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!

"No" to the Proposed Medicare Cuts on Dialysis

My blog post this week is about the proposal by the Centers for Medicare and Medicaid Services (CMS) that would cut Medicare reimbursement for dialysis. I am very concerned about these proposed cuts, and how it would impact my friends at the dialysis center. According to one of the articles that I’ve read, these cuts would reduce the reimbursement rate by 10% to almost $20 per dialysis session. Medicare reimbursement already does not cover the cost of dialysis. At three days a week at about four to five weeks per month, that would be at least an additional expense $240 per month.

If I were still undergoing dialysis treatments, these cuts would probably not make significant difference for me. Thanks to my employer, I have excellent health insurance. Since I had been on dialysis for some four years, I did rely on Medicare to pay for 80% of my dialysis treatments. Since the rest was paid for my insurance, I have had minimal costs per treatment and for that, I feel fortunate. However, I am probably in the minority.

I am thinking of the other patients in the center who completely rely on Medicare to pay for their treatments. For someone with a fixed income or are unemployed, an additional $240 per month would be a significant strain on their budget. People on a fixed income already have a difficult time ‘making ends meet.’

I am thinking specifically of the lady who usually sat across from me. I believe her name is Lupe. She is an older lady, and usually has a hard time when she was having treatments.  She did not speak English; so we rarely had a conversation (I am not that conversant in Spanish either).

Lupe had to stop working because her dialysis treatments were making her very exhausted. For extra money (probably really to make ends meet), she made and sold tamales. Making tamales probably also kept her mind off dialysis and her kidney disease. She would sell tamales in the center, and the technicians loved it. They would order 10 at a time and different flavors (she sells them for $1.50 each). I actually had two of them, and they were absolutely delicious.

I cannot imagine what might happen to Lupe if these cuts are implemented. An additional $240 per month would be hard on someone who is unemployed. This may mean that she has to cut on food or worse, on prescription drugs and even on some dialysis treatments.

And it is just not Lupe, it is also Jerry, who has to continue dialysis because he is considered too old and too ill; the Chinese lady who did not seem to have any family who would take care of her, and my husband’s buddy and fellow Pittsburg Steelers fan, who has to keep on working because he has a family to help take care of. Multiply this number with the number of dialysis centers all over the country and there would be thousands of very good people affected.

Dialysis patients are suffering enough - we need to support them as much as possible. As the petition states, “We urge the Administration and Congress to ensure that Medicare reimbursement for dialysis is sufficient to cover the cost of care.” Please contact your local representative through the National Kidney Foundation's Take Action Network.

It is the humane and compassionate thing to do!

Take your meds!

I recently saw a (web) presentation on medication adherence. According the presenter, about 50% of patients living in developed countries do not follow treatment recommendations. I was very surprised to hear this statistic (So surprised, that I even confirmed it via wikipedia). Fifty percent is a huge number, and I think that taking your meds the way your doctor has prescribed them is critical to improving your health, especially during one’s recovery from surgery.

Bracelet to remind me of my binders

As an example, when I was getting dialysis treatments, the dietician and the charge nurse always reminded me to take my binders to keep my phosphorus levels low. I hated those pills – they were horse pills (See my previous post – Got pills?). I could not count how many times I almost choked on those things. Regardless, I took them with every meal and snack. I was determined to keep my phosphorus low, even if there were times when my phosphorus levels were going the opposite way and I did not think the binders were working.

After my transplant, taking my medication is even more important, specifically the anti-rejection or immunosuppressants. To ensure that I have adequate levels in my blood stream, I need to take my medication every 12 hours, like clockwork. It is very important. I have an alarm in the morning and in the evening as a reminder and a prescription diary to keep track of what I take daily.  The transplant pharmacist once told me that a transplant recipient lost the kidney because that patient kept forgetting to take his/her medication on time. Since I am determined to keep this kidney for a long time, it is very important to me to take my meds at the specified time. 

I have an alarm for meds!

Don’t get me wrong. I do forget my medication sometimes. I can think of more than a handful of times when I forgot to take my blood pressure pills or even my phosphate binders. The key is to make it the exception, not the rule. For blood pressure pills, take them as soon as you remember. Also, make a note on what occasions make you forget to take them (mine is usually when I am in a hurry or distracted) and try to correct it.

In that presentation, I learned that many people never order their prescriptions. Some order them, but never pick up their filled prescriptions from the pharmacy. Other people pick up their medication, but don’t follow their physician’s instructions.  Although I have had a history of researching every medication that has been prescribed to me and sometimes questioning why I take them, I usually work with my physician to get a win-win situation. As an example, I have not been a big fan of taking statins for cholesterol. I’ve read of the side effects, have seen those side effects first-hand, and would prefer an alternative drug. However, I worked with my then primary care physician to lower my cholesterol (specifically triglycerides) without taking statins. We found an alternate drug. Ironically, I am taking statins now for maintenance (I may have a conversation with my transplant nephrologist after a few months).

That presentation inspired me to be more mindful of taking my medication regularly, and I am hoping this post will inspire you to do the same. Do whatever it takes to take them on time and at the correct dosage, whether you need to set an alarm or keep a diary. “Not taking your medicine as directed can also lead to other health problems, especially if you already have asthma, diabetes, or high blood pressure” (From ScriptYourFuture.com). And remember, diabetes and hypertension can lead to kidney disease.

The call

We were woken up at 2 am yesterday morning with a call from UC Davis. It's my kidney! I am the primary candidate for it!

It's the call that we've been waiting for.

Things started to go through my mind: Do I really want a kidney? Where is my "go" bag? What will life after a kidney look like? We can travel again. I can pursue a Ph.D. Can I still practice aikido? On and on... My Hubby and I had trouble going back to sleep. It was exciting and scary at the same time.

UCD was going call in the morning after they had confirmed with my doctors that I am fit for surgery.  I contacted my manager to let her know what is going on and that I would not be coming to work in the morning.  I wanted to use that time to prepare for the surgery and being in the hospital for an extended time. There were things to do: get money, fill out the disability form, take care of Meow, wrap up work.

But no calls came. We waited and waited and still no calls.  I think the process of waiting is more excruciating. You never know when its going to happen. I worked almost half the day and still no calls. I don't even know if I am supposed to eat.

In talking to the charge nurse at my dialysis center, she shared with me that the kidney may still need to be removed. Also, it may still need to travel - it may be across the country.

So we wait...I even went to dialysis, perhaps for the last time. It's somewhat bittersweet thinking that that may be the last time two huge needles will be stuck in my arm.

We both hope that we both can get a good night sleep tonight, and tomorrow brings better news.

Good night and good luck (to me)!

Nurturing

Our orchid, Stripey, is blooming again. I am very happy that it is thriving in spite of losing all of its original blooms. I am looking forward to enjoying its new blossoms in the next few weeks.

Stripey is thriving because of the loving attention that was given by my husband. We originally bought Stripey so that I can take care of it. But as always, I got busy. But Hubby took care of Stripey: watering and feeding it. Now we’re ready to enjoy new blooms again.

Stripey reminds me how my husband has been supportive these last years after my diagnosis. My Hubby has been wonderful. He has taken care of the house, just as he had taken care of Stripey. Since I’ve been diagnosed, he takes care of most of the cooking, the laundry, dishes, garbage, cleaning, and most importantly, our cat, Meow. Most of the time, all I need to do when I get home is sit down, enjoy a meal, and rest. Thanks to him, I’m almost like Stripey: I was down and out, but now I am blooming again and able to help more around the house.

I think I don’t tell my husband often enough how much I appreciate him. I do not think words can express my appreciation enough. 

My novel and Contentpalooza

Now for something constructive....

When I first started dialysis, I wanted to use that time to write a novel. Almost four years and NaNoWriMo's later, not one word has been written. I had one in mind several years ago and still want to write it. I already have the movie in mind - I think I'll have Bradley Cooper in it.

A facebook friend of mine just brought my attention to Contentpalooza. You can have your own goal, but the global intent is to write 30,000 words in 30 days or 30 images (a picture being worth a thousand words): much more manageable than NaNoWriMo's 50K words! My goal is to get started on an essay that I need for my Aikido Nidan test, get started on my novel, oh yes... blog! I guess I have to bring my laptop to dialysis now. That should cut down on eating all of those tictacs. I wolf them down when I am bored.

See you after 30,000 words!

VINDICATION!

I received my latest phosphorus lab results yesterday: 5.3!

No change in diet, no change in food -- just stopping the lotion and my moisturizer.

I hate to say it -- but I told them so!

Back on you nutritionists and nurses who ragged on me about my diet. I know 90% of the time, hyperphosphatemia is due to food; but there is always that 10%. There is a lesson learned here - TRUST YOUR PATIENTS and THINK OUT OF THE BOX. When your patient is getting pretty close to an eating disorder due to phosphorus-phobia and half of her meal is already phosphate-binders, it must be something else. I told you I've been watching my diet and only occasionally indulging in a tasty latte. 10 M&M's, I've found, only has 8 mg of phosphorus, so if I have 12 after a meal - Give me a ---- break!

Aveeno, I love your lotion and your moisturizer. I've been using it for months, and I love how soft my skin feels. However, its really not good for someone who is watching their phosphorus. I guess that soy and oatmeal really goes in your bloodstream. Once I get a transplant, I'll probably go back to using it.

Hallelujah!!! Now to tackle the water retention....

The (continuing) case of high phosphorus syndrome

My phosphorus is still high: 7.7 - in spite of increased binders, modified diet, and now only once a month chai-latte treats. Other than not eat, I am not sure what to do anymore -- I do not know why it is increasing instead of going the other way.

After last night's treatment, I spoke to the dialysis nurse about this. This is a sore subject between us (more on this in another post), but we had a really productive chat.   I've been writing down what I eat and there is very little difference between what I am eating now and what I was eating when my phosphorus is low. In fact, I am more restrictive - paying attention to protein portion sizes, increasing veggies, and limiting fluid control (I am also retaining more fluid).  After a "clean week" where I did not have dairy, took my binders, and watched my diet, my phosphorus should be down - not up -- so it must be something else.  We are both perplexed.

What she did say is that there may be hidden phosphorus in my vitamins, supplements, etc. What has changed: not vitamins, I am very careful of that. I did switch to a new blush and eyeshadow (Hey, you got to be trendy somehow).  Then it hit me: my lotion has oatmeal in it! My facial moisturizer is soy-based. I use it everyday! A cup of oatmeal has 178 mg of phosphorus in it. One cup of soybeans have 284 mg.  Could it be?

She said that the phosphorus could be absorbed by the skin and directly goes into my blood stream. If that is the case, I am thinking no amount of binder can counteract that.

For this week, I'm changing my favorite lotion and moisturizer to something hopefully more phosphorus-friendly. We'll see....

First day of dialysis - take two

OK. Today is a new day. I had to call in sick today since my session starts at 11:00 am. I was not planning on this, but it can be a good day to take PTO since we need to work on a deployment late today anyway... and we have to make this happen.

I consolidated my bag of goodies and headed off to the dialysis center with my husband. I already messed up, because they said they wanted me there at 10:45 and I left at 10:45 -- minor details. Hope this is the only faux pas of the day...

I have arrived and passed all my stuff to my husband -- blankets, bags with heavy magazines, my (tiny) purse, my jacket, and scarf. I changed my outfit of thick sweatshirt from last night to a thinner t-shirt. Hopefully, this will prevent my sleeves from stopping blood flow. I weighed myself and looked for the tech.

The guy looking for my veins is said to be the specialist for "virgin" dialyzees (is that a word?). My baby thin veins are really problematic, and Angel (the technician) is having a hard time. Fortunately, he is an "Angel of Mercy" -- I had some painkillers when he found the two candidates... as he said "You need two to tango". I was hooked up, and now the waiting begins.

Because of the position of my access point, I cannot move my right arm which makes it impossible to knit or crochet. TV at 11:00 am is pretty boring... so I opted for CNN. I was thinking of playing my Hula DVD of Kaunaloa, but decided against it since I cannot rewind the DVD.

The remainder of the time is mostly waiting... two hours and thirty minutes of it. Browsing through Wired, watching CNN, local news.

It looks like it is going a lot smoother today - Thank goodness!

After the treatment, I felt no different -- no dizziness, no energy loss, no drop in blood pressure. I felt that I can drive but my husband did not want me to. The only good thing is losing two pounds! Yeah!

Time for lunch... tomorrow, I bring the laptop!