Flashbacks

Last week, one of my friends at work asked me a question about dialysis. Her husband, unfortunately, has to start dialysis soon, and they were hoping that they could postpone starting dialysis for another month. Their reason for postponing was not frivolous (and personal that is why I am not sharing it in this post), so I understood why they are thinking of delaying the inevitable. 

We had a brief, but good chat about dialysis, and I was glad to share my experience. It looks like I answered her question and gave her some good tips. At the end, she said her husband is trying his best to maintain the little kidney function that he has.

I mentioned to her that I was in a similar position when I was diagnosed and had to watch my diet closely. Although I did not share this with her, I remembered that my husband and I tried to keep my kidney function up, primarily through diet. I did have to watch my diet like a hawk to keep it from falling completely. I ate very little protein per day: only four ounces, if I remember correctly. I had to give up my favorite soy chai lattes and had to be very creative with meals. Most days, I was having no protein for breakfast, two ounces for lunch and two ounces for dinner, or some combination of thereof.  My meals were mostly carbs and vegetables. It was not the good, high fiber carbs either; it was white bread, white rice, white flour – ugh! No more brown rice, Wheaties, or multigrain muffins. I was lucky to be Asian and having white rice as a staple in our diet. My favorite meal was usually breakfast when I can have muffins! I figured since I am watching everything, I can have some sugar twice a week. Occasionally, I can have an egg for breakfast since that was considered one ounce.

I was fortunate back then; I was still peeing so I did not have any fluid restrictions. I think that was one of my treats. Since I was suffering from gout, I was drinking black cherry juice. I would have that with some of my meals, but dilute it with water and ice (black cherry juice was a bit too sweet for me).  I even considered making a faux-sangria with it by adding apples and oranges (did not attempt to do so though – not the same without wine). Speaking of sangria, I had to limit my alcohol intake. I probably just limited it to one glass of wine (or sangria) per week, if any. Yes, I became an inexpensive date (not cheap, though).

My diet back then was very restrictive. I kept (and am still keeping) a food diary so I can keep track of my intake and things that trigger my gout attacks. I can imagine that this would be trying to anyone especially if you have a “meat and potatoes diet”. I was able to stay out of dialysis for a year. During this period, my husband and I were very thankful for every .01 increase in my GFR (Glomerular filtration rate - a measure of how well the kidneys are working).

I hope all goes well with my friend and her husband. They have a lovely family and their young kids would need Dad around for a long time. I wished them well and offered my advice anytime she needs it. Been there and doing my best to give back… and not to be there again.

Transplant Finally!

After 5 years of waiting, I am a proud and happy recipient of a healthy kidney.

The transplant process was very stressful, not only to me, but also my Husband and to a certain extent, our kitty cat. There were a lot of unknowns including the possibility that the transplant would not be successful. Don't get me wrong: kidney transplants have a high success rate, like 95%. Being me, what it I were one of the 5%. 

But I was not! I survived. After 5 hours of surgery - none of which I remember, thanks to the power of anestisia, I was surprised when I woke up groggy in the post-op room. I was barely conscious. I remember seeing one of the unit's doctors, Aida, the post-op nurse, an Asian guy in scrubs, possibly another doctor, and Hubby!

That was only the tip of the iceberg. Recovery period, I think is tougher, mostly because you're conscious this time around and you need to participate. Also, you have to deal with a lot of attachments to your body: you have catheters in to collect your pee (no lie! That is probably the most inconvenient), a catheter to drain fluids around your kidney during surgery, AND an IV in your neck! I feel like a Borg (Star Trek reference).

After surgery, you also have to eat a clear liguid diet. Reason is your body was put to sleep so you need to give your digestive time to wake up.

Once you start producing gas, then you know your digestive system is starting to wake up. By the way, this is no ordinary gas: This is like 100x your normal gas. For women, it's like your menstrual cramps - only 10x worse; your significant other will get 20x the usual retribution.

Once you hear grumblings and you start farting, then you can eat solid food. But what is the use, you do not have much of an appetite anyway, because you hurt all over! I only had four bites of real food every meal; the first three solid meals and that Ceasar salad with 1000 island dressing (what?) didn't look at all appealing. When I did get my appetite back, I was hungry! I think that is the real indication. I almost finished my entire plate.

I think the main reason that you lose appetite and energy is you hurt all over. That was major, major surgery! You had your guts open, your abs cut. It has got to hurt. Part of the recovery program is to walk around the ward: that first day, I could barely get out of bed. My right leg is stiff, my entire right side is sore. I can't even turn over. It's the kind of pain that makes you question why you are doing this.

In observing other patients, I noticed that they are not shy about asking for pain pills. I am not a fan of pain pills, but I think this time, it's an exception. After a day of struggling with movement, I asked the doctors and they adviced to get pain pills. Yes, it worked! I did a total of 18 laps around the ward yesterday (pills and listening to my iPod worked). I just need to be aware and not be dependent on it - now, I can see why some folks do.

I am still here at the hospital, but I think I still have a few days and a few more adventures and misadventures.  Right now my main concern is where I'll be watching the SuperBowl with Hubby.

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. 

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....