After launching in the fall of last year, the A.C.T.I.O.N. project is nearing the completion of year one, focusing on the engagement of patients and community members to gain feedback on their overall healthcare experience and experiences specifically related to living donor kidney transplantation (LDKT). COVID-19 is disproportionately affecting racialized communities in Canada and the U.S., exacerbating health equity issues that have gone unaddressed for far too long. The work of the A.C.T.I.O.N. project feels especially significant in this context. […]
We are pleased to announce the acceptance of our paper Organ Donation and Transplant: The Islamic Perspective into Clinical Transplantation, authored by Abeera Ali and co-authors from the team, as well as Dr. Shabir Alibhai and Ani Orchanian-Cheff.
Islam is the second most practiced religion in the world with the number of Muslims in the West steadily increasing. Previous studies have found that compared to individuals from other religions, Muslims had more negative attitudes toward organ donation and transplantation. It was also found that Muslim patients in Toronto being assessed for transplant were less ready to
pursue living donor kidney transplantation compared to Caucasian non-Muslims. Many religious patients and healthcare providers rely on guidance, we believe it is important to summarize the opinions and rulings of Islamic bodies with regarding organ donation and transplant.
Table 3 summarizes the opinions of Muslim scholars and ruling bodies of both the Shia and Sunni Sects
This paper also identified key factors and concerns such as: mistrust of the healthcare system, lack of information, family opinions, sacredness of the body, lack of clear understanding from religious leaders and more.
We hope to use this research and partner with Muslim organizations to develop an educational toolkit for Canadian Muslim patients and their families on organ donation and transplantation.
On March 22nd, 2019, the Kidney Health Education and Research Group and the Imam Tora at the Muslim Association of Hamilton came together to discuss kidney disease and organ donation. During the program, a Muslim woman from the local community who has chronic kidney disease shared her story. She spoke about her personal experience with kidney disease, undergoing dialysis treatment, and being evaluated for transplant, in the hopes of helping people better understand what it’s like to live with kidney disease. Such stories can help raise awareness of kidney disease and encourage discussion amongst community members about organ donation. Please read her touching and courageous story below:
Asalamalaikum (may peace be upon you). I am a 40-year-old female suffering from chronic kidney disease that has caused renal failure. My kidneys no longer work, and I am waiting and praying for a transplant from a live donor. For the past six months, I have been on dialysis, and it has been a very rocky road.
Kidney failure has many causes. Many people associate kidney disease with poor blood sugar management among diabetic patients. This is not the case with me, although it is what was originally suspected. I was diagnosed with diabetes and my semi-annual lab tests were indicating too much protein in the urine. This is a hallmark of kidney disease. After some attempts to treat it, my endocrinologist (diabetes specialist) referred me to a nephrologist (kidney doctor). In 2012, I underwent a kidney biopsy and the results showed that I had a specific type of kidney disease, unrelated to my diabetes. The nephrologist’s exact words to me at that time were “This is a disease of decades – it will not affect you until your 60’s or 70’s”. Medication could not be given because kidney disease is treated by blood pressure medication and my blood pressure was already low. From that point on however, I was closely monitored by the nephrologist to follow the progression of the disease. My treatment since then has been at an in-hospital kidney centre, which is home to numerous specialists including the transplant team. It is an excellent team of doctors , nurses (who do all the educational sessions and training sessions, as well as many of my follow-up tests), a dietician (who monitors my blood work and makes adjustments to my diet accordingly), and also a social worker (who is there to provide help in obtaining financial aids such as tax credits and medical insurance, as well as provide emotional support and short-term counselling when adjusting to the life changes associated with being on dialysis and/or preparing for a transplant). Alhamdulillah (praise be to God), I am so very grateful for the care I have received from all these health care professionals over the years.
Doctors, of course, are not all-knowing and cannot predict everything. My nephrologist was wrong in believing that the kidney disease would progress over decades. Fast forward to the end of 2017 and things took a surprising turn. My kidneys had deteriorated too much, and it was time to start talking about transplant. I was shocked. I had no idea this was coming. I had imagined having to do dialysis at some point in my old age, but a transplant had not even occurred to me. The doctor explained that for a young person like me, transplant was the best option. A new kidney would mean no more kidney disease if the transplant was successful. A foreign kidney can be rejected at any point in time and therefore, anti-rejection/immune-suppressing drugs must be taken for the rest of the patient’s life.
From that point on, my life became information sessions and a long series of medical tests over several months that are needed to assess whether I am physically a suitable candidate for transplant. Although doctors were hoping to avoid dialysis for me, the different types of dialysis were also briefly described in the information sessions and I was asked to choose which method I would want implemented in case of emergency.
With regard to transplant, a kidney can come from a deceased donor (this saves lives so please sign your organ donor card when renewing your driver’s licence) or a live donor (age 18+ in Canada). Unfortunately, the waiting period for a deceased donor is several years depending on blood type and priority is given to those patients who have been on dialysis the longest. Living people can also donate a kidney, since healthy individuals are able to function perfectly well on one kidney – Allah (God)gave us a spare! The advantage of receiving a kidney from a living donor is that the recipient’s life expectancy becomes a little bit longer. However, finding a match is not a simple process. The slightest health condition such as anemia can rule you out as a donor. Furthermore, finding a live donor is the patient’s responsibility – the hospital I attend has created a pamphlet of tips on how to go about finding a donor.
My potential donor is my younger brother. Of my two brothers, only one has the same blood type as me. He has been undergoing a series of medical and social emotional evaluations to determine whether he is 1) a match and 2) in good enough health to donate. The donor’s health is considered top priority since the recipient is already sick. No risk is taken in the very strict process and potential donors are easily rejected if there is any risk to their future health. The medical assessments for the donor are also more extensive than the recipients. My brother tells me he has approximately 30 medical tests to undergo.
As for myself, most of my medical tests were completed within about 6 months, but I am still waiting for a definitive answer on whether a transplant can work for me. It has been over a year and still no answer. They still have questions and are investigating. Also, until I am officially deemed a candidate for a transplant, I cannot be put on the waiting list for a deceased donor. My advice to anyone in the position of needing a transplant is that getting all your tests done ASAP is crucial because the results take a very long time.
While all this testing was being done, another surprise came along during one of my follow up appointments. Dialysis could no longer wait, I needed it right away. Within days – another shock. I remember finding this out on the day before Eid-ul-Adha. My family had just finished our Eid brunch when I got a call from the hospital telling me to come in and get admitted right away because my surgery to insert my dialysis catheter had been arranged. I was not prepared for this at all. I had no idea things would move that fast. By the end of that day, I was in my hospital room, awaiting surgery the next day. Prior to surgery, I did not even know that when I awoke, I would have a permanent tube coming out of my stomach. Realizing this and accepting this new physical change was emotionally very difficult. But Allah helps us to adapt to any situation as He did with me in this case. Now I am simply used to the tube being part of me.
As I mentioned above, there are different methods of dialysis these days. The traditional method is called Hemodialysis and is very invasive as it takes the blood out of the body to filter it and remove toxins and then puts it back in. This is a 3 to 4-hour process done several times per week and is apparently exhausting. It also limits your life activities very much because it takes over your schedule. My doctors and I wanted to avoid this, and I opted for the more modern version known as Peritoneal Dialysis (PD), which uses a fluid infused into the abdomen to remove toxins from the body. The surgery I had was to insert a catheter or tube into my stomach that connects to the dialysis machine. The advantage of PD is that it is done at home, by the patient, usually overnight (mine is a 10-hour process), and so it is less disruptive to daytime life. Hence, PD is more appropriate for younger people who need to remain active. The hospital I attend has an entire unit dedicated to home dialysis patients and there is extensive three-day training on how to do your dialysis at home before they come to your place to set you up. It is a very good program. There is also a nurse on call every evening until 11pm for assistance and is able to make home visits until that time if necessary. Also, all medical supplies are provided to my home every two weeks – free of charge of course. Alhamdulillah for our healthcare system. Still, the process of setting up every night can be tedious, and emotionally draining. I find myself often delaying it late into the night and then having to summon all my willpower to get myself connected for the night. Alhamdulillah, most nights Allah gives me the strength.
After my surgery, dialysis began within two weeks. It was right after Labour Day and the next six months were a nightmare for me. My experience is not typical, I am told, but my six months were filled with complications, infections, rapidly deteriorating health including constant stomach pain, vomiting, inability to eat solid food, trips to the emergency room (where I would wait hours for an ER doctor to see me, have no idea what to do, and then call a nephrologist, which would take another several hours), and obviously extreme weakness and zero energy. I frequently returned to the dialysis unit for adjustments to my dialysis program. Nothing seemed to be working and I became more and more sick as the months passed. Finally, this past February, things got really, really scary as I began to swell up and worst of all, lost my vision. Apparently, I was retaining too much fluid because neither my kidneys nor dialysis were working well enough to remove excess fluid from my body. There was fluid buildup around my heart and inside my lungs causing severe coughing and breathing difficulties and preventing me from lying down (I would sleep sitting during the nights). Eventually the excess fluid started accumulating inside my eyes, causing internal swelling and loss of vision for two weeks. It took four trips to the ER within 10 days before I finally got an appointment with a senior nephrologist. That doctor was the one specialist who realized that my dialysis was not adequate and ordered a much more aggressive regime. Alhamdulillah, that is when things started to improve drastically and now, I am getting better. I still suffer from exhaustion due to too many toxins in my blood, but Inshallah (God-willing) in time that will get better too.
This entire ordeal has been an emotional roller coaster not only for me, but for all my loved ones. Perhaps most affected are my parents and then my siblings because they see me suffering constantly. It breaks my heart to see the looks of worry and sadness on their faces. My parents are constantly doing extra prayers for my health, as are other relatives around the world as well as my loving friends. I am so blessed to have so many dua (prayers) being said for me and that is my comfort and hope and what keeps me going. For myself, it has not been an easy journey. I have lost my career ( I cannot work), and my social life (I am never well enough to keep plans), my independence (I rely on my family for everything from rides to appointments to picking up medical prescriptions) and basically suffer a lot of depression and fear. The idea of having a transplant gives me some hope, but it is not without conflict. I am blessed to have a sibling who is ready to give me a kidney –but accepting that is not easy for me. I hate the idea of putting my baby brother at risk by undergoing surgery and giving up a kidney. I would rather keep doing dialysis the rest of my life than see any harm done to him. To help with these doubts, the transplant team has connected me with a person who has had the experience of donating a kidney. Still, I am not emotionally ready to accept my brother’s kidney. But I have to put my trust in Allah. Allah Hu Alim (God knows best). I find strength in talking to Allah and in reminding myself that this is a test and I am being purified by my Lord – my sins are being forgiven, Alhamdulillah. I must be ever-patient, as was my great inspiration, Prophet Ayoub (Job) Alayhi Salam (Peace be upon him).
10 months later
My hemodialysis treatment continued for several months and while it became easier on my body with time, there were many ups and downs and I continued to be quite unwell. Finally, in October of 2019 I was taken to hospital via ambulance because I had accumulated so much fluid in my lungs that I was unable to breathe. I was sent to ICU and a breathing tube was inserted in my throat and I had to have extra dialysis sessions to remove the fluid.
It was only after this incident that I feel my condition was finally taken seriously by the nephrology staff, which is unfortunate as I had been suffering for a whole year. After the stay in ICU, I was referred to a gastric specialist who knew immediately why I had been suffering from constant nausea, vomiting, lack of appetite and weight loss for the past year. It was due to the toxins in my blood that dialysis was not removing. They prescribed a medication and within days, my life changed in that I could eat again. While I am so grateful for this, I continue me to remain baffled as to why it took a year, and a life-threatening experience plus a trip to ICU for this to be identified as a kidney failure-related issue
The other thing that changed was that the nephrologist who was on rotation in the dialysis unit after my ICU stay realized that I need to be prepped for transplant as soon as possible. This meant making me healthy enough to undergo surgery. They intensified my dialysis treatment and within two months, got me well enough to have the surgery. If you will recall, taking a kidney from my brother was a decision I struggled with right from the beginning. However, with reassurances from this doctor that it was the best way, and after much prayer, I decided to go ahead with it.
Alhamdulillah in December 2019, I received a kidney from my younger brother. Both our surgeries went well, and the transplant was a huge success, mainly because it was such a close genetic match. I was out of the hospital in the minimum amount of time.
Recovery was a bit of a bumpy road as I ended up back in the hospital two weeks later, with a potential heart problem (which has since been ruled out, thank God). And side effects from the antirejection medications are harsh and difficult to deal with – I continue to struggle with this.
Nevertheless, I now have a perfectly functioning kidney thanks to my brother and by the will of God. My creatinine is under 70 (as opposed to over 1000 when I was on peritoneal dialysis) and I am on the road to recovery. My brother is also doing well and after a two-month recovery period, is finally back at work.
Alhamdulillah. My family is eternally grateful for this amazing miracle.
Thank you for listening. Please keep me in your dua.
God bless. Jazakallah Khair.
Article by: Kiran Alavi
Our February Lunch & Learn – Addressing Racial & Cultural Barriers in Living Kidney Donation & Transplantation – started with the lived experience of patient partner, Carl Hicks, a kidney transplant recipient. Following Mr. Hicks, Dr. Istvan Mucsi, Lydia-Joi Marshall and Noor El-Dassouki discussed racial inequities in access to living kidney donation and transplantation – examining both statistics and patient experiences. The importance of community-led research was highlighted by Lydia-Joi Marshall, a co-investigator for the A.C.T.I.O.N. Project.
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