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”