normally there should be little to none, so any increased amount could be some form of reduced kidney function. The final and most telling test he did was called an VCUG or Voiding cystourethgram this test uses x-rays of the  bladder both when its full and then when its emptied to see if there are any abnormalities between the bladder and upper urinary tract. And finally after 2 months of tests he determined that I had Kidney Reflux or Renal Reflux disease. The most common symptom of renal reflux is a urinary tract infection. This occurs because the bacteria that cause the urinary tract infection are able to travel up the urinary tract as a result of the reflux instead of being pushed out during urination. When I was diagnosed I had not had any UTI's and therefore allowed it to go un~diagnosed for so long. By the time the doctor's found it, the damage was already done. The only symptom I had was flank/lower back pain resulting from urine refluxing up to my kidneys. This condition is usually caught in childhood and can be treated and most times cured. 

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.

Symptoms of Anemia include:
1. Looking pale
2. Shortness of breath
3. Trouble sleeping
4. Feeling dizzy and having headaches

I later learned that one of the functions of your kidneys is to make a hormone called EPO. Hormones are secretions that your body makes to help your body work properly and keep you healthy. EPO tells your body to make new red blood cells. When you have kidney disease, your kidneys cannot make enough and this causes your red blood cell count to drop and that’s when you develop anemia.

Most people with kidney disease will develop anemia. Anemia can happen early in the course of kidney disease and grows worse as the kidneys lose their ability to work well and make EPO. Anemia is especially common if you:

1. Have diabetes
2. In stages 3,4, or 5 of kidney disease
3. Are female

But because not everyone with anemia gets symptoms you should have regular blood tests to measure your hemoglobin levels.

Hemoglobin is the part of the red blood cell that carriers oxygen throughout the body. Your doctor can tell if you have anemia by measuring your hemoglobin levels. If your hemoglobin levels are below normal which is 12.0 for women and 13.5 for men. Your doctor will start a treatment plan to raise your hemoglobin. This usually includes drugs that work as an EPO stimulate. These agents  are called ESA’s and helps your body to make new red blood cells that your kidneys cannot. It is usually given as an injection under the skin and most CKD patients learn to do this at home as self injections.

The other treatment part of anemia is controlling your iron stores. Your body needs iron to make red blood cells especially when you are receiving an ESA treatment. Without enough iron, your treatments will not work as well. Iron can be given either in pill form or through IV.  Your iron stores should be at least 20%  and should be checked along with your hemoglobin levels.

Your doctor will check your hemoglobin levels on a monthly basis to bi~monthly basis. This tells your doctor how well your doing and your dose of the ESA will may need to be changed, depending on how well you respond.  If untreated, anemia can make your health conditions worse and cause your heart to work harder.

For me one of the most complex issues in dealing with CKD was embracing a renal diet. From day one, the way I approached food needed to change. Throughout every stage of CKD there are different requirements and it was  important to educate myself  during each stage.  Calorie intake, limitations of salt, phosphorus, potassium and protein were all concepts that I had to learn. Some of these things  I had never even heard of before I was diagnosed and now I realize the importance of controlling them all. I  learned that having proper nutrition can help reduce the workload on the kidneys and allow the best environment for optimal kidney function. This is very important in the first stages of CKD when you still have kidney function.I was never in my life a label reader and once I was diagnosed that all changed. Reading labels can help make healthy food choices for your kidneys.

Sodium: is a major mineral found in the fluid surrounding the cells in the body, It helps to regulate blood pressure and fluid volume. It also helps maintain ph balance in the body. Both muscles and the nervous system rely on sodium to function correctly.

Phosphorus: is a mineral that makes up 1% of a person's total body weight, and is present in every cell of the human body. Most phosphorus is found in the teeth and bones. It plays an important role in how the body uses carbohydrates and fats. It is also needed for the production of  protein which is necessary for growth, maintenance, and repair of cells and tissue. It also helps in kidney function, muscle contractions, normal heartbeat and nerve signaling.

Potassium; is a dietary mineral necessary for balancing ph and fluids in the body. It's important to maintain normal blood pressure and works in opposition to sodium. It also is needed for normal muscle growth and function of the nervous system and brain functions.

Some foods high in sodium include: Fast foods and processed foods, canned goods, baked goods, cheese, salted snacks and luncheon meats. High sodium increases the risk of stroke, high blood pressure, heart attack and kidney disease. In dialysis patients it also causes increased edema or swelling in the feet or ankles.Which can lead to breathing issues and pulmonary edema. That's why its so important to limit sodium intake.

Some foods high in phosphorus include: dairy products, chocolate, processed meats, beer, cola's and dark soft drinks, nuts/seeds and dried beans and peas. High phosphorus levels causes your body to pull extra calcium from the bones and can weaken them. When you have both high phosphorus and calcium, which usually go hand and hand, it can lead to dangerous amounts of  calcium deposits in the lungs, eyes, heart and blood vessels. You want to maintain a phosphorus level of 3.5 to 5.5 mg/dl.

Some foods high in potassium include: raisins, prunes, dates, strawberries, bananas, watermelon, soy and soy foods, turkey and beef. High potassium levels causes irregular heartbeat, nausea and a slow, weak or absent pulse. Low potassium level causes fatigue, muscle pain, cramps, constipation and dizziness. You want to maintain a potassium level of 3.5 to 6.0 mg/dl,

One of the most important things we discussed was the need for Organ Donors both living and deceased. Today I am waiting with 99,206 others who all need kidneys. All together there are 121,153 in the United States alone who need organ transplants. This is why we have such a dire need for organ donors. Waiting is the hardest part, never knowing if and when the phone will ring. The way I've dealt with waiting is to not think about it. I just deal with the day to day. I do all I can to keep healthy and stick with my dialysis, renal diet. This is why the National Donor Sabbath means so much to me. It is yet another chance to raise awareness to cause that will one day hopefully save my life. My faith has helped me get through so much in dealing with kidney disease. The National Donor Sabbath is a weekend to celebrate, through faith, the need for organ donation and transplant. I hope each of you will take part this weekend. Even if only inspires you to sign up at Donate Life America to be an organ donor! Do it for me, Do it for the 121,153 waiting.

I want to thank each and every one of you for joining me over the last six months. I look forward to 2014 being a better year and I hope it is for you as well. I look forward to your comments, questions or concerns. 

Keep on fighting,  you Kidney Warriors! 

~Kidney Blogger