DIALYSIS
As one approaches dialysis, there is a wonderful lecture given titled Understanding Dialysis. As I listened to this lecture, most if not all my fears surrounding dialysis were allayed. She addresses the question of young children being able to lead a near normal life by having nightly nocturnal dialysis. By morning these youngsters have slept well, are rested, bounding with energy and prepared for the following day. With adults, restless leg syndrome subsides, their energy levels are elevated. and intimacy issues dissipate. Unfortunately for many, insurance will pay for only 3 days per week of dialysis. By doing exchanges for 6 or 7 nights a week, the benefits are so dramatic that many dialysis patients question the need for an organ transplant.

There are several excellent taped lectures given at the PKD conference 2004. Understanding Dialysis by Dr. Amy Williams from the Mayo Clinic Rochester MN and Trends and innovations in Transplant by Dr. Montgomery from Johns Hopkins University.

As we approach dialysis more than likely placing one on the transplant list will be advised. Is there anything being done to decrease transplant costs? There is a new technique, developed by a doctor from India, using donor cells to lessen the amount of immunosuppressive medication needed, dropping the cost of maintaining a transplant from $3000 to $300. To read about this, click here. Among the immunosuppressive agents is a drug called Rapamycin. Rapamycin has been found to diminish cyst growth in a prospective study of PKD individuals with a kidney transplant. With the hope that rapamycin can diminish cyst growth, this opens the world to the remote possibility that perhaps someday in the distant future, transplanted organs can be reversed as happened to this one child with a heart transplant. The heart recovered and healed some years later; allowing the doctors to reverse the heart transplant.

Nocturnal nightly dialysis is a great thing when performed 6-7 times in a week. It allows children to live fairly normal lives. They awaken energized ready to face the day. With adults restless leg syndrome is greatly diminished and libido is increased to teenage years. They too are fully energized and sometimes feel so incredibly well (they often look healthier than some of the doctors) they sometimes ask to be taken off the transplant list.

My Mom some 45 years ago had home hemodialysis. The advantage of this was she could have dialysis even as frequently as every night, like they are doing today with frequent nocturnal dialysis. This made her feel so much better. The long drive into Cedars Sinai Hospital from Thousand Oaks was at least an hour to an hour and half each way. Plus ontop of this was the time on the machine. She and my step Dad received instruction on the dialysis machine and on the day she graduated from this, she stitched up a ball gown and went to the Christmas party.

My Dad had written up the cost of home dialysis vs going to the hospital and submitted this to the insurance company, Blue Cross Blue Shield. They granted for the first time ever in California and allowed home dialysis to be performed. My mom would prepare everything and then she would wait for my Dad to come home from work each evening. A few mishaps that happened is once the machine disconnected from her shunt. They had blinking lights, bells and whistles set up to signal my Dad that my Mom needed help. He said she used her pipes and let out a scream and he came running. Her voice reached him quicker than any alarms they had previously set up. My mom did very well on this until she opted for one of the first ever cadaver transplants. They did some slight re-model of the dialysis room. The walls were painted with a paint that was easily cleanable. She was 40 at the time. My Mom never got an infection from the home dialysis. I think clots form due to other factors that are not dependent on the dialysis being performed at home or at a clinic. It is the nature of the shunt or fistula.
Here is an informative Canadian site 2000 about a Toronto program for nocturnal home hemodialysis. Here is another site at kidney org about home hemodialysis.
Different types of home hemodialysis
Three types of hemodialysis can be performed at home. They are:
1. Conventional home hemodialysis:
2. Short daily home hemodialysis:
3. Nocturnal home hemodialysis: Long, slow treatments done at night while you sleep. You may do this kind of dialysis six nights a week or every other night. This depends on what your doctor prescribes for you. Treatments usually last about six to eight hours. You and your care partner are trained over several weeks. Some centers monitor your treatments by sending information from your dialysis machine to a staffed location by telephone modem or the Internet. More hours of dialysis each week can result in more waste removal. Read more.

PERITONEAL DIALYSIS or download a file from Sheryl 's experience.

COPING WITH KIDNEY DISEASE
by Mackenzie Walser MD from Johns Hopkins University, professor of medicine.
Should you begin to spill protein in your urine or your kidney functioning begins its decline, this book is very worthwhile reading. Through dropping the dietary protein very very low, supplementing with essential amino acids, and using an alkalizer (like potassium or sodium citrate), Dr. Walser has halted the progression of kidney decline in a few of his patients. Many of us with good kidney functioning are taking in neutral protein calculated at 0.6 grams of protein per kilogram of body weight. For me this amounts to about 30 grams of protein. I eat only fruits, vegetables and nuts. I have to watch my protein intake to be sure I do not exceed this amount.

Neutral protein is protein balance. We are taken in exactly what is needed by the body, no more, no less. On Dr. Walser's treatment plan, he drops this to half or to 0.3 grams of protein per kilogram of body weight. He cautions that this should only be done while supplementing with essential amino acids in the exact correct proportions that are in both the essential amino acid formulas from Calwood and Gambro pharmaceutical companies. He has individuals maintain a strong alkalinity through the use of supplements. Two powerful alkalizers are sodium citrate and potassium citrate. He has one totally avoid all animal proteins as well as certain vegetables and fruits that are also high in protein, phosphorus, and potassium. He checks and adjusts certain blood pressure medications and cautions individuals that lithium, NSAIDs, tylenol, aspirin, and star fruit can all lead to a decline in kidney functioning.

He has observed that by starting these precautions, individuals serum albumin will rise again. Normal albumin is a predictor of health with declining kidney functioning. He has individuals supplement with iron avoiding the pain of procrit injections. I would add that also to take vitamin C with rose hips so that most of the iron will be absorbed rather than lost through the gut .Email us with your experience or any questions. To read more about this, check out Low Protein. A doctor from China is studying this in 17,000 patients and has concluded thus far that supplementing with essential amino acids, eliminating animal proteins, and using ACE inhibitors to control elevated blood pressure, has stopped proteins from spilling in the urine by 90%. Protein in the urine is an early sign of nephrotic syndrome or declining kidney functioning. - Saving Failing Kidneys.

In memorian
Dr. Mackenzie Walser an imminent nephrologist and professor of medicine who wrote widely on the nutritional management of kidney disease, died of a brain tumor, at the age of 82, October 28, 2006 at his home in Timonium, Maryland. He became enamored of the use of the keto analogs of the amino acids with the idea that they would decrease the amount of nitrogen available to the body. This turned out not to be true. In the early 80's he convinced Senators Al Gore and Bob Dole to sponsor a bill funding the testing of these materials in the US - the MDRD study failed to duplicate the success he had achieved at Johns Hopkins. He discovered later than Ross Lab had failed to use the formula he had developed and substituted their own patented formula. This and other problems resulted in failure.Other US nephrologists refused to see the tremendous achievement Dr. Walser developed to avoid dialysis. While the rest of the world Frensenius copied Dr. Walser's formula for treating kidney disease. In China Dr. Lin report there are 85,000 people on this treatment to which the daily prescription of an ACEi has been added. Dr. Mackenzie Walser recommends staying alkaline.

TRANSPLANT
If one can go directly to organ transplant bypassing dialysis altogether, this has the best chance of prolonging life. If there is a potential friend willing to give you their kidney but you are not a match, try contacting Robert Montgomery MD at Johns Hopkins University USA to see if he can do some organ swapping and to get a better match. To listen to his lecture, Living Donor Transplant Innovations click here.

Five receive kidneys In first ever multiple living donor transplant.
Five people received new kidneys from strangers in a domino-effect series of transplant operations on a single day, setting a record for the number of kidney transplants involved in such a swap.
One Altruistic Donor Sparks Five-Way Kidney Transplant
BALTIMORE, Nov. 21-- A single altruistic kidney donor offering an organ to anyone who needed it stimulated five simultaneous transplants in domino fashion to unrelated HLA-compatible recipients here. As the possible connections were traced, officials at Hopkins discovered that each of four of the five donors turned out to be a fit for someone else in the group, and the five-way match emerged. The fifth kidney was given to a recipient on a national waiting list run by the United Network for Organ Sharing (UNOS). Read more. Dr. Robert Montgomery is at it again taking 10 individuals and pairing the most compatible living donor organ with the best likely to succeed recipient all sparked by a single altruistic donor. President Bush visited Johns Hopkins when Dr. Montgomery at Johns Hopkins had performed a triple (with six individuals living donor surgery) and the president asked Dr. Montgomery if there was anything he could do to help? Dr. Montgomery quickly spoke up saying by the way there is. We are trying to get medicare approval for these organ swapping procedures. So the attorneys worked with Johns Hopkins attorneys and the wording was such that medicare approval was obtained specifically for these procedures performed only at Johns Hopkins. Morbid Obesity does not preclude successful renal transplant by Dr. J F Valente Based on our experience, morbid obesity should not be used to exclude patients
Dietary amino acids as new and novel agents to enhance allograft survival. This study was performed to determine further the role of amino acid supplementation in prolonging allograft survival. It is concluded that both arginine and glutamine enhance the immunosuppressive effects of donor-specific transfusion and cyclosporin.

 

last updated Friday, March 2, 2012 4:01 PM