My Kidney Journey

Since it is National Kidney Month, I thought I would share an abridged version of my “kidney journey” in the hopes that someone may learn from my experience and mistakes. It has been a long road and from what I have found out, it is still continuing.  Things are so much better now after I have been blessed by a transplant.

My journey started about 10 years ago when I first noticed slow, but significant weight gain. I started at about 145 pounds and gained almost 20 pounds. I ignored this early warning sign and attributed it to diet, lack of exercise, and age (I was over 30). Little did I know that it was the beginning of the journey that would turn my life and my husband's upside-down.  I should have gone to the doctor at that time.

Here are more highlights:

2006

• Finally went to the doctor and was diagnosed with high blood pressure. I started on hypertension medication. This was my second warning sign.
• Protein in my urine was also detected. A series of tests were done. Had my first gout attack (ouch!) a few months later. At first I thought I injured my foot, but it did not go away. Eventually, I went to the minor injury clinic and got very lucky, the doctor knew exactly what it was. It was caused by my hypertension medication.
• Was prescribed Alluprinol for gout.
• One day, I felt really tired at work and had difficulty breathing even after an evening of rest. Around midnight, I decided to have my hubby rush me to the ER (I was very scared!) and after hours in the ER, I was eventually diagnosed with alluprinol sensitivity syndrome. I got lucky again; a doctor walked by me and knew exactly what I had.  Otherwise, this may have been the last entry of this post.

2007

• Diagnosed with chronic kidney disease about eight months later. Started on a renal diet and a food log (which I still have today). Signed up for the national transplant list. Went through a series of tests at UC Davis Medical Center.
• My Hubby volunteered to be a living donor. Between the two of us, this was the most we’ve been to a doctor or hospital in our lives. Unfortunately, it did not work out.
• Tried to find alternate cures: homeopathy and acupuncture were our main ones. Accupuncture ended up to be my favorite – It was relaxing. I am not sure if it was effective, but the relaxation ended up lowering my blood pressure (which is what we were addressing).

2008

• Around October, after about a year of alternate cures, I finally had the procedure for my fistula. This was almost last minute. My kidney function was at about 10 percent.
• Started dialysis in December, about a year after diagnosis. My fistula was not mature enough, so my first sessions were fairly difficult. Eventually, I was able to complete one session.
• Started my blog around this time.

2009-2012

• In dialysis. Started at two days a week. Lucky again. Had to stop my weeknight aikido classes Still training in aikido once a week and still in my hula classes.
• At first, I used my dialysis time to read or learn different languages. I wanted to make this time productive. I even considered signing up for online classes.
• As time progressed, I found that I was really tired and just wanted to veg out. I attributed this to the stress of my work and finding more interesting TV shows to watch, but in retrospect, it was perhaps the toll of the continued accumulation of toxins in my body. I still debated whether I really wanted a transplant or just continue on dialysis. Dialysis gave me a much needed downtime, and with a transplant, I may not be able to continue practicing martial arts.
• Mid-2011: Needed to dialyze three times a week. Had to stop hula classes.
• Early in 2012, I finally decided that I really wanted a transplant – it was time. I was not enjoying missing out on aikido and hula. I made this one of my goals for the year.
• Also did my first kidney walk.

2013 

• January: Finally received “the phone call’” in the middle of the morning and a transplant in January 2013; five years after I started dialysis. It was the beginning of a new life.

It has been over a year since my transplant, but I still consider myself in recovery. It was a realization that I made about a few weeks ago. I still need help getting ready for work because my meds make it difficult for me to be alert in the morning. I get bloated in the afternoon, but I think it’s getting better since I can now wear my skinny jeans all day!

Don’t get me wrong – I love my new life! I am just still adjusting.

And I am looking forward to my third kidney walk this year!

Lessons in Paranoia

Image courtesy of Stuart Miles | FreeDigitalPhotos.net

An unintended consequence of my kidney transplant is my extreme protectiveness over my new kidney. In the process of protecting my kidney, I do my best to avoid hits, falls, or any sort of trauma on my right abdominal side.

This is fine when I can control the situation; however, when it is by accident or absent-mindedness; I often (for lack of a better word) freak out. As an example, my car was rear-ended recently, and I was overly concerned that the pressure from my seatbelt might hurt my kidney. There were other similar situations that lead to concern and stress, but they turned out okay.

I have never been like that before. As an example, even before the transplant, I have been slightly afraid of heights, but I learned how to ski and have been up on many summit runs. I have been also afraid of closed spaces, but have gone inside and down a cavern or two (I did get sweaty cold hands walking down … and I wanted to rappel!). Also, I have learned and enjoyed diving (with my hubby) in many places in the world.

Now every bump, nudge, hit – I feel paranoid. Even in dining, I am not as adventurous. If I encounter a new dish or ingredient, I immediately think "is that on my approved list?"

Could it be that it is a side effect of my medication? Possible. Through my (very limited) reading, I learned that taking prednisone or other steroids could cause paranoia. Other posts say that it is extended stays in ICU. However, I am not taking steroids and my hospital stay was only five days, and spent most of the time in my own room. 

It’s still a possibility, but unlikely.

I also think it is partially because when I was in dialysis, I have been continually warned that when I did get a transplant, I could not get hit around my transplant spot since the new kidney is not protected by my rib cage (The new kidney is placed in the front, near my belly-button). I have heard that repeatedly from the nurses, the charge nurses, and the doctors. Because of this, I was concerned enough that I even considered not getting a transplant and just remain on dialysis. If one is an active person, like me, how can one avoid not getting hit? I can not ski, windsurf, and do martial arts? 

I am trying to remedy that by adding activities one by one. I am back in aikido and we just recently went on a ski trip (and hopefully, going on a second one). Sadly, I do not think windsurfing is a possibility anymore: too many opportunities for falls. One time, admittedly, I was going fast on my board and fell... Boy, that water felt like concrete.

Anyway, I digress... again.

As I am writing this, I am realizing that it is perhaps also from my fear of my disappointing anyone. I have always wanted to exceed everyone’s (including mine) expectations, perhaps sometimes to my detriment. I have been raised to work very hard and always be the best. As a result, I have always worked long hours and played my best – really burning the candle at both ends. Losing this kidney would be a huge disappointment to me, my husband, the care managers, and to my family.

I do not know.

I really do need to figure out how to get over this. I cannot constantly live in fear. As I've said, I want to live my life to the fullest, and living constantly paranoid would not allow me to do that.

Admittedly, writing this post was a good exercise in identifying possible causes and probably a good first step to combat it. Continuing to be mindful and careful, taking things slow, and perhaps going back to basics until I am comfortable with my new situation should also help.

If you have any suggestions, please let me know. I would really appreciate it!