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.
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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. I've realized that most people's perception of living organ donors are shaped by how they are portrayed in popular culture. In their act of giving, the living donor is typically portrayed as larger than life with a redemption arc. The donation process is glossed over or ignored totally for dramatic effect. I've made a slide show to explain the process. I call it "The Magic Pixie Living Kidney Donor Myth". Click here to view it. ‐–-------‐‐--------------- 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. Friday in August. Many of the hospital staff are on vacation. William was informed yesterday that his abdomen would be "tapped" today. All day long, different medical staff members would express their "hope" that the treatment would be done. Today has passed. The abdomen is still fluid-filled. William's nephrologist had a long conversation with him. It's quite unusual for there to be a buildup of dialysis fluid in someone's abdomen. Usually, the diaphragm has a flaw when this occurs. Fortunately, contrary to earlier speculation, the fluid isn't in his lungs. Additional X-rays revealed that the fluid is pressing on William's heart and lungs, making it challenging for him to breathe. The treatment will probably take place on Monday. Unfortunately, we may not all have the quick hospital stay we had hoped for. To rule out heart failure, a fluid sample must also be analyzed. The sample of fluid should contain lots of sugar, indicating that it's dialysate. The nephrologist is confident that its dialysate. Given the volume of fluid in his abdomen, William was informed that it would be challenging to continue with peritoneal dialysis (PD) and that he has the option to switch to hemodialysis. Numerous invasive tests must be performed if he decides to continue with PD to ensure that the diaphragm won't leak once more. These tests are very hard on the body and there's a 50% risk that the results of these tests will show that he cannot continue with PD. We are both aware of the intrusive treatments performed on his body in March to try to rescue him. We both don't want to see that happen again. Hemodialysis seems the best choice going forward. The kidney transplant process: His nephrologist informed us during our conversation with her that the renal clinic isn't informed of a patient's progress at the transplant clinic. The two departments operate independently. Furthermore, a patient waiting for a kidney donation isn't often updated by the transplant clinic. William has no idea where he is in the process. William was cheerful when I left the hospital. We remain optimistic, accepting what is under your control and what is not. We appreciate all your emotional support. It means so much to us! Below is short video about the differences between hemodialysis vs peritoneal dialysis. ‐–-------‐‐--------------- 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. Automated peritoneal dialysis (APD) wasn't working properly for William's body. So the medical staff transferred him to manual peritoneal dialysis (PD) approximately a month and a half ago. Manual PD has its drawbacks. Fluid exchanges need to be done three times a day. Each exchange takes at least 40 minutes to complete. Not only did we have to initially adjust our lifestyle for dialysis, our lives changed again as we transitioned between the two forms of PD. We also needed to make adjustments to our physical and emotional conditions. Moving around outside the house was challenging with manual PD. The mid-day fluid exchange required William to do an exchange in the car or request a private room somewhere if we wanted to schedule a day trip outside of the house. This made it more challenging to maintain a sterile environment. Life is about accepting the challenges along the way, and not letting them defeat us. We now have a fresh obstacle to overcome. William started having trouble breathing last week. It appeared to get worse as the week went on. Yesterday, during a routine kidney clinic visit, a chest X-ray was taken. Unfortunately, it showed a possible leak of the peritoneal dialysis fluid across the diaphragm and into his right lung. This afternoon, William will be admitted to the hospital. The extra fluid needs to be drained by the doctors. Since the drain may prevent him from performing peritoneal dialysis at home, we may need to adjust our lifestyle once more to accommodate for in-hospital hemodialysis three to four times a week. Only four months have passed since William was released from the hospital following a one-month stay. He's not looking forward to returning to the hospital, needless to say. Both William's freedom of mobility and his job are missed. Every time there's a new development, I'll update this blog. Please check back for updates whenever is convenient. ‐–-------‐‐--------------- 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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