Sh*t Happens

Another year gone by before my very eyes. So much has happened and I’ll try my best to summarize on what has been going on.

After receiving my kidney from my brother in 2013, things have been going absolutely wonderful. There really is no reason to complain as I am in great health, my creatinine is down to 1.30 and has remained stable, and I have been feeling the best I have ever felt in a very long time.

What I didn’t mention before was that towards the end of 2015, my husband and I were planning to finally start our family and prepare my body to become pregnant. My kidney specialist assured me that many of his kidney transplant patients have been able to get pregnant and have had successful pregnancies. In order to prepare my body to become pregnant, I would need to be completely off Cellcept for three months and then we could try and conceive.

At my final month of being off of Cellcept, and thinking how exciting this will be when I am finally able to become pregnant!, I had taken a blood test only to find that my creatinine had shot up to 2.51. I was admitted to the hospital on 12/01/15 (something about the beginning of December where I tend to always be in the hospital) where I would later undergo an ultrasound and biopsy. As it turned out, I was experiencing kidney cellular rejection and would need to go through three treatments of Thymoglobulin, which is a medication used to prevent and treat kidney rejection. This medication was done by infusion and took around 4-6 hours depending on the dosage.

After being discharged from the hospital, I started to experience diarrhea. At first it seemed like nothing and maybe it was because of something I ate, but the diarrhea became more often and soon I wasn’t able to eat much of anything because of how bad it had become. I wasn’t hungry, and quite frankly, was scared to eat or drink anything because of how bad my diarrhea was.

There were a couple nights my husband was so worried, he took me to emergency to find out why I was having so much diarrhea. The doctors also couldn’t tell exactly what the problem was. Getting out of the house was a challenge, because I never knew when it would come on and even though I hadn’t eaten much or had anything to drink, the diarrhea would still happen at unexpected times. It was taking its toll on my life, not wanting to go anywhere, not wanting to eat or drink and worrying my husband more than anything. I went to see a Gastroenterologist where they did an endoscopy and a sigmoidoscopy but the results came back normal. My kidney specialist decreased my dosage of Cellcept thinking that the medications could have been the cause of the diarrhea but when that didn’t work, they suggested taking a probiotic. The probiotic ended up not helping and no one could tell me what was wrong with me or why I was experiencing such severe diarrhea.

In the beginning of January 2016, I was admitted back into the hospital to receive more treatments because my doctors were not happy with my creatinine level. I had another biopsy in which they discovered the scarring of my kidney to be little to moderate. I had developed a little bit of an antibody in which was going to be treated with IVIG (which is what I used after my transplant in 2013) and consisted of three glass bottles, an infusion that lasted about a couple hours. I would also be treated with Methylprednisolone (30 min infusion), and magnesium (also an infusion).

After all these treatments, my creatinine level was finally going down but still had the unsolved mystery of my diarrhea. I tried everything-probiotics, decreasing medication dosages, sigmoidoscopy, endoscopy, Xifaxan, and still nothing seemed to help. After 16-17 weeks straight of diarrhea with the longest break of not having it was around 4-5 days, and losing a total of 30lbs, it finally started to subside.

Never in my life, have I ever been more grateful to not experience that nervous, uneasy, sweaty feeling unsure of when you are going to have to go to the bathroom and being able to eat comfortably not having to worry about what the consequences will be. It was such a frustrating/painful experience in the sense that my booty hole was so sore and burning that I was dreading going to the bathroom (I apologize for this information being so blunt but I feel people can relate best, when you’re real and up front with the experiences you go through, as shitty [literally] as they may be). To all the people out there that experience gastrointestinal issues, IBS, etc. I can only imagine what you must be going through and I must tell you, my heart and asshole are with you (salute gesture).

shithappens

 

Stay tuned:

First attempt at pregnancy was unsuccessful, so what now?

 

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.

photo 4(1)

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!

Game Time

Today is Tuesday, December 3, 2013. Transplant Day. As I wait in my room with my fiancé, I think about how lucky I am to have such loving and supportive people around me. Although, I have told my fiancé, Scott, to go home, instead of staying here over night, he is too stubborn and won’t listen to me. I told him he won’t get any sleep, especially tonight because it is a critical time where nurses will be in and out of our room often to check on me. But, he insists and I can’t complain… I’m just grateful to have him by my side.

Thinking positive thoughts, wish all the best for my brother, my hero,  who has sacraficed a great deal for me… I only hope I can repay him back in some way, and I’ll sure as hell try my best when I see him again and with him literally being a part of me.

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.”

 

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.