Side Effects

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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

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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!

Snow Day

For President’s Day Weekend, we planned to do a one-day ski trip to Lake Tahoe. We had a much-needed storm the weekend prior, and another one was forthcoming.

It was the perfect time. It was our first time back skiing in two years. Two years ago, the snow did not come and my Hubby had a damaged knee (from skiing down some advanced runs at Kirkwood), and last year, well - we all know what happened then (I had a kidney transplant).

I think I was a bit more anxious for this trip; not only because it has been awhile, but primarily, because I really had to be careful. I have to take care of my kidney while skiing; so, I have to be even more mindful of what is around me and the snow conditions; With my new kidney, I felt like one of the Slope Style skiers in the Winter Olympics at Sochi, Swedish skier Henrik Harlaut. He was inspired by the movie “Cool Runnings” and carried a lucky egg with him in his event. Instead of an egg, I have a very lucky kidney. I cannot have it break. (In case you missed it, we speculated that Henrik broke his egg after a nasty spill). I cannot have hard falls – especially on my right side.

When I am practicing aikido. I can more or less control what I do. However, I cannot control the people around me and I have to be 10 times more mindful when doing partner practice. While skiing and I have to be 100 times more aware. Also, I have to say goodbye to skiing fast. When I go fast, I have less time to react when something wrong happens. I remember that my skis are fast. The first time I used them, I could not believe how fast they wanted to go, and I had to accept and get used to the speed. Now, I have to do the opposite, and figure out how to control my speed.  On the slopes, Hubby and I started slow.  It was a great day though with blue skies and the slopes were still in great shape – groomed packed powder.

It felt good to be in the mountains and be outdoors. As we did our first run, the snow really felt good under my skis. I had good control of my skis, took easy, slow turns, and skied down the slope. It did not feel like I missed two years. Although we agreed to only do easy green runs, we stretched ourselves and tried a blue intermediate run before lunch. Most of the ski runs at Alpine Meadows are really advanced, i.e., even the blue runs are difficult, so, I opted to try an easy blue! I just took extra care and was able to complete my run – and another!

In fact, the trail conditions in the morning were so good (and the slopes were not crowded) that, I even put on the gas, and a few times when the slopes were nearly empty. It really felt good to be back on the mountains and ski! Being outdoors and feeling the fresh air felt great, and it reminded me why I love skiing. It gives me the opportunity to commune with the mountains and nature at its winter best and, also have fun at the same time. This ski trip made all the sacrifices of the past year worth it.

AWESOME DAY! SO STOKED!

To My Valentine

I would not have survived this past year after my transplant – no...  the past six years, without my husband. My husband has been at my side since my diagnosis. Not only did the diagnosis of End-Stage Renal Disease change my life, it also changed his. He nearly fell of the chair when my nephrologist said that I was at Stage 4 CKD and so soon. We had plans that needed to be revisited: we were going to travel, get advanced scuba diving certifications, and perhaps also pursue our PhD’s. After that diagnosis, a number of things changed and our dreams were shattered. 

During my time on dialysis, he was my biggest supporter. In that first year, he accompanied me to every dialysis visit. The subsequent years, we felt that it was better to have him at home, make dinner and take care of things around the house, so all I needed to do was come home and rest, which was very much needed… even up to now, whether I like it or not.

This past year after transplant was overwhelming for the two of us. For me, it has focusing on recovery and adjusting to my new life. For my husband, it has been focusing on taking care of me, the household, and the kitty cat. He is the one behind the scenes: taking care of all the paperwork from the hospital(s), Medicare, and our personal insurance. This was no joke. He does most of the housework: although I try to pitch in at the cooking and some tidying up.

During this time, he had some of his own health and physical challenges too. I only realize now that it was perhaps partly, if not mostly due to the stress of going through the last six years.

This being Valentine’s Weekend, I dedicate this post to my Hubby who is my best friend, my partner-in-life, and my forever Valentine. The last six years, we had mainly taken care of ourselves and focused internally.

Hopefully, with this new chance in life, we can still pursue our dreams – new and old.  I love you, Hubby. Me and Meow are thankful you are in our lives.

Happy Valentine’s Day!  

One Year Later

January has always been a special month for me. It is the start of a new year and has always symbolizes new beginnings. Last year, it became extra-special since it was also the month when I had my kidney transplant. I cannot believe that it has been a year already.

I have been looking through my posts after the transplant and realized that I have come a long way. At that time, I could not walk without pain medication. Most of my days were spent sleeping. There were days when I would take four tablets of really strong pain meds. Now, I am walking, going to aikido class regularly, and dancing hula. I am even considering going back to the pool to prepare for our upcoming vacation (because it will hopefully be in somewhere tropical). The only time I take pain medication is when I overdo some of these activities.

It's not that everything is back to normal. I do miss some things that I can no longer enjoy because of my revised diet. I’ve always thought that I would never be pregnant, but now I am eating as if I were a pregnant lady – avoiding bacteria and raw food. At least, I can have some caffeine and wine.

I also still experience some sleepiness in the afternoon, probably due to one of my medications – most likely the blood pressure pills or even the immunosuppresants. But I still think I am very lucky: some transplant recipients experience numerous side effects to their new medications. Mine can be fixed with a latte or some chai.

We also had some scares along the way.  I have been hit twice accidentally in my kidney spot and recently got into a car accident. In each of those, I got very shaken up and felt extremely paranoid – sometimes paranoid to the point that I would prefer to stay home and be safe.  After some contemplation and introspection, these incidents did help me reset and give me new perspective. I do need to be even more careful and mindful.

I am really appreciative of those in my support system without whom I would not be able to make it through this year. The nurses, the doctors, and my friends – close and far away have made my recovery easier to manage. Most importantly, I am very thankful for my husband who has been by my side every day. Oh, let’s not forget my little angel – Meow, who also has been giving me emotional support and company.

This past year has been interesting, adjusting to my new situation and routine. I do intend to experience life to the fullest and not to be afraid of new adventures, as long as I continue to be mindful and careful. 

After all, isn’t that the point of being given a new chance in life?