Safia Farooqi* who is now in her early thirties was diagnosed with diabetes as a child. For most of her life, she has been aware of the risks and complications associated with diabetes and how it leads to kidney issues.
Closely monitored by doctors, she had a successful pregnancy, and enjoys every minute that she spends with her son who is three years old. Up until quite recently, her health was stable, but she didn’t know what was round the corner.
Noticing that her ankles looked swollen, she decided to speak to her doctor about it who ordered some blood work, as he suspected water retention. The blood work results and some other tests confirmed that her kidneys were failing. Her world fell apart when she was told that such a drop in her renal function was unprecedented. The doctors advised her that she may need a kidney transplant soon, but until a donor could be found, dialysis on a regular basis was recommended.
Questions such as how dialysis would affect her life ran through her head, even though denial and resistance seemed the best options at first. Would she remain independent or would she be handing over the control of her life to other people? How would she and her husband afford the prolonged treatment? Not many of us can imagine what she must have gone through mentally and physically, but we do know that health is wealth and even if there is a slight problem in our bodies, much pain and suffering has to be endured.
Dialysis and kidney transplant are both treatments for kidney failure, but in the last five to 10 years, people have become more inclined toward kidney transplants. In 2018, the number of kidney transplants reached an all-time high of 22,393, which is an increase of 6.5% as compared to 2017.
A kidney or renal transplant is a treatment option when you are dialysis-dependent, and when your kidney function lowers down to about 10% to 7%. A transplant can provide you with a better quality of life for the next 10-15 years. But being dependent on dialysis for most of your life is not only difficult, it is also pricey. For a middle class family, it is not easy to pay Rs 61,100 per month or about Rs 0.5 million per year, hence transplantation is preferred over dialysis. But that preference is not always well-informed or educated.
It is important for people to be aware that their life will change after a kidney transplant. They must know what the procedure entails, what complications may follow, how will they adapt and what lifestyle changes they will have to make.
“Illiteracy is a blessing for us as well as a misfortune,” says Dr Sumbul Nasir, a nephrologist at Ziauddin Hospital, Karachi. “Being uneducated and unaware of kidney complications, majority of kidney patients and their families who come to us give us a free hand to do anything to save their lives. But this becomes a curse when they have no idea what to expect after the surgery. A series of costly tests are required before and after surgery. There are communication issues that make the situation worse.”
According to a (which?) study, 12.85 million Pakistanis above 30 years of age have some degree of renal impairment, but only 2.3% are aware of it. When they opt for kidney transplant, they are mostly unaware of what kind of a situation they need to be prepared for afterwards.
Cancer and rejection
There is a higher risk of cancer after kidney transplantation. It can be any type of cancer, varying from skin cancer to any organ cancer. But the most common and important complication that may occur after a transplant is rejection.
There are two types of rejections, acute and chronic. Acute rejection is a type which can occur anytime in the first year after surgery and can be treated successfully, while chronic rejection is mostly considered hazardous for patients, because unlike acute rejection, it develops slowly over a period of time, its causes are not easily understood and the treatment is often unsuccessful.
“This happens in about 5-7% cases,” says Dr Nasir. “Mostly, it happens because patients quit taking their medication after 2-3 months, as they may not be able to afford the expensive medicines.”
Besides cancer and rejection, high cholesterol and lipids in the bloodstream are most common after transplants, which puts you at risk for high blood pressure and heart issues.
A lot of medicines affect the immune system of a patient and can expose the patient’s body to fungi and viruses, such as in viral infections, respiratory infections especially influenza, respiratory syncytial virus and Covid-19. Post-kidney transplant patients, especially women, are more prone to urinary tract infection, which is a bacterial infection. It occurs usually in the first month of post-transplant with a prevalence that ranges from 7%-80%.
Even if you are not a diabetic patient, you can become one after kidney transplant, especially if you have a family history of diabetes or are obese.
Anti-rejection medication causes high blood pressure and high cholesterol which ultimately leads to heart disease. The number of years the patient has been on dialysis also plays a major factor in development of heart disease.
Experts also say that transplant is another route to dialysis. Even after a transplant, patients may need dialysis for the rest of their lives. So what you were trying to avoid in the first place can become a part of your lifestyle after a kidney transplant. To opt for kidney transplantation is a risky decision that patients should evaluate carefully.
It is also an expensive procedure, as just the pre-transplant tests may cost Rs 0.2 or Rs 0.3 million. Private institutes may charge Rs1.5 to Rs 1.8 million. In case of complication after surgery, the cost can go up to Rs2.5 to Rs3 million.
In government hospitals, the surgery costs up to Rs1.1 million, while post-surgery medication can easily cost up to Rs30,000.
The Sindh Institute of Urology & Transplantation and Dow University of Health Sciences (DUHS) provide free of cost or subsidised kidney transplant services.
At the DUHS, the patient only has to pay half of the total cost,” says Dr Kashif Kazmi, a senior nephrologist. “But it only includes pre-surgery, surgery and medication for three months, after which the patient has to bear the cost of the follow ups and medication, which is not easy for the middle class.”
Since, the majority of our population earns a monthly income of not more than 50-70k, post-transplant expenses are a regular problem even though they might have managed to dish out funds for the surgery.
“Before opting for a kidney transplant, patients must work out a budget for their expenses over the next 10-15 years for medications and follow up treatment,” advises Dr Nasir, clarifying that a transplant does not mean that the patient’s kidney issues have come to an end. “If they run out of funds in 2-3 years, there is little chance of survival of the post-transplant patient without proper medication. Since some medicines can cause infections, 2%-3% of patients can get kidney failure in 2-3 years after transplant, and in certain cases, the life span is only about 6-7 months.”
Since the majority of patients are uneducated, they don’t understand how improper medication and going to quacks and street clinics can damage their kidneys. It is important for them to be fully informed and counselled on kidney disease and its complications. Apparently, there is a huge difference between the counselling done in Pakistan and in other countries.
“Abroad, doctors make sure to inform the patient about even the 0.01% chance of any risk involved, to avoid a lawsuit against doctors later if something went wrong,” says Dr Nasir. “But here, patients and their families lack proper knowledge and accuse doctors of any and all post-transplant complications that may arise, even if it has nothing at all to do with medical negligence.”
Also, there is a general misconception that people can eat and drink what they like after transplant has been done. “My father has been admitted to the hospital for transplant surgery,” says Faisal, who attends to his father during the hospital stay with the misconception that after a kidney transplant, his father will not need medicine or medical care anymore. “I pray that three months pass quickly, so that we don’t have to worry about anything and don’t ever have to see a doctor.”
Patients not only suffer from rejection problems, but there is a high risk of cancer, heart disease, high cholesterol, and bone disease. So before going for kidney transplantation, one must evaluate carefully whether they are going to end up having fewer problems after the transplant or will it bring a new bundle of diseases for them and create never-ending expenses.
“We have a few kidney care institutes but way more kidney patients, which builds pressure on these places and that is why counselling problems occur,” points out Dr Kazmi. “Kidney transplant is not an easy procedure at all, but a big responsibility. Most people who come for a transplant are not aware of its consequences. Because of a few kidney care places and limited resources, sometimes cases can get complicated.”
In Pakistan, a limited number of nephrologists struggle under big workloads so they cannot always counsel every patient thoroughly. Although hospitals are working to resolve the counselling and awareness issues of the masses and patients, the pace is slow.
One must always ask the doctor in detail about the post-op scenario. If there are no heart problems, diabetes and the patient is generally healthy, the doctor can find an alternative way to get rid of renal issues or impairment.
Secondly, with limited finances, a kidney transplant is not a good option as it may entail high medication expenses after surgery. Getting a new kidney does not mean that you have gotten a ticket to a carefree, perfect and healthy life, as there is lots of adaptation and lifestyle changes involved.
After budgeting your finances and getting all the information you can, the following can be attended to:
Be careful with anti-rejection medicines, and daily doses and stay in touch with your transplant team.
Do follow ups religiously to make sure all is working well.
To protect yourself from infection, maintain good hygiene practices and stay away from contagious illnesses.
Avoid all kinds of live vaccines, as the body’s immune system has weakened by anti-rejection meds in heavy doses, a live vaccine can create complications.
*Name changed to protect privacy.
Maleeha Kiran is a freelance contributor. All information and facts are the sole responsibility of the writer