ALL AND ANY ANSWERS PLEASE: I have sought research on every level and can't find the answers I need.

1. After successful transplant, the anti-drugs open many routes of infection and lower resistance to cancers. How many die of related but non-rejected causes.

2. Who has info on new studies with anti-rejection drugs that don't suppress the immune system, in fact, only teach the body to ignore the foreign kidney. I heard there were successful experiments by a navy doc years ago, but since, no news.

3. I eat thirty phoslo a day and can't keep my phoz down below 7. Has anybody had success with renal gel. I had a bloated feeling when I tried it. Any suggestions. I don't drink beer, and cut 90% of the dairy.

4. How many live-related donors die after graciously giving up a kidney for a loved one. How many have their remaining kidney fail. Where are the stats. Doctors don't want us to ask these questions, especially surgeons.

5. Is nutcracker syndrome fixable,..is it considered a stenosis type surg fix or just a "well, tough luck type non-curable end-stage scenario."

6. Tip to re-use patients. DEMAND three bags of saline wash before you hook up to that kidney. Check the numbers.

I am currenlty taking 4 phoslo with meals. And that seems like too much.

I too have problems with my Phospherous. I got my calcuim under control with my last lab. I guess that is something.

I do stupid stuff all the time. Getting that slice of cheese on a hamburger. The Green Monster Chicken Enchila's at Left at Alberquerie. I often drink a glass of milk before I go to bed.

If you have cut 90% of you dairy it doesn't sound like you are cheating.

I noticed you responded to another of my posts, mentioning the Pop Shop. Are you also a recreational soda drinker? That may be the problem.

Good luck cutting down your Phospherous. I know it is hard. I used to drink 2 gallons of milk every 3 days. All by myself. I love milk. This part of the diet is killing me.

Thanks
jim
jrickel@fusionone.com

The HDCN web site currently has a lecture called Tumors After Solid Organ Transplantation by M. Roy First, MD.
http://www.hdcn.com

You have to pay to view it.

Dear M. Micone:

Just wanted to say I found your list of Big Questions intriguing. Over the years, I've compiled a mountain of literature - some of which I remember dealing with some of the issues you've presented.

Plan to sift through in over the next few days and will pass on anything of interest.

Can I ask if you are on dialysis? And, if so, are you considering whether a transplant is the best route?

I am also a member of HDCN and will check for the paper mentioned by DJ and pass along if possible.

Best,
Mike

Hi! You have some really great questions. The only one I can answer is about the phosphorus. I take a drug known as Calcium Acetate which has solved my problem. The other solution is that it is more than dairy that are high in phosphorus, I limit my self to about 1/2 glass a day of milk. I, too, lived on milk until I went into failure. Other foods I avoid include puddings, whole grains, bran, barley, nuts, dried beans, and peas, seeds, coconut, figs, dates, raisins, solid chocolate, cocoa,carbinated colas,salmon,sardines,oysters and liver. Hope this helps
nancy

[This message has been edited by Michael Williams (edited 05-03-2000).]

Hi m micone:

I have a copy of the paper mentioned by dj in an earlier reply. It's about 25 pages long and I have a hard copy.

If you're interested, send your mailing address to me (mallan_1999@yahoo.com) and I'd be happy to mail it to you.

Best,
Mike

My phosphorous was getting dangerously high, despite following the diet and taking PhosLo. I've now been started on Renagel (3 per meal) and the phosphorous has started to come down. Still not in the acceptable range but heading there. My dietician told me that a new extra-strength form of Renagel is coming out soon.
This is my own experience with Renagel, I cannot vouch for how effective it will be for you.