When The Phone Rings….

Everyday  a patient on the active transplant List waits for “The Phone To Ring” calling them to the hospital to receive the “Gift  of Life” in the form of an organ transplant.  For patients with Chronic Kidney Disease that do not have an identified living donor must continue to wait.  Depending upon their blood type, it can be a minimum of four to five years.  To even be considered to receive a transplant, a patient must meet several different criteria. for a kidney patient they must have reached CKD Stage 4 and thier GFR (Glomerular Filtration Rate) must be below 30. It is sad that They could not be worked up when they were Stage 3. maybe not active on the list but at least have all the testing completed. When your kidneys start declining from Stage 3 down, depending on the cause of your disease, it can continue on for a few years, a few months, or not even a month. So much depends on the overall health of the individual. I have monitored a patient with Renal failure from birth to date (21 Years) I watch them do well up until they turned 16, Then the decline started a little more quickly. In February of 2015 the patient dropped suddenly to a GFR of 15 down from 30. They were then worked up to be placed on the active list. The GFR rebounded above 15 for a few months which caused the patient to be placed on Hold till after thier 18th birthday. This caused a major issue as the patient was being seen as a Pediatric patient, and would still be able to until they were 21. The on problem was if they went down suddenly again and need to be put on Dialysis the Only Pediatric clinic was Full. The Nephrologist decided that with this problem in mind the Patient should be transferred to adult from Pediatric Nephrology. Working with the family the Doctor referred the patient to a Nephrologist at another Facility. The patient stayed listed at the Transplant center for Pediatrics. After many issues with the patients commercial insurance company the Patients listing was transferred to the Facility that the Adult Nephrologists worked with. The patient did receive thier accrued time form the when they were made active.  The family hoped and prayed to  hear the Phone Ring with the call for them to go to the hospital. When the patient had thier 21st Birthday Their GFR was still hovering around 15. Then 5 days later they ended up in the ER acutely Uremic and had to be started on Hemodialysis. Not what the patient wanted… They had prefered to do Peritoneal dialysis but thier lab was not “Bad Enough ” to justify placement of a catheter per the insurance and the Guidelines… They are now converted to PD (Peritoneal Dialysis) and doing their therapy at home. Still they wait for the “Phone to Ring”.  

Do you know of some one that is on the “list”? are you and organ donor? Is it on your Drivers License? Being a donor is not a piece of cake. You are going to have a major surgery to give  the “gift of Life” to another. Many times the Donor has more Post-op issues in the hospital than the recipient. But that is easily managed. While I have focused on Kidney Transplantation, There are other types of transplants that a living donor can offer. Liver, they remove a portion of the donors liver and graft it to the patients. The Donors liver will regenerate it self. Stem Cells, Can be a life saving gift for some patients, Bone Marrow can help Hemophiliacs. Both do not require a hospital stay for the donor. Unfortunately the Heart and Lungs come from a Cadaver. Unless you make it known that if something were to happen to you your organs would be available to be donated, It would come down to a family member to choose. Please make it know  on your position for organ donations. Help those on the list ‘ know that  they are blessed “When The Phone Rings” and it is for them to receive the Gift of Life.

THE GIFT OF LIFE – ORGAN DONATION

There are many diseases’ that cause the need for replacing an organ. In this article I will focus on one organ, the Kidney. The Kidney is a filter and to keep it simple, it filters the blood to remove waste products, balance electrolytes and fluid. It can be damaged by other problems such as Diabetes, High Blood Pressure, High Cholesterol, Bacterial infections and viruses. It can be damaged by Trauma as well. When the organ is damaged it may continue to work until it can no longer keep up with the filtration and Fluid/Electrolyte balance. The Person begins to become symptomatic and requires supplemental filtration in the form of Dialysis. If the person is diagnosed and treated prior to requiring dialysis they remain in fairly good health by following the treatment plan. That can prolong the eventual need for supplemental treatment. There is no cure for Renal Failure. That sounds harsh but it is true. He on options a person with Chronic Kidney Disease (CKD) is either Dialysis or Organ transplantation. I am addressing the Latter in this piece.

Organ Transplantation

The process involves multiple phases and is still only a treatment.

Phase One: Identifying the need for Renal Replacement therapy. This is the first step in the treatment plan and if CKD is discovered early enough The detriment to other organs may be lessened. The need for follow-up with a specialist is discovered in the Primary Care Physician’s office during a routine lab draw, it could be a visit to another specialist, when lab is drawn or symptoms are present. The referral to a Nephrologist is made and the Diagnosis is confirmed. The severity can bel classified in 5 stages. These Stages are based upon the GFR (Glomerular Filtration Rate). Stages 1 -4 are managed medically until the GFR begins to drastically drop. At that point depending upon how fast it is dropping and what stage the person is in determines the course.

Phase 2: Management of the disease is extremely important as the more compliant the person is with the treatment plan the longer the patient may stay healthier until they can be listed and receive the Gift of life in the form of Organ Transplantation. This would include regular follow-up with the Nephrologist, adhering to the Diet and Fluid management guidelines, compliance with taking prescribed medications as directed and on a schedule, and exercise to stay as healthy as possible. As the Person continues to move from stage to stage the Health care team will evaluate the potential for the person to be a candidate for a transplant.

Phase 3: Candidacy for Transplantation is evaluated by the Healthcare Team at a transplant center. The team consists of The Transplant Coordinator, Transplant Surgeon, Dietician, Social Worker, Transplant Pharmacist, and Transplant Nurses in the center. Once referred to the Center, the person is tested and informed of all the process involved in transplantation. The testing is done for tissue match and other markers used to evaluate the patient. Once the person has cleared all the process and has been determined a candidate for receiving the gift of life in the form of an organ, they will be placed on the Transplant List as either active or on hold till qualifications are met.

Phase 4: Listing the patient is a huge step. If the medical qualifications show that the person meets the Standard at which Medicare guidelines approve the transplant is needed, the person is placed on the active list and begins to accumulate points. That sounds cold… The guidelines are based on studies and outcomes of transplantation. The most significant value is the GFR. If the GFR does not fall below 20 a person 18 years and older cannot not be active on the list and accumulate points, a child until their 18th birthday can be listed sooner.

Phase 5: The wait… Once active on the list the candidate accumulates points based upon time on the list and other values. The wait, depending upon Blood type, other markers and points can be as long as 3 to 5 years. During which the candidate must remain compliant with their treatment plan, diet, medications. They will continue to be followed when they are at the top of the list they can receive The Call.

Phase 6: “The Call” can come at any time night or day. The Candidate has to respond and be at the transplant Center within 4 hours. The coordinator doesn’t call the candidate at the top, they will also call others that are below the top in case The top one is disqualified due to a change in health. This could be having a cold at the time of the call, or running a fever due to a virus. That sounds cold and heartless but it is for the safety of the candidate. Because the first thing that is done prop is to give an extremely strong medication to wipe out the immune system. This helps to prevent rejection.

Phase 7: “The Gift of Life” – I refer to the donated organ as the gift of life. The organ can be from a familial member (no waiting list for that), A Directed Donor (Someone who offers an organ to the candidate and is a match), and the most common a cadaveric Donor (someone who has marked their Drivers License as an Organ Donor or the family over a loved one that has expressed their wishes to donate their organs). The Familial and Directed Donors do not have to wait longer than the donors’ candidacy to be approved. The Donor must meet the criteria to be able to give an organ. The cadaveric donor is an organ for someone that has died which make the time line very short. The call is made to the Transplant center that an organ is available if they have a candidate that matches. Once accepted the race is on to get the Candidate ready to receive their gift.

Phase 8: “The Transplantation Surgery” – This is the procedure that puts the donated organ into the recipient and begins the next phase of this treatment. I am not going to get into the surgery portion due to the technical nature and the fact that the Surgical teams are the best at what they do.

Phase 9: “The Recovery” – Post operative the recipient is monitored and the anti-rejection medication is adjusted for the best outcome. If the Donor was living, their recovery is monitored just as any patient that had a major surgery would be. That is because they have just had a major surgery. Once the recipient has been released the new Treatment Plan begins.

Phase 10: “Living with a transplanted Organ” Since transplantation is only a treatment, the recipient must continue to stay compliant with their medications as scheduled. Every dose at exactly the same time every day. This is one of the hardest things for a young person to do but it is the most important for all recipients. Continued follow-up with the Transplant clinic and maintaining a healthy lifestyle is how the recipient can keep their gift and honor the donor.

This is the process, dealing with the need for a transplant and the wait for an organ when it is a loved one can leave one asking why is this so complicated. One answer is that each donated organ is so precious because of the lack of tissue donors. Each organ affects 3 people, the donor the recipient and the next in line. If the recipient does not stay compliant with their treat it affects 2 other lives. The one that died giving and the one that may have died waiting. This can be a heavy burden to carry if the recipient does not understand the value. As the family member one must help them to understand the value and the need to remain compliant and healthy to protect their “Gift of Life”.

If you have ever considered becoming a living donor or wish to share your organs after you have died. Contact Organ Donation: Donate Life America or Organ Donor Registry. Share the “Gift of Life”

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.