So Close….. Yet So Far….

So today is November 7th….

NO surgery.

In the past 3 weeks I have been busy with my Plasmapheresis and getting everything scheduled for my transplant today. Unfortunately, the last two treatments out of the 6, seemed to not have done much in lowering my titer count.  If you don’t like blood, I suggest you don’t look further into this entry.

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These pictures aren’t all that bad to me but I know some of my friends can’t stand the sight of blood.  These are a few pictures from my Plasmapheresis treatments.  A catheter was inserted on Friday, October 25th… probably not the most fun I’ve had, but it wasn’t too bad.  My neck was just really sore after they inserted it and sleeping was a bit difficult the first couple of nights.  Felt like someone punched me really hard in the neck.  After 3 treatments, my neck seemed to be pretty much fine and the treatments are pain free.

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image_1My machine.

image_5My fabulous fashion statement.

Treatments took about a couple hours the first two times, and each time after was shorter.  The very last one was about 50 minutes.

So, after preparing for the past few months for this transplant to take place today, I was told yesterday that my titer count was not low enough.  Which will result in most likely more treatments and a new surgery date of… December…. most likely in the beginning of December.  As much as I want to be furious and upset, and all the emotional frustration that I am experiencing right now, it doesn’t make sense to cry about it.  It is better to be safe than sorry, and to make sure everything is done correctly in order to have a successful surgery.  After all, I am extremely lucky to be receiving a kidney as quickly as I am.  A month is nothing compared to people who have been waiting 10+ years for a kidney.

For all my survivors out there, keep your head up and stay strong!

“A strong person knows how to keep their life in line.  With tears in their eyes, still manages to say, ‘Nah, I’m fine.'” – Unknown

Ready… Set… Transplant!

After months of testing, evaluating, waiting, and more waiting…

My brother and I are good to go for our kidney transplant on November 7th!  We have met all the criteria for an incompatible blood type transplant and my titer count was not too high.  I will have to go in for 6 Plasmapheresis treatments every other day for the next two weeks prior to my transplant and will have a medication infusion done the day before my surgery.  I am told I will be very tired after each treatment, but I am just so lucky things are going so well right now.

I’m so amazed at the advances in medicine and the possibilities with incompatible blood type transplants.  It truly is a wonderful thing knowing that there are other advancements in transplantation where it can still take place with different blood types.  With a waiting list of about 95,000 and an average wait of 5-7 years for a kidney, hopefully with the ability to perform more and more incompatible blood type transplants, that number will slowly decrease and more patients will receive a kidney sooner.

Visit http://www.kidney.org to help donate and to help save a life.

With that said, I had a little time to do some early Halloween nails:

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“When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile.” – Uknown

Stay positive and never give up!

Almost…

Good Morning Readers,

As I said in my last post, I was going to have my consultation at UCSF for my kidney transplant.  The consultation consisted of watching  a slideshow, talking with a nephrologist, social worker, financial advisor, and my nurse coordinator who I have been in contact with.  I obtained a great deal of information, of which I mostly already knew and some that I did not.

To summarize:

My brother matches on 3 out of the 6 human leukocyte antigens (HLAs, which are markers on cells in your body that help your body distinguish between what is you and what is not you).  You inherit 3 antigens from your father and 3 from your mother for a total of 6 antigens.  Siblings who have the same parents may inherit the same or a different combination of antigens (www.itns.org).  In this case, my sister had 0 out of the 6 antigens and so did my fiancé.

For example, my brother received the blue antigens from my father, and I received those same blue antigens as well.  But he received the 3 purple antigens from my mother and I received the blue antigens from my mother, which has him matching in 3 out of the 6 antigens.

My sister, could have received the red antigens from my father and the blue antigens from my mother, while I received the blue from my father and the purple from my mother (or vice versa).  Having us match in 0 out of the 6 antigens.

 

Since my brother matched 3 out of the 6 antigens, they felt it would be best to have him do more testing as he may be a better match for me.  I also did another blood draw at my consultation appointment a couple days ago of which they will find out if my titer count is low or high.

What the heck is a titer?

Here’s a brief explanation–  “Antibodies are the part of your immune system that recognize foreign cells in the body (like a cold, flu, or other infection) and then stop them from hurting you.  However, antibodies may also consider a new transplant foreign and try to prevent it from “hurting” you by rejecting it.  Therefore, it is important to check whether your antibodies are compatible with the potential donor’s antigens.  Your specific antibodies are determined by a blood test which measures the degree of response, or the strength of preformed antibody, by testing your blood against a panel of reactive antibody (PRA) titers. The percent PRA is a measure of a potential recipient’s sensitivity against all possible antigens.  If you have a high PRA level, this means you have already formed antibodies to many different antigens and are therefore more likely to reject a donor organ than a recipient who has zero perfect PRA or no antibodies.” (www.itns.org)

So maybe not as brief, but as of this week they will figure out if I have a low or high titer count.  If my titer count is too high, that means my body is more likely to reject my brother’s kidney and he will not be able to donate.  Even though my sister, and fiancé were also in the process of testing to be potential donors, they too, will not be able to donate because they are all blood type A.  If my titer count is low, it will be safe to say that I can go through with the transplant with my brother’s kidney, but will have to go in prior to the transplant surgery for treatments called plasmapheresis.

Plasmapheresis is basically the process of filtering the blood of harmful antibodies.  From what I’ve been told, it is similar to Dialysis.  Plasmapheresis will help remove the harmful antibodies so that my body has a better chance of not rejecting my brother’s kidney.  I would also be given a medication to prevent antibody production.  I was told that depending on the titer count, would determine the number of treatments I would have to go through before the transplant.

 

Whew! A lot of information I know.  So my family and I are keeping our fingers crossed that my titer count will come back low and we will be able to go forward with the transplant.  If my titer count is high and if we are not able to do the transplant, the next option would be paired donation (my brother would donate to someone in need of a kidney that is compatible with him, in exchange for a kidney that can be donated to me that is compatible with me), or hoping to find someone that has blood type O.  However, the waiting list for the paired donation can still be as long as 18 months, which would most likely mean I would probably have to go on dialysis.

Positive thoughts here on out! I should be finding out my titer count results the beginning of next week!

 

“When things
go wrong, as they sometimes will
When the road you’re trudging seems all uphill
When the funds are low and the debts are high
And you want to smile, but you have to sigh
When care is pressing you down a bit
Rest if you must, but don’t you quit.” – Author Unknown

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

Quick Mani

When you don’t have a lot of time for a detailed mani and you don’t want just a plain color on your nails, here’s what I do:

I take a pretty color like Essie’s “Haute as Hello,” and lightly brush the tips of my nails with a sparkle nail polish like Milani’s “Disco Lights.”

And done.

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A VERY simple, quick and cute summer mani.

Happy Mani Monday! 😉

It’s the Little Things

I received my lab results from last week:

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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.
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A million nephrons act as filters to clean out the blood, and secrete of any extra waste substances.
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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.