Living with Lupus

A link to Rob Mayeda's blog was included in the weekly newsletter from the Lupus Foundation of Northern California. Honestly, it's one of the best articles I've read on what living with Lupus can be like and it's not even from the patient's perspective. One of the things that rang true for me when I read it was talking about his wedding vows and "in sickness and in health" and remembering how true that was for Randy and I. He was choosing to stand by my side regardless of what may come and I love him for that, and so much more.

Take a moment to check out Rob's blog post on his wife living with Lupus.

One Year Check Up

Today is officially day 363 from transplant. I can't believe just two more days and it's been a full year! I had to go up to UCSF for my one year check up with the research nurse today. Since I elected to do a drug research study I had more appointments than one would normally have post transplant. The visit was pretty basic - go over meds I'm currently on, fill out another survey on how the study drug has effected me, blood draw and visit with the doctor.

Today was a whopping 16 vials of blood, the same amount they drew the day of the surgery. My veins are getting so darn difficult that Joanne (the study nurse) told me I have a reputation with the lab workers for being a hard stick since they have to wait a bit longer to get the specimens. Took 3 pokes to finally fill up all the tubes - each arm and then again on my hand.

Everything looks great based on last month's lab work. They expect a kidney transplant patient's creatinine to be at 1.25 and mine is at .92 (lower is a good thing!). One year is a huge milestone as 90% of organ/graft rejection happens within the first year. That's a staggering percentage and I feel so blessed to have made it to that milestone.

I felt awkward as the nurse and doctor kept thanking me for participating in the clinical trial, it seemed like such a no brainer thing to do. My "sacrifice" was nothing compared to what Dan gave up for me. The appointment was also an emotional one, it was really hard not to cry tears of joy as the nurses and doctors are saying "happy 1st birthday". It truly is the start of a new life and I am so thankful for it.

Donate Life California

This is a post started in April......

If you know me at all, you know my life was changed forever on July 17, 2009 when I received the gift of life from an amazing friend who donated his kidney to me. It's really hard to go through something like that and not be immensely impacted. Since then, I kept seeing people talking about training for Donate Life and being a Donate Life Ambassador. I would always think to myself it would be a great thing to get involved with, but then never would follow through.

Fast forward to earlier this week and I get a call from an amazing lady (she is passionately involved in organ donation and Hepatitis awareness) asking if I would be interested in attending a CTDN training. First I had to find out what CTDN stood for (California Transplant Donor Network) and after a little research I realized it was the training I kept meaning to get plugged into. How crazy is that? I attended the training on Saturday and was blown away by the stories people shared as to why they feel passionate about promoting awareness for organ donation.

There were two fellow kidney transplant recipients, a woman that was transplanted over 20 years ago (amazing!) and a man that was transplanted just one week before I was, also at UCSF. It was really special to talk to two people who have gone through the same surgery and especially to talk with the woman that was transplanted over two decades ago and still going strong on the graft.

Ultimately the training was to give a little more knowledge about organ donors, what can be donated, how people register, etc. CTDN goes to many festivals, health fairs, college campuses and high schools to promote awareness and encourage people to register as donors. I'm looking forward to getting plugged in!