My story: Zainab Khan

Zainab Khan, a representative of Kidney Research UK

“Please look after your health so that you don’t have to endure heartache. Prioritise your health, you can buy anything but not health.”

How old are you?
46

Can you tell us a little about yourself?
I am an easygoing person who works well with everyone. I am outgoing and love meeting new people, enjoy integrating with people of all different backgrounds and cultures. I can communicate in several Asian languages and it gives me great satisfaction and pleasure to help the Asian community and I often act as an advocate. I am an interpreter and also a translator.  Frequently I assist voluntarily at local community centres, festivals and events etc.

I have several hobbies, however, my real passion is cooking Asian food.  I enjoy learning new skills but here are just a few to keep me busy in my leisure time, silk painting, glass painting, mehndi (art of henna)  learning via browsing the internet.  I really enjoy creative arts and crafts and assist in workshops working with children. I enjoy relaxing by doing gardening.

What type of kidney disease do you have?
I had chronic end stage kidney failure.

How long have you had it and when was it diagnosed?
I have had kidney problem since 1980′s.

How did you recognize you had the illness before it was diagnosed?
My kidney problem was first recognised in the 1980′s but was actually diagnosed in 1990. My GP sent me for a urine test and the test indicated protein in my urine. My GP referred me to a Consultant for further investigations.  On further examination they diagnosed hypertension (high blood pressure) and acute kidney failure.

Did you have any symptoms?
My general symptoms were overall tiredness, extreme weakness and anemia. I would also experience dizzy spells and headaches, loss of appetite and unable to gain weight.

How does it affect your general health?
I was eventually put on to peritoneal dialysis 4 times a day. This meant having to exchange bags at regular intervals. My times of home dialysis were 8am. 12noon, 4pm and finally 10pm every day four times a day seven days a week. The exchange process lasted approximately about 25-30 minutes. I had to be in close vicinity to my house in order to do my exchange on time.

If I had to go to an event I would either take my dialysis box with me. I would have to arrange for someone to drop me off along with the exchange bags.  I was constantly worried about my dialysis exchange and I was unable to go out as often as I wished. The reason being I would become ill suddenly with peritonitis, severe stomach cramps and vomiting which meant being hospitalised close to home.

Every day was different some days were good and some days were bad. I spent more time in bed. I was actually limited from travelling so far I had to return before the evening. It was a constant dilemma. I was always clock watching.  I missed going out with my friends for a good few hours to relax, enjoy the food, or day trips due to being away from home. Dialysising on time was paramount. My diet was completely different to my family.

I was put on a strict potassium free diet which meant eating no chips, oranges, bananas, crisps.  I had to limit drinking water to one and half litres water. Some days I would have water retention which meant shortness of breath, feeling very tired and relaying on my mum to do my exchanges. My mum would constantly be reminding me about taking my medication on time. I would often become forgetful.

What about now?
I had been waiting on the transplant list for twelve years.  I finally had a kidney transplant in 2007 at University Hospital Coventry. Fortunately I do not require kidney dialysis.

How does it affect your day-to-day routine?
Currently my health is fine. But I still have to visit my Consultant for regular tests to monitor my kidney transplant progress.  The reason being I am taking medication for the kidneys to prevent anti rejection.

Are you restricted in what you can do?
No, fortunately I am not restricted in anyway.  I can do what I want to do whereas before i had to worry about dialysing.  I feel a great burden has been lifted off my shoulders.  Thank God!   Now I am free to eat what I want but i am very choosey about what I eat. I put on a lot of weight after my kidney transplant and it took me 6 months to shed it off.  Now I eat healthily and regularly exercise. I enjoy jogging, whereas before I would become breathless walking. I feel great that I have overcome all my hurdles.

What is your future prognosis?
The future prognosis is good.  Fortunately, the kidney transplant went very well.  Thanks to all the prayers. This has given me a complete new lease of life. Thanks to the entire Transplant team for performing an excellent job

How does Kidney Research UK help?  
Kidney Research UK has helped me a lot to raise awareness by participating in charity walks, such has London Bridges Walk 2009 10km where I raised £1200 for the very first charity walk I did after my kidney transplant in order to raise money for research to help other people who are suffering from kidney disease.

Last year I participated in London Bridges Walk 2010 13km and raised £850.  Since I have got involved with Kidney Research UK I want to help everyone especially the BAME communities via raising awareness as they really lack so much knowledge in this area, since there is a shortage of organ donation.

I would to help everyone who is suffering from any form of kidney disease. KRUK aims to find better treatments and hopefully a cure for kidney disease. All the money donated by generous people is given to KRUK to research and help save lives. Since over three million people in the UK and threatened by chronic kidney disease. The more money raised, the more life saving research.

How did you find out about Kidney Research UK?
I was introduced to the website of KRUK via my sister who was browsing the internet regarding Kidney Research.

Has Kidney Research UK helped your quality of life?
KRUK has given me the strength to go help raise donations to help other kidney patients.  The work that KRUK are doing is aiming to research in order to save lives and find the causes of kidney failure. I have really spent tremendous amount of time reading about this organisation as it has really inspired me to  help others.  This has really motivated me to go on further and invest in this excellent charity and make a real contribution myself.  My own experience of kidney failure has definitely changed my attitude, especially being a kidney patient towards anyone, especially the kidney patients.

This is my way of saying “Thanks!”  Something very close to my heart which I am sure will help other kidney patients.  I also participated in the British Transplant Games at Warwick University Coventry. I was very proud to be the only Asian women from Coventry to not only participate but specifically to highlight kidney disease amongst BAME communities. I participated in the Coventry Transplant Team and won 1 silver medal and 3 bronzes medals for Coventry.  It was my very first event I never expected to win any medals so I was delighted to have even won. I still cannot believe my luck.

Kidney Research UK has definitely changed my life. The Kidney transplant has definitely changed my attitude towards people, especially ill people. In September, I launched a Transplant Saves Lives Organ Donation to highlight the differences and improvement that organ donation can achieve.  This attracted many people and highlighted the importance of organ donation. I also support Blood Pressure Association. Personally suffered a brain hemorrhage and chronic kidney failure, which are complications resulting from high blood pressure.  South Asians are a higher risk for heart disease and diabetes so to promote awareness I participated in 5k Santa Run London Greenwich Park and raised £300.

Please feel free to add anything else
My goal is to raise money in order to find a cure and help save lives.  Hopefully one day we can eradicate this problem. I would like to say a very big thank you to University Hospital Coventry especially Consultant M E Edmunds, Transplant Team, CAPD Team and Ward 50.  Also a big thank you to my GPs Dr Bland, Dr Beaumont (Hillfields Health Centre), for being very caring and supportive throughout my illness. A great thanks to all the kind people who generously donated £850 for KRUK- it’s people like you who make a difference to people’s lives.  I thoroughly enjoy working for KRUK because it gives me a real buzz to know that I am doing something worthwhile rather than watching a movie. I enjoy helping others that gives me great satisfaction and really makes me truly smile.  When I meet people I always introduce myself and then give KRUK a mention. That way everyone who wants to donate will turn to my charity.  I have met many nice people, made new friends and complete strangers just get touched by my life story and just want to donate.  The happiest day in my life was when the phone rang from University Hospital Coventry. The Kidney Transplant Co-coordinator said “We have got good news for you. A kidney has been donated and we need you to get to the hospital quickly in order to carry out further tests”.  This was better than winning the lottery. This is the moment I was waiting for. I just could not believe what I was hearing. My life has changed forever. A new lease of life

My advice to others is “Please look after your health so that you don’t have to endure heartache. Prioritise your health, you can buy anything but not health.”

I hope I can continue my charity work with KRUK and become a peer for KRUK. I believe I have the potential and am determined to succeed with my full potential once I am given the opportunity. People’s attitudes have really changed towards charities such as KRUK.  I have noticed a lot of people’s attitudes have changed especially after I give them a quick summary about my health.  They always give generously and say that you have changed us. You are our inspiration.

Many of our Asian communities are really beginning to take great interest especially because I tell them about my health and how I managed to overcome my health problems. My message to everyone is to look after your health before it’s too late. I hope after reading my story it will inspire others to get out and help sponsor people like me, any other charities.  Everyone is very supportive and understanding which is great, the message is finally getting through. Having survived a brain hemorrhage against all odds – given only a 2% chance of surviving -  and then having a kidney transplant and living to tell my story hopefully should inspire others to support charities such has KRUK. I am living proof that health can return, so do not give up. Good health can prevail.  I shall be doing another London Bridges Walk in July 2011.