A neighbour who walks her dogs by our house on a daily basis asked about William's request for a living kidney donation (LKD), which she saw on a yard sign we have up. She asked the most common question, "Was there no one in the family who was a match?" The most commonly held misconceptions about becoming a living kidney donor (LKD) is that only one volunteer is required, and this person must be a blood match. A family member is the best match. Bada-bing-bada-boom — William gets a new kidney. End of story. These ideas have been influenced by feel-good news reports, shows on TV, or movies. While the best blood match can theoretically come from a family member, it isn't so simple. To be a LKD, you must pass rigorous medical and psychological evaluations. The transplant team wants to ensure that the donor will be able to live a healthy life following donation and that they're donating for the correct reasons. All live kidney donations must be fully voluntary, with no pressure or guilt attached, and donors cannot be compensated for their donation. Accepting or denying living kidney donors should ultimately be determined by whether the benefit outweighs the risk for both the donor and the recipient. The existence of medical issues is the most common cause for declining possible LKDs (This means that a family member can fail the medical tests just as easily as a stranger). Donor withdrawal is the second most prevalent reason a patient didn't get a new kidney. After completing their work-up, these potential donors withdrew their consent, resulting in a major waste of resources. For these reasons, having multiple volunteers is key to finding a donor. Understandably, a patient asking for organ donation is unaware of how many people have volunteered or where they stand in the process due to privacy concerns. This is why efforts to raise awareness of William's need for an organ donor are ongoing. I've been leaving postcards, around our neighbourhood, in small business cafés in order to increase traffic to this website. Hopefully, this encourages more people to volunteer. Click here for more information on the common misconceptions and proper procedure surrounding being LKD.
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William sees his healthcare team nearly every week. One of those days was today. An x-ray was taken to check for extra fluid in his upper abdomen, and it came out clear. Blood tests were carried out to assess his estimated glomerular filtration rate (eGFR), potassium, and hemoglobin (also called Hb) levels. A urine test to determine albumin and creatinine levels. Cardiology was called in to monitor his heart, and everything was fine. Because of his kidney disease, William must self-inject ARANESP® once a month. It functions similarly to the hormone erythropoietin (ee-rith-row-PO-eh-tin). Erythropoietin is a hormone produced by the kidneys that instruct our bodies to produce red blood cells. Hemoglobin (Hb) levels are monitored on a regular basis to ensure that they don't rise too quickly or too dramatically. When the number of blood cells is lower than normal, so are the amounts of hemoglobin. This is an iron-rich protein that enables red blood cells to carry oxygen from the lungs to the rest of the body. Less Hb means less oxygen to your tissues and organs, such as your heart and brain, and they may not receive enough oxygen to function effectively. William is extremely fortunate in terms of his medical care for two reasons: 1. While Canada's healthcare system isn't perfect (in fact, nothing really is perfect), it works when you need it the most. All of the medical treatments he requires haven't added an extra burden, on top of dealing with a serious illness. If we lived in the USA, our out-of-pocket medical spending would've exceeded the amount we pay in taxes each year. I'd never begrudge anyone's medical care and will gladly support universal healthcare via taxation. 2. He has an exceptional healthcare team that works in Canada's premier hospital. Toronto General Hospital was ranked fifth in the world. The Mayo Clinic in Minnesota, USA, came out on top. Cleveland Clinic, Massachusetts General Hospital, and Johns Hopkins Hospital were among the top five hospitals. TGH also leads the way in organ transplant research and the treatment of complex patient demands. ‐–-------‐‐--------------- Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. Last week, William went to the doctor. Nasal polyps could be causing his nosebleeds. He'll be seen by an ENT specialist. Concerning his low tolerance to cold symptoms, bloodwork was performed to check his thyroid, and his nephrologist stated that the TSH hormone isn't elevated enough to be a cause for concern, as she has seen this hormone change during dialysis. However, another blood test will be performed in a month to look for the T4 hormone.
Severe fatigue is a common side effect of all dialysis methods. This affects 60-97% of patients and has a negative impact on their quality of life. While determining the exact cause can be difficult, patients with chronic kidney disease (CKD) or end-stage renal disease (ESRD) have several factors contributing to fatigue, including uremia, an increase in waste products in the blood, and anemia, a decrease in red blood cell production. Fluid control is another issue that many dialysis patients face in terms of quality of life. William can only consume 1.5L (6.34 cups) of fluid per day (including soups, ice cream, and anything that can melt into a fluid, like ice cubes). A healthy male adult should consume approximately 3.7L (15.5 cups) of fluids per day. He is constantly thirsty. Today's high temperature will be 35C. It's especially difficult on days like today. William is currently sleeping in bed after his morning dialysis session. In a few hours, it'll be time for his afternoon dialysis session. ‐–-------‐‐--------------- Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. William's breathing has been normal — that's good. However, he has been battling with random and profuse nosebleeds since last week. He's no longer using any blood thinners. Furthermore, as the summer comes to a conclusion and the nights become cooler in August, his shivers have returned. It's been almost a year since his kidney function unexpectedly deteriorated. He went for a routine blood test at the end of September 2022, and we learned that his kidneys were in late-stage renal disease. Then many drugs were prescribed, each attempting to balance all of the comorbidities. Back to the nosebleeds and chills: William will see a doctor to have his thyroid checked, and hopefully the nosebleeds may only require nasal cauterization. Fingers crossed that all this is nothing serious. ‐–-------‐‐--------------- Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. William's breathing improved considerably during the weekend. The procedure of draining the dialysate while sitting up and then standing up appears to be effective. We're cautiously optimistic. However, energy levels remain quite low. The days before William became ill, when he was full of life, are unfortunately gone for the time being. In addition, his lack of appetite since October 2022 has resulted in substantial weight loss. William has been working hard to regain his weight. It's proven difficult because his appetite isn't what it once was. There are good days and bad days. ‐–-------‐‐--------------- Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. This morning, William woke up having difficulty breathing again. He went to his renal clinic for a follow-up. The nurses listened to his chest, and everything sounded clear. Another chest x-ray was done and the results are clear. He was told that if his breathing continues to be laboured, he needs to see his cardiologist. When you think one issue is resolved, another seems to arise. It's extremely draining, emotionally. ‐–-------‐‐--------------- Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. William received unexpected news this morning that he'd be released from the hospital today. He's to continue performing manual peritoneal dialysis (PD), but he's to drain the dialysate either sitting up or standing up, according to discharge instructions. One nurse instructed me to remind William to perform the "PD dance" after draining the dialysate when he stands up. This is done to avoid adding new dialysate on top of old dialysate and to make certain that all the fluid has been thoroughly eliminated from his lower abdomen. He has appointments at the outpatient renal clinic for follow-ups tomorrow and on Monday. We were so worn out from the week that we both took long naps when we got home. Both of us are anticipating decompressing for the next few days. ‐–-------‐‐--------------- Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. More experimentation and waiting — William was given another PD exchange in the afternoon. Then another X-ray was done. Despite the fact that his diaphragm is leak-free according to yesterday's CT scan, dialysate can be seen filling up his upper abdomen on today's X-ray. William also had a nighttime PD exchange, although we're not clear what the goal is. ‐–-------‐‐--------------- Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. Exchange is the term used to describe the manual peritoneal dialysis (PD) procedure. There are three steps to every exchange: fill, dwell, and drain. An IV pole, a brand-new bag of dialysate, and an empty drain bag are used for manual PD. The patient hangs the dialysate from an IV pole, fills their abdomen with the solution, where it dwells for a few hours, and then drains it into the empty bag. Gravity moves the fluid through a tube and into and out of the abdomen. In addition, to one exchange with a prolonged dwell period, while sleeping, patients may require three to four swaps during the day. During the time between exchanges, the dialysis solution stays in the patient's abdomen, allowing them to continue with their regular activities. This afternoon, before filling, a dye was put into the dialysate as part of the follow-up to his PD test from yesterday. The dye was used in a CT scan a few hours later to identify leakage in William's diaphragm. Thankfully, the scan's results came back negative. No leaks. This does not, however, address the problem of where the fluid is coming from. We are awaiting more information from William's nephrologist. Will there be any other tests? Can he continue with manual PD and forego hemodialysis? When will he be discharged from the hospital? A saying goes, "The only certainty in life is uncertainty." — not exactly this year's favourite platitude. ‐–-------‐‐--------------- Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. Happy news! Earlier today, a chest X-ray was performed. William's body has absorbed the extra fluid that was in his diaphragm. He no longer requires a "tap". But William hasn't had any sort of dialysis therapy since last Thursday when he was admitted into the hospital. His body having absorbed the extra fluid, the nephrologist decided to attempt peritoneal dialysis (PD) once more as a test. Knowing that this is being done in a hospital where staff can monitor his response—or, ideally, lack of response—to the PD is reassuring. William won't be allowed to go home until a dialysis plan is established.
It's comparable to sitting next to strangers on an airplane to share a hospital room with various strangers. Will one end up next to a gabber? William's new roommate is clearly a talker. ‐–-------‐‐--------------- Myth: Only one volunteer is required to become a living kidney donor. There are strict health criteria for volunteers. It is necessary to have multiple volunteers. Not everyone who fills out a form will be a suitable kidney donor. |
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