Halloween Edition All Things Kidney

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. I also want to remind everyone that there are only a few days left in October and the Campaign 4 Life! Please encourage people to sign up on the Donate Life Registry and let's all help raise awareness for organ donation. We need to improve donor rates for all those waiting! 

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

~ Kidney Blogger

Transplant basics 101

Happy Friday Kidney Warriors! As we continue throughout October I want to remind everyone here in New York we are having the Campaign 4 Life! initiative to improve donor rates for the state. As you know New York has some of the worst in the country. So I hope you took my challenge and your out there raising awareness and getting people to sign up on the registry. In a recent posting by Alliance for Donation/Donate Life New York State we are still only at 21.7% of all adults over the age of 18. We really need to do better! Here's my challenge to you; I challenge each of you to get just 10 people to sign up on the registry. Imagine what we could all do together. 

Now before we go much further let's go back to some transplant basics. A transplant becomes necessary when a patient enters Stage 5 of kidney disease. 

Once in Stage 5 there are two options: Transplant or Dialysis. Unfortunately not every patient can receive a transplant and must stay with dialysis. Some exclusions from a kidney transplant include; other medical conditions such as a history of cancer, a patients weight or BMI, ongoing infection, or a severe psychiatric disease. That is why it's so important for a full evolution of a candidate to allow them to become a recipient. This evolution is done by a team of health care professionals who are called your Transplant Team. These  professionals include a social worker, a nephrologist, a transplant coordinator, and of course a transplant surgeon. It's important to choose a transplant center and team you feel comfortable with and understands your personal needs along the journey to transplant. 

When a candidate is accepted they can receive a kidney from one of the following sources:

1. Deceased/Cadaver Donor ~ This is a kidney which comes from a person who has just died and the family has given permission for the kidneys to be donated for transplant. 
2. Living Related Donor ~ This is a kidney which comes from a blood relative such as a mother, father, sister or brother. 
3. Living Unrelated Donor ~ This is a kidney which comes from a non~related person such as a friend or spouse. 

Currently, most of our transplants done here in the U.S. are done from deceased donors. Due to that fact, there is a shortage of organs for donation that is why we have such a large waiting list, today we have 98,419 waiting for kidney transplants. However, there are definite advantages to doing a living transplant whether they are related or not. These include; having control over timing of transplant, helps avoid the need for dialysis, and reduces the wait time. The advantage of doing a living related donor transplant is it tends to be a better match and lessens the chance of rejection. Because only one kidney is needed to do a kidney transplant it makes living donation possible. Most recipients do not have their native kidneys removed and end up having multiple kidneys even as their native kidneys no longer function. 

A kidney transplant comes with some significant risks attached and should addressed with the transplant team. One of the biggest risks is the risk of rejection. This means the recipients immune system destroys the transplanted tissue. Immunosuppressant drugs are used to prevent the recipients immune system from discovering the new kidney. These drugs will be used for the life of the transplant. Unfortunately, anti~rejection  drugs come with their own side effects which include; bone thinning, diabetes, high blood pressure,, and weight gain. Rejection is how I lost my transplant after five and half years. It was a very difficult time for me and I would advise if your also considering doing a living donor transplant whether related or not that the risks should be discussed with all parties involved. This was one topic that was not covered by my transplant team and in the end I wish it had been. I think a donor should be prepared in case the transplant rejects or fails. 

I hope you enjoyed the basics of kidney transplant and I look forward to your questions on this issue. Although the transplant process is quite complicated, I hope this helps you understand the initial processes involved. This was a considerable decision in my life and I know it changed it completely. I hope this entry helps you make your decision! 

Keep on fighting, you Kidney Warriors! 

~Kidney Blogger

All Things Kidney #5

One of the greatest joys in my life is my pets. The overwhelming love and friendship they provide is immeasurable. There is nothing like coming home after a long day to find your furry friend waiting at the door tailing wagging and genuinely excited to see you. They don't judge, they don't care how much money you have, they don't care what kind of car you drive all they care about it that your home to see them. They truly give unconditional love. My husband and I have three pets right now. We have two cats Gracie and Angel and one dog Dakota. It's funny how each has their own personality. Gracie is very independent and at times seems like the "grumpy cat"; she lets us know when she wants affection. Compared to younger cat Angel, who needs to be around us 24/7, she is the biggest cuddle bug. She will spend hours sleeping on our laps and is content to watch evening t.v. while sitting on the heating pad to stay warm. Then there is Dakota, a.k.a. Koda bear, our 108 pound yellow lab. He is the love of my life. He has been through so much with us. He is my companion and my protector. 

 *Our kitties Gracie (left) Angel (right) showing their sisterly love*

* Our Koda bear playing one of his favorite outdoor games Soccer*

It's good for the mind and the soul to have a dog in your life. They are both stress relieving and blood pressure reducing. Yes owning a dog can help lower blood pressure and heart rate, there's something about the action of petting your dog has been proven to lower blood pressure. They also can lead to a happier life and help fight depression. It's hard to be depressed when looking in the eyes of a dog. Dogs help lead to a healthier life overall as they help provide exercise due their need for walks and countless play sessions throughout the day. They also lead to better social lives most people trust strangers who are walking a dog and are more willing to approach them on the street. They are the best ice breakers. It's also proven that children who grow up in homes with pets grow up to be healthier adults and  are less likely to have allergies. Finally, you can't ask for a better companion. I don't want to short change cats in all this they are proven to have many of the same benefits of owning a dog. So which ever you choose it will improve your life! 

For me owning pets through out my chronic illness has been lifesaving. On bad days they know it and are content to do nothing but lie in bed with me. On good days Dakota knows it's o.k. to grab his soccer ball and run around like a maniac. Pets are so intuned into your mood and emotion its like they read your mind. I can't imagine my life without them. They have helped me to stay positive even in the darkest of times. So if you want a happier, healthier, and more social life than get yourself a dog or cat.

I hope you enjoyed this edition of All Things Kidney and see the benefits of owning a pet. I look forward to your comments, questions or concerns. 

Keep on fighting, you Kidney Warriors!

~Kidney Blogger

Trials and Tribulations

One of the most important things I can share about going through the transplant process is that it is imperative to go into the process with realistic expectations. In my own experience, right after my transplant, I was asked by one of my family members "So you're cured now, right?" but a transplant is not a cure and that is probably the biggest misconception about going through the process. Whether your kidney comes from a living donor or a deceased donor it's important to remember that complications can occur. This is the story about the journey I had with my new kidney. It was not without its own complications but from these complications I learned so much about the process. And I am confident that it has prepared me for when I receive my next kidney transplant.

The first couple of months after my transplant I felt amazing. I remember the freedom I felt when I was able to eat things I hadn't been able too in years.  My new kidney was making urine like crazy and I know it sounds weird to say but I loved peeing. I had energy like I hadn't had in so long. My hemoglobin and hematocrit levels had stabilized and I no longer needed to use an ESA. It was unbelievable how I was feeling. It was like Christmas and my birthday all wrapped up in one. Then things started to change.

 I quickly learned about the side effects of steroids and it wasn't good. Steroids were just one of the medications used to prevent my new kidney from rejecting along with a few other immunosuppressants. What I didn't know was that the steroids could cause diabetes. It's was referred to as steroid induced diabetes and for me it required using insulin for the next six years until the steroids were stopped. The thing about steroids is you have to have them tapered down unfortunately, you can't just stop them. It took a year after my transplant had rejected before I could completely come off them. 

But the next side effect from the steroids would be even more devastating I developed a condition called Avascular necrosis or A.V.N. It is a disease where there is cellular death (or necrosis) of bone components due to interruption of blood supply . Without blood supply, the bone tissue dies and the bone collapses. When it involves the bones of the joints, it often leads to destruction of the joint articular surfaces. For me it attacked the joints in my hips, wrists, and knees. The first of my joints it would attack were my hips. One year after my transplant I underwent my first total hip replacement in October of 2003 and three months later I would have the other side done in January 2004. This was a very difficult time because I was still healing from my kidney transplant and I now had to do months of rehabilitation to recover from the two hip replacements. 

 Then one year later it struck again, this time it attacked both my wrists. It is extremely rare for A.V.N. to strike wrists let alone both. This would prove to be more difficult for the doctors to address. There were no wrists replacements. I was fortunate to find an amazing doctor who found an experimental surgery to fix my wrists. It was called a bone graft and what it did was remove the bone marrow from the radius bone and place it in the wrist joint to rebuild the scaphoid bone that had collapsed. Basically it formed a new bone in the wrist joint, took away the pain and returned to me a 9O% range of motion that had been lost.These surgeries were done 6 months apart and both required to wear a cast for 4 months on each arm. The total recovery time to heal from these surgeries was well over a year and a half. I'm happy to say that eight years later from the first surgery date in August of 2005 the surgery is still a complete success and I live pain free with still 90% range of motion.

This was a very challenging time in my life and all the while dealing with living with a new kidney. The side effects of the other transplant drugs where taken their own toll on me and then the unthinkable happened. In the fall of 2006 I was diagnosed with pneumonia and was hospitalized for 19 days. During that stay my lab values started to change and my creatinine started to rise. That's when I required by first kidney biopsy and it would be the first time they would find rejection in my transplant. It was devastating, I was scared, I had already been through so much and I didn't want to lose the transplant. So with the help of extra doses of steroids, antibiotics, and anti~rejection drugs they were able to stop the rejection process, for the time being. Then two months later in November of 2006 I would once again begin to see my creatinine start to rise and was again hospitalized. Once again they did a biopsy and found rejection. This would be the beginning of the end for my transplant. This time the doctor would try a more aggressive course of treatment. They placed a Hickman catheter in my chest and started a treatment called I.V.I.G which would require six outpatient visits. This would turn out to be another short term fix as one year and two months later my transplant was in full rejection and I began to prepare to start dialysis all over again. 

Because I was not taken off the steroids even though the transplant had rejected  A.V.N. would rear its head one last time. In October of 2009 I would have yet another surgery and this time it had attacked my left knee. When I first encountered the pain, earlier that year, I have decided I would try other means of dealing with it, The last thing I wanted was yet another surgery. But that would not be when I could no longer walk on it or put any pressure on it I knew it was time. This lead me to a complete knee replacement and a 17 day stay on the rehabilitation floor. This was the most painful of all the surgeries I had and was the longest recovery time.

So in the end, the most valuable lesson I learned from my journey was to never give up or stop fighting. And in spite of all my trials and tribulations I am still willing to give another transplant a try. A lot has changed in the world of transplant since 2002 and I remain hopeful that next time around my journey will be less complicated. If I have learned anything about my experience it is this the most flawed transplant gives a better quality of life then spending it on dialysis machine. That is the reason I have waited  five and a half years and continue to wait for my second shot at getting it right. 

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, you Kidney Warriors! 

~Kidney Blogger

Kidney Sisters

Three years into my battle with chronic kidney disease it was time to talk about a kidney transplant. Although I had put a good fight, I had entered stage 5 and received the End Stage Renal Disease/ESRD diagnoses. The first step was to attend a Kidney Transplant education class. This was my first introduction on the different types of kidney transplants.  A transplant can come from a Living donor someone who may or may not be related. Or a transplant can come from a Deceased donor someone who has just passed. Living donor transplants are becoming more and more popular and this year so far there has been almost 7,000. The education program also discussed The List and waiting times,a brief discussion about diet, and transplant medications. It was great introduction into the world of transplant. We each walked away with a huge binder full of information to continue our education about kidney transplant. 

After the class my sister, brother and my best friend all decided that they wanted to be tested to see if they were potential donors. You can only imagine how touched I was to see my family and friend want to step up to save my life. To be willing to risk going through surgery so I may have a better life and feel better. During the initial testing process they are looking for 2 factors. The first is matching blood type. I was O negative and needed an O negative donor. The next  step would be a crossmatch. This is a process to see if the donor's blood is compatible with the blood of an intended recipient. There can be two outcomes; a positive or negative crossmatch. This is the one time when you don't want a positive result. A positive result means the candidates are incompatible because antibodies (a protein substance in the blood) will immediately react against the donor's cells, causing loss of the transplant. We were hoping for three negatives but ended up with two positives and one negative. It turned out that my best friend was my best match. So the two of us began the next steps towards transplant. 

For the next eight months my donor and I went through a series of tests which included; a complete physical exam, chest x~ray, EKG or ECG, ultrasound of donor kidney, many blood tests really like eleven vials of blood worth, and renal function testing of donor's kidney. The doctors at my transplant center were extremely thorough and the last step of the process was a visit to a social worker and psychologist. They wanted each of us to be mentally ready to handle the transplant as well physically ready. My friend and I did great! We each passed with flying colors so they scheduled us a surgery date. 

Finally the day had come August 19, 2002. It's hard to believe that was eleven years ago. I remember getting up at the crack of dawn, 3 a.m. We were required to be at the hospital by 5 a.m. I was so scared, excited, and thankful at the same time. I was in awe of my friend who was willing to put everything on the line to do this for me. As soon as I saw her arrive at the hospital I remember just hugging her and we both started to cry. It was just so emotional to know what we were about to do. The nurses came to waiting room and it was our turn. The waiting room was filled with our family and friends and now we had to say goodbye. The next time they would see us I would have my new kidney and my friend would be a Hero! 

They wheeled my friend and I into the holding area and started preparing each of us for surgery. Putting in I.V's, giving us cute little hats, and of course those slipper socks. The entire time we were holding hands across the stretchers. Then it was time, as they wheeled my friend into the operating room the last thing we said to each other was " l love you sister" from that day on we would be kidney sisters. My friends surgery began first so they could remove the kidney. A few hours later they began mine. After twelve hours of surgery my new kidney was pumping out urine and the surgery was a complete success. The kidney was making so much urine it got the nickname "Turbo Kidney" and for my week of recovery in the hospital that's what the doctors, nurses, friends and family were calling it. One week later I left the hospital and began a journey with my new kidney.

 Every time I think of this day can't help but get emotional all over again. It was like having a second birthday and even though in the end my body would reject the kidney I will never forget this experience. I just hope I get the chance to do it all over again with a slightly different ending.

Over the next few week's I will share my entire five and half year journey with my new kidney. The ups and downs, the good and the bad, and the positives and the negatives. It was quite the journey and I hope you will come back and join me to see how it all went down. My story is just one reason to be an organ donor there are 120,131 others out there waiting to start theirs. Remember October is the Campaign 4 Life! so I hope you're all out there signing up new donors and talking about organ donation! 

Keep on fighting, you Kidney Warriors!

~Kidney Blogger

Campaign4Life Video All Things Kidney #4

All Things Kidney #3

Hey welcome back Kidney Warriors! It's been an interesting week in the world of kidneys here in New York State. The need for organ donors has never been so dire as it is today. With over 10,000 waiting for lifesaving transplants, we now have a few new initiatives to help promote organ donation awareness. In 2012, passed by the New York State legislature and signed by Governor Cuomo, "Lauren's Law" took effect on October 3, 2013.

 This law was inspired by 11 year old Lauren Shields after she had a heart transplant at the age of 9.  She and her family had worked hard to raise awareness for all those waiting for lifesaving transplants here in New York State. The law requires that drivers license applications can only be processed if the organ donation section of the application is filled out. Drivers now are given the choice to say "Yes" or "Not at this time" while filling out the application. This law also applies to non~driver I.D. cards as well. In the past although an organ donation section was included it was not required to be filled out. The goal of this new law is to raise the number of registered donors; currently New York has some of the lowest donor rates in the country. Every year more than 500 New Yorkers die while waiting for a transplant.

*Now 13 year old Lauren Shields speaking about "Lauren's Law" taking effect*

The next initiative is called The Campaign 4 Life! For October 2013 it is a public health initiative, to register donors on the New York State Donate Life organ donor registry, supported by the Alliance for Donation/New York State Donate Life along with Northeast Kidney. Its designed to make a focused effort on signing up new donors using a person-to-person connection and putting a face on the need for organ donation. You can become part of the effort by joining with TEAM Northeast and getting out and spreading the word; sign up yourself and then encourage others. Please visit Campaign4Life @ http://campaign4life.org/

I am one of the 10,000 in New York who are waiting for a kidney transplant. I have been on dialysis for more than five and half years and living with CKD for the last 15 years. There is no greater gift than the gift of life! If you're not an organ donor please visit Donate Life New York http://campaign4life.org/ to register today. If you have already signed up let others know why you decided to become a donor and help encourage them to do the same. Please help all those waiting by spreading awareness about organ donation and one day you too will be someones Hero! 

So Kidney Warriors let's make this happen, I challenge each of you to get 10 people to sign up by the end of October. And hopefully they will get 10 people to sign up as well. Before you know it we will get every" of age" New York resident on the Donate Life Registry. Let's make New York #1 in donor rates. Let's do it for the 10,000 waiting.

Thanks for joining me for another edition of All Things Kidney. I look forward to your questions, comments or concerns. 

Keep on fighting, you Kidney Warriors! 

~Kidney Blogger 

The Wait, the Line and a Campaign 4 Life

Waiting in line is tiresome and tedious.  The grocery store, the post office, the bank – wherever you need something and have to wait to get what it is you want.  That line never moves fast enough when you are the one waiting.  I’ve even seen people put down whatever it was they were getting  and leave because they waited in line a little too long; they sigh, roll their eyes, tap their toes and make comments about how they just don’t have the time to stand around.

Well, that’s inconvenient.  But it’s not deadly.  If you are waiting in line for an organ transplant in this country, that kind of waiting has much more serious consequences.  Every day in America, 18 people die while waiting in that line - waiting too long for a life-saving transplant that doesn’t come in time.   

Here are the cold hard facts; the current statistics from the United Network for Organ Sharing (UNOS) and the Organ Procurement and Transplantation Network (OPTN) about the wait, donation and how many people are actually getting to transplant.

Waiting list candidates 119,963 as of today 3:57pm

Transplants January - June 2013 14,103

Donors January - June 2013 6,961

Think about that. You can see with the size of the list, and the transplantation and donor rates, we will never catch up with the need.  And every 10 minutes, someone new is added to the national transplant waiting list. The available supply will never meet the very critical demand at the rate we're going, and the line will just keep getting longer, and so will the wait.  What if you or someone you loved were the ones waiting?   That’s a line you really can’t be in for too long. Maybe you already know what I’m talking about.  The toll is too high.

We need to do everything we can to fix this.  Better awareness, dispelling myths and misinformation, perhaps taking a look at how we view organ donation, and certainly improving the number of living donors stepping forward for those waiting for liver, kidneys or lungs where that can make a difference – all can help.  But we also need to simply improve our national organ donor registry numbers – more organs need to be available for those waiting on the list.

Take a look at the donor rates across the country.  Some regions are doing a good job at organ donation awareness and as much as 80% of the population are signed up to be organ donors.  Other areas need to really do much better.

The problem is particularly bad here in New York State – we have the third lowest donation rate in the country.  And what’s worse, 10,000 New Yorkers are currently on the national wait list.   That is about 10% of the whole list, of everyone on the country.  That explains why New Yorkers wait so long for those lifesaving transplants – we are not doing enough to improve organ donation rates and so more New Yorkers die waiting on the list than in other parts of the country.  We need to do better.  Much better.

If you could do something about that, wouldn’t you?

Well, you can.

Today here in New York, we kick off the Campaign 4 life, a public health initiative, to register donors on the New York State Donate Life organ donor registry, supported by the Alliance for Donation/New York State Donate Life along with Northeast Kidney.  Its designed to make a focused effort on signing up new donors using a person-to-person connection and putting a face on the need for organ donation.  You can become part of the effort by joining with TEAM Northeast and getting out and spreading the word; sign up yourself and then encourage others. And there’s a lot of good info available here to help you.

When asked, 85% of people say organ donation is a good idea, one they agree with and support.  Yet we are still down at a 20% designated donor rate here in NYS?  We need to find those people in the 65% who just haven’t gotten around to signing up as donors even though they think it’s a good idea.

So, please help us.

And here is the most amazing part – making the decision to become an organ donor doesn’t just benefit those waiting on the list.  It’s an opportunity to live on by giving someone else a second chance at life.  I’ve seen people find comfort in that following the loss of a loved one, because of that final act of unselfish generosity. Think about how incredible that is.

So sign up.  Join our effort.  We need people like you.  Make the difference.

With the size of the list and the length of the wait, no one wants to see THIS happen. Help others make a choice that can save lives instead. 

  

Take care and stay well - Kathe