Many of the side effects of the medications William was prescribed in October 2022 caused him to lose his appetite. His month-long hospitalization in March exacerbated his weight loss. To stay healthy and strong enough to qualify for a kidney transplant (should he find a donor match), he must gain weight. However, having a desire to eat is proving difficult. His renal dietician advised him to consume higher fat foods, such as 3% milk. So whenever I cook for him, I use more butter or encourage him to add high-fat, high-calorie foods like sour cream. His body's ability to gain weight has been a slow process. If William meets the criteria for a kidney transplant and finds a suitable donor match, the only pills he'll need in the future will be anti-rejection medication. However, those pills aren't without drawbacks. From a previous post, I mentioned that William needs to limit his fluid intake. Fluid restriction aids the patient's health. Dialysis patients can either urinate infrequently or not at all. Dialysis must remove any extra fluid, and drinking too much fluid may cause buildup between dialysis sessions, resulting in the following:
William recently bought a drinking cup with measurements painted on it. This greatly aids him in keeping track of the 1.5L (6.34 cup) of fluid per day that he is permitted to consume. ‐–-------‐‐---------------
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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We're coping and working as a team. I do my best to foster as much normalcy as possible in the lives of each of our children and myself. Trying to stay healthy is draining William's mental capacity. This is not to say William isn't involved in our lives; however, his dialysis-induced fatigue or unpredictable stretches of feeling well makes it difficult for him to be fully present. A and F aren't small children, nevertheless, they're still youngish and in school. As they've yet to mature into fully functioning and independant adults, they continue to rely on our financial and, more crucially, emotional support. I believe that their future success is dependent on both of us NOT parentifying them because we feel anxious or worried. They're both supportive and helpful in ways they can, but they need the freedom to focus on their studies, part-time jobs, and social lives if they're to develop into well-adjusted adults. When all of this started, I sought help from a therapist. I recently bid goodbye to therapy for the time being since I came away from my sessions understanding that I'm a lot stronger than I thought I was. I've been actively searching for employment (while juggling regular household chores, the upkeep of this website and donor search, and community volunteer work); I've restarted driving after a 20-year hiatus. Above all, I refuse to parentify our children. Yes, there have been difficult, demanding, and physically and mentally taxing moments. Maintaining a sense of environmental normalcy at home means (doing my best trying to) keep up with running a home, such as laundry, supply and grocery runs, keeping the kitchen clean and organized for daily meal prep, etc...tasks that, if not dealt with can become overwhelming if William's health necessitates another hospitalization. Among all this, I do try to squeeze out some moments to knit or bake while fantasizing about an all-inclusive vacation where all I have to do is lounge and decide what to eat from the buffet. Our adolescent son has matured much more during this past year and has taken on additional housework while keeping up his grades and working part-time. When our daughter comes home from university, she also pitches in to help. I'm also grateful to have a sister who has taken on most of the tasks of supporting our aging parents' needs. This crisis would have been a lot harder without her. We're also very grateful for William's wide circle of friends and chosen family in our lives. Knowing you're all there has made this crisis bearable for us — you know who you are! Finally, this past year, my motto has been "It could've been worst." ‐–-------‐‐--------------- 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. 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.
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. |
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April 2024
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