Battling life-threatening illness at 18

A teenager named Fatuma* (real name not revealed due to ethical reasons), aged 18, was referred from Singida with the main complaints of general body swelling, difficulty in breathing, cough, easy fatigability and itching.
Upon physical examination she looked sick, with high blood pressure, puffy face, legs and feet were swollen, her abdomen was distended with signs of water therein  (ascites), a heart murmur was heard and abnormal lung sounds were heard.
The reasons for referral were; a heart investigation, kidney function investigation and for advanced management including possible dialysis.
Fatuma came at the centre dressed in pink gown that looked somehow dowdy as I attended to her.
She stays with her aunt since her mother’s divorce more than a decade ago. Her mother remarried, thus she most often felt so despondent since she does not enjoy motherly care as others do, and moreover she is a standard seven leaver.
She had been sick for so long. She has had a history of hypertension during pregnancy.
When I asked her grandpa who brought her to the hospital as to why they didn’t bring her in earlier, he responded in Swahili, “tulikuwa hatujui kama atakuja kuumwa sana kama hivi, lakini hata tungejua hatuna pesa za kumtibia.” (Loosely translated to mean that they did not know she would get really sick and they did not have money to treat her.)
Thus after carrying out a battery of tests, we came to realise that the teenager had chronic kidney failure stage 5 and heart failure.

Did she know anything about the disease?
 You know sometimes in Bongo, patients are not interested to know what they suffer from, rather they are  more interested in quick symptomatic recovery.
Fatuma never indicated any sign of wanting to know her problem, however her grandpa eventually asked me about what ailed his granddaughter.
Thus I had to explain to this old man as he bombarded me with a lot of questions.
Then I expounded, “Mzee, one of the important role of the kidney is to clean your blood. As the blood moves throughout your body, it picks up extra things like fluid, chemicals and wastes,” he interrupted and laughed, “wastes!?”
Then I continued, “Now, the kidney separates these materials (including wastes) from the blood it has carried out of the body in urine, but Fatuma’s kidneys can no longer do that,” he then looked shocked!
Chronic kidney failure or chronic kidney disease (CKD) as many doctors in Tanzania prefer to use, can be fatal if not detected early.
Therefore CKD can be described as gradual loss of kidney function and in its early stages, one with the disease may be asymptomatic. Sadly, CKD may become apparent when and if your kidney function is significantly impaired, and those symptoms are non-specific. CKD can progress to what doctors describe as “ESRD” (end stage renal disease), which is fatal without artificial filtering (dialysis) or kidney transplant.
Symptoms  include, nausea, vomiting, loss of appetite,  fatigue, sleep problems, decreased urine output, muscle twitch and cramps, swelling of feet and ankles, persistent itching,  chest pain and shortness of breath if fluid builds up around the lining of the heart and lungs respectively, and high blood pressure that is difficult to control.

What caused Fatuma’s CKD?
This is one of the questions that I was asked by her grandpa. CKD occurs when a disease or a medical conditions impair kidney function bringing forth kidney damage. The causes can be one  of these;  diabetes mellitus, hypertension, glomerulonephritis, glomerula inflammation, interstial nephritis, polycystic kidney disease, vesicoureteral reflux, recurrent kidney infections, but for this teenager high blood pressure was considered as the major cause.
Risk factors include, diabetes, hypertension, heart and blood vessel diseases, smoking , obesity, family history of kidney disease, abnormal kidney structure, and older age (though Fatuma was just 18).

Did she develop any complications?
Of course. Fatuma had some complications like, anaemia. Mind you she had a low levels of haemoglobin, she had electrolytes/body minerals imbalance, and fluid buildup in the lungs and other parts of the body as narrated above.
So other complications for CKD can be blood and heart diseases, bone and muscle weakness, damage to nervous system, decreased immune response and reduced fertility.

Was Fatuma treated accordingly?
Till now Fatuma is still getting dialysis service in Dodoma, however she is facing financial challenges of which doctors, some good Samaritans and the social affairs department are part of endeavours to give her a boost.
Her grandpa did a commendable and tremendous task to look for funds and is currently negotiating with the hospital and UDOM/ Benjamin Mkapa Hospital Dialysis centre and social affairs departments.
Fatuma’s treatment involves dialysis and when we explained to her grandpa about this kind of treatment he even panicked. Dialysis is very expensive and she needs 156 dialysis sessions per year, three times a week. A single session costs Sh400,000 up to Sh600,000 and on top of that she will have to do that for the rest of her life unless she undergoes kidney transplant, a service that is not even available in Tanzania.
The author is a medical doctor, public health activist and a researcher based in Dodoma.