Saturday, January 30, 2010

Is there such a thing as too much Calcium for me?

Ok, so if you've been following my bone pain thread, you know I figured out that my bone pain was due to the low Calcium dialysate I was using in error. And that the Calcium was being pulled out from my bones continuously over the last few months.

I switched to regular Calcium dialysate (3 mEq/l) last Thursday. And I used a high Calcium dialysate (3.5 mEq/l) on Tuesday and Wednesday. I have also doubled my dose of Calcitriol to 0.5 mcg/day. All this without my nephrologist catching a whiff of what I was doing! Now, don't get me wrong. He's a very nice person (and if it wasn't for him I would not be living today because he suggested nocturnal daily home hemo to me). The only problem is he is a little less aggressive, imho. He would rather let the symptoms of bone pain go away slowly than try something aggressive and risk extraosseous calcification (calcification of the arteries and veins due to excessive calcium in the blood - turning to stone in common parlance).

So, I am trying this experiment myself - with only friends on the internet (including one very helpful nephrologist from Australia) to guide me. Risky? Yes. Can I help it? No.

So, a whole lot of Calcium was being added to my blood, especially over the last couple of days. Because of this, there is some good news and some bad news. The bad news first - my Calcium has skyrocketed to a whopping - hold your breath - 13 mg/dl!!! Normal is 8.5 to 10.1 mg/dl. I remember my nephrologist go ballistic when my Calcium had become 11.5 mg/dl a couple of years back. He almost threw a fit and broke into a sweat and had me off anything that even remotely looked like Calcium! In fact that is when the whole 'low Calcium saga' started (I'm sure you know about this unless you have joined the party late).

Coming to the good news - my bone pain is getting - hold your breath again - better. Yes, you read that right. BETTER! Which is difficult to believe. I had thought I would have to go through life with this pain. I had started thinking about the deeper meaning of life (can you believe it?). I even wrote depressing posts about life expectancy and what have you!!!

Before you get carried away - its not gone. Its got about 10-15% better, that's all. But that is big. The pain was increasing with time. At least now the reversal has started!

Which brings me to the dilemma I am faced with currently. Should I continue the high Calcium dialysate, try to get rid of the bone pain real quick and risk a high calcium and extraosseous calcification or switch to a regular (not low) Calcium dialysate and hope that the bone pain resolves slowly?

Not a nice dilemma to have!

Coorg calling - some pics


At Wonder La, the water park on the way from Bengalooru to Coorg


Abby Falls, Coorg


The Stream by the falls

Thursday, January 28, 2010

Coorg calling - Coffee, cardamom and more

The road to Coorg from Bengalooru is good until the last stretch of about 25-30 kms. This stretch is not a road - it is a test of your nerves and your driving skills. It is also a test of how lucky you are. They are supposedly building / repairing the road. This has caused the entire stretch to become full of ditches and stones. We reached the Club Mahindra resort at Coorg around 9:30 in the night after a grueling drive through this stretch.

We had dinner at the Green Cardamom, a restaurant in the resort. There was a huge buffet of Indian food with a wide variety of desserts. After a sumptuous meal, we went to our rooms and retired for the day.

One thing we had decided was that we did not want to see a whole lot of places. We were, after all, there for only two nights and a day. We wanted to relax rather than pack in too many things. Most hill stations are similar - a sunrise point, a sunset point, a lovers point and a suicide point! The key is to enjoy the weather and basically not do too much.

The next morning, we got up, performed our morning ablutions and then went to the restaurant for breakfast which too, was very good. A wide spread. Tasty food. Some great coffee. We then took a hotel jeep to the Abby Falls - a waterfall about 8 kilometers away from the resort. The jeep stops on the road and you have to trek for about 15 minutes through a track that has coffee and cardamom trees along it before you reach the falls. Unfortunately there is no access to the base of the falls. So, you can merely see the falls from a distance.

After this, we went to another waterfall. This was much better. The jeep goes through a bumpy track in the middle of a forest and then leads to an opening in the fields. From here, a five minute trek takes you to a splendid waterfall with clear water. This waterfall is accessible by foot. We quickly changed into our swimming gear and went right up to the base of the falls. We enjoyed ourselves thoroughly. The water was very cold.

After about an hour or so of playing under the falls, we changed and got back to the resort. We then lazed around in different parts of the resort - inside the swimming pool, the coffee lounge and our room. Dinner was huge again. The next morning, we breakfasted in the resort again and left for Bengalooru and then to Hyderabad. The return journey was quite uneventful.

Sometimes I think if it was really worth doing all this travel just for one day of fun in Coorg. The problem is I cannot do more than this in cities where there is no dialysis. As it is, by the time I got back I had put on almost 8 kgs of fluid (shhh, don't tell anyone this and don't embarrass me by asking me about it). To stretch beyond this would be asking for trouble. Unfortunately, places with dialysis centers are not much fun (except Goa).

Wednesday, January 27, 2010

Coorg calling - Wonder la on the way

"I will come along too!" I joined in the conversation of my colleagues who were planning to go to Bengalooru on work. They thought it might be a good idea to extend the trip by a couple of days and chill in Bengalooru. They were excited too!

A few discussions about the plan later, we had decided we would go to Coorg (Kodagu in Kannada). It all happened so suddenly. Hardly a couple of days before we were to head out. They left a day early to wrap up what they were to go to Bengalooru for. I reached on Sunday morning. On the way to the place we were to meet, I visited a friend, a fellow dialyzor in the city. It was good meeting and we exchanged notes on life on dialysis.

I met my colleagues then and we started our journey to Coorg. 253 kms it was. We thought it shouldn't take us more than 5 hours. We couldn't have been more wrong! Thanks in part to Wonder La, the amazing water park on the way. We had no idea that this water park that I had been to a couple of years back and that had left me totally ecstatic was on the way to Coorg from Bengalooru. We pretended to debate whether we should actually go in or continue our journey to Coorg! Water won, of course!

In a few minutes, we hit the pool that had a number of slides and showers. The water was very clean and the temperature, we were told was maintained at a comfortable 28 degrees centigrade. We enjoyed ourselves thoroughly for some time in this pool. At 1 in the afternoon, we went to the wave pool that was designed like a beach - except that there was no sand and the water was salt-free! They simulated these huge waves every couple of seconds. Very enjoyable!

We then went to the 'Disco Rain' hall where they had artificial rain in a disco and they played music and the crowd was dancing wildly. It was nearing two and we decided it was time to get out. We quickly changed, had lunch at the restaurant and then continued our journey to Coorg.

Friday, January 22, 2010

Coorg calling!

I have avoided any travel ever since I've had the bone pain. But now that I have figured out that the 'end (of the pain) is nigh', I thought it was a good time to do what I love most - travel. A couple of friends from office and I are going to Coorg this Sunday.

I go to Bengalooru on Sunday morning and from there we drive down to Coorg - about five hours, 250 kms. We have bookings at Club Mahindra's resort there. We initially debated between going to Wonder La, the amazing water park at Bengalooru and then going to Coorg but then dropped that plan because it would become too hectic. So, in the end we will be spending two nights at Coorg and returning to Hyderabad via Bengalooru Tuesday night.

I have heard a lot about Coorg and its coffee plantations. A quick google search revealed some other possible highlights - the Abby waterfalls, Talakaveri and Kaveri Nisargadhama. I am not looking to see a whole lot of places. I am just planning to go there and relax. Away from the bustling crowds of the city. Away from the evening traffic jams on my way back from work. Away from the smoke filled air of Hyderabad. And away from dialysis!

Yes, I will not be dialysing for two nights in a row. It should be all right. I did a two night break in October last year too when I went to Vizag and Araku. I did not have any problems. God, that seems such a looong time back. I really should not give such long breaks from traveling!

Anyway, so long folks! Its time to wake up and smell the coffee!

Wednesday, January 20, 2010

Bone pain - the aha moment I was waiting for!

I think I know what's causing the bone pain. This has been my biggest problem in the past few months. I am finding it difficult to go about my daily activities. Yesterday morning, I dug deep and analyzed everything carefully. It started with reading a post by Dr. John Agar, the expert on nocturnal dialysis in response to a thread on the Home Dialysis Central forums. He said that in Australia, they used a 1.6 mmol/l Calcium bath for dialysis.

I refreshed my Chemistry. Calcium had a valency of 2 which means that they were using a 3.2 mEq/l bath. In India, the norm is a 3 mEq/l bath. I was asked to use a 2.25 mEq/l bath when my Calcium had become too high. I was also asked to stop using Calcitriol which increases Calcium. This was around October 2007.

I immediately checked the Calcium in my current acid can. Guess how much it was?

1.5 mEq/l!!!

I was shocked beyond imagination! This was it! This was the reason I was suffering! I was asked to use 2.25 mEq/l, I was using only 1.5! Almost half. Obviously the dialysate was pulling Calcium from my blood. The blood in turn was pulling it from my bones, which is the store for Calcium in our body. My bones were being continuously leeched of Calcium every single moment of the day! I would obviously have pain!

Now a little history: I had ordered the special acid solution in October 2007 and my regular supplier was supplying it. I checked the first few times and it seemed to be all right.

At one point, probably about a year after this, my regular supplier had problems delivering this special solution. I got another supplier to prepare the solution for me. They also delivered the right solution for a while. Subsequently my regular supplier said he could supply the solution. I ordered the next lot with him. But this time, I told him on the phone to prepare the same low Calcium acid solution as earlier without mentioning the actual numbers.

Aha!

They did not bother to check obviously and some dumb ass decided to prepare a 1.5 mEq/l bath. I did not check. Obviously the same, I thought. Yes, I know. Totally my fault. I should have checked the label. And spared myself living with hell for the last few months and probably one or two more. Man, I feel so crappy. Totally avoidable. I don't even blame the supplier. They have no clue about how important this is.

I cross checked this with Dr. Agar and he concurs with my reasoning.

What next? "Get a truckload of Calcium", says Dr. Agar! I have fresh cans of regular Calcium dialysate. I have doubled my Calcitriol dose. I am going to be monitoring my Calcium weekly to make sure it does not go out of whack.

How much longer before the bone pain subsides? I have no clue. Neither does anyone else, I presume. I would say, at least one month before I can even begin to feel some relief. More for it to totally go. But I am relieved that most likely, it is the beginning of the end of the pain. That, sure, is a big, big relief!

Tuesday, January 19, 2010

Lost, confused, totally at sea! Cell phone with Zero balance!

This Sunday, we had a potluck lunch at a relative's house. I had to attend an introductory session of the Landmark Education Forum at my friend Ambuj's instance in the morning. My parents reached the relative's house around 12:30. I was to join them. I did not know the way to the house. I called my dad while I was on the way. My dad who is generally bad at giving directions told me to come up to the new Monda Market and then give my mom a call.

So far, so good.

I reached the new Monda Market. I dialed my mom's cell phone number and tapped the 'Call' button on my iPhone.

"You have no call balance. Please recharge!"

Whaaat?!! I was shocked. This had never happened to me before. Some mistake, I thought to myself. I tried again. Same message.

I hadn't even got a warning when the balance had become low. How could this have happened? Anyway, I did not panic, not yet at least. I asked auto drivers on the road side for Mansarovar Heights, the name of the apartment I was to go to. I could find my way fairly easily. I reached the apartment. I realized that there were about 400 flats in that building. How would I find the flat I was to go to?

I asked the security people if there was a board where they had the residents' names along with the flat numbers. I would just look for a 'Chandarana' and could get to the flat. No, they said. No such board. What kind of an apartment was this?

I tried my cell phone again. Perhaps there was some temporary problem which might have been rectified. The stern male voice from Idea Cellular repeated (I could swear the voice, though recorded, sounded more irritated, like he was upbraiding me for trying again and again)
"You have no call balance. Please recharge!"

I tried sending an SMS to my folks "Call me now". Did not go through.

I asked the security if there was a telephone booth close by. "Today is Sunday. It is closed." I sheepishly asked the security guy if I could borrow his cell phone to make a call as I did not have any balance. Turned out that he did not have a cell phone!

I was at my wits' end. I had no clue about what do next! At one point, I thought I should turn back and go home. But then I remembered that the menu for lunch was "Dal Baati Choorma" which happens to be one of my favorite dishes! No way I was going to miss that!

I sat down on a chair and thought hard. There had to be some way out!

The security guy brought a book which had all the residents' names and their flat numbers. I started going through the names looking for a 'Chandarana'. I had turned about twenty pages unsuccessfully when another security guy came there and asked what was happening. We explained my predicament. He promptly took out his cell phone and offered it. I grabbed it, quickly called my dad and asked him the flat number. 811. Sigh!

The "Dal Baati Choorma" of course, more than made up for the preceding drama!

Monday, January 18, 2010

Visit to the nephrologist to discuss the isotope bone scan

I went to the nephrologist Saturday evening with the isotope bone scan report. He echoed the thoughts of the bone scan consultant. "Nothing more than what we already knew". "Crap!", I thought to myself. Both of us were perplexed! What could be causing this severe bone pain? He thought this through. He then said maybe we should wait it out. Maybe the active Vit D deficiency, the Calcium - Phosphorus imbalance and the PTH need some time to settle down. We were addressing these three things already. I was adding a Phosphorus supplement to my dialysate. I was on a Vit D supplement. In addition he asked me to switch back to a normal Calcium dialysate from the low Calcium version I was currently using.

He also asked me to stop Cinacalcet. My PTH was 179 last. He did not want the PTH to be below around 250 or 300. So, he asked me to stop Cinacalcet. I asked if Vitamin C deficiency could cause this pain (as suggested by a friend from Bangalore in the comments to my earlier posts). He doubted it because he said I was having a normal diet. However, he asked me to try a Vit C supplement because there was no harm.

We agreed to watch for a while. As I got up to leave, he asked me if the pain was getting better, worse or was the same. I told him that it was getting worse. He was genuinely worried. He thought about it for a while. He did not know what to do. He was wondering if an orthopedic consultation would help. Perhaps a neurologist could add some light? He thought orthopedicians rarely dealt with renal cases. He suggested a neurologist consultation.

So, that's where we are with the bone pain. All the tests have yielded nothing. My only hope is a post on the 'I Hate Dialysis' forums in response to a question I had asked about the time the bone pain takes to resolve once a Vit D supplement is started. Most people said a couple of months. One person however said it took four months for her. This gives me hope. Hope that the pain should resolve in four months of which two months are already over.

Sunday, January 17, 2010

Isotope bone scan

I got my isotope bone scan yesterday. It was a fairly simple procedure. I went in at around 9:30 in the morning, paid a huge Rs. 3,500 and waited for my turn. I was injected with a small quantity of isotope, a clear liquid using a small syringe. It was around 10 a.m. then. I was asked to return at 3 in the afternoon for the gamma ray scan.

People with functioning kidneys are advised to drink a lot of water so that the radioactivity of the isotope is flushed out through the urine and a clear scan can be obtained. However, since I was completely anuric, I figured it did not make sense to drink any excess water. The techs there did not know about this. To their credit, they did not insist that I drink a lot of water. They said, do whatever you're comfortable with! Nephro cases are really mind boggling for health care staff!

I returned at 3 p.m. I was ushered into a room where there was this fancy looking machine. I was made to remove any metal I was wearing - belt, mobile phone, wallet etc. and asked to lie on a narrow bed and stay still. I was asked to breathe normally. The scan took about 20 minutes. During the scan, a device basically moves above you. Claustrophobic people might find it difficult as for a brief period, there is this heavy object that is going over you, less than inch above your face!

I was asked to wait for a little while while they got the report ready. The report said "Metabolic bone disease" at the end after a couple of paragraphs of seemingly mild jargon. I asked to see the consultant. Dr. Kumaresan, the consultant said there was nothing to worry. The scan showed things we already knew and there were no "hot spots". My nephrologist would adjust my medication to take care of this.

Wednesday, January 13, 2010

Another test for bone pain

My bone pain is getting worse. I went back to my nephrologist yesterday to discuss this. He suggested getting an isotope bone scan. He said it will help us know the condition of the bones and help identify any 'hotspots'.

To be honest, I am getting tired of all these tests to determine the cause of the bone pain. They rarely show anything. On the other hand, I am desperate to know what is causing this severe pain that is making going about my daily activities difficult.

Yesterday, I was thinking, this is the last test I am doing. If nothing shows up, I am not doing anything else. I will just wait and watch!

I should probably do some travel. It will be difficult with this damn pain. Goa would be great. I may not be able to do the water sports because the jerks would be very painful. But yes, Goa would be a good idea. There was also some good news on the cruise front. There is now a cruise that sails out from Kochi. There are 3 night cruises to Maldives and Colombo and a one night high seas sailing.

Whatever it is, I am not going to get depressed again.

Monday, January 11, 2010

Announcing dialysis.org.in

India has a very different healthcare model compared to countries like the US, Australia, Canada and the UK. Most people pay their own medical bills. So, one very important factor in deciding on our treatment is often the cost.

The issues for people with CKD in general and on dialysis, in particular, are thus, very different from those in other parts of the world. I have, for the longest time hoped for some more support from the dialysis community in India. It is difficult to get this without having a platform online. While meeting in person does offer a lot of advantages, it is difficult to do this more than say, once a month.

To address this problem, I have been working on a website that will offer information and support for people on dialysis in India. There are sections that offer some basic information, sections that offer my perspective on well-being and leading as normal a life on dialysis as possible and a forum where people can share problems specific to India and look for some helpful tips and answers to try and solve those problems from fellow dialyzors in the country.

So, without much ado I bring to you - Dialysis in India.

Please take a look and give me feedback on how the site can be improved. The site is currently very basic. I hope to expand it to include a lot more in the weeks to come. If you wish to contribute in any manner, please let me know. I shall be more than happy!

A big thank you to Kartik and Jayadeep for providing the server space to host the site. Without their help on the space and with Drupal, the site would not have been possible. Thanks again both of you!

Saturday, January 9, 2010

Support system for CKDers

I have been depressed for the last few weeks. Questions about longevity, my bone pain and some personal problems have been bothering me. I have realized that how I feel has a lot to do with how I think. When I feel depressed, the bone pain seems worse. Yes, I know that has been said like, a gazillion times before but nevertheless, we all have our moments of realization.

This depression reflected in my posts here as well and I have posted some really, really depressing stuff for which I am sorry!

The main problem, when I think about it, is the lack of a support system. When I am feeling down, I have no one to talk to. Well, friends and family are there. But they don't really understand what I am going through. The only person who can understand what someone on dialysis is going through is someone else on dialysis. Period. Not even doctors, not parents, not spouse, not even dialysis techs and nurses. Heck, I feel PDers don't understand what HDers go through!

It would be really great if there was a support network of dialyzors in my city. Maybe all CKDers - folks with kidney disease. The Renal Support Network organizes patient support meetings every month in the US. Something on those lines would really be terrific. I understand it takes some effort organizing such an event. We could start in a small way. Just get a few folks together over coffee - well, the excess fluid may not be such a good idea, maybe a low sodium snack (are there any?), heck, maybe just some fruit, eeks - a loaded pistol for dialyzors! I give up!! But you get the picture. A simple meeting of people with kidney disease to share their problems and to talk to someone with similar problems.

I am willing to help. But I cannot do it alone. I will need the support of someone in this endeavor.

Friday, January 8, 2010

My Telugu-isation

2009 was the first year that saw the 'Telugu' in me develop. It all started with 'Magadheera' which I saw thrice. This was really big as I am from Gujarat and knew absolutely no Telugu until recently despite having been born and brought up in Hyderabad.

My Telugu language skills, I can proudly say, are gradually improving. I can speak a little, identify a few letters, understand about half of what people say. I now speak only in Telugu to two people - one a former colleague and one a current colleague.

Let me narrate a little incident that happened the other day. I listen to the radio on my way to work and back. The radio stations mostly play Telugu film music with a Hindi number thrown in once in a way.

There are many films that are remade in multiple languages with songs that have the same music but with lyrics in the appropriate language. One day, the prelude of one such song started. When the words started, I realized they were in Hindi. "Shit!", I said to myself. I was subconsciously hoping that the Telugu version would play! I guess my Telugu-isation is complete!

Thursday, January 7, 2010

A desire to live or the uncertainty of death?

Yesterday, I heard Amar Singh of the Samajwadi Party talk about his experience on dialysis and why he went in for a transplant. In his own words, "I thought it better to die than to continue on dialysis. At the end of the dialysis session, I used to feel totally weak and drained. The process sucks out all your energy."

I understood what he was saying. I totally empathized with him. He subsequently got a renal transplant in Singapore.

Despite suffering day after day, session after session, thousands of people undergo dialysis. Why? To continue living. Most people have a host of side effects of kidney disease. This makes life all the more difficult. Add to this, other problems which healthy people also face - that of their family, their jobs, their finances. Keeping all this in mind, I often wonder, why do we go on?

Is it really a desire to live this kind of a life? Or is it a fear of the unknown called death? Nobody knows what death is like. Nobody knows for sure what comes after. This can be extremely unsettling. Could death be worse than the life we are currently leading? What if it really is? Are we better off now?

Tuesday, January 5, 2010

iPhone apps - doing the UI in code versus Interface Builder

When you develop apps for the iPhone, you have a choice when it comes to doing the UI. You can either do it (almost) entirely in code or you can do a whole lot in Interface Builder.

When I started off doing iPhone development, I started doing the UI almost completely in code. It was fairly simple. I completed my entire project using this method.

I kept flirting with the idea of doing the UI using Interface Builder. It sounded tempting for a few reasons:

1. Programmers always like less code. The more lines of code, the bigger your project, the more the chances of errors and the tougher it is to maintain the code. If you do the UI in IB, there is that much less code.

2. Easy to make changes. It is easier to change things in IB compared to doing the same thing in code. In IB, you have a visual interface - check a box here, drag something there. In code, you have to actually look for the relevant part of the code and then change it.

So, when we decided to change the architecture of our new product, I decided to try out IB for the UI.

We had 2 tab bar controllers which we had to display based on what the user was doing. It was fairly easy to setup the basic tab bar controller with simple view controllers associated to each tab. However, we had a situation where we needed navigation controllers in some of the tabs. I struggled. I read up some documentation. No luck. I then looked up some forums. I found this advice there:

"I use Interface builder sparingly. It often makes things far more complicated. This is one example of it. NavControllers and TabBarControllers should NEVER be made via interface builder, but by code. Apple never uses interface builder for this, as its way too stupidly set up. The programing way to do it is simpler, and far more understandable when you understand a bit of Objective-C."

So, then I decided not to go down that route despite the advantages. I guess IB needs to be made simpler to be able to use it to do the UI.

Sunday, January 3, 2010

The 2010 Freedom Cruise begins today

The Carnival Valor

Ten dialyzors today begin a Western Caribbean cruise called 'The 2010 Freedom Cruise'. They sail from Miami today and return on the 10th. The most interesting part of this cruise is that they will be dialyzing on board! They will be using the NxStage System One portable home dialysis machine. This machine has really given many dialyzors the freedom to travel.

Home dialysis is possible even without portable machines; you could the big machines like the Fresenius 4008S, which I use and other similar machines. However, travel remains an issue as you simply cannot lug these machines around. So, I can only travel to places that have dialysis units. Also, even in these places, I cannot undergo dialysis daily at night like I do at home on a regular basis. Most dialysis units do not have facilities for nocturnal dialysis. They have not heard of dialysis for more than 5 hours!

With a portable machine like the one from NxStage, this is no longer a problem since you can dialyze pretty much anywhere. In your hotel room. In a friend or relative's house. On a ship as these people are going to be doing for the next week. And even in a boat as Bill Peckham did a few months back.

This cruise is a great inspiration for me. It shows that you can lead a normal life even on dialysis. For the last few weeks I have been a little down wondering about things like life expectancy. I do realize that these thoughts pull me down and make me depressed. This cruise tells me that I can do a lot more than I thought I could. Its only a question of planning properly.

Here's wishing all the dialyzors aboard the Carnival Valor a great cruise! Have a blast folks!

Saturday, January 2, 2010

Does being diligent about my health really help?

Yesterday, I met a fellow dialyzor. This guy goes to the same hospital I used to go to when I was in-center. What started as a social meet-up with a couple of other pee-ers (defn. - people with healthy kidneys and able to pee!) drifted time and again to comparisons between both of us.

This guy is really amazing. He has been on dialysis for about twelve years now. He had an unsuccessful transplant about ten years back. Pretty much the same story as mine. Currently, he dialyzes only twice a week. He does not exercise. He takes no medications except for a small dose of a sedative at night. No EPO either. He rarely consults a nephrologist. Despite all this, he has absolutely no co-morbidities (side effects of long term kidney disease). His hemoglobin is 16 (the higher end of normal and he takes no EPO!).

Compare this with me. I dialyze every week day for seven hours on an average. I go for a swim every day. I take all my medications on time. I rarely, if ever, miss a dose. I consult with my nephrologist (often more than one) every month without fail. I am also in touch with some nephrologists over the internet. I constantly read up about my condition on the internet and actively participate in the online forums on dialysis. Despite all this, I have all but one of the co-morbidities associated with kidney disease. My hemoglobin is around 12.9 after all the EPO I have taken and continue to take.

Huh?

Look at this guy. He is not bothered about his disease at all. He is living quite a normal life. He does not even work. Not that he can't. But he does not want to. Dialysis is a small part of his life. I am thinking about my health all the time. I am constantly getting stressed trying to balance my life between work and my health and trying to find moments of happiness in all this madness.

Does this make any sense? This set me thinking. Was all this effort in staying on top of my health really worth it?