Author:
Diane (Update from Saturday)
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Date Posted: 09:44:07 06/26/06 Mon
In reply to:
Diane
's message, "PKD Conference in Washington, DC" on 00:25:20 06/23/06 Fri
I should start out by saying that there were several choices for break-out sessions at the conference, so my summaries only detail the particular sessions I went to. The choices I made were those for Pre-ESRD, Pre-Dialysis patients. I was only recently diagnosed and have good function.
A. The first session I went to on Saturday was about NUTRITION. The nutritionist was worth the price of the conference! Patients diagnosed at early stages of the disease are often told that there is little they can do to take charge of their health. She had some convincing suggestions. I'm going to just list the basics here, but if you want more info about any particular category, email me and I'll share the details:
1. STRESS causes an elevation of adrenaline and blood pressure & may cause cysts to grow at a faster rate. Control it.
2. WEIGHT should be controlled. Among other reasons, fat cells can secrete hormones & raise endocrine levels that lead to inflammation.
3. INFLAMMATION in the kidney can accellerate the growth of cysts. Among other things, excess animal protein (meat, milk, cheese, eggs) can all lead to inflammation.
4. EAT A (MOSTLY) VEGGIE DIET: What you take into your body becomes your body tissues...so eat mindfully. Less protein has been linked to a slower progression of the disease.
5. EAT SOY: There are slower rates of PKD progression in Asian countries that consume soy and eat less animal protein. Soy was recommended in only traditional forms: edamame, tofu, a few soy beans thrown into a soup, soy nuts.
6. INCREASE ANTIOXIDANTS: These offer protection against many diseases and may help reduce inflammation. Think brightly colored veggies! Eat "your colors!"
7. LOW SODIUM: This means no more than 2400 mg per day. 500-600mg per meal, or 200-300mg per snack. I've been inspecting all my nutrition labels!
8. LIMIT CAFFEINE AND ALCOHOL
9. EAT LOTS OF POTASSIUM (This only applies pre-kidney failure!)
10. EAT MORE FIBER because it helps the kidney process waste.
11. STAY WELL HYDRATED.
B. The second session I went to was about controlling your high blood pressure. The speaker recommended taking your blood pressure several times a day: in the am, pm, and right before bed. He said take note of your stressful times and take action to correct that stress! Keeping your blood pressure (bp) under control prevents organ damage. He recommended:
1. Maintaining ideal body weight
2. Regular aerobic activity (30-45 minutes a day, most days)
3. Veggie diet
4. Low salt
5. Enough potassium
What is hypertension? He said that Stage 1 Hypertension is 140-159/90-99. Stage 2 hypertension is >160/>100. Treat it aggressively and early. The type of bp medicine you take is not as important as TAKING some kind of med! He also did a demonstration on how to take your own bp at home. Make sure your machine is calibrated correctly! Over time, the calibrations of these little home models get inconsistent. Take it to the doctor's office and compare it to the reading you get from the one he uses.
C. The next session was about current clinical trials: CRISP (completed), Tolvaptan and HALT. To participate in the Tolvaptan Phase III trial, you can call 866-712-5837 for more info. You'll have to be between 18-50 years old, and willing to participate (and not get pregnant) for 5 years. The HALT trial is going on in Boston, Atlanta, Rochester, Cleveland, Kansas City, and Denver. I have the numbers for those centers if you want to contact me for info. These candidates will have to have normal BP to participate.
D. The next session I went to was on pain management in PKD. Where is your pain? The speaker showed that most PKD patients experience pain in the back and abdomen. There is no relation between renal function and pain. So someone can be in the really early stages and still hurt a lot. She said that there are tons of nerves around the kidney, so it makes sense that we have pain. Pain can be caused by:
1. Our new compensating postures (as we manage the new size of our kidneys),
2. Infection,
3. Cyst rupture,
4. Kidney Stones,
and...non-PKD pain! A lot of us forget that we can still get other problems!
She recommended exploring non-medication/non-invasive measures first. Posture exercises, massage therapy, weight loss, heat and ice, possibly acupuncture, and something called a TENS machine (that excites the nerves in that area). I was impressed that she actually gave credit to non-Western science. You don't see that a lot from doctors, but apparently Johns Hopkins is building a big acuptuncture treatment facility!
When pain gets too unbearable, she mentioned some options: cyst aspiration, the unroofing of cysts, renal denervation, and nephrectomy. Contact me if you want more info on these things.
I hope some of this info was helpful to all of you. I still have to write up the review of Sunday's sessions. Please contact me if you want me to go into any more detail on any of the things I mentioned here. I wish you could have all been there with me.
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