Saturday, May 31, 2008

NxStage, when will you bring the System One to India?

In a comment to a post on Bill Peckham's travel, Srinivas, a friend wrote that I should get a portable dialysis machine so that we could go for long trips.

Srinivas and I are both consumed by wanderlust and trips in the past have been restricted in duration because of my having to return home for dialysis within a day. Many places we would like to go to do not have dialysis centers and this sort of restricts things a lot.

In these circumstances, having a portable dialysis machine can be a boon. I have been following with great interest (and envy!) the accounts of Bill Peckham and others of traveling with the Nx Stage System One.

My research on the internet has revealed that the System One is a nifty little dialysis machine which many people use for short daily home hemo and an increasing number of people are now using for nocturnal home hemo.

This will be the ultimate for me. Imagine taking this baby and going off to kayak and go white water rafting at Anejhari or dash off to Darjeeling in the summer and sip tea right by a tea garden. And all this, without having to restrict fluid or worrying about feeling uncomfortable!

Unfortunately, NxStage, the company that makes these machines has not yet started selling these machines outside the US. So, even countries like Canada, UK and Australia do not have these machines. I guess it will be a while before they will come to India.

Till then, Srinivas, dear Srinivas, we'll have to do weekend trips. Thanks so much for your concern, by the way!

Thursday, May 29, 2008

Drank 3, put on only 2.5!

The reverse of what happened on Sunday happened yesterday.

I again measured everything I drank and it totaled to about 3 liters. That evening when I checked by weight I had put on only 2.5 kgs!

Now, I know this can vary based on a lot of factors. But I wish there was some way I could know how much fluid I have extra in me easily. Maybe some device that measured this? Would make a lot of things less complicated.

Monday, May 26, 2008

Drank only 1.5, put on 3.5!

I don't dialyse on Sundays and so have to be extra careful with fluid on Sundays and Mondays till my dialysis session starts on Monday night.

This Sunday, I measured everything I drank and it was 1.5 liters including some fruit I had. But on Monday morning when I checked my weight I was 3.5 kilos over my closing weight of Sunday morning. Now how can you explain that?

Well, food we eat also has water but then we also lose water by perspiring. All told, that shouldn't add so much - 2 liters.

Sometimes I think even when I restrict I am putting on 3.5 kgs and even when I am liberal I put on about the same. So, why bother?

Sunday, May 25, 2008

Amazing Bill Peckham

Bill Peckham is at it again!

Right now, he's on a boat called the Grand Waltz and is making his way to San Juan Islands by sea for a vacation. He has his NxStage System One (a portable dialysis machine) and will be dialysing on the boat every night!

Bill is a perfect example of how to live life to the fullest even when on dialysis. He has traveled extensively on dialysis and has had dialysis sessions in a large number of countries.

He truly is an inspiration for all of us.

Saturday, May 24, 2008

Need to get out of my comfort zone

Every once in a way, my dialysis tech sends his brother instead of coming himself. His brother is a dialysis tech at the same unit as him.

The problem is his brother thinks with his dick instead of his brains. And he does not know English. And I speak horrible Telugu. So, all communication between us is in a mix of broken Telugu and sign language.

Whenever an alarm goes off on the machine, he arbitrarily presses buttons without thinking what he should be pressing.

It is now abundantly clear that I need to be in control. I was getting there but took a back seat when the infection started. Yesterday, when his brother came, I was unnerved. So, I am going to get back to doing everything myself immediately.

Thursday, May 22, 2008

Glug glug glug glug - look at him gulp!

Drinking water is very good for everyone not on dialysis. Many people take this quite seriously and drink a lot of water. I wish they did not do it in front of me.

When I see people gulping a whole lot of water, I look at them and envy them. The feeling of gulps of water going down your throat is undescribable.

There is this meeting we have every morning in office to plan the day. A guy called Kiran is a part of that meeting. He always brings in a bottle of water (about a liter) and keeps taking gulps from it. He finishes the bottle over the half an hour or so the meeting lasts.

I can hardly concentrate sometimes!

Tuesday, May 20, 2008

A swim in the rain

Every year, at the peak of summer, in Hyderabad, when the temperature is on the wrong side of 40 degrees centigrade for days on end, we receive a few spells of rain. There is a lot of relief.

And even though this ritual is repeated every year, in the drawing rooms at night, people are still surprised. "Just imagine! Its raining in May!"

So, sure enough, this morning, the weather was cloudy and within an hour it started pouring. I was hoping the rain would continue till I got to the swimming pool for my daily morning swim.

It did.

I had a great time. The water was cool, the drops of rain (which are usually thick at this time of the year) on my head and the gentle breeze with the smell of water - all together formed a heady cocktail of exhilaration.

Saturday, May 17, 2008

Blood test values pre or post dialysis?

When is the correct time to draw blood for tests? Before or after dialysis?

We have about 5 liters of blood in our body. Now I usually put on about 3 kgs of fluid between treatments. Most blood tests have results that are volume specific. That is, they are reported as something per milliliter.

Now if the blood is drawn before dialysis, the blood is usually diluted with water because I have extra fluid in my body that has not been removed. So, the test value that is reported will be less than actual because if say, 4 units of a substance exist per ml of my blood, the blood drawn will contain less than that per ml because some of it is actually not my blood but fluid.

I realized this because a lab once inadvertently did my Liver Function Tests on both my pre Dialysis and post Dialysis samples (I had given pre and post samples to actually check the change of Serum Potassium and Serum Phosphorus during dialysis). The values were all different! And liver function can definitely not change so drastically over a 8 hour period!

Can someone throw some light on this?

Friday, May 16, 2008

Meeting with vascular surgeon

I met the vascular surgeon who had done my fistula, Dr. P. C. Gupta (an awesome guy, more about him in another post) and showed him the infected buttonhole site. I told him I was on Augmentin.

He examined the site and told me to continue the Augmentin for a total of 7 days.

The best part of the consultation came later however.

I discussed the swimming bit and he told me that it could be possible that the gap between my closing dialysis and getting into the pool was too small. He suggested I try swimming in the evening instead. He then had a better idea. He suggested I use an aerosol spray dressing called Healex which forms a water proof film over the area it is sprayed on and then I could swim in the morning too!

I'm going to try that soon.

Tuesday, May 13, 2008

Pus update

I've been taking antibiotics for the last 4 days. I still get a drop or so of pus once a day.

The clot was probably the same thing. The area is not red or tender which is a good thing. It is actually hard and black. Not sure what that means.

But I'm worried that the pain is still there. We have changed the puncture site so there's nothing irritating the infected spot. Augmentin should have stopped the pus totally.

The neph I showed it to did say that it looked like it was superficial. But he added the rider that I should show it to the vascular surgeon who made the fistula.

So, I'm going to the vascular surgeon shortly.

I do not want to take any chances with this thing.

Friday, May 9, 2008

Pavan Joshi passes away

Pavan Joshi passed away on the 29th of April. I was shocked when I saw his obituary in the newspaper this morning.

Pavan was my fellow dialysis patient at KIMS hospital. About 7 years younger than me, he had roughly the same history as me.

After I switched to home hemo, I used to call him once in a while and talk to him to check how he was doing.

I felt really bad.

I called my tech to find out how he died. He knew about his passing but did not know what had actually happened. He is going to find out.

Pavan's death is a grim reminder of what I and people like me are constantly battling. Every day is a risk.

Sometimes I think about people who live their life without this Damocles' sword hanging around their neck. They don't have to worry about these things at all. How lucky they are. They don't even realize the amount of trouble we have. When everything we do has to be done with our medical condition at the back of our minds.

Want to go for a swim? Worry about infection. Want to drink a cola? Worry about the fluids. Want to go for a holiday? Worry about being under-dialysed. Want to go somewhere? Worry about the presence of a working elevator.

These things are not impossible. But the worry is always there. Why? Why does it have to be like that? Why can't our lives be more normal?

Pavan' s death has really shaken me. I always associated death for a kidney patient with older people. But Pavan was seven years younger than me. How did he die? I really want to know.

Pus from arterial buttonhole

(Posted on Home Dialysis Central Forums)

I'm doing nocturnal home hemo.

I had some pain next to my arterial buttonhole after I came off my session on Sunday morning. I dialysed on Monday, Tuesday and Wednesday night and the pain was still there but was reducing.

Yesterday night (Thursday night) when I removed the scab over the site, a little pus oozed out. I was terrified. This has never happened before.

A little background - I've been going swimming recently. Earlier I used to swim many hours after I came off the session and I think the site might have closed up well before I got into the water. But recently, I've been going swimming within a couple of hours of coming off a session. Could this be the reason for this?

I anyway called my nephrologist who asked me not to use the site and change it. He also put me on Augmentin 625 mg twice a day.

I'm scared because I don't have too many options for dialysis access and I really cannot afford to lose this fistula.

Any thoughts/advice would really be welcome.

Clot near arterial site

This time its my arterial site!

This Sunday, I had bad pain just next to my arterial cannulation site. Now I often have pain after my dialysis session for a little while. But that pain gradually disappears. But this Sunday's post dialysis pain was different.

It stayed on and stung like hell. It did not go till Monday evening too and I was really worried and was wondering how I would be able to cannulate there.

When the tech came, I told him about it. He felt the area with his finger and said it was a clot that had formed. Probably, after removing the needle on Sunday, the exit point had closed but there might have been a little bleeding inside which could have clotted. That is probably the reason for the pain.

It should reduce and go away completely in about 3-4 days.

There's never a dull moment in life with dialysis, I guess!

Thursday, May 8, 2008

Do you want to replace the existing 'Normal'?

I have MS Office installed on my Mac.

Very often, when I try to quit MS Word, I get this message, "Do you want to replace the existing 'Normal'?"

Huh? The existing 'Normal'? WTF is the existing 'Normal'?

And I have no idea whether I want to replace it.

Now, I don't know whether saying Yes or No or Cancel is going to have any impact on my documents. I just hit No most of the time. For kicks, one day I hit Yes and it showed me a folder where there was a file called which is some kind of a template. Now I didn't want to mess with that.

So, I canceled and ran for cover!

Wednesday, May 7, 2008

iPhone battery

Its hardly been a few months since I got my iPhone. But I've begun to notice that the battery gets discharged really soon.

Hardly one long call and its almost close to the finish.

I need to observe this for a few more days before deciding that there is a problem. It is difficult to imagine that something from Apple will have this kind of a problem.

So, I'm going to watch this more closely for a few days.

Tuesday, May 6, 2008

Venous blood ooze

I'm trying to reach a stage when I can start my dialysis with as little assistance as possible.

I now do most of it myself. But I've had a couple of incidents which have really unnerved me. When you have 2 hands to do things, it can be easy. But since one of my hands is the one that I'm working on to cannulate, I have only one hand. So, after cannulation, I kind of struggle to put the plasters. And in the process I keep moving the needles.

This caused the venous site to ooze blood twice. On one occasion it was just a little and it stopped very soon. On the other occasion, it oozed a lot. Luckily my tech was there. He removed the plasters, pushed the needle a little and then plastered it quite hard to stop the oozing. I was wondering what would have happened if he was not there.

Now, this normally should not happen. But my fistula is a little weird. The venous access is at right angles to the arterial access and they're very close to each other. This makes it very difficult to plaster the needles once they're in.

This makes me really worried. For me, it is very important to be able to dialyse alone. But with this fistula, it is going to be difficult. I guess practice will make it better. I need to keep persisting.

Monday, May 5, 2008

Fluid overload

I dialyze every week night. I skip Sundays. Every Monday morning, I feel a little heavy in my chest.

It is probably the extra fluid. For example, at this very instant, I checked my weight and found that I was 3 kgs over my closing weight on Sunday morning. And it is there. The unmistakable discomfort in my chest. And it is worse when I lie down, better when I sit or stand. Fluid overload symptoms without doubt.

From when did 3 kgs make me feel uncomfortable? I could put on 5-6 kgs without feeling a thing earlier.

Maybe, I'm so used to being close to dry that this is now making a difference. Its not a good thing though. I hate the thought of it.

Saturday, May 3, 2008

Dr. Anuj Kapadiya

Today, I met Anuj Kapadiya, my classmate at school after 17 years.

Anuj left school after class 10 and I totally lost touch with him after that. Recently, there was an alumni meet at school which I could not attend because my cousin sister Nisha's wedding was on the same day. Ambuj (another friend from school but with whom I've been in touch with) met him there and told me that he had met Anuj who was now a cardiologist at Care Hospital!

I wrote about my chest discomfort here and had seen his name on the list of cardiologists in Care Hospital. I had tried calling him then but he was off for a few days because of a family wedding. I called him a couple of days after that and I finally met him today at Care Hospital.

His face is still the same from 17 years back but is much taller (obviously!). We caught up with what we've been doing. He completed his MBBS, MD, DM and DNB and topped the state in his DM! He had obviously worked very hard and had quite a tough schedule in the hospital too. But he said that he feels it is all worth it because it feels really nice.

I was really happy to meet him because its good to know that your classmate and friend so many years back was now in a profession where you could really do with some friends!

I discussed my medical history and the recent cardiac follow up I had and he said things look quite good and that the 2D Echo report was a 'normal' one.

I asked why I was getting short of breath then. He suggested that I get a Treadmill Test done and we could then decide.

Overall, it was a very good meeting.