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?

 

National Kidney Month

It’s March, which means it’s #NationalKidneyMonth! Make sure to spread awareness about kidney disease, be in the know about prevention, and get screened for this silent killer! Check out @nationalkidneyfoundation for more information. I love my ☝🏼kidney! 💚

🍊 = @chinaglazeofficial “None Of Your Risky Business.”

🖤 = @opi_products “Black Onyx.”

And…Three Years Later…

Well, this is embarrassing… A lot has gone on since my transplant back in 2013, and I promise to give a recap once I get a chance.  For now, I’d like to celebrate Rare Disease Day! This is the post that I put up on Instagram (@j.mura_designs):

It’s #raredisease day! Reading some stories on rarediseaseday.org and came across a young girl’s story about dealing with #MPGN, the same rare disease that I have. I wish I could reach out to people, especially younger people who are dealing with this disease, and let them know that you are STRONG. You CAN do this, you WILL get through this, and like this girl realized later on, that you are HELPING others improve their lives in coping with this disease.

I was diagnosed at the age of 10 and know what it’s like to experience weight gain, mood swings, depression, fluid retention, migraines, sicknesses that last for weeks, numerous visits to the hospital, and the list goes on. It’s not exactly the easiest thing to go through when you’re a teenager and you feel like you’re alone in a never ending nightmare. I never really talked about my disease with a lot of people until I was older, and never mentioned the medications I was taking to my friends or people at school maybe because I was embarrassed? Was worried they might look at me like I’m a freak? Who knows but, luckily, I was fortunate to have the support group that I have in my family, and I had wonderful friends that accepted me for who I was/am.

To all the people in school who treated you differently, who name called you, to hell with them. They should be the people that motivate you to keep going in life, they are the people who have absolutely no idea what you have been through, how strong you are, and that you are someone 10x stronger than they are.

To all my rare disease homies out there, keep on fighting because you are a survivor! Be aware that you are rare and never give up hope. Also, remember to never lose your sense of humor, except maybe when you have a transplant, because laughing too much after surgery can sometimes hurt like a b*tch!

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.”

 

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