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!