Makram Khalife, a 71-year-old retired bank manager from Lebanon, shares how bladder cancer led to his kidney function declining and ultimately the removal of one of his kidneys.
What was your diagnosis or your experience with kidney disease, and can you briefly describe your experience or the treatment you have received?
About ten years ago, after urinating blood, I went to see a Urologist who diagnosed me with a Carcinoma of the bladder after an endoscopy and biopsy exam. The carcinoma was treated with a laser but unfortunately, this was unsuccessful and I was not cured. The doctor then proceeded to treat me with BCG rather than chemotherapy. [Editor’s note: Bacillus Calmette-Guerin or BCG is the most common intravesical immunotherapy for treating early-stage bladder cancer. It’s used to help keep the cancer from growing and to help keep it from coming back. BCG is a germ that’s related to the one that causes tuberculosis (TB).] I received this treatment three times a month for about four years. However, it did not cure me either, and my cancer returned.
The doctors then decided to operate on me and I asked for a cystectomy. The doctors removed my bladder and replaced it with a Novo’s bladder that they had made from my intestinal tissue. |
That’s when my kidney failure started, and I felt the situation was becoming more and more difficult. I was frightened because up to this point I had only read about chemotherapy and surgery in researching my bladder cancer. |
The treatment procedure itself was not that difficult but brought on several complications, such as urine bleeding and kidney failure. A few months ago, the doctors removed my left kidney, which was no longer functioning, with the right one remaining at about forty percent. In addition, they installed a double JJ stent in my urinary tract to improve its function, which must be changed every six months. [Editor’s note: A ureteric stent (also called a J-J stent or double-J stent) is a thin, flexible plastic tube that is curled at both ends to avoid damaging the kidney and urinary bladder and to prevent it from dislocating]
What was your level of education about kidney disease prior to your diagnosis/ involvement with KD and how has it involved since then?
I am university-level educated and before my illness, was aware of a few cases of kidney disease. However, during my treatment, I became much more knowledgeable with doctors explaining to me more of the medical details. I also did my own reading. I am approaching the disease in a mindful way and giving myself grace by admitting that it is very difficult for me. I accept that these are the cards I have been dealt and that thanks to the Lord, I am still around.
What or who did you find the most useful (resources, methods, sources, supporters) on your journey of continued kidney education?
I find moral support first and foremost in my faith, as well as in my wife, my parents, my doctors, and my strong character, which leads me to hope that I can manage my situation better and better with time. I also enjoy playing the piano, and exercising especially, jogging and swimming.
Are you involved in raising awareness about kidney disease among your family, friends, or the general public? Explain why or why not.
I mostly feel like this is a confidential and personal matter which is dealt with in private and differently based on everyone’s own perception. For me personally, I am not aware of many people around me with my specific disease. On a more organizational level, I am a member of the ISN’s Patient Liaison Advisory Group which aims to strengthen patient voices in policies to tackle kidney disease worldwide.
In a few words, what would you say to people who are not familiar with kidney disease to raise awareness about kidney health and how to care for their kidneys?
As I am myself an open and communicative person, I would appreciate interacting and exchanging with anyone in a similar situation if given the opportunity.
