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!