Got pills?

I refilled my medications this week, and this is what I received. Although this is three months worth, it is somewhat daunting to see this in one photograph. I used to be "Ms. Vitamins Only", but now I take so many pills. One time when I was filling one of my weekly containers, Hubby thought that those were a day's worth; it was actually for a meal. Sometimes I feel that these things actually are making me sick!

I have containers that have my week's worth of meds. If I did not have these containers, I would forget to take my meds. The containers are color-coded, so I will not get confused: green for breakfast, blue for lunch, and purple for dinner. Each one has 3 phosphate binders, 2 fish oil. Breakfast has the added bonus of the blood-pressure pills. When gout comes, like this past week, I load up on colcichine and pain-relievers. Colcichine is known to give you diarrhea...fun!

I read that when I get a kidney transplant, the pill count grows... looking forward to that!

Distractions

It has been a while since my last post. Happy to report that dialysis is going well, except for some severe cramps the last few sessions. We've adjusted my dry weight, so hopefully that will resolve those painful cramps!

Work has also served as a great distraction: been out-of-town twice, had late night deployments, and deadlines, deadlines, deadlines. I guess that is a good thing... keeps me off the streets and not thinking of "the doctors".

The latest boredom-buster that I have is the Harry Potter series. Every dialysis session is now a magical trip to Hogwarts. Gives me something to look forward to. Wish my doctor was more like Dumbeldore (Guess I should be thankful that he is not Voldemort).

Accio Potter 7!

Gout free for two weeks

I'm excited to report that I have been gout-free for almost two weeks (I hope this post won't jinx me). I've been watching my diet closely and I think that helped a lot -- not too much sugar, no gout-causing foods, and not too much sodium.

Hope this keeps up.

Almost Perfect

Hubby and I spent our 8th anniversary last Wednesday in Monterey, California. We drove down early in the morning: grabbed a cream cheese/lox bagel on the drive down; had lunch at Schooner's, our favorite place in Monterey; spent a couple of hours at the aquarium to watch the graceful seahorses; checked in to our beautiful suite (almost the same size as our condominium); and finally, enjoyed a great dinner at Roy's in Pebble Beach. We were treated like royalty at Roy's: greeted with shell leis and a welcome photograph; had the best window seat in the house; and of course, enjoyed a fabulous meal, complete with wine and sorbets. I was a fan of Roy's before this event -- now I am a BIG fan!

The next day, we spent the morning whale watching. It was our first time whale watching, and it turned out to be an amazing day! We saw a mom, baby, and "nanny" humpback whales - breaching, fluking, flapping, and spouting. It was just awesome. The more experienced passengers said that this was such an extraordinary whale watching day -- we were lucky to have witnessed such a wonderful sight. We also saw hundreds and hundreds or Risso's dolphins on the way back. What a sight!!!

It was an amazing three-days! Would have been perfect, if I did not have gout... but still amazing! I have no complaints.

The Perfect Storm

Not sure if it was the three days of aikido training, being that time of the month, maybe a bad dialysis session, or the macaroni salad and lamb that I had for lunch, but I had probably the worst gout attack of my life this week.

It started at about 4:00 p.m. on Monday, right before dialysis, in the middle of the day. That made my dialysis quite uncomfortable. I was chilled and near cramping through the session.

The next day, I could barely walk. Being me (ahem), I attempted to work from home. My usual spot was quite uncomfortable, so I headed for the couch by mid-morning. I was miserable the rest of the day... (but still working to keep sane!). I did not have any appetite, but I knew that I had to eat to keep the colcichine down. For the first time in my life, I took acetaminophen with codeine. Boy, that knocked me down, and Hubby (by association) and I FINALLY had a good night sleep.

Wednesday was slightly better. I still could not walk forward, but I could do my version of the moonwalk (sliding backwards). Come afternoon, I could walk like a penguin, bobbling from left to right. Hubby said I looked cute.

The pain subsides as the days pass, but the swelling is another story. As I write this, my foot is about the size of a basketball (maybe half), in honor of the NBA Finals. No dancing for me tonight.

Through all this, Hubby, even with his mending broken ribs, continues to accompany me to my dialysis sessions and wait on me while I am immobilized with gout. I guess I am lucky to have him.

Transitions...

May was a tough month for us. It did not start out that way, but it became more challenging as the month went on.

As it turns out, we decided to switch dialysis centers last month. We had an ongoing care issue with my assigned technician in Dialysis Center A. Early on in the month, an incident happened that made me very mad. I was cramping and in so much pain, and instead of helping me, my technician and the nurse were chatting and commenting on my snacks. This was not the first time that something like this happened. I got angry, and demanded that I be taken off the machine. I have not been back there again.

After a face-to-face discussion with the area manager with Dialysis Center A and the director of Dialysis Center B (courtesy of Hubby) and a lot of "make-up" dialysis sessions (usually on Tuesday/Thursday/Saturday during my work hours), we are finally on a regular schedule with Dialysis Center B. The center is not as pristine as the other one and about 10 minutes further, but the staff seems to be more on top of things and more attentive. It is also near an Asian market (pork buns -- yippee!!!) and the dojo!

So far, things are going well, and I have not cramped since I started there. The only downside is that they are not used to locating my veins yet, and I am back down to size 17 needles. I am hoping that even with that I can keep to my twice a week schedule.

Mein Fuß ist geschwollen

... Es tut mir weh.

I had another gout attack this Tuesday, and this was the first thing that I thought of after seeing my red foot. The phrase roughly translates to "My foot is swollen. It hurts." I think German language is finally seeping into my subconscious; this after listening to the Conversational German tapes in the car (over and over again - and this is my second pass) and reading the text while in the center. It's my way of making my commute time and needle time semi-productive. I listened to these tapes about a year ago when I started this long commute, and this is my second time listening to it. At least now, I have two sentences.

Incidentally, the first sentence is: Was ist los, meine Liebchen? ("What is the matter, my sweetheart?"). I say that to the cat a lot. Her normal answer is "Meow" which I think is not in German.

For now, I think I am done with these two tapes. I am thinking of learning some Russian next or reviewing some French (although I *really* should review my Hawaiian; I need that more). Look forward to some blogs starting in Russian.

Trimming the roses

I spent sometime this Sunday morning trimming our rose bushes. It is great to get up and do some chores around the house without pain. Funny, as it sounds, I miss doing the little things and almost forgot how to do them.

As I was trimming our beloved plants, I realized that our roses, one rose bush in particular – the Double Delight, seems to have paralleled my life the last two years. The rose bushes have been unkempt. It has a number of dried wood and leaves that needed to be trimmed and faded blossoms that need to be cut back. As I cut the dead branches and plucked the yellow leaves, I realize this is exactly like my situation the last two years: a number of health-related problems that needed (and still need) to be resolved. As time goes by and as the treatments and healing continues, my dead leaves are plucked away, and things become clearer – allowing things to grow, just like what I am doing to the roses. The roses have a bit more room to breathe and enjoy the sun now, but there is still a lot of work to be done. The bigger dried branches need to be trimmed, and with my compromised right arm, I will need hubby’s help for that… just like my health situation.

The roses have me and Hubby. I have Hubby. I hope Hubby realizes that he has me, the roses, and the cat to take care of him.

Happy Easter... Happy Renewal

Hubby and I hope everyone enjoyed their Easter weekend. Ours was very nice, including Hubby putting together my very first Easter egg hunt. He had six eggs with corresponding clues -- two of which were rather tricky. I worked through the clues and found them all. The Easter egg hunt was a lot of fun!


We also had brunch at the TempleBar and Grill in Berkeley. This is an institution in the Hawaiian community of the Bay Area, and it was my first time there. TempleBar is very island-style: cozy and laid-back. Uncle Kem, the owner and famous ukulele musician and instructor was the featured entertainment. He even stopped by our table to say hello and asked if I danced hula. Long story short, I unexpectedly danced to some of my group's standard songs to the Royal Hawaiian Serenaders' live music. I think everyone enjoyed.


For more happy thoughts, my dialysis treatments continue to improve. My kT/V (the measure of adequacy of dialysis and remaining kidney function) has significantly improved from 2.33 to 3.56 in one month! This is really great news! I am hoping that this will lead to my getting reduced session time for my treatments!

(Almost) Back To Normal

I feel that things are almost back to "normal". I felt I had more energy this week and actually was up and about and doing things around the house. I did not realize how much I miss that. It seems that it has been years (actually, it's only about a year and a half) that all I've done is come home from work and crash. Being up-and-about is a good feeling. With my new dialysis schedule, I was also able to go to aikido on Wednesdays as well. It feels good to be back on a twice a week schedule.

The biggest challenge to normality are the weekend gout attacks -- I had another one this week, but luckily it was less painful than the others. Nonetheless, it still prevented me from running my Saturday errands and had spent the day on the couch resting my swollen right foot. Life will be good when the gout attacks go away.

We live in interesting times...(written by Hubby)

It has been "interesting" for us here lately.

On the one hand, Sweetie had another serious case of gout, followed by the three-days of the flu, followed by "that time of the month." She also had to dialyze in the middle of all of this. In a word, "challenging".

On the other hand, Sweetie's dialyzing, although sometimes painful and there are complications, seems to be working. We were informed last week that she can go twice per week, rather than stay at three times. This is very very good news - quite heartening.

We also enjoyed a couple of days in Las Vegas this week: me for a trade show and Sweetie for some "fun-and-games." A great dinner was shared at Emeril's ('bam!') and yes, some shopping. The only bummer, the Star Trek Show is no longer at the Hilton. We were both looking forward to being assimilated.

And too, we also had a great birthday weekend -- NO GOUT THIS WEEKEND! We celebrated by our enjoying a day of skiing at one of our favorite ski resorts. We were there at 9 am and had four runs before 10! Sweetie even risked having a snuggler (hot chocolate and peppermint schnapps with whipped cream - the adult peppermint patty).

Sweetie even played 'Happy Birthday' for me on her ukulele!

I guess, all for now - have a good attitude and please take care!

The Uglier

This weekend was quite an adventure.

It started out with a relatively decent dialysis session. I only gained a kilo (about 2.2 pounds). I was keeping a track of fluids that I've been taking, and that kept my weight gain in check. I thought that would be better for me in the long run, but I may be mistaken...

The session went fairly smooth until about the end. The machine was beeping every 5-10 minutes. In the end, Jen and I decided to cut my time by 10 minutes since the machine would not run properly; it was just acting up.

Saturday morning... I woke up with severe gout pain on both feet. I can barely walk and stayed in bed most of the morning (Sadly, I also missed my aikido class). The pain lasted the entire day, never subsiding, inspite of the colcichine and tylenol that I've been popping. It was horrible -- I even missed a surprise birthday party that I was looking forward to attend. It was quite sad.

Well, today I am happy to say that all is well. The colcichine has taken effect, and I can now walk. In retrospect, I think the only thing that varied was my restricting my fluid intake. I think its good for most dialysis patients, but not for me. Everyone is different.

I also had a fairly good session today, no beeps and I am definitely keeping hydrated.

The Good, The Bad, and The Ugly

It has been almost a month since I've last posted, and a lot of things have happened. Here are the highlights of the last few weeks.

The good: We enjoyed a wonderful Valentine's Weekend. Hubby gave me flowers and a giant greeting card (it must have been 2 by 3 feet). We also enjoyed a very nice evening dining out at our favorite local sushi place. It was great!

We're also planning a March ski trip sometime in the next couple of weeks to our favorite resort.

The bad: A recent dialysis session last week started out good but turned bad - out of nowhere, my blood pressure shot up to 192/114 with a pulse of 40 -- obviously, very dangerous. Hubby was not very happy with the staff and their attentiveness, and in his own way, rather said so!

We are still working out how to approach the staff and/or our case manager on how to make things better. It is a dilemma -- I need to be comfortable when I am treated there and vice versa. It's a puzzle that we are working through; we don't want to chastise anyone, but my health is the most important thing (ask Hubby!).

The ugly: It's about that time of the month to do bills and my monthly stay-at-home lab test (I really need to stay at home -- ask me by e-mail about this if you are curious). Add to that: our trying to figure out annual tax preparation b%*)#@! I do not think I need to say any more.

Getting some fresh air

I took a walk to today in my old jogging route -- to the fountain and back. I thought that the fresh air would cheer me up. I was tired after 35 minutes, but it did feel good to be outside and catch some sun. The "cheering up" part still needs work... hopefully, we are getting there.

Just when things seem better, things go worse

Yeap - just like what the title says. Don't want to elaborate any further, I just wish the dark clouds in my life start to go away.

Wet inserts

It's that "time of the month," and I need to dialyze. This is not a happy Wednesday.

I am actually very tired from work and the drive home from Pleasanton to Walnut Creek through the 680 traffic maze. Now, I have to face the needles. I am not looking forward to this.

It took four attempts to get my veins (luckily, just one attempt for the artery). The venous needle hit a blood clot on the first attempt. The next two could not get sufficient blood flow. We were about to give up when someone suggested a "wet insert". Although that sounds rather erotic, believe me... it's not erotic at all! It just means that saline is added when they insert those big needles in you. It was rather uneasy especially when you are listening to three technicians talking their way through puncturing your skin with a wet fat needle. It is like getting the blow-by-blow to surgery, not a very comfortable feeling. At least, that puncture was successful, and they were able to get a flow.

The next two and a half hours were somewhat uneventful. I noticed that my temp was dropping low, but everything seemed normal.

Until the needles were pulled...

Jen had to stop the eight minutes machines early since I was starting to cramp. When she started to dismantle the tubes, she found that I almost clotted the machine with my thick blood. The blood from the venous needle is almost as thick as honey!

On the other hand, the arterial side was spewing blood all over. I made a big mess and felt really bad for the clean-up needed. I needed Hubby's help to put enough pressure on it to make it stop, even then it took three gauze! Quite traumatic!

Not looking forward to Friday. Maybe I should come back after "that time of the month" is over. Things are usually easier then.

Fridays with Dr. M

I visited my nephrologist this afternoon. Both of us were pretty much prepared for each other. Hubby and I have our list of questions. He was ready to say "No, you cannot reduce your time" and "No, you cannot dialyze for only two days".


Overall, it was a pleasant experience -- almost bordering on fun. We have known each other for almost two years and know each others limits. Our first visits with him were somewhat traumatic (to the point that I dubbed him "Dr. Doom" -- and that is being nice). Things are now better.


We went through the questions, one by one. Overall, he had a satisfactory answer, but as always not enough for our inquiring science-oriented minds. I was somewhat disappointed that he does not have a definite answer on what is causing my gout (but he did have a theory) and that I need better numbers to reduce the number of days on the machine. At least, I know what to aim for... Kt/V of 2.3. Then I can reduce my days from 3 to 2!

Walking is underrated

It is so great to finally walk with (almost) no pain.

I spent Wednesday evening in San Francisco (yes, I skipped my session). We had a work event and had to suffer through dinner and drinks with my co-workers... oh, such agony. Sharing calamari, shrimp, Pinot Noirs, and profiteroles is so much work.

It is also wonderful to spend time in the fresh air and almost feel normal. Putting one foot in front of the other, while looking through the shops and sights at the Ferry Building and the Embarcadero Center. I miss that place.

I am so glad that I can walk to enjoy it.

Happy Birthday!

Today's my birthday, and I had a surprise birthday gift -- another gout attack. It hit early in the morning, and my left foot was in tremendous pain. Spent most of the day on the couch, feeling disappointed that I couldn't enjoy a beautiful sunny day.

I am very lucky that Hubby tried to cheer me up -- a muffin with a birthday candle, home-cooked lunch, and waited on me all day. I am very thankful he is here, but also sad that he has to endure my pain.

Goodbye, Stash

All is quiet and sad at the home-front...

Last Thursday, the neighborhood stray cat, Mustachio (or "Stash" for short) had to be euthanized. Hubby found her in the sidewalk, can barely walk, with one bloody eye. He took her to the vet, and found that Stash was severely dehydrated and weighing only four pounds. The vet said that she probably had kidney disease, and is suffering tremendously. No choice, but to let her go.

We've been hit very hard by this event, especially Hubby. We've grown close to Stash in the last three years (and, I suppose, her to us). We gave her food, water, and attention... much like what we share with our house cat. I feel that she is part of our extended family, though she never lets us get near her.

Stash, we will miss you.

Gout, chills, cramps, and blood -- oh my!

It feels so good to wake up and be able to stand up. You see, I've had a very painful gout attack this week, and I have had significant foot pain all week. I've been home-bound for about 2 days, had difficulty walking, sometimes needing a cane. I felt very disabled. Thank goodness for Colcichine, Tylenol and telecommuting. If not for that, I would be missing work.

I thought you are not supposed to have gout attacks when you dialyze... what is up with that?

I think the gout affected my dialysis last Monday. I was not feeling well. I can barely walk to the center. I had chills through the session -- all three hours of it. At the end of my session, I had severe cramps on both legs. My legs were so painful, that it took three technicians/nurses to ease the pain. And after that, I was so weak to clamp down my arm that blood squirted all over the place. Hubby was not too happy.

Fortunately, Wednesday was much more smoother. Everything went like clockwork.

Yesterday, the gout pain finally started to subside. I woke up, stood up, and felt very relieved... I can walk again. I was even able to go to hula class! I just have to keep healthy so I can enjoy aikido tomorrow and a possible kayak adventure on Sunday.

It's my birthday weekend!

Reflection

My dialysis sessions have gone rather smoothly the last couple of times, so I thought I would take advantage of this quiet time to reflect on good things that happened the last month. This is the perfect time for it – since I have to stay fairly close to home to do my monthly “pee-test” so my kidney functions can be measured.

• I am dialyzing at a consistent schedule. Hopefully that will improve my kidney functions.


• I can now have an occasional chai latte with soy.


• I can now have an occasional hot chocolate without worrying about gout attacks (next is to try spanakopita – spinach, feta, and phyllo dough).


• I can have meat, lamb, or fried chicken without worrying about how much protein I am having.


• I can enjoy an occasional glass of wine. I usually save it for a really good (expensive) wine, which is the point, correct?


• I am still able to crochet and knit. I made several leis for friends for this Holiday season.


• I now have time for reading. I gave that up a year ago when I was assigned to my project in Pleasanton.


• I can still work – full-time. I enjoy my work, and although it does not define me, it is a major part of my being. As Kahlil Gibran once said, “work is love made visible”.


• I have been able to continue my ukulele lessons. Music has always been part of my life, even though I am not good at it. It is good to be able to play a musical instrument again. I think I am actually improving.


• I am still able to ski – we skied two days over Christmas. I could have skied more if we had time! Love to ski.


• I have been able to continue with my hula lessons, in spite of my compromised schedule.


• I performed in my first hula show in years!


• I still have time for Aikido and pursue my black-belt. It will be a slower and more difficult journey, but isn’t the journey the reward.


• Finally, Hubby and I have been spending more time together. Hubby has been very supportive and understanding through this last month. He has come to every dialysis session and helps me out once I am hooked up. He provides me and others “entertainment” while we are there. He has helped me out with all my activities – including (but not limited to):
  
  
  
  
  • Taking care of many things around the house – cooking, cleaning, dishes, laundry, garbage, and her royal highness, the cat.
  
  
  • Continuing to be involved with the doctors at the hospital and the staff at the dialysis center.
  
  
  • Making my red arm bandage for my aikido class (to prevent folks from grabbing me on my right arm).
  
  
  • Carrying the skis for me to and from the ski resort.
  
  
  • Making sure that I get on the lift with my “good” side, for the ride up.
  
  
  • Accompanying me to the center to make sure I have a ride afterwards.
  
  

There are plenty of things to be grateful and happy for, even if times are now quite challenging. It is so easy to focus on the concern and the pain when times are hard, that one often neglects to notice the good things. Reflection is a good thing.

Peace.