A Kidney for Katrina

Ya'll, supposedly I'm mostly "non-symptomatic" with this whole kidney failure nonsense I've got going on but somebody forgot to notify my feet and ankles that they are supposed to behave and not act like my stomach at an all you can eat buffet.  Seriously.  My toes look like fat little sausages and my ankles are just squishy extensions of my calves. To add insult to injury, whenever my toes cause a sausage craving, I can't even eat the delicious sausage because there's too much salt and it'll cause even more swelling.  Also maybe my toes shouldn't cause me to want food, but that's a mental thing not a kidney thing. In the grand scheme of things this is a minor inconvenience, but does anybody have any recommendations for a sock that doesn't look like it's trying to chop my foot off my leg?  No really.

End stage kidney disease is a long waiting game, one I've played for a while now and have always known that the time would come for me to need a new kidney or dialysis.  Well, I'm a little closer.  We just went through a big move and change in our lives so obviously it is also time for a drop in kidney function.  I have dropped from a steady 17% to about 13%.  My doctor thinks that I will be able to wait until I'm closer to 5% before needing to start dialysis because overall I'm not very symptomatic and my other levels are pretty stable, which means I am really good at this game and am winning. Today I received a call from Vilda, the wonderful transplant coordinator at Walter Reed, with the recommendation that I return to actively asking and looking for a donor, in the event that the amazing potential donor I wrote about here  is unable to donate.  This will prevent me from having all of my kidneys (eggs) in one basket and  hopefully decrease the wait time for a tra

I've been keeping a secret.  I've kept this secret because I didn't feel like it was my story to tell but now I'll share.  I have a match.  I have a potential donor.  This amazing person is a match and has undergone testing to ensure that they are a good candidate to be a donor.  There are a couple more tests that need to be completed for their team to be 100% comfortable with this person being a donor and I wouldn't have it any other way.  I don't want a kidney to the detriment of somebody else.  This person is my sister, Elizabeth. So if you are one of the several amazing people who sent in blood or who called and you haven't heard anything, it isn't because you aren't amazing, it's because the search has been temporarily put on hold while the team tests Elizabeth to completion as a sibling is the best possible match.  Thank you for stepping up and if something (a bazillion things beyond any ones control could) happens, you may get a random c

One of the joys(?) of going on the transplant list is that in order to be active and actually receive a kidney, the transplant team has dug deep into my medical record and I have to get cleared by every specialty I've  ever had the pleasure of meeting.  Because I seem to be the queen of random, mostly benign, and always ridiculous (or maybe that's just me) medical things, I thought I'd share with you what has been filling my days this month as I work towards being able to accept  a kidney.   So no worries, all you wonderful people who have called Vilda and had blood drawn, I've been visiting doctors too.  You are not alone. The first doctor I visited on the tour of Katrina's medical anomalies was the dermatologist.  I needed to see him because 6ish years ago I had a squamous cell something or another removed my face.  I wrote about it my long neglected family blog here.  Spot Removal   I wish that last part had faded from memory but it still makes Madelyn l

You guys.  I am amazed at the number of amazing people in my life and in the lives of my friends and family members who have reached out to find out about being tested as a match for me.  It is wonderful and amazing and I just love it. I am one person, and I only need one kidney.  There are several thousand more out there who need a kidney so if you are somebody who was willing to reach out to me only to find we weren't a compatible blood type or if you're one of the amazing people who has magical O blood but find that we aren't a match a bit later in the process please consider being an altruistic donor for somebody else.There are programs across the United States looking for live donors daily.  Being able to provide living donors for patients in my age group helps free up cadaver kidneys for the grandma's and grandpa's out there who maybe don't have the same access to the amazingness I do. Even if I don't find my perfect match, my energies will not

My entire diagnosis, this is how I have described my disease.  Its about as simplified as I can get. Immunoglobulin type A (IgA) nephropathy is an immune condition in which my body produces too many antibodies (specifically the ones that fight upper respiratory illnesses).  These excess antibodies have no where to go once the illness is defeated so they collect and clog my kidneys like good little soldiers hanging out at a bar after battle. Clogging my kidneys leads to inflammation, blood in my urine, and ultimately a decrease in kidney function which has brought me to the point of requiring a transplant. The good news is that my nasty little disease is stunted by immunosuppressant therapies which are required post transplant so the chance of my IgA affecting a new kidney to the point of failure is low. If you'd like a little more fancy description or understanding, please click these links. IgAn - Kidney.org Mayo Clinic  - incidentally what this sight lists as potentia