Chapter 5: Trying to keep my mind off the disease
While all this was happening, I had a hard time trying to keep my mind focused on work. The problem was aggravated since my office was just a floor above my house and I was not getting away to a different environment even for a few hours. Since I knew that I also had the same genetic condition and since my Creatinine was now above the normal range, I had got it in my mind that it was just a matter of time before I suffered from Kidney failure as well. Especially since the day the Nephrologist had told me that I had maximum 3 years before I suffered from Kidney failure myself.
In January 2009 I decided to take a second opinion from the consulting Nephrologist under whom my sister was getting her dialysis done. He was a young chap. He immediately rubbished the theory of my previous Nephrologist about definite Kidney failure within 3 years. He said that he had seen many patients stable with a Creatinine of 2 and he said that we should try and keep a goal of keeping my Creatinine stable between 2 and 2.5. I was quite happy to hear this. I asked him if I could take Ayurvedic medicines and he told me to avoid as these medicines could contain metals that were harmful for the kidney.
However, I thought that what if I could bring down my Creatinine a little by taking the Ayurvedic medicines, I would have more time on hand before I suffered from Kidney failure. So I started with the medicines again. Now the medicine had an effect of enlarging the kidney. Typically in a lot of kidney patients, the kidney size shrinks and its functioning decreases and hence these Ayurvedic medicines worked by enlarging the kidney back again and improving its functioning. However as I was a polycystic Kidney Patient kidney my kidney size was already large due to numerous cysts. After ten days of taking these medicines I suddenly woke up one day with tremendous pain in my flanks where the kidney is located. I rushed to the Nephrologist who was not too pleased to hear that I had taken Ayurvedic medicines inspite of him telling me not to. He examined me and came to the conclusion that there was internal hemorrhage in my kidneys and hence the pain. He asked me to get an ultrasound of my kidneys done and show him immediately. When I got the ultrasound report and went to him, he was speaking with the surgeon in the hospital. He said that they could carry out a surgery to drain the blood and stitch any source of hemorrhage that they find. I was quite alarmed to hear that and refused to think about a surgery. So he said ok lets get an MRI done and a hemoglobin test. If MRI shows bleeding and if the hemoglobin has come down it would confirm hemorrhage and then I should come for the surgery otherwise not.
I rushed to the other hospital that had an MRI Machine. Getting an MRI is not easy. I was made to lie down on a bed attached to a very large machine and while I was lying down, my hand and feet were strapped to the bed. The bed was then gradually moved into the machine that enveloped me completely. It got quite claustrophobic. I could hear loud hammering noises while the machine went about its work of taking detailed pictures of my internal organs. Thankfully, this hospitals machine was the latest and it was open a little above the head level reducing the claustrophobic feeling to some extent. Also they gave me earphones with music playing on it to reduce the effect of the hammering sound, however it was not able to suppress it that much.
When I went to collect the MRI report, the radiologist at the MRI machine center in that hospital, could not conclusively say where the hemorrhage was in the kidney as the cysts were numerous in numbers and some of them were filled with blood. Any one of them could have ruptured as the kidney tried to expand due to the effect of Ayurvedic medicines. However he told me to stop ayurvedic medicines immediately. The hemoglobin test showed that it had come down, but I was not too keen to go back to my Doctor for any surgery.
The same day my brother-in-law who is in the army had come over home and once I shared my fears about a surgery, he made me speak to a senior army doctor on the phone. The Doctor said that surgery would not be of much help and that the hemorrhage could heal on its own. He told me that I could take some painkillers if the pain was too much. I readily agreed and decided to wait it out. The pain was really quite unbearable and it took almost 5 days before I felt ok. Needless to say I had stopped the Ayurvedic medicines and threw it all in the trash.
This was in February 2009 and I decided to take my mind off my kidney problems and avoid the Nephrologist for some time. I felt that it would do me good if I stopped messing with myself for sometime and get my mind off my kidney failure. However it was easier said than done. Whenever I had free time in office or home I would look up the net for the latest advances in treatment of kidney failure or treatment of ADPKD (Adult Dominant Polycystic Kidney Disease) from which I suffered. What I read on the net was part encouraging and part disappointing. I read about medicines discovered that were promising to cure ADPKD by reducing the cysts and stopping growth of further kidney cysts and were in various stages of clinical trials but I also read that it would take probably another 5 – 10 years before they were available in the market for patients. I just hoped that I would stay fine till then so that I could benefit once these medicines became available since the site also mentioned that these medicines would be effective only in the early stages when cysts were small, but if cysts had enlarged the medicines would be able to do precious little.
It was the month of August and just before my 37th Birthday that I decided to get my kidney function tests done again. The lab physician came to my house in the morning around 8 am to take the blood sample. He told me that I could get the report by the evening by either viewing it online on the net or I could go to their clinic nearby to collect the hardcopy. I somehow had a bad premonition and I was very nervous about seeing the report.From 4 pm onwards I kept checking the net to see if the report was ready. It was only around 6 pm that the report was uploaded and I was horrified to see that my Creatinine had shot up to 3.5. I was filled with dread of what lay ahead. I decided to keep the report to myself and just focus my mind away from the problem and think positive. I had recently read the book “The Secret” which talks about the power of positive thoughts. I decided to focus on my business and not think about my ailment at all.
The first thing I did to divert my mind was to look for a commercial office property that I could buy and shift my office from my residence. I surveyed properties in Delhi and Gurgaon and finally zeroed in on a wonderfully located good looking commercial property located in a Mall next to the upcoming metro route in Gurgaon. I purchased it outright and spent the next 3 months renovating and furnishing it. The excitement of this whole activity kept me quite busy, but the strain of going to supervise the work going on there while the office was being renovated was quite a bit. Since there was no place to sit and workers were working there making the air conditioning ducts, false ceiling, flooring etc I had to go and stand there for 5 – 6 hours a day and that was not good for my legs that had already taken some trauma earlier and I used to come back home with painful and swollen feet.
In Dec 2009 I inaugurated my new office and shifted my office from my house to this new office in Gurgaon. As the number of employees I had was less, I again realized that I had free time and very soon I was again surfing the net to check how kidney failure progresses once you have a Creatinine above 3.5. I also looked up videos on Dialysis and was not too pleased to see the size of the dialysis needles. As I have mentioned before, even the normal needle prick for a routine blood test and the sight of blood being taken out was quite something for me to bear and here in the videos I was seeing huge needles and 4 hours of blood moving in and out of the body while a person was on Dialysis.
I decided to increase the number of employees so that I had no free time to let my mind wander. I went to the campus of a large MBA institute in Delhi known for churning out large volume of students each year. This institute then found it difficult to get placements for its students and kept approaching firms like mine regularly to come for campus hiring. So I went and hired 5 students from there. I also took in another 5 freelance consultants who were folks from premier institutes and had work experience. The next few months kept me really busy training and supervising these employees and consultants, going out with them for client meetings, or for lunches on events like employee birthdays etc. All this improved the office environment and my mind was sufficiently diverted. The year 2010 passed without any negative event health wise and I did not get a single blood test done in the whole year. However this peace and tranquility was to be short lived.