Saturday, May 26, 2012

Give me the NxStage System One. I will not even ask for Eculizumab.

I read this blog post yesterday by Sharon Whipkey about going on a holiday to Italy to her daughter's house. Sharon  went with her NxStage System One, did not have to miss her regular dialysis, did what normal people would do and probably, did not have to watch her diet and fluids! Sharon says, "It is a small miracle to be a dialysis patient and travel any where without going in-center for therapy."

So true!

The fortunate people of this world who have access to the NxStage System One are living their lives fully without any restrictions on travel. Yes, I am happy for my access to nocturnal dialysis and the ability to lead a normal life in terms of work, exercise, diet and fluid. But, like all humans, I am greedy. I want more 'normal' too! I want the ability to travel unhindered.

My parents are back from a fantastic trip to Darjeeling and Gangtok. I had half a mind to go. The problem was the usual one. The closest dialysis center was a good three hour drive away from these places. Not only that, I would need to dialyze in-center and that too not daily. Which means I would have diet and fluid restrictions. Which means my holiday would suck!

To me a holiday is not a holiday if I need to watch my fluids and diet. A holiday is not a holiday if I need to spend 4 - 5 of my waking hours on the dialysis machine every other day!

The NxStage System One solves all these problems. You can get nocturnal dialysis on a holiday in the comfort of wherever you are - a hotel room, a friend's house or even down a river!

The thought that is going through my mind at this point is this: Give me the NxStage. I will not ask for Eculizumab.

Eculizumab is the only way I can get a successful transplant. Without Eculizumab, I cannot opt for a transplant because my primary disease atypical HUS will recur (90% chances). With Eculizumab, the chances of success are 90%! The drug is not available in India and even abroad, the cost runs into crores of rupees.

However, I promise, if you give me the NxStage machine, I will never ask for Eculizumab. I will not ask for a transplant. I will happily spend what's left of my life on this machine. I swear.

Wednesday, May 23, 2012

An experiment: High flux dialyzers

In India, most people use low flux dialyzers. Low flux dialyzers do not give good clearances of middle molecules. Over time, these middle molecules build up in the body and start causing all kinds of problems. I have been on dialysis for almost 15 years now. I better be careful about these middle molecules!

This has been bothering me for a while now. Though I knew that more frequent, longer duration dialysis is definitely better for me in many respects, I wasn't so sure if it is was good enough when it came to the clearance of the middle molecules.

I started talking about using high flux dialyzers to different people. Many people expressed a concern about the quality of water available for dialysis in India. They said you needed ultrapure water to safely use high flux dialyzers. They said there was a chance of bacteria getting into the blood from the dialysate if the water being used was not ultrapure. There was a point there. I held off for a while.

Recently however, I have been seriously looking at this again and brought this up with my nephrologist. We agreed that it was worth trying out. The worst that could happen was I could get a small reaction of shivering if bacteria did really get into the blood from the dialysate. This could be treated and we could decide to stop.

There was one more problem. The high flux dialyzer was expensive compared to the regular dialyzer I was using. At the same time, I had decided to try out single use of bloodlines as well. Together this would dent another big hole in my pocket! So, we thought we would alternate the regular F6 (low flux) dialyzer with the Hf80s (high flux) dialyzer. Its been a little more than a week of doing this. Things are going good, touch wood!

The plan is to continue this if I do not have any adverse events. The only problem is there is no way to measure if this is doing any good. But common sense and a whole lot of scientific research shows this must be helping!

Saturday, May 19, 2012

Heartwarming

At times, I go into bouts of depression; on dialysis, who doesn't?

Recently, I have been grappling with the dreaded bone pain rearing it's head again. In less than two months I embark on a once-in-a-lifetime trip to the US and Canada during which I plan to realize two lifelong dreams. I really don't want to blow it all!

This has caused me to be more worried than usual and yes, become depressed at times. Last night was one such occasion. I was worried whether the pain would allow me a good night's sleep. And as is usually the case, one depressed thought lead to another and another and another.

Just then I got an email from a lady from Dehradun. Her husband has been on dialysis for a while. Most endearing couple. She has been following my blog for some time now and every once in a way I receive an email from her saying hello or checking on some issue. Yesterday's was one small, simple email like most of her emails - she is obviously not very used to computers. Brief, often disjointed thoughts put together with considerable effort using monstrous devices. "Oh! Life was much easier with paper and pen", I can picture her chuckling to her husband!

I broke into a smile on reading the email. "We are very happy to know that you are going on a holiday to the US. How are you going to manage dialysis ( insurance )?" And then an update on her husband's health. The entire depression vanished. I became cheerful again!

The thought that there are people rooting for me in places I have never visited, there are people whom I have never met who are happy about things I do is very reassuring. I have been someone who has always looked for and yearned for affirmation. So, for me to receive this kind of email can be very uplifting.

Thanks so much Mrs. P!




Friday, May 18, 2012

Bone pain back

I have been having quite bad bone pain mainly in the back and my shoulders. It reminds me of the pretty severe pain I had for months a couple of years back. It is affecting my sleep as well. My PTH has become high which leads me to think that that could be the reason. But as with anything else, I am unsure.

I have been started on Cinacalcet 30 mg once daily. My Calcium is 9.5 mg/dl which is a little below the upper end of normal. So it is not the lack of Calcium that is causing the bone pain like last time.

While last time, the pain was mainly in the feet and started increasing in the back and shoulders before we managed to determine the cause and treat it, this time round it has started in the back and shoulders.

I am a little worried about the pain as my US trip is in under two months from now. I really need the pain to go by that time. Fingers crossed!

Sunday, May 13, 2012

Planning, thinking, re-planning...

As you know, I am making this trip to the US and Canada this July. And one problem is the dialysis. I need to get good enough dialysis during my trip to be able to avoid having severe diet and fluid restrictions and also to feel good. Less dialysis means more diet and fluid restrictions and less energy and less feeling 'normal'.

At the same time I need to avoid too many day-time regular four hour sessions. Otherwise I will feel like I am spending more time on dialysis than on having fun! If it is night time sessions, bring them on! I can take any number of them.

So, its a fine balance.

The night time dialysis will only be possible at centers since I will obviously not have a dialysis machine where I will be staying. Very few centers offer nocturnal dialysis at the clinic. Those who do, offer only limited days. For example, Davita centers that I have talked to only offer either Monday, Wednesday, Friday slots or Tuesday, Thursday, Saturday slots for in-center nocturnal dialysis.

A couple of weeks back, I had my whole schedule ready and I sent it to all my friends and relatives in the places I would be visiting. A few days back, however, the seeds of self-doubt were sown by a dear friend, Murali (himself on dialysis) when he cautioned in a comment to a post on this blog that I must be prepared for 'complete fluid restriction'. Gosh! that sounded horrible! Especially since I was not used to any fluid restriction. Since then I have reworked my trip plan, shortened it, changed the dates, changed the places, removed some destinations, dropped the plan altogether, resurrected the plan, everything possible!

I now have a plan that seems feasible. I have had to change some stuff to accommodate more nocturnal dialysis and less four hour sessions. I am still doing the same places but in a different order to enable me to get better dialysis and hence - more fun!

Monday, May 7, 2012

And then, every once in a way, this kind of thing will happen

I've been starting a new pair of buttonhole sites for the last few days. Last night was the third time in the series of about five or six that it takes of cannulating with sharp needles to form well established tunnels for the blunt needles to go in.

Everything went well. Starting, the treatment itself, closing. Usually with blunt needles it takes barely ten minutes for the sites to stop bleeding. With sharps it often takes longer - about 30-40 minutes. The arterial site however stopped bleeding in ten minutes. I opened the venous fellow a wee bit knowing that this chap behaves rather badly compared to his arterial cousin. Sure enough, the blood was gushing out. I quickly closed the gauze and fastened the tourniquet.

Twenty minutes on, I opened the gauze a little again. Still gushing. Thirty minutes, no sign of stopping! Forty minutes. One hour. Still no sign of stopping. The gush was powerful as well. I might have to drop swimming today, drat!

After one and half hour, the gush was still powerful. By now I was perplexed. What the hell was happening? Why isn't the blood stopping? I wondered if too much heparin might have been used. That did not explain it because the arterial site had stopped long back!

Two and half hours had passed. I opened to check. Still bleeding but thankfully, the force was less. At least we're in the right direction!

It took about three hours fifteen minutes for the blood to stop. I finally removed the tourniquet and the gauze piece and watched closely for about five minutes before deciding that yes, the blood had stopped!

Never in the past six years of home hemo has the blood taken so long to stop - type of needle notwithstanding.

Now I need to decide whether to continue to use the site that troubled me this morning or disband it and start afresh with another site.


Sunday, May 6, 2012

Will I be able to manage with less dialysis?

In July, on my trip to the US, I will be getting less than optimal dialysis. Its going to be a three week trip. I will be doing some nocturnal sessions in dialysis centers and some regular four hour sessions. These will also be spaced out with one or two day gaps.

This is the part I hate about holidaying while on dialysis. You need to watch your fluid and diet! I mean you're on a holiday! What fun is a holiday with diet and fluid restrictions?!

But I guess it is better than not holidaying at all!

So, I have two fears mainly - one of course is the fluid. With one and two day gaps, will I be able to restrict my fluid intake? This is not the first time I have had to restrict my fluid after getting on to nocturnal. I've been on trips to Goa and I have got less frequent dialysis there. But the big difference was those were only 4-5 day trips whereas this is a whole three weeks!

Second, the fear that with three weeks of non-frequent dialysis, will my other uremic symptoms like nausea start rearing their head? 

Well, I have scheduled my sessions so that I get nocturnal after a two day break and things like that. But still, I am a little worried. I will be on a holiday that is costing me a bomb. This is most likely going to be my only such trip ever and I want things to go perfectly! Can you blame me??

On the other hand, I will be achieving my two big dreams - one is to go on a cruise and the other is to go to the Niagara Falls from the Canadian side. Ever since I saw the pictures from my parents' trip last year and heard from them about the Niagara Falls, it has been on my list of absolute must-dos. Here is a picture (I have it as my desktop background for ages now!):



Saturday, May 5, 2012

There's something about grandparents

My grandmother (mother's mother) stays alone in a huge bungalow right next to ours. She has a Tata Sky connection. Left to herself she would have much rather continued her cable connection where the cable operator would come and ask her for the monthly rent and she would hand out the cash. Now, she has to depend on someone to recharge the account and she does not Iike that one bit. Of course, she did not realize this when the connection was set up by Rudy, her grand-son-in-law!

So now she comes home a couple of weeks before the recharge is due with a crisp Rs. 1000 note and asks me to recharge her account. She also brings in her account id just in case I don't have it. I get on to my laptop and log on to the Tata Sky web page and within a couple of minutes I have her account recharged for three months.

She is usually profusely thankful. She compliments me on how fast I did the recharge and how she is out of tune with the times where everything can now be done on a computer!

That however is not the point of this post.

I often feel embarrassed when she thanks me. For something as little as that. I tell her it was nothing. What I leave out is the number of things she and her late husband, my grandfather have done for me.

It was nothing big really. That's the beauty of it all. Nothing big. Just so many small little things that shows the infinite, unconditional and selfless love they had for me that caused them to do these things. As I write this, my eyes turn moist. I miss you Dada!



Wednesday, May 2, 2012

My experiments with bread

Ever since my parents brought home a bread maker from the US last year, I have been experimenting with different types of breads. Bread makers really make your job easy. All you need to do is put the ingredients of the recipe in the right quantity and in the right order into the bread maker and the rest of the job is taken care of for you.

The important thing as the manual keeps stressing again and again is to use exact quantities of the ingredients specified in the recipe and to put them in the right order. To help with the quantities, my parents also brought home a set of measures that helps me measure out exact quantities - 1 and 3/4 cup, 1 and 1/8 cup for example - all such measures can be done exactly!

There is one problem with the bread maker however. There is a small mixer that is to be fixed at the base. This causes an uneven hole to form at the bottom of the bread. I can live with that however. I guess they cannot avoid that!

I have tried different types of bread - regular white, whole wheat, cinnamon and raisin, honey grain, Italian Herb etc.. Most of them turned out very well. The 100% whole wheat was an exception. It wouldn't rise well enough and wouldn't be fluffy. I tried many changes to the recipe. More water, more yeast, a touch of oil. Though most variations were better than the original recipe, none was frankly, good enough. When I look at the whole wheat breads available in the market and take a closer look at the ingredients, I find that most of them are not 100% whole wheat! They all list wheat flour (maida) as one of the ingredients. Now I know why!

Here are some pictures of the bread that I have made:


Italian Herb Bread - this one contains Parmesan Cheese, Parsley and Basil. Tastes really good with all those herbs. You get a mix of the flavors from the main ingredients. The bread usually caves in at the top - I have no clue on how to avoid this! No problem in rising however and it is as soft and fluffy as it should be. 


Honey Grain Bread - contains a mix of maida, whole wheat flour, oats and honey. I sometimes use this as the base for other recipes. It is healthier than the regular maida bread. I have used it successfully with Italian Herbs as well. The bread itself is neutral to taste. But the addition of whole wheat and oats makes it an excellent alternative to regular bread.


Cinnamon and raisin bread - is a complete refined flour bread with a dash of cinnamon powder and black raisins. This one is slightly sweet due to the raisins - not cloying by any means. This one rose so well that it was a treat to look at and eat as well!