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.

Toil In The Soil

I have found that the older I get the more I like to toil in the soil. After the winter at the beginning of spring I love to plant and watch my garden grow. This year I tried something different, I tried using an indoor greenhouse and started seedlings in my garage. I enjoyed so much going out each day and checking to see if the seeds had germinated and after two weeks of patiently waiting the first new sprouts pop their little heads up and said hello. Not every seed I planted germinated, that’s just like life. We continually plant seeds in order to reap a rich harvest, but some fall on Fallon soil and will not germinate. The key is to continue to plant, to water, to feed and nurture in order to reap a rich harvest.
Take care of your life as you care for your garden and ye shall reap a rich harvest.

A Lazy Day In June

 

June 20, 2017

we awake to another glorious morning in June. As I began my daily tasks I realize that there is no such thing as a lazy day. While I may not be busy, the world around me certainly is. Many people are involved in the hustle and bustle of earning a living, others are involved is pure survival.

The children are out of school enjoying what hopes to be a wonderful summer full of memories. Father’s Day has just passed, July 4 is coming soon and the weather pleasant as it may be now will turn hot as it should in summer. We in America have come to realize that although we are the home of the brave and the land of the free, we are not so free. We have given up many freedoms in the name of protection. The news is filled with stories of attacks on the sanity and liberty of the human race by those who wish to pervert their beliefs and force others to either live by them or die.

Extremists following any agenda are the cause not one religion versus another. One has to be careful when reading from their holy book to listen with their heart as well as their mind and not interpret the message to suit their needs.

There always be conflict between religions, nations, citizens of the world. How we deal with them and how we work to eliminate them is the message.

So on this day, work hard in your garden of life to sow the seeds of peace and harmony so that we all may enjoy another lazy day in June.

What has become of our compassion and understanding in the healthcare system

Having recently visited a local ER it has become apparent to me that the medical staff of today has lost some of its compassion and the ability to listen to the patient. When the nurse that was going to start an IV was looking at the arm, they were informed that the patient was a difficult stick, the veins were deep and full of valves. It was requested not to have the IV started in the AC (bend of the elbow). The nurse only looked at a crooked vein in the AC and that was where they started the line. Last year when a person was going to have surgery the staff in the pre-op area was informed that the patient was a difficult stick and if they could not get a peripheral line in one or two sticks to put in a central line. When the anesthesiologist resident came to do their pre-op assessment the same information was passed to them. Was the patient’s request followed? No! After approximately 20 attempts in both arms and IV was established for surgery. This was done after the patient had been sedated and when surgery was over the patient was horrified to see their extremities had been used as pincushion’s. The hands were bruised the arms were bruised and the IV that was started infiltrated. A formal complaint was made to the hospital and to the surgeon and that’s as far as I know, as far as it went.

What ever happened to the patient knows their body better than the medical staff, and their rights to have procedures done per their wishes seems to be ignored. I understand that sometimes it is more important to establish IV access to be able to administer emergency medications, but to directly ignore the patient that knows their body and knows the condition of their vessels better than the nurse trying to start the IV I think is a severe lack of professionalism and borderline malpractice. I say this not as a layperson, I say this not as someone who is angry and upset. I say this as someone who has been in the medical field for 40 years, worked in the emergency room, been a paramedic on an ambulance, been a nurse in the ICU/CCU, thoracic intensive care unit, and has been trained as a hemodialysis nurse. I understand the physiology of the vessels and how to cannulated a vessel that is considered fragile and difficult. But to see the results of what I have stated above and the total disregard for the patient’s wishes horrifies me.

United States had in the past been known for having the best medical care system worldwide. Not to be political, but since the government has decided that they know how to take care of patients better than the professionals and regulated reimbursement the quality has declined. Doctors and nurses are leaving the field because it’s just too difficult to maneuver through the regulations and try to do what’s best for the patient without being sued. It used to be thought that physicians made millions of dollars a year, I spoke with my cardiologist and discovered that his practice barely broke even for the past five years because of the changes in reimbursement from Medicare and the insurance companies.

Everyone has heard of the affordable care act. It is anything but affordable, you were lied to when you were told you could keep your Dr. and your premiums would go down! Of course when you have to pass a bill before you can read it, what do you expect? You may agree with this or not. You may be able to relate to this or not. You may think I’m crazy, but my favorite saying is you’ll get over it! Next time you go to the emergency room and they come in to do a procedure and you asked them to do a specific task in a specific way like don’t start the IV in my right arm because if I’m admitted I won’t be able to eat and they started in your right AC means you can’t bend your arm and it means you’re going to eat left-handed if you can, think about this post.

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”