What?! It’s 2014?? Hey Guys… I’m Still Here!

Hi.  Yes, I’m still alive.

I apologize for putting you guys in suspense (that is, if you ever were in suspense…) but I’ve been recovering from my transplant that I had a month ago. I had my transplant on Tuesday, December 3rd, and since everything was looking good (my creatinine had come down to .08! I don’t think my creatinine has ever been that low, except for maybe when I was 9 or 10 years old) I was discharged from the hospital on Saturday, December 7th.  I was SO happy to be out of the hospital and resting comfortably in my parents home (my brother and I stayed at our parents for a couple weeks as they were our caregivers) and to take a long SHOWER.  I never realized how much I loved showers until then.  I had a wonderful Sunday staying at home, felt pretty good and was moving around pretty well.  On Monday, December 9th, I had an appointment at UCSF at clinic, which is a weekly check up on how things are going and to check my blood results that I had done in the morning.  My creatinine had gone up to I believe to almost 2 and I had to be remitted back into the hospital that same day.  The doctors were concerned that there was kidney rejection so they wanted me to stay in the hospital so they could monitor me.

The Agenda board in my room
The Agenda board in my room

 

Having a private room is quite nice, I must say.
Having a private room is quite nice, I must say.

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My loving fiance, who visited me every day.
My loving fiance, who visited me every day.
Concerned father calling mother.
Concerned father calling mother.
By the end of those 8 days, I was getting just a bit tired of needles.
By the end of those 8 days, I was getting just a bit tired of needles.
Yes, needles... you're not my friend.
Yes, needles… you’re not my friend.

I remained in the hospital for the next 8 days where I went through Plasmapheresis and was given numerous medications such as IVIG (IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities), Rituximab (Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells.), and Eculizumab (Eculizumab protects blood cells against immune destruction by inhibiting the complement system).  In a nutshell, since all of these terms and words are confusing, most of these medications would help stop harmful antibodies from attacking my brother’s kidney.

Eculizumab is a fairly new drug and my doctors had asked if I would be willing to try this new experimental drug.  It had been used at UCSF before but only with compatible blood type transplantation.  My doctor mentioned that I would be the first to try this drug at this hospital, who has had an incompatible blood type transplant.  I asked him what the side effects would be and he mentioned a whole bunch including Meningitis.  I was like wonderful.  But they said it rarely happens and I thought to myself, what other choice do I really have?  After researching Eculizumab and learning more about it, I found nothing but positive results (Except for maybe the 6 figure cost per dose.  Luckily my insurance covered it).  So we went ahead and did the first dose of Eculizumab which is through an IV and lasts about 30 minutes.  I have to admit I was a little scared and concerned about what would happen to me regarding the side effects.  I waited, and waited…. luckily, all I experienced was a flushed face.  Thank you Buddha.

After 8 days of drugs, plasmapheresis, remembering to pee every hour during the day and every 2 hours at night (this is important because if the bladder becomes too full, it might risk the chance of having the incision in the bladder from the new kidney burst open causing complications), biopsies, and being poked at 4:00 AM every morning for blood work, I finally came home on Tuesday, December 17th.  Since then, it’s been mostly blood work twice a week and plasmapheresis.

Plasmapheresis
Plasmapheresis

Everything has been looking up since then.  My creatinine is stable at around 1, and my titer count is not too high.  Hopefully, within the next couple of weeks I can stop Plasmapheresis completely, and have the catheter in my chest removed (it would make showering that much more enjoyable, but hey, I’m not complaining, I’m so happy to take a shower in the comfort of my own home, in my OWN shower). I couldn’t be happier that my brother is doing so well.  He still gets sore from time to time but usually after a long day of moving around.  I’m pretty much the same way, but am moving around pretty well.

My incision after almost a month.  Still a little bit of glue left.
My incision after almost a month. Still a little bit of glue left.

I hope things continue to be positive and my body accepts my brother’s kidney more and more.  For now, since I’m on so many immunosuppressants, I have to remain in an imaginary bubble, as I’m more susceptible to getting sick.  Guess that leaves me plenty of time to start planning for our wedding (ai yai yai).

Here’s to a new year and a new life!

Thanksgiving With A Little Plasma…

First, I’d like to say Happy Thanksgiving to everyone!  It’s been a rough week with my Plasmapheresis treatments and a bit of a hiccup last night.

Yesterday, my blood cell count was really low and they said I have severe anemia, in which I would need a blood transfusion.  Because there’s no way to get every single drop of blood back into my body from the treatments, and I have been doing the treatments everyday, it’s not a surprise that I was going to need a blood transfusion.  After my Plasmapheresis yesterday at 1pm, I ended up staying at the hospital until 11pm last night and had my next treatment this morning.  I’m a bit exhausted but found out good news from my nurse this morning that my titer count is low and at the level it should be and my blood cell count went back up.  My GFR went down to 8, but everything is going as planned and I have 4 more treatments to go.

photo 3IV for my blood transfusion

photo 2My lovely bag of Blood type O+

There are so many things to be thankful for, it’d take forever to list… be grateful for your health, your friends, your job, the roof over your head, the opportunities you are given and of course your family. I am forever grateful/fortunate for the love and support of my family, and the love of my life…with them I am never lost.

I am also thankful for the Friends Thanksgiving Marathon that was on while I was doing my Plasmapheresis 🙂

photo 1

I hope you all have a wonderful Turkey Day! Cherish every smile/laughter/hug/moment and live for TODAY!

“It’s not what’s on the plate that matters… it’s what’s on the chairs.”

 

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

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.