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Kamal Shah
Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.
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Sunday, 13 May 2012 01:46
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!
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!
... http://www.kamaldshah.com/2012/05/planning-thinking-re-planning.html
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Sunday, 06 May 2012 23:33
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.
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.
... http://www.kamaldshah.com/2012/05/and-then-every-once-in-way-this-kind-of.html
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Sunday, 06 May 2012 07:30
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!):
... http://www.kamaldshah.com/2012/05/will-i-be-able-to-manage-with-less.html
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Friday, 04 May 2012 23:08
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!
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!
... http://www.kamaldshah.com/2012/05/there-something-about-grandparents.html
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Tuesday, 01 May 2012 21:37
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:
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!
... http://www.kamaldshah.com/2012/05/my-experiments-with-bread.html
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