Deepak - Interview 12
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Deepak has a family history of kidney disease. His grandmother died of kidney disease, and his mother died of the illness when he was only twelve. Two of his brothers also died of kidney disease and, later, when his sister was diagnosed, Deepak wanted to donate one of his own kidneys to her and began having tests. The tests and re-tests showed that he had very early stage kidney disease himself and would need to change his diet. This news came as a shock to Deepak, who was only in his early 30s and had two young children, a four-year-old and an eighteen-month-old.
Deepak said he gave up smoking and changed his diet. He continued working and his job involved a lot of travel. As the disease progressed, he became extremely tired and later, as his kidney function decreased further, he stopped urinating. Eventually, he went on peritoneal dialysis, which involves using the patient’s peritoneum in the stomach as a membrane across which fluids and dissolved substances are exchanged from the blood. Fluid is introduced through a permanent tube in the stomach and flushed out either every night while the patient sleeps or via regular exchanges throughout the day. Its main advantage is that the patient can have treatment without visiting the hospital.
Deepak thought he might have to wait up to eight years for a kidney transplant but, only two weeks after dialysis, he was given a kidney transplant. His new kidney worked for a few hours but then stopped for about eight days. These were the most difficult days for him.
Deepak said, ‘Day seven I particularly remember as one of my darkest days in my life where I remember telling my wife who came to visit every day, “Look, that’s it. I’ve had enough. I’ve been ill. I’ve gone through this operation, been cut open and all these tubes coming out, just why don’t you do me a favour. I think we’ve got enough savings to keep you going, to have a normal life, the house etcetera, just pull out one of these plugs because I’m ready to die. Dying would be better than this.” On day nine, the new kidney started to work and Deepak’s health began to improve.
Deepak said his life was completely transformed by the transplant and that it has given him ‘a second chance’. Fifteen years on, he now travels again and is able to eat normally. He has follow-up appointments every four months and, though on long-term medication, has a good quality of life. The whole experience has given him a deeper appreciation of life and God.
Deepak is heavily involved in raising awareness of organ donation and kidney transplants, especially amongst South Asian communities in the UK, where kidney disease is more prevalent than in other communities but organ donation registration is proportionately lower. He has appeared on television, radio and in magazines, and met with British South Asian religious leaders to learn more about their views on organ donation. Deepak said that he has had a lot of support from his family, his faith, and by having a positive attitude.
Deepak is married to Celia, Interview 35.
For Deepak having kidney disease was an emotional roller coaster that effected the whole family....
It was a very strong emotional roller coaster really from very strong lows of feeling “Oh my goodness, I’m a failure. I’m letting my wife down. We had two children, four and just under two, two boys, very grateful for them. But we wanted four children. We wanted a daughter, and so that was difficult having to tell my wife, “Look, for your sake, I think we shouldn’t have any more children.” And it was a totally rational decision, but it’s a very emotionally difficult decision, especially if somebody likes big families and comes from a big family.
So that was quite an emotional down for us to think, my goodness. And then the reality of “My goodness, if I have kidney disease and I have to give up my normal work, how do I afford things? How will my family cope? What about finances?” Again that has a whole roller coaster affect on people. And so that was quite difficult because again we felt that we wanted the best for our children, as everyone does.
Going through the illness is quite difficult because again you can’t do normal things, like if it’s a nice day, just think right lets go down to the coast for the day. Or let’s go and visit family and relatives up in Leicester or wherever. You really have to plan and so, what we call a normal, healthy family life, just gets totally undermined really.
The quality time as I call it, just doesn’t exist. You’re always watching the clock for your next dialysis session. The kids are growing under that influence. Mum has to come to the hospital, so it creates a lot of uncertainty in the family and emotional ups and downs.
We did have our highs obviously. You know, when things are going well, and for periods kidney disease is not the worst thing that can happen to people, believe it or not, even though when I was facing it I felt that was the worst that can happen.
Deepak had to be assessed before his name could be placed on the transplant list. He needed to be...
We knew we were on the kidney organ donor register. I had met with the transplant surgeon because, before you go on the organ donor register, they do a complete check on you. Receiving a transplant is not the easiest thing in the world. People have to be physically strong enough, so the heart and the ECG and everything else has to be done. But also emotionally strong enough to go through with a transplant, which I obviously didn’t know then.
But my transplant surgeon was very good and he asked me the right questions to make sure that I was prepared. Talked very clearly about the consequences and the side effects of long term medication. And the fact that a transplant doesn’t necessarily last forever. It could last for ten to twelve years on average. Some last longer, some less. But the possibility of rejection is always with you, and the discipline of taking medication is very, very important. So I took those on board.
After looking on the internet, Deepak discovered that South Asians were more likely to get kidney...
I was told by the transplant surgeon when I asked him, “How long will it be till I get this phone call?” “Well,” he said, “Normally,” at that time, this was 1995, “It takes between two to four years for a transplant because the waiting list is very high in the UK.” At that time there were about 5,800 I believe, people waiting for a transplant. And he said two to four years. But he said, “In your case, you will probably have to wait six to eight years.” And I must admit that was a bit of a shock to me. And I then did a fair amount of research on the internet to find out what’s this is all about.
Initially I must admit that I thought it was racial discrimination. Being an Asian in this country I felt, “Oh okay, White Caucasians receive it within two to four years, but Blacks and Asians receive it in six to eight years.” So I thought, “Oh there’s a bit of preferential treatment etcetera.” And I’ve since been forgiven by the medical profession in believing that.
But I did a lot of research and basically I found out a number of things' number 1 that South Asians have a higher tendency to kidney failure because of primarily hypertension and diabetes, which can work together towards kidney disease, end stage renal failure as it’s called. We have a six to eight times higher propensity to kidney failure than white Caucasians.
Number 2, forty percent of us have positive B blood group, as opposed to most people in this country who have O’s and A’s. Therefore from the available organs, they’re not the best match because obviously with a transplant you want the best blood group and tissue typing. But the blood group is very, very important for the long term sustainability of the kidney.
The third thing was that most Asians and Blacks do not sign up to the Organ Donor Register. Traditionally, typically, historically. And that got me thinking because at that time the statistics were something like 0.4% of the population, of the Organ Donor Register are Blacks and Asians, when they represent about 6% of the population. So that got me thinking a lot. Anyways, I had all this information in the background.
Shortly after surgery, Deepaks new kidney seemed to stop working. When it wasnt getting any...
It started working when it was transplanted. However, within a day, or even less than a day, a few hours after the transplant occurred, it slept. It just stopped functioning, which was a real cause of concern to me but apparently less to the medical staff even though at that time, medical records later on that I discovered, my creatinine was 2600. The norm is 100 for a man. So it was way above and medical records have proven that I was five days from dying if things weren’t fixed.
And that was a great cause of concern, even though my doctor kept telling me, “Look, I’ve got 100% track record. I’m not going to spoil my reputation because of you.” Which was slightly comforting but worrying as well. And that was quite difficult. Having been through an operation, having been unhealthy and obviously the toxins are continuing to build in your body. Of course, being in a hospital and not being able to eat what you want and be with your children. I had two young children, four and just under two at that time. And that was a very difficult time, being separated from family because we have a very close family.
Day seven I particularly remember as one of my darkest days in my life where I remember telling my wife who came to visit every day, “Look, that’s it. I’ve had enough. I’ve been ill. I’ve gone through this operation, been cut open and all these tubes coming out. Just why don’t you do me a favour. I think we’ve got enough savings to keep you going, to have a normal life, the house etcetera. Just pull out one of these plugs because I’m ready to die. Dying would be better than this.”
And that was difficult. That was very, very difficult. And I’m a strong believer and I have a strong faith, and I knew there were hundreds of people praying for me. Not just in this country but some of the other countries that we’d been in. And that gave me a bit of reassurance to keep going, as did my wife as well. And it was day nine actually that the kidney started to get better.
Deepak said he had more energy after his transplant than hed ever had before. He felt hed been...
It was quite strange actually having been a very active person, and then had to resign myself to not being an active person, even though I was like late twenties, early thirties. I was acting like a fifty-year-old person, twenty years my age, or older than I was. And that was quite difficult. I think more for myself than anybody else because that’s not what you imagine or envision life to be.
After my transplant it was quite remarkable actually. I still believe it was a miracle transplant, for all kinds of reasons and the doctor said, “My goodness, you’ve kicked back, almost from day one after the ten days that it didn’t kick in.” And I felt that my energy levels peaked even more than before my illness. And so I was quite hyperactive almost, wanting to do this, wanting, maybe trying to make up for lost time in a way.
But I just wanted to do this, go here, go there, go there, and nothing was a barrier. So I didn’t feel sleepy at all. In fact I didn’t need, forget about not needing naps in the afternoon. I used to just sleep for six or seven hours and that was enough. While when I was healthy I needed my eight hours sleep.
So there was a lot of energy, a lot of drive and everything else. And I believe that’s because it’s a super kidney that’s been given to me by my gracious God really. I’ve had very, very few side effects. I’m on very, very low medication through these fifteen years and I just give thanks that that is the case.
But yes it was an emotional high in a way, and I was trying to get everybody on that high as well. “Look I’m healthy, let's do this, let’s do that.” So the last, after the transplant in the fifteen years, I’ve probably been more productive than I was in the first thirty years of my life.
Deepak was on more medication before his kidney transplant. His doctor explained why taking the...
I remember the first few days my nephrologist [kidney specialist] said, “You have to come here every day.” And I said, “Oh that’s a bit of a bore.” And he said, “Well you don’t actually understand what’s happening here. You have received a foreign object in your body, which the body would naturally choose to kill, i.e. reject. Because it’s a foreign body and the body’s natural defences would try to remove it, like influenza or a flu.
What we’re doing is, with this medication, especially the anti-suppressant medication as well as all the steroids and everything else… interestingly before I was on a transplant, when I was ill, I was on I calculated about 28 different types of pills every day, including phosphates and calcium and everything else. After my transplant, I was hardly on five or six, which was quite a relief to be honest.
But he told me the anti-rejection drugs chemically fool the brain and basically tell the brain and the body, “This is an OK object. It’s not a foreign object. It’s okay to stay in the body.” Which is why they are extremely potent and actually toxic. Too much of the medication will cause even the kidney to fail, but also liver problems, heart problems. I know quite a number of people who have had kidney disease, who have had a transplant and then they’re on the anti-rejection drugs, previous no case of heart disease [clicks fingers], heart attack. And thankfully I’ve been spared of that.
So it’s a very fine balance between how much to give, too much can kill the other organs, too little will stop the kidney working. So it’s a very fine balance, which made me appreciate the medical profession all the more.
Long term, obviously one has to be on the medication for a long time, but as I said compared to pre-transplant, it’s nothing compared to it. It’s just a handful of medicines and that one takes depending on blood pressure, etcetera. But it’s a totally different lifestyle. The quality of life is transformational. It’s just the one word I could use.
There is a lot of information on religious perspectives and organ donation. Deepak believes...
There has again been a fair amount of research done. There was a conference a few years ago that I was involved in which looked at the inter-faith perspective on organ donation. It should be available on the web actually. It was a whole report that was up in Bradford, the conference and all the different religions, Jewish, Buddhists, Zoroastrian. We had all different leaders giving their perspective.
Now that’s research material. They have gone through the religious books and they have studied it, and they are making these recommendations. So I would encourage you know, the NHS has also created leaflets of other faiths, a faith’s perspective on organ donation. Which are available in some of the hospitals, especially where there are large faith-based communities. And get a hold of those. They’re fairly basic but it gives you a good starting point. And then of course find out for yourself, resolve within yourself.
But I would encourage you, in my understanding, in my fifteen years of being in this area, number 1 most people don’t mind giving of their organs. Yes because of religious reasons, other reasons perhaps 10 to 15% of the population might object to it. But don’t let that stop you from registering because story after story can be told of people who have unfortunately passed away. And one of the biggest legacies they have left behind is that they’re signing the organ donor has allowed people like me and many others, up to seven people, who might benefit from an organ, whether it be a heart, whether it be a cornea, a kidney etcetera.
So it’s probably the biggest legacy we can leave behind. And, as one campaign said a few years ago when I was involved with National Transplant Week, ‘Don’t take your organs to Heaven, Heaven knows we need them down here’. And I think that really captures whatever religion, faith, background you are, that captures the essence of why we’re doing this.