Saturday, November 24, 2018

Europe Diary

I’ve had Switzerland on my bucket list for a long time now. So, when I got to know that the next aHUS Alliance meeting was being planned in the Netherlands, I felt that it would the perfect opportunity to visit Europe. I did not want to do too many places. I thought of just doing Holland and Switzerland. The conference was in Nijmegen, a one and half hour drive from Amsterdam. I would spend two nights in Nijmegen, one in Amsterdam and then about a week in Zurich. While planning, I learnt that Lucerne was a more beautiful place than Zurich (which was more of a commercial city) and then decided to do a week in Lucerne instead of Zurich. My parents also came along.


We took an early morning Etihad flight from Hyderabad to Amsterdam via Abu Dhabi. It was very cold when we landed. There was a cold breeze as well. We took a cab to Nijmegen. The countryside was very beautiful. Autumn brought out some of the most beautiful colours in the trees. We reached Nijmegen, supposedly the oldest town in The Netherlands in the evening. There was a welcome dinner for the people attending the meeting. 

I met several people I had known online for years but had never met. The aHUS community is a small, closely-knit one with the common thread of an ultra-rare disease binding together people with very different backgrounds from different parts of the world. While our individual situations are very different, we have similar frustrations with governments and pharmaceutical companies.


Lucerne is a small city about 50 kilmoeters from Zurich. Lake Lucerne is at the heart of the city, a huge lake which is shaped like a human hand - with five fingers branching out from the middle. The city is surrounded by snow-capped mountains and is known for its medieval architecture. The old town has cobblestone roads and there is Kapellbrücke (Chapel Bridge), a covered bridge adorned with paintings that is on one part of the lake. Lucerne has very old buildings and a very charming feel to it. Trees of different hues line the roads on both sides. Even a simple walk along the streets of the city can be refreshing.

Like the rest of Europe, Lucerne and the rest of Switzerland has a very efficient public transport system. Infrastructure in all respects is very good.

The Top of Europe 

Mount Jungfrajoch is the highest peak in Europe. We took a train from Lucerne station and had to change 3 trains and a bus to finally reach the mountain top. The sights along the way were nothing like we had ever seen before. The reward was more than worth the effort. At the top, they had several points where you could go and see the snow. There were also points where you could actually step out into the snow and enjoy the cold, freezing temperature.

The place is so popular among Indians that they actually have a restaurant called Bollywood right on top. If you exclude the Chinese, Indians form the highest proportion of tourists in Jungfraujoch. 

Mount Pilatus

We did a trip to Mount Pilatus next. To get to this mountain top, we took a cruise ride to a place called Alpnachstad. From there, we got on to a Cogwheel train which was supposed to make the steepest climb by any train in the world. The train literally went up at an angle of 45 degrees throughout the journey. There was one point where we were in the middle of clouds and then after a few moments of very poor visibility, in an instant we were right above the clouds. The scene was like we were looking at a sea which was very rough except that these were all clouds.

Swiss Fondue and Raclette

During our trip we had some traditional Swiss Fondue and Raclette. A fondue consists of melted cheese that is served in a bowl that is placed above a flame. The cheese continues to boil while you use a tall fork to take a piece of bread, dip it in the boiling, melted cheese and put it in your mouth followed by some veggies. We thoroughly enjoyed the boiling cheese in the middle of the bone-chilling weather. Then we had Raclette where there is a cast iron pan that is heated by a live flame. You put a thick slice of cheese on the pan. While the cheese is heating, you take some veggies in your plate. Once the cheese becomes soft, you lift the pan and pour the melted cheese on to the veggies. Both the dishes were really different and unique.


I got four sessions of Hemodialfiltration during my trip - one in Nijmegen and three in Lucerne. This was the first time I underwent HDF. It was very good. The recovery time was hardly anything and I felt completely normal after the session. During the session as well, despite not being used to four hour sessions and having large weight gains thanks to the generous amounts of fluid I had consumed, I did not have a single complication.

Mixed Feelings 

As we got onto the flight, I had mixed feelings about coming back. Life is always like that. While I love to travel, the fact that I need to go for dialysis every alternate day can be quite a dampener. Also, when you get used to daily nocturnal home hemo, you are used to a life that is unfettered by diet and fluid restrictions. So, when you are on a holiday, instead of actually having a good time drinking and eating, it can be quite irritating to need to watch your food and liquid.

I was sad that such a beautiful trip was ending but I was happy that I was getting back to my familiar, comfortable home hemodialysis. There’s no place like home when it comes to dialysis!

Saturday, November 3, 2018

Blood Pressure control for Dialysis Patients

The beauty about science is that it is ever-changing. If fresh evidence is found that contradicts well-established theories, science will easily discard the old theory and adopt a new theory that better explains the new evidence. While this is great in many ways, you can never be too sure of your current theories. In Medicine this is all the more troublesome because you are dealing with lives here. Doctors could be treating you based on the currently available evidence. However, at some point in the future, they could well realise that the treatment was based on flawed premises. Where does that leave the patient?

Take Anemia Management in Dialysis patients for instance. There have been a number of studies that have revised the target Hemoglobin range among Dialysis patients. So for a few years everyone was using 10 - 12 g/dL as the target range. Then suddenly there was evidence that revised this range to 9 to 10.5!

Nephron Power covers the same issue with respect to Blood Pressure (BP) targets. In two posts (which you can read here and here , Hillel Sternlicht MD describes the timeline of how targets for BP have changed over the years. These posts talk about BP targets in general and a brief mention about early CKD stages. In Dialysis, there is the additional complexity of BP medication getting filtered out during a dialysis session (more about this here).

How should these ever-changing targets be made sense of? Should one disregard the changes and go with common sense? Should one keep up with every new piece of research and update practice accordingly? Dr. Sternlicht concludes rather beautifully:

“... the challenge of our times is to relinquish some of our clinical autonomy in order to integrate (complex) treatment algorithms. The oncology community has been at the vanguard of leveraging these developments. With distinct chemotherapeutic regimens based on the hormonal and genetic profiles of phenotypically similar cancers, they have come to appreciate that this “complexity” is the foundation of precision medicine.”

So, like so many things in medicine, one-size-fits-all is hardly the answer. Tailoring the target BP by individual could be a starting point in solving this problem. If you are on dialysis and your BP is not under control, you should talk to your nephrologist about the various options available and try to bring it under control. Discuss the possibility of your drugs getting filtered out. Discuss if another type of BP drugs needs to be added.

Remember, BP control is a very critical aspect of heart health. Several dialysis patients succumb to heart failure and cardiac arrests. Poor BP control contributes significantly to heart problems. So, do all you can to keep your BP under check. Never give up and accept high BPs as a part of life. It is impossible to find solutions solely by relying on the internet and Facebook groups. A combination of study of internet articles, peer advice from Facebook groups and most importantly a healthy discussion with your nephrologist is a good way to begin to address the problem.