Kidney Walk Coming Up!

I am so excited to be involved in the 2010 Kidney Walk of the West Tennessee chapter of the National Kidney Foundation. So far, I have raised over $2500.00! I am so excited and proud of and thankful to my friends and family who have helped make this possible. My mom and dad bought t shirts for everyone who is walking that was designed by my very talented brother, Matt! The shirt is soooo cute! The walk is June 5th at Rhodes College in Memphis, TN. After the walk, my Aunt Judy and Uncle Dick are throwing an after party! I am really looking forward to that too!!! This is such a special event to me and to have all of my friends and family with me makes the occasion even sweeter!!! I will post pics after the walk!

Great News!!!!!!

I just got a phone call from the University of Iowa Hospitals and Clinics. They had their pre-transplant board meeting to discuss my case and they have decided I am a good candidate for a transplant!!!!!!!!! I am so excited. In the past, this is where I am usually told no. But not this time. I am officially approved for transplant!

The down side to this is, unfortunately, my brother, mom and dad cannot be donors. This stinks because my brother is a perfect match. They are afraid that the blood disorder I have, which is genetic, could cause a problem in one of them. I wouldn't want to take one of their kidneys with a chance something could go wrong with them. However, they are still considering secondary relatives such as aunts, uncle, cousins....etc. They would PREFER to use a kidney from a living non relative and I am not a candiate for the donor (nonliving) list. I am not going to stress about it though. God has gotten me this far...a kidney will show up!

Dr. Thomas is also in the process of writing a letter to my insurance company. You see the drug I need (for a lifetime) to keep my HUS in remission costs a pretty penny. $300,000.00/year to be exact. But I have faith that this will work out too! I am just so relieved to here the words, "You were approved for a transplant!!!!" Music to my ears!!!!!
xoxo
JZ

To Wildcat

Everybody deserves the best health care. Regardless of their economic status, color of their skin, the number of their age, level of education or any other factor, they deserve the best health care. Unfortunately, we cannot get the best, or even close, in this town. I have been blessed with knowledge and I am going to share it. So quit asking candid questions to patients. Patients have the right to seek better treatment. Or I suggest you offer them better care.
JZ

Go Hawkeyes!!!!!

Okay, I am officially a Hawk Eyes fan! Who would have thought Iowa City would be such a wonderful place. I really enjoyed our visit there this past week. And the news that they (UI) have figured out a way to do kidney transplants in patients with aHUS......well that is icing on the cake!

I did not go to Iowa expecting to here anything different from what I have been told by other major transplant facilities. But Iowa really seems to have this aHUS mess figured out. There is still a lot to learn about it of course, but I think UI is leaps and bounds ahead of anyone else in the country that I know of. I met with the aHUS expert, which was a real treat in itself. I felt like I was meeting a celebrity. Pretty much everything that is known about aHUS is thanks to him and his team. I also got to meet the head of Nephrology and Chief of Transplant Surgeries. I got a real good feeling from all three of the doctors. I felt safe and assured that they really get this aHUS and most importantly, were able to explain things to us. All of the doctors, nurses and staff we met were so nice and polite and willing to help in anyway possible!

I had 18 vials of blood drawn, EKG, and a chest Xray. They still need to do further testing to make sure I am a good candidate for transplant. I should know in the next few weeks what the future holds. I am just so thankful I had the opportunity to meet the experts on my diagnosis and learn more about it. A transplant will happens at some point. The science is getting so close.....it may be already there in Iowa!!

As the story with Iowa unfolds, I will keep you up to date with whats going on. But things there look really promising....and that's is all I need!

http://www.alxn.com/News/article.aspx?relid=461488

This is the drug that will potentially free me from dialysis! A good article to read if interested in the research going on about my aHUS.

Mail Received!

On Thursday, I received a certified letter from my "old Jonesboro nephrologist". I do not know if all patients receive these types of letters but I have a suspicion I received one because I was so special!!! It stated, "I will be unable to provide nephrology (dialysis) services or other care for you in any capacity, including the ****ER, effective immediately. Should you find yourself in the emergency department at ******, the physician there will need to contact an alternative nephrologists locally or your nephrologist in Memphis." Okay, this is hilarious to me!
1.) Dear Dr. Incompetent,
You never did a good job of providing me nephrology services in the past SO what in the world makes you think I would ever ask to be on your service again? Remember, I fired you.
2.) They would have to take me kicking and screaming to your joke of a hospital for treatment in the first place. There is no way I would seek treatment from you at your hospital.
3.) And yes, I would make the drive to Memphis or St. Louis.....you don't ever have to worry about treating me again.
Sincerely,
JZ