My Match

After a lot of testing for my brother, my sister, my boyfriend (now fiancé, who proposed in Hawaii at sunset just a few weeks ago, and I couldn’t be happier), and myself… we have finally found a match!  The lucky winner is…. my brother.  Although, transplants are able to take place without matching in any antigens, my brother matched on 3 antigens out of the 6.

I can’t begin to tell you how grateful, appreciative, and lucky I am that my family and the love of my life have shown such incredible support over these past 4 months, not to mention, my entire life dealing with this disease.  My family jokes around a lot, so it just makes it that much more easier to deal with.  We’re able to laugh about it and always look at the positive side.  My brother will have to do a few more tests and we will have to go through consultations with nephrologists, social workers, and financial advisors.  If everything goes as planned, I could be having my transplant as soon as the end of next month.   A wave of emotion has come over me and I only worry about my brother, and hope that everything will be okay for him.  I have a consultation to meet with my nurse coordinator and nephrologist next Tuesday, where I can find out more information and maybe a more definitive date of when my transplant will take place.

You too can help those in need.  “Twenty-six million Americans have Chronic Kidney Disease and millions more are at risk.”  Go to http://www.kidney.org/, where you can donate and to help save a life.

 

“Forget yesterday – it has already forgotten you. Don’t sweat tomorrow – you haven’t even met. Instead, open your eyes and your heart to a truly precious gift – today.”  – Steve Maraboli

It’s the Little Things

I received my lab results from last week:

photo(6)

Although, my GFR (Glomerular Filtration Rate) is still low, it went from 13 to 14!  After over  a year of my GFR getting worse, and my creatinine getting worse, I’m amazed that my GFR actually went up and my creatinine, even if it is only a tiny bit, went down!  I apologize for my enthusiasm, but it’s the little things like this that sure do brighten up my day.  You have to always look at the positive and stay positive because even if doctors tell you one thing, it is YOU, YOURSELF, that knows YOU best.  It’s important to be informed, to keep track of your blood results, and know what everything means as well as the reasons as to why you are taking each type of medication.  Do not expect doctors to be your Mommy or Daddy who will always look after you.  You and only YOU can look out for the best for yourself.

If you were diagnosed at a young age, like myself, be sure to know how to read your blood lab results.  I was diagnosed at 10-years-old and yet none of my doctors told me what GFR meant until maybe about 10 years later.  I had asked before and one of my doctors would say, “You don’t need to worry about it.”  My doctor did not even tell me when I would be able to get on the kidney transplant waiting list (you are eligible to be on the waiting list when your GFR is 20 or below), and about half a year had gone by, when I was eligible a half a year ago.  Luckily, if you have the blood test results of when your GFR was 20 or below, you can still submit that report and it will still be counted towards your time accumulated.  I do not blame my doctor entirely, it is my own fault for not asking again and I should know better than to expect my doctor to follow up on everything.  Just remember to always be PROACTIVE.

And remember to smile, because it really is the little things that count.  Have a great week and don’t let your Monday make you feel like this:

if monday was a person

P.S. Yes, you did learn something else about me, I am not African American. (See above).

In a Nutshell….

I’m a visual person.  Pictures are always more fun to look at in general, and let’s face it, kidney disease doesn’t exactly scream “OH! How exciting!”  So I drew up a few pictures of my current kidney situation:

kidney diagram
What the kidney does.
photo(4)
A million nephrons act as filters to clean out the blood, and secrete of any extra waste substances.
photo(3)
When the nephrons become damaged, they stop working. Healthy nephrons can take on the extra work, but over time more and more nephrons shut down, and soon there is not enough to filter the blood to keep a person healthy.

Kidney function is measured by what is called GFR (Glomerular Filtration Rate).  There is an equation that is used based on your creatinine level, your age, gender and ethnicity.  The higher your creatinine level, the more build up of waste that is in your body.  So my kidney function is at 13%.  But please, do not be sad… I was told that I would have to have a transplant 5 years ago, and I’ve lasted this long without having to go that route.  So I really have been lucky to not have had a transplant yet.  Unfortunately, all good things must come to an end at some point, but I’m staying positive and am hopeful that things will always be okay.  My journey through the kidney transplant process has just begun and I am filled with a number of emotions.  Be grateful for what you have, what you are able to do, and the opportunities that are given to you. Remember, things could always be worse. 😉

“Things turn out best for the people who make the best of the way things turn out.” – John Wooden

P.S. Nephrons don’t really look like that.