How do I deal - What am I doing about it?

I got my first blog comment! Thank you dbigsieg! He told me about another PKD study -- Tolvaptan at Otsuka Maryland Research Institute. There is more info here. I left a message. Their voice mail says they'll call me back in one business day. Fingers crossed.

I've looked into other clinical trials and research studies, but had no luck so far. Honestly, I don't know how I missed this study. I'm hopeful. This latest study uses some drug to stop the growth of the cysts. I don't know anything about it, but my doctor did tell me that one of the anti-rejection drugs they use after transplants is being studied right now for it's cyst shrinking possibilities. She also noted that these kinds of drugs have a lot of side effects.

The most frustrating thing about this disease is that there is nearly nothing you can do to stop the progression -- and you often don't even know that your kidneys are getting worse because you can live w/out symptoms entirely. For me the worst part has been the anemia, but I do sometimes have back pain. I am an active person and I need to be able to think on my feet. The anemia slows me down physically and mentally. I find myself struggling to find words sometimes. It's typically worse in the afternoon. The culture in my current institution (I work in higher education) emphasizes afternoon meetings -- late afternoon meetings. Luckly, I am the chair of most of my meetings so I was able to change that practice. However, I still attend 3-5 pm meetings where I struggle to stay alert (or awake on bad days.) Sometimes I cave in and drink a caffeinated drink to get me through. Then I force myself to go to the gym. The traffic in So Cal is legendary so my drive to the gym is usually slow. That makes the sleep so much more appealing that I usually struggle to keep my eyes open in stop-and-go traffic.

My husband gave me my latest bi-weekly Aranesp shot on Saturday. I think he enjoys it.

I'm back on wheatgrass today. This is one of my attempts to do something to slow the progression of this disease. I bought a beautiful wheatgrass juicer. It's a power juicer, but it's totally worth it. I figured it'd be this loud machine, but it's actually very quiet. It will juice more than just wheatgrass, too. I bought the Omega 8005 model. Really, it kicks ass.

This morning I combined my wheatgrass shot with some cantaloup juice. No upset stomach!

This is just one of many efforts toward slowing the progression of my PKD:

1. Keeping fit by going to the gym 3-4 times per week for aerobic and strength training.
2. Being a vegetarian for 15 years. Although PKD was not my initial reason, sticking with it has been and as it turns out, there may be some evidence that a low protein diet is better for PKD kidney health.
3. Controlling my blood pressure (I'm on 2 bp meds now: Norvasc and Diovan.)
4. Staying away from rough and/or bumpy activities that could put stress on my kidneys (no roller coasters, no Baja racing, no tackle football.)
5. Taking yoga once per week to improve flexibility, lower BP, increase circulation and organ health.
6. Drinking wheatgrass. Most of what I have read doesn't indicate that wheatgrass has any direct effect on kidney health, however, if it has a general cleansing effect w/in the body, it could help my body be as healthy as possible. I have read a lot of anecdotal information about the benefits of wheatgrass, but I'm not a scientist so I'm not the best judge of the legitimacy of the medical research. I do know there are studies that indicate it is beneficial to building red blood cell count, but these are animal studies and I don't know the exact circumstances. The bottom line is that at this point, I'll try anything that doesn't harm me.
7. Cutting out caffeine almost entirely (I have 1 cup of coffee that is 2/3 decaf and 1/3 regular.) There is medical evidence that caffeine can cause the cysts to grow larger.
8. Cutting back on alcohol. My doctor tells me that there is no evidence that alcohol has any impact on the speed of the PKD progression. But better safe than sorry. I'm not saying I gave it up though!
9. Being positive. I try to think positively about the disease and to be as happy as I can be. Also, sometimes when I think about it, I imagine being enveloped in while healing light. I'm a strong believer in visualization.
10. Don't drink mineral water. Too many minerals can be hard on the kidneys. I drink only distilled water at home.
    

Geez, exactly 10!

The weekend

I'm so glad it's the weekend. I'm sitting on the couch drinking my 2nd cup of coffee. It's half decaf, of course. Since caffeine is supposed to cause the cysts to get bigger, I have tried to cut back. I have weaned myself off most caffeine. Weekdays I have 1-2 cups of 2/3 decaf coffee and on the weekends, I usually drink 3 cups or so. But yesterday I had a diet coke with my lunch. it's pretty easy to get caffeine free diet at the food court on campus, but I had the combo meal yesterday and it comes w/ a fountain drink. There is no caffeine free diet beverage at the fountain. Honestly, it's surprising how few quick shops, food courts, restaurants and grocery stores have a caffeine free diet option. Re the grocery stores, I mean the cold selections they keep at the front of the store -- you can always buy 12 packs of anything warm. I can usually get a sparkling or flat water, but sometimes I want more flavor and variety. There is a quick shop in Baker, CA, on the way to Vegas, where you can get a diet caffeine free root beer! I can't tell you how stoked I was to see that. They also make a diet orange drink, but they add caffeine. You'd think that quick shops in So Cal would be able to afford a greater selection, but really, it's impossible to find anything that meets my needs other than water.

Tomorow is Bikram. I'm looking fw to it. I didn't go to the gym last night because I met some friends for happy hour instead. I drank 2 pints of beer, too. I haven't had that much beer in quite a while. I'm trying to cut back on drinking, mostly because of the empty calories and generally bad health effects, but not specifically because of the kidney disease. My doctor tells me that although drinking to excess is never good, there is no research that shows it's specifically detrimental for PKD sufferers. One great things about cutting back is that you really get a buzz after drinking less, so you save money! hahaha

I'm trying to decide whether I'll have wheatgrass today. I skipped yesterday, so I should today, but I'm not looking fw to the tummy ache.

Taking Care

I don't know how I escaped learning what I'll call "feminine stuff" while growing up. Maybe it's just that I was a bit of a tomboy. Mabye I just wasn't exposed to it. In any case, I haven't always taken great care of myself. By that I mean, haircuts, moisturizer, shaving/waxing, make-up... I played around w/ makeup as a kid, but I wasn't very good at it. It never seemed to look very natural to me, but I always wanted to be more feminine. Yet I didn't feel comfortable with my femininity through most of my 20s. Maybe this is something that all young women go through? Some women have mothers who teach them these things. I know because I see them in the spa and out shopping, but mine really didn't. Although she did take care of herself, and still does, things were simpler in Nebraska. Manicures weren't normally something women did or talked about. We didn't go to the mall or buy designer clothes. That was reserved for women who were rich. It's not that we didn't have the money and certain points because my Dad did quite well financially a lot of the time -- until he died. My mother was practical -- she was raising a family on one income. I love that about her.

It took be until I was 30 to start to get the hang of this "feminine stuff." I did reject a lot of that in my 20's for lots of reasons -- some related to my feminist ideals. I guess I thought waxing and make-up, etc. was a societal pressure meant to occupy women with the trivial -- to emphasize our aestetic value. I think this is an outdated idea though -- I now believe women can embrace femininity and still be seen as intellectuals and professionals. In any case, I feel so much better when I take time to care for myself. That's what I'm trying to soay. I'm still not big on make-up, but I do like to dress well. I get regular pedicures and facials...

Overall, my point is that it makes me feel good to care for myself. In the last few months I have created new habits. I take more time for myself in the morning. I put lotion on after my shower in the morning. I used to slap on lotion here and there when I was very dry. I can't tell you what a difference it makes to feel my own soft skin througout the day. It seems like a small thing, but taking care of yourself really can lift your spirits. I take the time to pet my cats and sit to drink a cup of coffee in the morning, too. I get monthly facials, good haircuts, leg waxing, regular pedicures and I have a clothing budget. Anyhow, I can't emphasize enough to all women that you should pamper yourself. Especially if you are not well or if you spend a lot of time taking care of the people in your life. Even if you do just ONE of these things, you'll feel better through the day. We're worth it.

just another day, but

at least I had a lot of energy. I started out pretty hopeful today. Hopeful that things would go well in my meeting. That didn't happen, but I'm not here to talk about my job.

I've had a lot of energy lately. Perhaps this new anemia treatment is actually helping. I pretty much took about 6 days off from the gym in the last week. I had to go to a conference. I did manage to go to the hotel gym once for a brief workout (no lifting.) But I bought a workout magazine for the plane (Muscle & Fitness Hers) and it had some good information and 3 great new workouts. Yesterday I tried the first one. I usually lift twice a week even though I should do it 3 times. These routines, of course, recommended 3 times per week. But the intermediate routine looked reasonable. It seemed like a bit less than I usually do, but I figure change is good. I did alter it slightly -- adding in pushups and a hip abductor exercise, but otherwise, did as it recommended. The biggest change in this routine is that they recommend you use a diifficult weight and do 3 sets of 6-10 reps. Typically, I've read that you should do 12-15 reps. Anyhow, I actually felt a bit sore today so that's good. Then I jogged 30 minutes on the treadmill which is something I haven't done in months! Then I went to a spinning class today. I may take tomorrow off since I have Bikram yoga on Sunday. We'll see.

The point is that I have a lot more energy lately. Just before the holidays I got iron infusions. Three days for 1 1/2 hours each day. Starting in December, I have been getting bi-weekly aranesp shots. I don't have my blood test results in front of me, but I can tell you my number that represents iron went up .1 one month after the infusions. Big deal! They tell me it can take time to see results, but I really feel more energetic.

I started taking daily wheatgrass shots yesterday, too. Thus far it makes my stomach hurt for about 2 hours. I hope it gets easier.

Who am I?

I'm a person dealing with a hereditary disease, trying to live a normal healthy life. Well, perhaps not so normal since a healthy life for me is perhaps more important than for the average joe. I have Polycystic Kidney Disease. You may not have heard of it, but it's a very common disease. It's inhereted and I got it from my father. He was diagnosed when I was a child so my siblings and I were tested, as well. Two of us have it -- me and my older sister. She, of course, doesn't have any symtoms, but I do.

I am in my 30s and have been on blood pressure medication for 6-7 years. My creatinine is going up and up and I am struggling with anemia.

This blog is about my daily struggle to be healthy and live with PKD.