Made it to 31!

I am officially in my 30's! Pre Kidney failure Jill might have had a hard time with turning 31 but this Jill is just happy to see another birthday. This birthday year will be extra special because I will get my best gift of all from Lindsey in a month or so. This will be the last birthday I spend on dialysis. Next year on my birthday I might actually get to eat cake and ice cream and stay up past 8 o'clock. It is a good feeling knowing this is the last birthday I will spend on dialysis and all the things that go along with renal failure. Lindsey is giving me the gift of many more birthdays. As I have said many times before and will again in the future, she is my angel. Giving me the ultimate gift! Would have been awesome if I could have had my transplant today but it gives me something to look forward to! So, on this last birthday on dialysis, I might go eat sushi.....since I will never be able to eat that again Post Transplant! Happy Birthday to me!

Kidney Walk 2011 Preparations

I am starting extra early this year with the fundraising campaign because I plan on having a transplant sometime between now and the walk. Here are some WALK details:
Saturday, June 4th, 2011
Memphis, TN at Rhodes College
Non-Competitive 2 mile walk around the beautiful campus
You can contribute a donation with or without walking.
I am going to try to do ALL fundraising on line this year, to keep me from handling massive amounts of money. The National Kidney Foundation where you register is a safe and secure website.
To donate: Go to www.kidney.org
Then on right side of home page, click on Sign up for a 2011 walk
Then click on support a walker
Then type in Jill Ziegler Arkansas
It will then take you to my team, Kidneys Not Included and you can donate or sign up to walk.
Any support will be greatly appreciated. A donation of $25.00 or more secures you a t shirt. People who choose to walk, will get a custom t shirt designed by my sweet brother!
Hope to see you all there!!!!!!!!
All proceeds go to the National Kidney Foundation for research, patients assistance and prevention.

Speaking Engagement

I am excited! I have the opportunity to speak about dialysis and my experience with kidney failure next week at Baptist East. March 10th is World Kidney Day. I spoke to the National Kidney Foundation of West Tennessee last week and they have made me their spokesperson this year for the walk. So I am pretty excited about it. It is a wonderful chance to put a face with kidney failure. I pray my message is encouraging and inspiring!

You got to work for it!

There is a common misconception I've noticed about kidney failure. Many people think your kidneys shut down and you automatically go on some list for a new one. If only it were that simple. It doesn't happen like that at all. For example, I am not even eligible for the list. "The list" refers to the list of people who want to be an organ donor upon their death. They are called cadaver kidneys. You have to meet certain requirements to be on the list. I was not eligible because I have to be in the hospital 1 week before transplant. I have to have a scheduled transplant surgery. With the list, when its your number, you go. You only have a certain amount of time to get to that kidney and have the transplant. That is not an option for me. Every state has a list. And you can get on every list in each state if you want to. You just have to go to a transplant hospital and be evaluated and approved for their program. Many people have asked me questions like, does your doctor put you on the list? No, from my experience the patient has to do all the work. If you need a kidney, then it becomes your full time job. Filling out forms, going to doctor appointments, being evaluated, poked, prodded and blood draws. And if you have to go out of state, there is a lot of expense involved. But it is all worth it. It's my life, so it was my job to figure out how to get a kidney.

My entire immediate family was tested and my Mom, Dad and Brother were all 3 matches. Chris was the only person not a match. But we knew he wouldn't be because we are not the same blood type. He insisted on being tested anyway. But then about 3 months after I had decided my brother was going to be my donor, we found out my blood disorder is genetic and that took away the option to have a related donor.

I never in a million years thought it would happen so fast that I would have a live, non related living donor. Lindsey spoke up very quickly and said she was willing to get tested. That in itself to me, is a miracle. God has definitely worked hard on this transplant too. He knew from the beginning, the day I went into kidney failure that I would need a transplant one day and He already had Lindsey in mind. Two years ago, neither she or I had a clue what God had in store for us.

I just wanted to share how difficult it really is to find a donor. In my case, which is not normal, I have had weird obstacles. But Lindsey came into the picture and made it a breeze. She was the one and only person tested....aside from my family. And the fact that she was a match, is nothing short of a miracle! I have a friend on dialysis who has had over 300 people tested and nobody has been a match. That pains my heart. I pray she finds a matching donor. But you see, it is our responsibility to get ball rolling. I am not sure how other transplants work. I think if you have to have some type of organ failure, kidney failure is the one I would pick. It's the only one I know of with a machine to keep you alive while you wait and everyone has two kidneys.....you have pair so you can share!!!!

I want it to be a PARTY!!!!!!

I haven't talked to Lindsey about this but I want the transplant experience to be a party. I don't want anyone worrying....just praying all goes well for both of us. Anyone that knows me well, knows I like a crowd. The more the merrier. I like to cram as many people in my hospital room as possible. Lindsey may be totally opposite. She might want to rest in private.....I need to find out her wishes. But if it were up to me, we would just have a big party there in Iowa!!!!! I think because I love people and I feed off their energy, it calms my nerves when something big is happening. I can't explain it because I don't consider myself "the life of the party"....that's usually my husband! But I love people and want them all around me. I feel the safest in the hospital when there are large groups of people praying around me. Maybe I am selfish? I don't know? I just enjoy the energy a crowd brings. Too bad I will be 8-10 hours from home. There probably won't be a large crowd of friends and family, since I will be so far away. But I definitely won't be alone. I will have Lindsey, Chris, Erick and hopefully Alyssa. My parents are going to try to make the trip too. And of course I will need the comic relief of little bro, if he and Kasey can be there. Also my cheerleader Aunt Susie needs to be there! It's going to be so miraculous, I want as many of my peeps there to witness it as possible. Even if friends and family can't be there, with ahus, I will have plenty of docs keeping me busy and company.

And to my heroes who will be at home. Those that will be taking care of my most precious possession of all, Madeline. You know who you are. I will never be able to thank you enough. You are some of the unspoken heroes of my tragedy. Picking her up from school now when I am sick on a whelm. And keeping her while I am at transplant! We have awesome friends and family!!!!!! Madeline is not stressed at all about mommy getting a transplant. She is just looking forward to all of her sleepovers she will be having. And that is exactly how I wanted it. I don't want my precious baby worrying. I will be in great hands!

So, I hope its a party for all involved. I pray Lindsey has a super fast recovery, Chris and Erick stay calm and cool....as they are, I have a successful transplant (no doubt in my mind) and my friends and family all celebrate this wonderful work of God!!!! I want it to be a party!!!!!!

We need each other!

Recently I have reconnected with an old school mate. Turns out he is having kidney problems. If it wasn't for the technological advances in the way we stay connected to each other, we would have never known about each other. Yes, another facebook success story. I personally find facebook to be a rewarding meeting place. I have met up and become friends with so many people on there. I might not be getting a kidney if it wasn't for facebook. That is where Lindsey found out about my story. Anyway, facebook is a whole different discussion.

I mainly want to talk about the "club." No your not missing out if you are not invited. It's what I refer to as the kidney club. People with kidney failure are a different breed of people....or so my experience has been. I have observed that we are all fighters by nature, not willing to give up. From what I witnessed in the dialysis clinic, we can be difficult patients at times...and yes I include myself in that. But we all have a big heart and reach out to one another. Kinda like prison, "what brought your here?" gets asked. For some it was blood pressure, diabetes, PK or like in my case, some rare and out of the ordinary disease. What we lack in kidneys, we make up in heart. We wanna help the "new guy at clinic" feel welcome. It is a scary and depressing place. I had so many sweet patients try and make my clinic experience better. And I made some great friends at dialysis and because of dialysis. Some friends were patients and other were people from church or other places who kindly and generously took me to dialysis. Any hoo, dialysis patients lean on each other for support many times because nobody understands the journey, unless you have travelled it yourself.

For me, Alyssa was my saving grace. Once I found her and we figured out we were going through the same thing at the exact same time, I knew I would get through this, with her! She is the brave one of the two of us. She started dialysis first, started peritoneal dialysis first and got her transplant first. She has and remains my guiding light. I don't know what I would have done without her. She is the ONLY person who knows what I have been through.

And now there is this new person, who might have to start dialysis. I am going to pray that either his kidneys wake up and start their job or he gets a transplant. I would love nothing more than for him to skip dialysis all together. But if dialysis is in his future, I want to be his Alyssa. I want to guide him and help him get the best care from the beginning. I learned a lot about "what not to do" in the dialysis world. For example, going to a small, hospital owned dialysis unit is a BAD idea. I just want to steer him and his family in the right direction.

This is just an act of God. It just goes to reinforce how important EVERY encounter with EVERY single person in this world is. You never know who is going to change your life or be able to help you in some way. In some ways, being a part of the kidney club and having this experience has taught me so much. More than I probably would have ever learned otherwise. We all need each other whether we want to admit it or not.

It's that time of year again! Seems like yesterday we were working on the 2010 walk. But the 2011 walk is around the corner. It will be in Memphis at Rhodes College on Saturday June 4th. I plan on walking in it in some capacity. I hope this year to have my kidney at the walk. So this years team is titled Kidneys Not Included....but soon they will be! I will have the honor of having my beautiful, gracious donor at the walk too! Word has it that Lindsey and I may be speaking. So if you were a part of our walk last year, I hope you will consider joining us again this year. And if you didn't get to walk last year, please walk this year. I have so much to celebrate and be thankful for!!!
Come back soon for more updates!!!!!