Six years of normalcy


March 2006, Chennai, India

"We're here to meet Dr. Georgi Abraham."

"Doctor has not yet come, sir. Please wait. You're the sixth in the list."

"Sixth!", I thought to myself. After he comes, it would be a good one hour atleast. My dad and I settled down in the waiting area on one of the upper floors of the Madras Medical Mission Hospital at Mogapair in Chennai. The hospital was called 'Triple M Hospital" and was one of the centers Dr. Georgi Abraham visited.

As we waited for Dr. Georgi to arrive and pass his verdict on my condition, I reminisced about the last few years of my life. How different they had been from the two years before that. The last six years passed by like lightning. It was an almost normal life.

I could almost see it happening in front of me. March 1999. Kamineni Hospital, Hyderabad's dialysis unit. It had been a few weeks since my graft nephrectomy (removal of the transplanted kidney) because of HUS recurrence. My transplant had failed and the kidney was causing a few problems. So, it had to be removed. I was by then, back on thrice a week dialysis.

I had heard about Peritoneal Dialysis (PD) and also read about it on the internet. This was a modality of dialysis where a catheter is inserted into the peritoneal cavity of the body. The peritoneal cavity has a semi permeable membrane and is surrounded by blood. So, dextrose solution is filled into the cavity by means of the catheter. Movement of impurities and excess fluids in the blood happens through the semi permeable membrane into the peritoneal cavity.

After a few hours of residing in the peritoneal cavity, the now saturated dextrose solution is removed through the catheter and fresh fluid is infused for a fresh cycle of cleansing to happen. The process of removal of the old fluid and infusion of fresh fluid is called an 'exchange'.

It sounded quite promising. Diet and fluid restrictions were minimal. It could be done at home. Many people were able to lead quite a normal life with it.

PD was very rare at that time. About 5% of the patients who needed dialysis did PD. But I had decided that I wanted to try it. I badly wanted to regain my life.

One day, I decided to ask the nephrologist treating me, Dr. Shastry about it. For some reason I was sure he would say no and that would be the end of it. So, I lay in bed, the needles in my left arm, going about the routine of pulling out the impure blood, passing it through the dialysis machine and then returning it into my body, unmindful of the anxiety in my mind.

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"How much more time is Dr. Georgi going to take?"

"We don't know, sir. He said he is on his way."

It was back to the waiting area. It was the beginning of summer in Chennai and the waiting area had one humble fan. It was a little hot.

PD had given my life back to me. To think I expected Dr. Shastry to refuse to let me try it!

Dr. Shastry came to my bedside that day, many summers back and did the usual examinations. I asked him if I could try PD. "Sure", he said. The next session, the other doctor, Dr. Dakshinamurthy came to me and said that he had arranged for the representative to come and meet me and plan to start PD. I was getting excited. This was exactly what I had hoped for.

The Baxter rep, Venkatramana came a few days later and explained the whole process. I was also continuing my reading on the internet.

Basically, there would be a small surgery where they would insert the PD catheter somewhere in my stomach and then they would train me for a few days in hospital and then once I got the hang of it, I would be able to go home and do it on my own. Now the surgery usually leaves a slightly biggish scar on the stomach. But these days there was an increasing use of laproscopy to do the PD catheter insertion which caused only a small scar. An experienced surgeon from Australia was going to be visiting the hospital in a few days for a transplant of a small girl. They had arranged for him to do my PD catheter surgery too.

Surgery day came and went without too much of a fuss and the catheter was in place.

A day after the surgery, I had a lot of sharp stinging pain in my lower abdomen. They said it was the tip of the catheter touching nerve ends in my peritoneal cavity. The pain would go once fluid was infused. But that could not be done till the surgery wound healed.

A few days passed. It was time for the first infusion of fluid. All this while I continued hemodialysis. I had fluid and diet restrictions. I was eagerly waiting for PD to start so that I did not have to bother about restrictions. They started with 1 liter of fluid. I could feel a slightly cool liquid filling within me. It was a rather strange sensation.

After a couple of hours, they removed the fluid. It was colored yellow, pretty much like normal urine. Which was not unexpected at all since this was sort of replicating kidney function! Fresh fluid was infused.

Over the next few days, the volume of fluid was gradually increased. Eventually I was doing 2 liters every exchange. Initially there was a little discomfort in my stomach with the fluid in it. I would actually be relieved when the fluid was removed. But I did not mind it at all. I soon threw caution to the winds where it came to my fluid and diet restrictions! And I wasn't feeling bad at all.

I eventually went back home from hospital and the routine was kind of set. Four exchanges every day - the first when I woke up every morning, the second before or after lunch, the third around 5 in the evening and the last before sleeping.

I had to be very careful about infections. Now, PD involves a catheter that is coming out of the stomach and the chances of infection are very high. So, I had to wash my hands thoroughly before an exchange. Every morning, after a shower, I had to clean the 'exit site' or the point where the catheter came out of my stomach with some povidone-iodine solution and then cover it with gauze and tape it securely.

"Doctor has come". There was suddenly a flurry of activity near the reception of Dr. Georgi Abraham's consulting room. The doctor had arrived. This was the second time I was going to be meeting him. There was still some time however. Five people were to see him before I would be shown in.

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Within a few months I had become quite comfortable with PD. The best part was there were no diet and fluid restrictions. I did put on some weight and flab because of all the glucose that was being absorbed by my body from the dialysis solution. I couldn't care less however.

I soon decided to take up atleast a part time job. I was feeling wasted and needed to get some activity for my brain! I took up a part time job with a family friend's software company. I would go to their office in the morning and return in time for my lunch time exchange. After lunch I would work from home.

I strongly believe that I could not have worked had I continued hemo. Well, everyone is different and what is true for me may not be true for others. But for me, I can easily say - PD worked like a charm.

That year I did the unthinkable. I went for a vacation to Kodaikanal, a hill station. This would absolutely not have been possible on hemo because the nearest dialysis center was a 4 hour drive away. One other thing that made vacations on PD possible was Baxter's excellent PD network in India. You could go to pretty much any place and there would be a supplier of dialysis fluid close enough.

I soon took up a full time job. Obul, a friend of my uncle's and I along with a few others started a software company called Effigent. I would do two exchanges at work in a separate room and would work the whole day there.

Things couldn't have been better. My work was good. I had no diet and fluid restrictions. No needles being jabbed into my arms every other day. The only problem was the two exchanges during the day. The morning and the night too were not a problem. It was only the middle two.

I discussed this with Dr. Shastry who suggested that I could consider a cycler. The way a cycler works is that you hook up to a machine at night and the exchanges are performed automatically with shorter dwells (a dwell is the period between exchanges when the fluid is cleansing your blood). That way, you do not have to do anything during the day.

The only problem is that the machine is not portable so you need to do manual exchanges during the day when you go out of town or are away from home.

We did a test called the Peritoneal Equilibrium Test. This test basically determines the rate of transfer of solutes across the peritoneal membrane. The test would indicate whether I was a 'low transporter' or a 'high transporter'. High transporters were more suited to PD using a cycler because the dwell periods were shorter on a cycler and you could get more out in a shorter period of time. Low transporters, on the other hand, are more suited to manual exchanges because the dwell periods are longer and you need the extra time so that more can be pulled off. My test returned a result of 'low average' which did not rule out a cycler but meant I may not get very good dialysis. We nevertheless went ahead with Automated PD at night using a cycler.

During this period, I changed from Dr. Shastry to Dr. K S Nayak, who was known to be a PD specialist. More than that, Dr. Nayak visited a hospital much closer to my house than the one Dr. Shastry operated from.

We did another vacation, this time in Mahabaleshwar, another hill station the next year. I did manual exchanges during this trip.

I was now leading an almost normal life apart from the exchanges at night on the cycler and morning post shower dressing of the exit site. Of course, if I lifted my shirt, to expose my stomach, you would see this cloth pouch tied around my stomach holding a plastic tube. The sight can be quite unnerving to the uninitiated!

A few months later, I switched from Dr. Nayak back to my original doctor Dr. Girish Narayen due to a difference of opinion on the brand of cycler to use.

I had finished about five years of PD by April 2004. I was featured in the 'PD Heroes' section of Baxter's quarterly newsletter.

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In December 2004, a few friends and I planned a trip to Mahabalipuram in South India at a beach resort. We reached on Christmas night. The next morning, the tsunami struck (you can find a more elaborate account of this here).

My catheter and exit site were completely in the filthy water that the tsunami brought with it. I took strong antibiotics immediately and for the next few days. There was no immediate problem.

A few months after this incident, one morning, while cleaning my exit site, I noticed some puss around it. My exit site was infected.

I quickly called the Baxter Clinical Coordinator, Venkatramana. He came over and examined the exit site. I went over to Dr. Girish Narayen and he put me on antibiotics and I was asked to do the exit site dressing twice daily. We also sent the puss to the lab for a culture.

I had no fistula at this point. Dr. Girish Narayen suggested that I get a fistula made in case we needed to do hemodialysis at some point. I thought that would be an overkill. I mean, why would I ever need to go back to hemodialysis? This was a small infection and we could take care of it. But I went with Dr. Narayen's advice.

Dr. P. C. Gupta, an amazing person first and then an excellent vascular surgeon was to do the fistula. I was wheeled into the Operation Theatre (OT) for a surgery that was expected to take about an hour at most. I was awake during the surgery. Dr. Gupta and his assistant surgeon were working on the fistula on my upper left arm. I was following their conversation and after about an hour, the conversation sounded like they were about to wind up. However, the conversation suddenly became a little worried and they sounded a little perplexed.

I was wondering what the hell was going on. After a few minutes Dr. Gupta said, "Mr. Shah, there is a small problem. The vein seems to be blocked and we're not getting a good flow. We will need to connect this to another vein and this may take some more time." There was nothing more I could say apart from "Ok doctor."

What was supposed to take one hour finally took about three and half hours. My family outside the OT were by now panicking. What was going on? When the surgery was finally completed, they were told about what had to be done. So, I finally got a new fistula which, at that point, seemed totally unnecessary to me. I could not have been more wrong.

The exit site puss culture identified the bacteria as the dreaded pseudomonas aeruginosa.

I had attended a medical conference on Peritoneal Dialysis about a year back sponsored by Baxter. Usually such conferences are attended by doctors and technicians. But I knew one of the senior executives in Baxter, Harish Natarajan. He offered to allow me to attend to learn more about what's new in the PD world. I had attended a session on infections and I remember the speaker mentioning that infections due to the pseudomonas family of bacteria are hard to eliminate completely.

The exit site infection was however controlled within a few days. But unfortunately, that was not the last I had heard from the deadly pseudomonas.

A few weeks later I developed a tunnel infection. The tunnel is the path the PD catheter takes from outside below your skin finally to the peritoneum. An area of my skin above the tunnel had become red and swollen. Sure signs of an infection. I took oral antibiotics again and it looked like the infection was cleared.

The doctors however decided to reposition the catheter because of the recurrent nature of the pseudomonas bacteria. So, I underwent a surgery where the catheter was repositioned. The peritoneal end of the catheter was in the peritoneum itself. Only the outer end of the catheter was repositioned to take another path.

To no avail.

The tunnel infection recurred. The pseudomonas devils had still not given up.

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At that point it was decided to remove the PD catheter, give the whole area some rest, let the infections be totally cured and then put in a new catheter. I would need to go back for some time on Hemodialysis after all. Dr. Girish Narayen's experience had helped.

So, back to the operating table. The PD catheter was removed. And I was back after more than six years on what I hated the most in life - hemodialysis. Back to the needle jabs, back to the diet and fluid restrictions. But I took solace in the fact that this was a temporary phase and I would be back on PD soon.

We waited for a couple of months and then planned the re-insertion of the new PD catheter. Another surgery. Except that at the end of the surgery, the pain was unbearable. Usually, they give you a lot of pain killers and once the effect wears of, there is pain but fairly well controlled by oral pain killers. But this time, for some reason, on the way back home from hospital, the pain was so bad, I was actually crying with pain. Once we reached home, I took some strong pain killers and the pain reduced.

So, I was now back on PD. I started manual exchanges gradually. For some reason however, the efficiency of the dialysis had reduced. The amount of water that was being removed was much less than required. While this was being investigated I had to do a few sessions of hemodialysis so that I was properly dialyzed. So, I was doing both hemodialysis and PD for a while.

This was a complex problem. We did not know how to handle it. Why was the efficacy of the dialysis reduced? It was most probably due to the adhesions that had formed in the peritoneal cavity due to the large number of surgeries I had.

I had often come across the name of Dr. Georgi Abraham on the internet in the context of PD. I decided to go to Chennai to consult with him on this. We met Dr. Georgi Abraham in Chennai's Triple M hospital. Dr. Abraham seemed like a very concerned, affable person. He analyzed all the evidence and then suggested that we try Extraneal solution instead of Dianeal solution. Extraneal solution was another type of PD solution and he thought we might be able to get a better clearance with this solution.

Extraneal was not yet being used in India. But I managed to get a few bags through Harish Natarajan of Baxter. I tried Extraneal solution but this did not make any difference to the clearance. I was still unable to get enough dialysis.

We decided to go back and discuss this with Dr. Georgi Abraham.

"Mr. Kamal Shah". "Yes". "Please go in". It was my turn to see Dr. Georgi Abraham. This was a crucial meeting. We were going to ask him if we could remove the catheter and wait for a few more months. Would the adhesions clear out and would I be able to go back on PD again. This was more like a judge pronouncing his verdict. And I was really anxious. How would this meeting end? Will there be hope for the future? Or will it be back to hemo? I could take a few more sessions of hemo if there was the promise of returning to PD later. All this was running through my mind as I entered Dr. Georgi's room.

"Good evening doctor."

I settled down and explained to the good doctor how the extraneal had not worked. He listened intently. I then asked him the question.

"Can we remove this catheter and wait for a few months, maybe even a year, and then can we expect the adhesions to clear out and is there a hope that I can go back to PD?"

"No. This will not happen. The adhesions will not clear out. You will need to go back to Hemodialysis."

There it was. The verdict was out. Plain and simple. Like a dull thud.

There was not much I could say.

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Epilogue

That was the end of PD for me. Six years of near normalcy. Too bad it had to end. I had to now go back to hemo. I went and met Dr. Girish Narayen who asked me not to worry. He recommended that I do daily home hemodialysis.

The six years I spent on PD were by far the best during my entire time with kidney disease. And I am also including the last 2 years or so of daily nocturnal home hemo.

The whole process of hemodialysis is so violent. Blood is drawn out of the body and passed through a machine. PD, in contrast is much less risky as a process. There are concomitant risks of infection which can sometimes be fatal. But if all the procedures are strictly followed and you steer clear of tsunamis, PD can be really good!

I do not have as much freedom even now as I did when I was on PD.

I am a travel freak. With PD, I could travel unfettered. No worrying about getting back home in time for my hemo session. I could carry my bags with me or have them delivered to a close by place. And then I could stay there for as long as I like.

Now, I can go to a place for more than a couple of days only when there is a dialysis center there. Even if there is a center there, they will not do nocturnal. I can only get 4 hour sessions. And they will not do at night.

In the circumstances, nocturnal hemo is great. But PD was better for travel.

There was however one problem with PD. I could not swim! The risk of infection was too high.

So, there. Everything has a good side and a bad side.

But if you asked me what I would have preferred, I would say PD.


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