Lalitha Nair, 49, talks about the pitfalls of suddenly falling victim to a life-threatening condition. Her experience and survival tips – from timely medical check-ups to insurance.
When did you have the kidney transplant?
I underwent kidney transplant on 3 Nov 2006 in a hospital in Bangalore. I was 41 years old.
When were you diagnosed with kidney problem?
Mid-October 2005
What were the early symptoms?
Nothing that was terribly alarming or significant. I went for a routine checkup to my General Physician one weekend, since I used to have intermittent fever and was very exhausted. I was then diagnosed with High Blood Pressure (200/230) and was referred to a hospital for a cardiac check-up immediately. After 4 days of hospital stay and all tests, nothing significant was diagnosed. However, my GP suggested that I do a routine urine examination for creatinine and urea since he had identified protein loss in the urine, and suspected that I may have an underlying kidney problem. This, too, was not a serious diagnosis but more of a gut feel.
Is there a history of kidney disease in your family?
No
Please describe your experience of managing your kidney disease.
Very challenging since I wasn’t prepared for the sudden deterioration of my health situation. Even when I started regular treatment under senior nephrologists by end 2005, I was told that eventually (in about 5 to 7 yrs) I might have to be prepared for dialysis / TXP (renal transplant). However within 6 weeks (ie by mid-Feb 2006) my condition started worsening day by day and my saga of ICU visits started.
To my bad luck, hospital tried a treatment on me that went wrong. Their intentions were good. Since I was young, had no family medical history and was ok otherwise, they thought they would do a renal biopsy to identify the root cause of the problem, and, hopefully, reverse the situation.
But doing the renal biopsy ruptured my already soft kidney and I had internal bleeding. Haemoglobin levels went down drastically and after a fortnight in ICU and life support – I survived.
By then, dialysis was on – food intake went to zero, regular weight loss was a routine feature. I went down from 48kg to 28 kg by TXP time.
Due to severe internal bleeding due to biopsy, lots of other organs went awry. I had pancreatitis, gall bladder problems and I had to stop working. Cystoscopy, colonoscopy, scans etc became part of my daily routine. On an average, I had 2 weeks of hospital stay every month for 11 months for a variety of such ailments.
Blood clots, deep vein thrombosis etc became a regular feature. Getting a good vein was an issue, so dialysis was conducted from a slit in the throat area for all 11 months. Two attempts to move it to hand and leg failed. Keeping the neck area infection free was also a challenge.
A friend came forward as a willing donor in August 2006, but then legal matters took a while to get approvals. Once those were ready, again my own fitness levels to undergo this surgery were a challenge. Finally doctors decided that I would not make it to 30kg, which was the least accepted weight. They decided to perform my operation at 28kg.
As fate would have it, the initial surgery was a failure. I did not pass urine (after 20 minutes of surgery which is the norm). Doctors waited for 5 to 6 hours, and then the transplanted kidney started losing colour and sheen. The urologist then decided to take one last chance and opened me up again to fix the connection.
It worked. Slowly and steadily, a urine stream of 1ml started and the new kidney was working.
What is your present condition?
I am reasonably healthy after the transplant. I will be on immunosuppressant, steroids and vitamin supplements for life.
What medications are you on?
Tacrolimus (Pan Graf) 1.5mg a day
Myfortic (Mycophenolic acid) – 360mg twice a day
Steroid Wysolone (Prednisolone) – 5mg
Aten (Atenolol) 25mg – for Blood Pressure
Oesteofos 70 (Alendronate sodium)– Once a week for bone
Calcium (usually found in combination with Vitamin D3 etc)
Laretol (Vitamin D or Calcitriol)
Folic (Folic acid/ Asfol/Vitafol etc)
Iron (Livogen)
Supradyn (multi-vitamin)
Rosavel (for triglyceride control)
Revelol (Amlodipine)
Febuget (Febuxostat) - for gout
Stanlip (Fenofibrate) - for cholesterol control
Are there any side-effects of the medicines?
Initially yes. A bit of stomach upset and bloating. Not any more. Only steroids’ usual weight gain issue still lingers. I am 56 kg now, which is double of what I was 8 years ago.
Any diet restrictions?
Not really. I have to eat freshly cooked food and if possible home-made. I have to stay away from food from unhygienic roadside stalls. I have to make sure potassium level does not shoot up, so I stay away from fruits such as bananas. No hard liquor. An occasional drink of wine or beer is ok.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
There were many challenges, mostly personal. I was out of a job, so loss of Income. I was bedridden and dependent on staff to run the house. I had personal issues as well. There were significant monetary issues. Insurance did not cover much, so raising funds for surgery and post-operative care, too, was a challenge.
The legal procedure for the transplant was cumbersome. I was in Bangalore but not a domicile, so I had to start from getting a ration card and other paperwork to get legal clearances. I needed consent from spouses of donor and recipient, face-to-face meeting at the Ministry with a panel that approves organ transplant.
All this was indeed frustrating. My health condition did not permit me waiting at the ministry personally but it wasn’t enough for them to be convinced that I was in need of a transplant.
My advice:
• Be prepared for all medical exigencies. Once you are sick, you will not get insurance. Even after you become alright like me, you will still not get insurance in India.
• Make doctors accountable. Don’t let them experiment on you, even if the intention is good.
• Be regular with check-ups and tests. A lot of people I know skip these after a couple of years and have landed in trouble. Just follow the doctor’s advice.
Have you learnt anything in managing in your condition that you wish you knew before?
Yes. Looking back, maybe I did a lot of antibiotic abuse during early twenties. This may have caused harm to my kidney. Quite unsure of this, but this could have been one reason. For want of any other scientific reason for my illness, I presume this could have been one reason. Hindsight is so easy.
What kind of specialists do you consult and how often?
I still do routine nephro tests once every three months and visit a local doctor in Kochi, where I have relocated. Tests are repeated, whenever I think anything is not normal or after a bout of fever / illness.
What resources are available to you in your city to help you manage the condition?
We have good hospitals and doctors.
Have you had to make some changes to your lifestyle because of your condition?
Yes. I quit my job. Cannot take stress. Need rest.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
No. Not taking any more chance.
Has it been difficult emotionally to cope with your condition?
It was difficult in 2006, but not after the transplant.
How has your family supported you?
I have not much immediate family. My parents were not alive. No kids. My siblings offered the best support they could. There is only so much someone else can do. I learnt to fight it out myself and not to give stress to others. In any case, sympathies don’t help.
