Dealing with Chronic Kidney Disease

Imagine being informed that your hours old baby has developed Acute Renal Failure. What that means is that for some reason the kidneys have stopped doing their job. The outcomes are not good, but with the appropriate treatment and care should be fatal…. Yet! The infant rose from a mere 8lbs 13oz at birth to 12lbs in less than 24 hours. The NICU staff worked with the Pediatric Nephrologist to helps the baby’s’ Kidneys start on their own. Within 24 hours the staff had succeed in waking up the kidney’s. What does this mean for the child? The cause of the Acute Failure had to be determined to see if this was just a fluke or if the Kidneys would eventual fail. As a parent and being in the medical field, the outlook was not clear as to what the infant would need in the future. Two very concerned parents praying for the best but mentally preparing for the worst. The questions of why did this happen? Could something have been done to prevent this? Will my child live to be a Father/Mother? Having a medical background, both parents realized that this was not because God was punishing them, but he was tasking them with a course that would make them a very strong family. Faith and Medicine go hand in hand. Regular visits to the Pediatric Nephrologists getting urine and blood each visit and watching the trends was a part of life. The shock to the father was when at the tender age of 18 months he was told the kidneys are working well enough that the child would not need a transplant very soon. This was not something that had even been brought up. Fast Forward 16 years. Child continue regular visits with the Pediatric nephrologist’s and is in what was called Stage 3 CKD (Chronic Kidney Disease), Although he was not progressing towards the worsening stages the parents had already been made aware that it could happen at any time. The Child was active in after school activities and doing fairly well with adjustments to their medications. In February 2015, The child became very symptomatic, complaining of extreme fatigue, having difficulty remembering things Nausea, The Lab work showed that level of function had dropped from 33 to 18 in just a couple of weeks. That being a significant drop might be indicating that the kidneys were about to quite being able to filter the waste products well enough and that the child may need to start Dialysis very soon. The child would also need to be worked up for a transplant. The Nephrologist realizing that the child would be turning 18 before the transplant process to get the child on the list an active would be very difficult. The decision was made to work up the patient through the pediatric transplant center as the wait time would be less.

Having delved into this scenario what would the complications be that could prevent the patient from getting listed and receive an organ sooner than later? To start with there are not enough Organ donors to get all that need transplant an organ. They must prioritize. The best organ donor would be a family member that had the best match. This is called a living related donor. The next best would be someone else non-related that was a match and was willing to donate. Having neither of those available then it would come from a cadaveric donor. That means some that has marked the box on their Driver’s License to be an organ donor and when they are fatally wounded our traumatized in an accident The Organ sharing network goes into action. All this is regulated by the Federal Government and Medicare. They set the standards and the way the list is kept. This is to prevent someone with a big pocket book getting moved up to the top over a patient that has been waiting for up to three years. The standards change once the patient reaches the age of 18. As a pediatric patient the patient would be listed when their value reached 22. At the age of 18, the value for them to be listed is 18 or below. The problem with a value that low ids will the patient be able to remain healthy enough to receive the kidney. The lower that value the more chance that the patient will need to be started on dialysis. The value I have referred to is the GFR (Glomerular Filtration Rate) and the Table for the stages of Chronic Kidney Disease were downloaded 02/19/2016 @ 01:46 from Renal Function – Wikipedia



This issue has become a question to me. Why do you wait to work up pediatric patients until they are so close to needing dialysis that they are almost too sick to survive the transplant surgery and recover? Preventative measures would be to start the process for any Renal patient that has reached stage 3, the could be put on the list and start accumulating time at a slower rate that say a stage 4 or stage 5. If there was a kidney available that had enough points to match the could be call as an alternate maybe even a 3rd or 4th alternate. Changing the rate required for pediatrics at 18 and requiring them to fall under the adult guidelines makes no sense. Of course the ideal situation would be to have enough donors that were willing to help another human being on the list that the wait time would not be so long.

I am not complaining about the system in as much as It is a personal issue as my child is the model I gave. We finished all the work up and when it was time for the final labs to qualify the GFR that had been 18 and 19 went up to 22 to 25. Good news as it means no dialysis but it also means can’t be on the active list.

If you would like more information on Chronic Renal Disease just click on the following link that will take you to the National Kidney Foundation website. National Kidney Foundation.


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