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Why patients should share their stories

Posted Nov 18 2008 12:18am

Traditionally, medical publishing has consisted of books and journals written by doctors for other doctors. The patient, who should be at the center of the medical universe, has always been ignored. Fortunately, this is now quickly changing, as we are recognising that patients are the true experts on their illnesses, and have valuable voices and opinions which should be heard. Many patients are now writing about their experiences, and sharing their stories, so that other patients can benefit from what they have been through. Reading such stories can be enormously helpful to doctors as well - it's very educational to learn what goes on in the mind of the person on the other side of the consultation desk !
I reproduce what one of our patients had to share about his experiences with IVF treatment at our clinic. This is so much more authentic and touching than anything a doctor could have written - and it's much easier for other patients to identify with this point of view. Anjali and I are proud and pleased to be Rajesh's and Bhavana's doctor - and now their friends !

IVF Success Story by Rajesh Jain, rajesh@netcore.co.in

This is the story of one couple’s dream to have a baby and another couple’s determination to make that happen.

Bhavana and I had been married six-and-a-half years when we first visited Dr. Aniruddha Malpani in April 2000. I had known him and Dr. Anjali Malpani earlier – through interactions I had with them in 1993-94 when I was trying to do an image processing software and needed to analyse ultrasound scans. That time, I went as an entrepreneur. This time, I went as a patient.

Going to Infertility specialists is not something one can discuss easily with family and friends (however close they may be). It is a difficult decision to make and it means that both husband and wife have to accept reality and make a joint decision to seek advice and help. While the Web can be a helpful resource in understanding problems and possible solutions, there really is no alternative to spending time talking with doctors. Especially, ones who are as warm, friendly and knowledgeable as the Malpanis.

Our first IUI was in November 2001. Everything went well. Even though one knows the statistics (only a 10% success rate), optimism is always high. So it was in our case. Those two weeks after the transfer are long days. When we finally did the pregnancy test and it came as a negative, it was a blow. “But, doctor, everything went well. Why did Bhavana not become pregnant?”

That is a question which is perhaps the hardest to answer for a doctor because there are many possible reasons and yet there isn’t one which will satisfy parents-in-waiting. We were to ask that question four more times over 2002. With each passing IUI, optimism began to get replaced with an acceptance of the reality. Perhaps, a baby was not in our destiny. Bhavana and I also discussed adoption on more than occasion.

We decided to take a break from it in 2003. Even more than the physical pain of all the injections, the emotional stress can be quite unnerving. With each treatment, there is expectation from the family – and that only serves to increases the pressure. And then there is the ticking biological clock.

We did our first ICSI procedure in January 2004. Again, everything went as well as it could have gone. Hopes rose again – what could be better than having an egg and a sperm be mated together! (We also had the “lucky room” at the clinic, we had prayed to all the Gods, and even the astrologers had foreseen a baby!)

I still remember the afternoon I went to collect the blood test report from the lab. As I waited, a number of thoughts flashed before me. While I tried to keep cool, I knew that in the report there lay the magical number that could possibly change our life forever. For a few fleeting moments, I imagined myself as a father.

When the report came, with a bit of trepidation, I opened it. The answer was what I had feared to think about. Bhavana was not pregnant. I made the call home and with a heavy heart made the short long journey home. Bhavana and I sat that afternoon and talked about life beyond. (We had gotten used to living life in one month increments in the hope that the next month would be different.) She was much more accepting of the situation than I was. My scientific mind kept thinking of why a baby could not be created than the eggs and sperms were absolutely fine. Why did we always end up on the wrong side of the probabilities?

Time heals, and so it was this time also. When we went and talked with the Malpanis (who by now had become very close friends), we were willing to call it quits. Going through this tension of the monthly cycles and ensuing disappointments was starting to take its toll. We wanted a finality to it all. We were willing to accept that we’d never have our own baby. We wanted life to move on.

The Malpanis determination was what brought the dream of parenthood back in our eyes. If they were not willing to give up, why were we? They were willing to try all options to help us become parents. This never-say-die attitude on their part was what brought us back to their clinic in July 2004 for our second ICSI procedure.

Like the previous occasions, everything went fine. But this time, I was much more guarded in my optimism. I decided I will not think about it at all. No more of the “what-if-Bhavana-is-pregnant” mindgames. If it happened, I’d think about it later. Else life would go on. Bhavana and I had decided that this would be our last attempt (something we had not told the Malpanis). Life had to go on.

I left for the US on a business trip a couple days after the procedure. The hectic schedule over the next two weeks left me little time to think. But I knew that the blood test was scheduled for August 16. As the date neared, I could not but think about the outcome. I was not very optimistic this time around, but there’s always that glimmer of hope which never ebbs away.

I was at a friend’s home in Atlanta. I knew when my mobile rang early in the morning that it was a call from home. It was Bhavana on the line. The Beta HCG levels indicated pregnancy! In fact, the high levels even suggested there could be twins – we had transferred four embryos. I could not hide my excitement but I was much more measured. After all we had gone through, I was not prepared to think so quickly about a different future. One step at a time.

When I look back, my muted response to Bhavana’s positive test was perhaps an outcome of the business ups and downs I am so used to in my life as an entrepreneur. Failure makes success sweet – but it also teaches equanimity. Success and failure are but two sides of the same coin. We had experienced five previous failures over the past four years. Mentally, I was ready for another one. When the news of the success finally came, I was still hesitant to accept that our long wait was over. After all, waiting was something we had become very used to over the years.

It was another week before I reached back home. Bhavana was doing fine. My parents were delighted with our “good news.” But the story had a few more twists.

The ultrasound scan showed three active foetuses. Triplets! That would be something. Suddenly, from imagining life without a baby, we started thinking how we’d manage with three! Maybe we should have transferred only two of three embryos…

The next ultrasound scan showed only two active foetuses. One had stopped growing. Our ecstasy turned to bit of a shock. But we decided to look at the brighter side of things. We still had twins to look forward to. Only for a week, though.

The next scan showed that another of the foetuses had stopped growing. There was now only one live foetus. Suddenly, the joy of a few weeks ago started to vanish. Each day brought forth its own suspense. The time to the next scan seemed to be the longest of our lives. The Malpanis started Bhavana on painful, intra-muscular injections. Even that was bearable. The emotional stress was more difficult to bear. If God wanted to take away, then why did he give us? What had we done wrong?

The ultrasound scan in the following week showed that the one remaining foetus was growing. A little happiness came back into our life. But now, we just had to take life one scan to the next. What more surprises were in store for us we did not know.

Luckily, there were no more surprises. Even though Bhavana’s vomiting and nausea continued through her nine-month pregnancy, the baby was doing fine and growing well. The weeks passed by slowly. We counted up to 20, and then down. Somehow, pregnancies that go across a calendar year seem so very long!

On April 19, 2005, Abhishek came into the world as a six-and-a-half pound baby after a Caesarian. I could not believe it till I saw him and held him in my own hands. He was a survivor, having seen the death of two of his siblings, and braved the odds to come into this world. Five years after our first meeting with Dr. Aniurddha Malpani and eleven-and-a-half years into our marriage, Bhavana and I were parents.

For me, the lasting memory of April 19 is when both the Malpanis came (separately) and held Abhishek in their hands. He is, after all, their creation. He is a triumph of their determination as much as he is our dream come true.

PS: I wrote a blog post shortly after Abhishek’s birth, followed by a longer letter. Here are also some photos of Abhishek .

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