I recently received an inspiring email from Pam who lives in the state of Illinois in America.And she brought to my attention, the often over-looked topic of organ donation and how important it is. Thankfully, many countries now have organ donation schemes and organisations available. I know here in Australia, when we renew our driver's licence, we have to nominate if we wish to donate our organs - and this is noted on our licence.
But here's Pam's story:
"My name is Pam , I am a Lupus patient.
I was diagnosed with Lupus Nephritis in 1993 at the age of 20.
I have been able to lead a very fulfilling life. I married, had 2 successful pregnancies and became self-employed, with minimal side effects from Lupus. Because I had severe damage to my kidneys from Lupus, I always knew I would some day need dialysis or a kidney transplant.
I placed my name on the organ transplant list in 2004. Unfortunately my kidneys showed greater deterioration and dialysis was eminent. November 2005, I started dialysis. It was a grueling 3.5 hrs ordeal 3 times per week hooked up to a machine.
I was lucky, and on May 22, 2007, I received the gift of life from a deceased donor. No longer did I have to be tethered to a machine. I now have increased energy, can spend more time with my kids and give back to the community in more ways than I could ever before. I have an increased awareness that I am not the only one who deals with a chronic illness. I will never be "free" from Lupus.
Though I now have a functioning kidney, the chance for Lupus flares are always possible. Lupus is an illness that deserves more research and awareness. Lupus can be confusing and discouraging to those of us affected. The general public has little knowledge as to what Lupus is. Lupus awareness must be spread."
Pam is also a volunteer for the the Gift of Hope in Illinois. She also presents a program to high-schools in the area about the importance of organ donation. And she is a wonderful lupus advocate and has a blog by the same name. Check out The Lupus Advocate.
Thanks so much Pam! We can't forget organ donation and its importance when it comes to lupus issues.
Geoff.
Posts
2 comments:
First of allI think it was wonderful Pam received a kidney and will keep her in my thoughts and prayers to be healthy and active.
I know the horrors she experienced and the fear still in her heart as my sister experienced the same, unfortunately her donor's kidney from our half brother did not work out and her body rejected it.
Also, being on the donor list can be nerve-wracking as the side health issues of Lupus can lower your chances and even remove you from the list altogether. Thee's constant testing and re-confirming to be done-all very frustrating for all involved.
The states also have "donor" options on our drivers license. I m a donor, but as an afterthought, I wonder if they can use anything from me being a Lupus patient myself-we can't even donate blood! If I knew donating my body to science would benefit others with Lupus I'll do it! Anything so save others the pain and stress on that emotional roller coaster.
Best wishes to Pam and others going through the transplants or dialysis. Healing Hugs, Lupiebin
I have a question for all who care to share. How many here are dealing with anemia? And are you receiving any type of treatment for it? (not lack of iron-but because of cronic illness)
As if we don't have enough specialists to see, my family doc is shipping me off to a Hemotologist.
Somedays I think I hav contact or appts. with anyone and everyone that ends in "-ogist"!
Would love to hear from everyone and how they cope.
Healing hugs, Lupiebin
Post a Comment