Kidney Walk 2014

The San Francisco Kidney Walk was last weekend. My Hubby and I attended and we had a great time.

It was also my first time “live tweeting” an event. It was a lot of fun. It sort of brought out my inner Lois Lane. I felt like a journalist or a social media expert – cool.

I posted a lot of pictures on Twitter. But for those who don’t use Twitter, I am featuring a selected few in this post, including some that I did not tweet, so you can participate virtually.

The Kidney Walk "Health Fair" and Mission Zone: Great turnout today. It's also the perfect day in San Francisco for a walk.

The bibs that we picked up for the walk: one for me, one for my Hubby, my hero.

Inspirational speech and performance by Scott MacIntyre, American Idol Finalist. He is legally blind, and at 19 years old, was diagnosed with kidney failure. Thanks to the wife of one of his music teachers, he received a kidney. His story and song "I am Hope" are inspirational. I hope it gives hope to the thousands of people waiting for a kidney.

Our walk starting: The crowd is ready to go. 

Cheerleaders motivating us. In the background, you can see how long the procession is. 

The Walk Back: You can see how far we walked, the Ferry Building clock tower is in the background (about a mile and a half away). We walked about 3 miles.

Almost there: More cheerleaders motivating to the last steps. 

Made it! Finish Line! Here's the obligatory selfie.

Overall, it was a wonderful day and lots of fun. The crowd was energized and ready to walk. This was not a competitive walk. Folks were walking at their own pace and enjoying a beautiful San Francisco day. The goal really was and will continue to be community building, support, and fellowship. 

My husband and I will be doing it again and already making plans for next year's walk and fundraising goals. I hope this post showed the participation, excitement, and joy in the crowd. Hope you will join us in the walk next year and in the fight against kidney disease. 

Why I move: Walking

I recently was named Move It Monday ambassador, so I thought I would do a series on the different ways that I move. Moving is very important to me since it is my opportunity for me to exercise and maintain my health. Since I am training for the Kidney Walk, I will start the series with walking.

Get out and walk

Walking has become one of primary methods of exercise and one of the easiest. I think I said it once or twice "one foot in front of the other." All I need to do is find time, put on my sneakers, and go outside. I probably do this four days a week: most of the time just for a short time, but once a week almost hour and half and walk for 3 miles. That is my maximum so far.

I find that when I walk, my blood pressure drops 5 to 10 points. As we all know by now, maintaining a healthy blood pressure is important to maintaining kidney health. So I make it a point to walk almost every day, even it is just for 20 minutes. I walk slow, so I have recently upped it to 25 minutes to make it more than a mile. I am hoping that someday, I can walk a bit faster.

Walking also clears my head. When I walk, I put problems and issues in my subconscious and enjoy my surroundings. During my walk, I look at the Mt. Diablo and surrounding hills, what flowers are blooming, and what critters are running around. Today, I saw a quail family moving from one hiding place to another – what a treat. You never know what you’ll see.

During the workweek, I try to walk around lunchtime to reset for the afternoon. It also gives me a much needed boost of energy for the afternoon.

Walking also improves my endurance. I am finding that I can walk a bit faster now and still trying to shave some time. I did try jogging for a bit to increase the intensity, but I am finding my knees are no longer up for that. So, it is back to walking for me... for now.

Although I try to walk 20-30 minutes in one shot, sometimes it is not possible because of my workday – especially when I go in the office. At work, I try to take the stairs and take short breaks in between things. For a while I was even wearing a pedometer to make sure I got close to about 10,000 steps.

I did not walk before the transplant, but my recovery routine made it a daily habit. I remember just starting with laps around the hospital section I was in, then it was around our complex, and now to fountain and back (that’s my three-mile route).  

So, get outside and walk. You’ll love it!

If you enjoyed this article, you may enjoy the others from my "Why I move" series:

• On Gym Time
• On Aikido
• On Hula

Side Effects

Image courtesy of Grant Cochrane/
FreeDigitalPhotos.net

I guess I spoke too soon about not having any side effects from my medications.

I have been seeing signs of side effects. My biggest concern is I am now extremely sensitive to salt. Every time we dine out, I gain at least two pounds. Before transplant, this did not happen to me (or so I would like to think). I could eat out at a restaurant or at the cafeteria, and not worry about bloating. These days, even at the end of the day, I can feel that I am retaining water. It can get so uncomfortable that I often have to wear loose pants (I cannot wait until it is warm enough that I can wear a skirt). If we get away for the weekend, forget it – It’s an automatic five pound swing.

I am not too concerned about the clothes. I like loose-fitting clothing anyways (except for the occasional skinny jeans). My primary concern is that the constant weight fluctuations cannot possibly be healthy for me.

I am also very tired in the morning and get really hit with a huge mid-afternoon slump. I used to think that this was not a big deal since a dose of caffeine usually puts me back on track. However, lately, I have been getting so tired that I cannot get up in the morning. Back when I was on dialysis, I felt that had more energy in the morning than now.

Fortunately, it can be fixed by a cup of coffee or chai. My lethargy when I was dialysis can last the entire day.

After my recent visit with my transplant nephrologist, I think we figured out part of the reason. One of my blood pressure medications – Minoxidil – is sensitive to sodium and therefore causing water-retention.  It may also be the culprit for my morning lethargy, but neither the doctor nor the nurse mentioned that the medication is causing that. Minoxidil does cause hair to grow in places where you do not want it (It is commonly known as Rogaine).

Unfortunately, now that it is a year after my transplant, my blood pressure medication is managed by my primary nephrologist. I now have three doctors: the transplant nephrologist, my primary nephrologist, and my primary care doctor. It really does make managing my medication a bit complicated. Don’t get me wrong, I am grateful for having so many doctors, each with their own specialty, managing my care.

I did e-mail my primary nephrologist to ask for his opinion – possibly lowering the dosage. However, all he did was prescribe a Lasix, a potent diuretic which I am a bit hesitant in taking. I had a bad experience with diuretics, and I really do not want to take one more pill. Perhaps we can present our case better when we meet him in person.

So in the meantime, I am taking some steps to minimize the side effects. We minimize dining out to reduce our sodium exposure. It still takes me 2-3 days to remove the weight that I gain when we eat out.

I am also allowing myself time to get up: I gradually sit up until my body is fully awake. So far, it seems to be working.

I guess we wait… until my next doctor visit.

What do you all think? Let me know; I am very interested in your input and feedback.

TAX DAY!!!

Finally taxes are done!  We know it’s almost last minute, but we had a good excuse. Well, at least we did this year, but we also procrastinated, which is probably a topic for another day (or not).

Our primary challenge this year is that I was on disability last year. We did not know how to handle the proceeds from that period. Although I used TurboTax, I usually just let things import from last year, enter my W2 and other income information (like interest and dividents) and let TurboTax do its thing. We have a relatively simple return, since we did not have enough medical expenses (Thank you Medicare and additional insurance) or deductions to itemize. Also, we did not get a tax-related statement from EDD. Not sure what to do. 

I googled what is usually done and ran into a Form 1099-G for disability payments. We did not get one, so we (more I) were on the verge of panicking. We need to file in three weeks, and we cannot wait for the form. Fortunately, the calm one in our household (Hubby) said that if needed, we can simply file for an extension. I’m glad he helped me think through this.

We called EDD and listened to the long message (twice!) The first time the telephone query system said that there is no 1099-G in record for me. Now, we are confused.

We called my HR department and they said I should have a claim. The lady was helpful and gave me my claim number, both for our company and EDD. 

We called EDD again (and listened to the long message one more time) and finally talked to a live person. He told us that the proceeds during my disability is not taxable, since these are insurance payments. My husband and I were elated. No forms to wait for – at least for California!

Because work has been somewhat hectic, I decided to wait for last weekend to finish our taxes. Should not be too bad, right? We’re almost done; all we need to do is print.

However, upon detailed review – I saw that the state return is off – way off. OMG! What could be wrong? I felt like an accountant going through the forms in detail (which is okay since I am OCD that way). After a thorough review, I realized that TurboTax defaulted to my taking the whole year off.

I did both the Federal and State interview and found where I could plug in the amount. Fortunately, we saved all of the statements from EDD and I calculated the total amount. We checked the form for errors, printed, and DONE! Hubby mailed it off the next day.

Thank God I caught the discrepancy.  Lessons learned in this exercise: disability disbursements are not taxable in the state of CA (since these are deemed as insurance payments) and when there is something new in your taxes/life, do the TurboTax interview – it will save you considerable stress. I am hoping that someday somewhere (in CA), someone can benefit from my stress.

And of course, don’t procrastinate… but that is a subject for another post.

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!