Spontaneous travels

Traveling is something that never ceases to excite me. Yes I used to be the 'frivolous' one.

6 months post transplant a new normal seems to be that planing for travels isn't relevant anymore. Everything depends on the bi-weekly tests, their results and what the doctors have to say about them. Of course another dependency is how we feel after seeing the reports/ meeting the doctors.

I am no longer starry eyed about the (never-ending) list of places I wanted to travel to in the world. If the forces align and I do spontaneously happen to land up in one of these places, I will consider myself blessed :)

Its amazing how quickly one's mind can adapt to new situations if it is forced to.  

The facade of being fine

Feelings, insecurities, emotions, situations, facts, figures - it's amazing how many things a patient with a chronic illness has to ACCEPT and OVERCOME on a constant basis.

• Why is it that one is expected to be strong every day/every minute regardless of what life throws at you? 
• Why is crying seen as a sign of weakness? If so, why is being weak (sometimes) a bad thing?  
• Why are we always taught and told to hold back on our emotions and put on this facade of being fine all the time?  

Changes

Interesting to observe the roles different people play in one's (my) life - each person seems to fit into a box. With the changes in my life, the dynamics with people also seem to change...

Some people have emerged out of the blue to become much closer to me than I considered them, few of those I considered close seem to be falling through the gaps, some have disappeared, others view me as the 'damaged good' - as my life currently revolves around my creatinine levels, medicines, hospital visits - I have nothing interesting to offer. Now, why would anyone want to spend time with someone like this right?

Interesting change in dynamics - another new normal perhaps! 

Hope!!

Another undesirable blood test report
Another round of reactive tweaks to the medicine dose
Another test next week...
This cycle never seems to stop.

In India - the tweaks were too often
In Germany the tweaks are too few (despite increase in values)

This process to say the least is extremely frustrating for the patient and for their care givers. The doctors are too busy to explain things. This whole trial and error approach is just crazy.

Amidst all this, I came across this article and I am so glad there is some research on going in this direction: Stanford study in transplant patients could lead to better treatment.

Considering how long things take to become mainstream in the healthcare industry, I don't know when this will...but I'm glad there is hope.

Friends with kids

One of the 'new normal' seems to be our restriction to meet friends who have kids. Reason being, kids going to kindergarden seem to almost always carry some infection.

This one is a real bummer cos we'd really like to play around with the kids and we always now have to check when the kids are away with grandparents/ baby sitter etc so we can meet our friends.

Hopefully we get over this phase before these kids forget who we are, before the parents give up on us and my restrictions.

*Sigh!*

Another milestone: 6 months with Nuo

Today Nuo and I finished 6 months together.
The important thing is, my mom, Nuo and me are doing good so far. Here's hoping things stay this way and the three of us can lead our lives with minimal disruptions ahead.

Thanks Mom :)  

An inch forward

So we finally have a decision on the medications for me and it looks like I'm back to square one. Only this time, it is all based on the series of tests and biopsy I went through since we returned to Germany.
So Everolimus is off - am on the Tacrolimus, Myfortic, Prednisolone regime. Higher dose of Tac and Myfortic and lower dose of Prednisolone.

It's wait and watch time (again). Lets see if Nuo likes this new/old regime this time around....

Another upcoming biopsy

Its a frustrating wait (more than a month...) to know what my medications are going to be - considering I am on 3 immunosuppressant and should be off one. I am in for another biopsy next week - hopefully that is conclusive.

Its hard to deal with this uncertainty and its been frustrating us a lot. We would often discuss if there are any alternatives/ if we need to get more pushy and get things moving somehow...

The reality is, somehow, sometimes, things seem to take their own sweet time.

Today my creatinine is up to 1.92 - not too far from the 2.0 that it was in Sept 2012 when our physician frantically called us to tell me my kidneys are failing - that I had CKD.
We've come a long way since. Compare Sept 2012 to today, the Nephrologist says, "yes, the creatinine is high, but it is not something to panic about. Nothing is on fire. Lets do the biopsy next week and we'll figure out a medium term plan. In the short (immediate) term, we'll continue with the way things are."

• The doctors in India approached a rise in Creatinine (beyond a certain threshold) with more immediate action - changing the dosage of the medicines to control it/ bring it down again. As a patient the immediate action and the resulting decrease in Creatinine is mentally more comforting. But it means popping in more medicines. 
• The doctors in Germany seem to not tweak the medicine dosage too much. Looks like their threshold for the increase in Creatinine is different. With this approach the relatively low levels of medication seems to be a positive, but seeing the Creatinine increasing isn't. 

I am not sure which approach is better/worse.

The situation is FAR from ideal and/or comfortable. Given this situation, I often don't know what to say when people ask me, "how are you?" Yet, on zooming out a bit and observing the course of events since we first learnt about the problem, I seem to be better off today than I was earlier. The fact that the Nephrologists are not panicking about my condition is a positive.

I am yet to complete 6 months of the transplant - we have been well informed that the first 6 months - 1 year is difficult. Perhaps its a little more difficult for us due to the change of hands from doctors in India to doctors in Germany, plus all the other changes that comes with it - environmental, lifestyle...

This post is to remind ourselves about what spirituality has taught us:

• seeing the positive in things
• living in the now
• finding joy in small every day things
• gratitude
• only focus on things that are in your control
• ...

It is extremely hard to be conscious of these values in such frustrating situations. It's so easy to get off track and go down to negativity path, get depressed and stressed - none of which is going to change/make the situation better.

Ironically it is in such extremely hard situations in life that these spiritual values seem to strike the chord the most. 

Enjoying the beautiful autumn days

As we wait for the reports and a decision about the future course of my medications, I tried to set a work out schedule for myself. Getting back to the gym after almost 2 years needs a LOT of motivation :( - especially for an outdoor person like me.

Thankfully, the weather has been very nice. Its been a warm and relatively dry late October. I've been making the most of it - riding my mountain bike. 

• Saturday: 16.98 Kms 
• Sunday: It rained all day so did all the home chores
• Monday: 13 kms 
• Tuesday: 9.24 Kms
• Wednesday: 20 Kms (indoors in the gym)
• Thursday: I took it a bit easy and went for a walk in the wine yards instead for 5.20 Kms 
• Friday: I had all intentions to go to the gym again. Before that, I went to my office and saw all these lean/slim good looking people and my 'damaged goods syndrome' (as Lori Hartwell puts it) took over. Depressed - I just got back home and continued working :( 

I know that perhaps I am not pushing myself enough to see some encouraging signs of weight loss. I also know the kind of perseverance needed and the time it takes. So, my efforts are going to be sincere, but I am sure I will have days like today when my mind will not be with me. Thankfully, my husband (V) plays the role to push and encourage me...

Here are some pictures of the wonderful, sunny autumn days I have been taking advantage of to exercise and recover - on days like these I certainly don't need much pushing to get out and get some exercise.

Is it me/ is it the drugs?

Feeling too drowsy/sleepy: Am I being too lazy by wanting to sleep more?

Stomach feeling full and bloated: Am I eating too much/ drinking too much water? 

Knees and legs hurting: Are these the usual aches and pains of exercising after a long time?

Short breathlessness on climbing stairs: Am I short of breath cos I am so unfit? 

Mood swings: Am I just being too temperamental? 

Most of the times I am not sure if any of these feelings have to do with my actions/behaviors or the side effects of the many medicines I am taking at regular intervals through the day.

*Sigh*  how am I to know? All of these are listed as side effects of one/more of my medicines...so can I fight it?  If yes...there's another item on the list of things to overcome. Mentally and physically. Phew!

(Its not every day that I feel all of these things. Some days are better than others.)

Status Quo - But for how long?

Haven't you heard these before -

• No news is good news
• Don't change a good thing working
• Patience is a virtue

However, when one is waiting for the decision on how to proceed with the treatment going forward the above do not come across as practical and feasible point of views. Its been over a month since we have come back to Germany and still there is no answer to the basic following questions which needs to be answered for Sats -

• Which 3 medicines need to comprise the 3 drug protocol which she needs to get onto going forward
• What is the individual dosage of the 3 medicines

Both the doctors here and Dr. Vishwanath agree that she needs to get off the 4 drug regiment as quickly as possible. This is critical as she is more heavily immuno suppressed than a "normal" transplant patient but disagree on the combination of the 3 drug protocol.

In order to have a better understanding of the approach to be taken a battery of tests have been performed on Sats - some reports have come e.g. BK- virus is negative and some are awaited e.g. Donor related antibodies. In the meantime we are all sitting and twiddling our thumbs while the creatinine is stable at a higher range than normal of 1.6-1.7. The normal as defined consistently for Satya is a range of 1.3-1.5.

Sats, doesn't want to push the Doctors here too much but I am exasperated with this wait.

Taking good health for granted

Living with a chronic disease makes me look at healthy people with a different perspective. I find it absolutely shocking how people take good health for granted - in the name of pleasure, rituals, religion, or pure indulgence.

For a patient it's a blessing to be plain alive, blessing to be able to do things on your own (like drive, go to work, cook...really small things in life). Each day when I am able to lead a near normal life without having to visit the laboratory/ hospital is a day to be treasured and enjoyed.
I am just completing 5 months of my transplant and while I do not like to keep harping on the fact that I've been through this (no I do not need sympathies) there are times when it is overwhelming.

For me, gaining as much of my normal life back is top priority - because only I know what it is like to loose it.

It's strange for me to see people place their health in other order of priorities and pushing their luck with their life. Well, each to their own!
But, what's worse, I notice that me putting my foot down to put my health on priority is not always well understood or accepted by the breed of healthy people.

Lesson learnt: Even a life changing episode (for me obviously) like this will not stop people from having unreasonable expectations from me. Now, more than before, I need to learn to focus on my priorities and muster up the courage to say, "no." 

5 months with Nuo

So far so good. Still a lot of uncertainty - course of medication to follow going forward...will the Creatinine come down to the range of 1.3-1.5 (it is slightly higher right now but thankfully stable). 

Keeping our fingers crossed. 

Ironies of the world

As an organ recipient, me and people like me are perhaps the ones who can most appreciate the act of donating one's organs. We are the breed that will forever have gratitude towards those who have been selfless to help us get a life.
We are also among those who perhaps understand the issues around availability of organs etc.

So today I did something that has been long pending on my list of to dos - sign up to be an organ donor myself, (Obviously those that I was born with and are still functioning) so I could be of some use for someone else. To my surprise, the doctor told me, "they may not accept you to be an organ donor."

I had heard that one organ donor can save up to 10 lives...with different functioning organs. By that, I should be able to save 9 lives - as my kidney are not counted.
Why can't my other organs still be considered for those in need of them???

Phew!! I wonder if there is any logical reason behind this or if its just one of those archaic rules of the world that nobody has questioned enough. No wonder we have such scarcities in this world.

Nevertheless, here is my Organspendeausweiss (Organ donor identity) - if anything were to happen with me suddenly, I will let the doctors at the time decide what to do with my functioning organs.

In the last few months, my husband has signed up to be a donor, two of my friends and one other person I know too...I am so proud of all of you. There's hope in this world :)

Timing

I'm back in Germany in late September.

There are a few positive things about returning at this time: 

• Spring and summer are long gone so I do not have the urge to spend hours working with plants and flowers for our balcony. (It's too early post transplant to do so) 
• Strawberry season is over too. It would be extremely hard to resist them when the lovely looking and tasting strawberries are every where and I wouldn't be able to eat them.  
• Given its already getting cold, I am not craving for ice cream and/or gelato.
• With my weight gain, its easier to hide it under multiple layers of clothing :D

The only negative aspect of landing back in Germany at this time is, we walk straight into the 'cold/flu' season. Almost every other person is coughing/sneezing. With the days of sunshine progressively reducing, this tends to linger on almost through the winter months - doesn't make it easy for an immunosuppressed person.  

It's a long haul/ life long thing

One of the hardest thing for me to deal with is trying to explain to people I meet that my illness is one that is a life long thing - I'm in it for the long haul.

• I am going to have frequent visits to a Nephrologist/ hospital for tests and/or other procedures
• My immunity is going to be suppressed for the rest of my life - which means I will have some dos and dont's to be included in my life now on. 
• I will be on steroids for the rest of my life

While I look fine and am perhaps medically fine (thankfully)...these things are going to continue. Every time I tell someone. "I have to go to the doctor for a test again." Their usual response is, "Oh again? Is everything okay?" 

Each such time, I have to tell them (and myself) that this is going to continue for life. It's difficult to rise above this - each time I am beginning to feel like I can have some normalcy in my life, the next test/procedure and the anxiety associated to it is just around the corner to remind me - you are still a patient and are going to be one forever. 

A fellow transplant patient and blogger summed it up nicely, - 'Kidney transplant is not a cure. Its a treatment.'

Our way is the right way

In my own professional life, I've had several projects where we had to 'take over' from someone else and take things forward.

Somehow this never seems to work when it comes to how doctors work. Especially in the 'west' where legalities, insurance etc is so enmeshed into the healthcare system. 

Having gone through 4 months of rigorous post-transplant care, tests and monitoring in Bangalore, we got back to Germany in a relatively stable state with a defined medicine protocol and a proposal to move forward. 

Armed with the report of every test done in Bangalore, we meet our Nephrologist in Germany. Firstly, the amount of reports to go through is going to demand a lot of his busy schedule. Its a challenge. Secondly, he has a different opinion from that of the doctors in India with respect to my medicine protocol. Thirdly, given this situation, he recommends to basically jump right in with a biopsy - get things as clear as they can be, combine them with some tests for viral infections (which were not done in Bangalore)...then based on these results make a decision on the way forward. Phew! 

When we were seeking second/third opinions in September 2012, all Nephrologists were consistent with their recommendation to us. One of them said, "we've all read the same books." 

So what happened now?  

For the patient, its time to go through the entire drill all over again :(

Have they ever tried to put themselves in the shoes of a patient and TRY to understand how this could feel for the patient? - yes i know if Doctors were too emotional they won't be able to do their jobs well but a little bit of empathy could go a long way. 

Lesson learnt: Never expect one doctor to acknowledge and/or agree with the methods/procedures followed by another. Even if they SAY so. Sooner than later, they will insist on doing things again - THEIR WAY - because that's the RIGHT WAY.

A week and it's back to square one

Its been a week since we got back to Germany. This whole week we have been visiting Nephrologists almost every day - giving blood samples almost every day.
We used to get frustrated with the hospital in Bangalore for doing tests too frequently...and here we are.

Apart from meeting the original (pre-transplant) Nephrologist, we also decided to meet and explore the option to go to a new Nephrologist - walking distance to our home. The primary reason was the convenience of being able to walk over given the frequency of tests I am needing.
Interestingly, the doctor close to our house came across as a more open minded, very well versed in English and more specialized in transplant patient care.

As we have just gotten back and are yet to start any post transplant treatment with either, we decided to make a switch to the Nephrologist close by - communicated this to his clinic too.

Lo-and behold, we have another decision to make:

• Get off a nephro toxic immunosuppressant - Prograf OR
• Get off Everolimus (something introduced on me to stabilize my Creatinine as I was supposedly sensitive to Prograf. This is the protocol I was on before the Creatinine started creeping up and I had a biopsy done) 

Since I've had a rejection case in the last 4 months, getting off Prograf completely sounds risky. Hence the Nephrologists in India proposed keeping it but in low dosage. Together with Everolimus. But get me off Myfortic - a combination none of the Nephrologists here want to follow. 

What does a patient do? 

Regardless of what which doctor in whichever country says/does, my body has turned into one experiment to push in some combination of chemicals, do a test every other day, tweak the combinations...keep waiting and watching...ultimately if the results are not as the doctor desires, do some invasive thing like a biopsy or a surgery or whatever else there is to do...

So why do doctors try to give this false impression that they care to give me an option to choose? 

So as the spiritual leaders say, "just surrender" - except they preach, surrender to the divine. 

I need to just surrender to these doctors who are incapable of empathizing with their patients. I might as well sign up to become a research subject to a hospital around here...at least someone will benefit some what they learn out of the experiments on my body. 

ANNOYED at the attitude of doctors and a sense of helplessness I feel! Whoever said, life after a transplant is 'near normal.' The "NEAR" is not to be under estimated. 

From 7 to 2.5 lts

In India, given the weather and as per the doctor recommendation, I was consuming 7 liters of water a day.

In Germany, 7lts is "extreme."
Given it is colder, less secretion of fluids from the body...the recommendation is to drink between 2.5 - 4lts - depending on the amount of exercise I do etc. 

Meeting my team

I briefly stopped by at work to say hello to my manager and my team members.
Was pleasantly surprised to see a wall poster and a cute card on my desk welcoming me.
I'm not quite ready yet to get back to full time work, but I am certainly looking forward to it.

Thanks team. I'm touched :) (again)

The next milestone: Getting back home and defining the new normal

The doctors in Manipal Hospital, Bangalore have officially given me a fit to travel letter.
We will be flying back to our home in Germany tomorrow night.

After almost 8 months of being in Bangalore under close watch of the team in Manipal Hospital, we hope to now slowly get back to our normal life - the NEW normal. Needless to say, we look forward it.

On 1st May, (while leaving Germany to begin the countdown to the transplant) I felt I was walking into a cloud uncertainty. Strangely, I feel the same now although the context and scenario is different. Medically, I am better off now and hope to remain so. Having experienced so much ups and downs, the 'change of hands' (and place) from the team in Bangalore to the team in Heidelberg brings up similar feelings of uncertainty.

• How, what would our new normal life be and feel like?
• What would be the school of thought of the Nephrologists in Germany with respect to the post-transplant care
• ...
• ...

4 months and 5 days since the transplant. Hoping for a 'normal' life ahead...yet conscious of the fact that not much is in our control after all. So, here's to embracing uncertainty and taking on whatever (else) life has in store for us.

A doctor that inspires :)

Although (unfortunately) the reasons for meeting my Nephrologist - Dr Vishwanath at Manipal Hospital, are not always positive, the experience is always nice.

Now that he believes things are stabilizing for me, he told me about the World Transplant Olympics that happens - suggesting I should try and participate in it.
How inspiring is that :) ?

My curiosity couldn't be sustained so I did look it up. The one sport that I could consider is Badminton. I am quite sure I am highly underestimating the competence of the contestants in such an event by thinking I could participate, but hey there's no harm in scratching the surface, learning more and trying eh??

The added incentive is, the 2015 event is in Argentina :D

Thank you Doctor for putting this thought and potentially a goal in front of me.

Disturbing awareness levels

Last week on two separate occasions I was disturbed at the awareness levels among generally, well educated people about Kidney related disease - especially, transplant scenarios.
I met a seemingly progressive young woman, who asked me why I was wearing a mask...after my story in a nutshell, she asked, "really? your mom had to donate a kidney? A well reputed, big hospital can't get you a kidney if you told them you need one?"
*Sigh! where does one begin explaining?

What's worse, at the transplant centre, I learnt that both parents of a 13 year old needing a transplant, having the same blood group were refusing to donate their kidney. Putting this 13 year old at risk and pain...'cos somewhere they feel there might be some other option to get a kidney.
:( - I felt incredibly grateful to my mom at that point.

Shockingly, this awareness levels among the urban, educated class is after a series of recent loud Organ donation campaigns in leading news papers across the country.
 

Realistically positive?

I happened to read this article about fighting and surviving cancer
How the society tends to position it as patients waging a war against it and if they are determined enough, they win; that positive attitude is everything...

I think this outlook of the society is not just true of cancer. Perhaps cancer gets more limelight given the number of celebrities associated with it. But I have faced this with my kidney disease too. I recall the early days when we started disclosing my diagnosis to close friends and family members, there were many who asked me, why couldn't I take better care of my health?
How could I let myself get something like this...and the closing lines were always, "be positive, it will all be fine."

I realize there is nothing more most people can say and they mean to provide solace. Being the already positive minded person I am, it is very disillusioning to live through days and times when none of the positive attitude or determination actually gets the desired results.
Every time I have a blood work and have to wait for the results its tense because no amount of my positive attitude influences the creatinine levels. It takes its own course, it is beyond me to grasp what all the medications are doing to my body other than the visible side effects...

I am a believer in keeping a positive outlook to life, however I wish it was not over done because there really are moments when life is totally out of my control and I can be nothing but an observer to it (if at all).

As a patient that faces a life long condition, the daily drill of medications, other practices and generally coming to terms with it can already be overwhelming. there are bound to be days when my positivity and energy levels will be down - especially during phases when things are not going as desired.

It's bad enough to live with such conditions, I do wish I am not made to feel like a looser and failure too for not being determined enough/ sincere enough in my efforts/ positive enough bla bla.

Can we base all this positivity on some realism and empathy towards the patient?

Being an immunosuppressed Indian in India

We Indians take a lot of pride in our immunity levels. We are brought up with the motto - 'lakkad hazam, pathhar hazam' (literally translated - wood digested, stones digested). We grow up relishing street food, drinking stuff at these road side eateries - quality of which cannot be guaranteed, eating off utensils that are not washed under the most hygienic conditions (although these things are slowly changing). All this makes us fit and strong!

It's a common joke that street food replicated at home, under more hygienic conditions is not as tasty.
It is not uncommon to find colleagues at work sniffing away, working with a bad bout of cold/flu like symptoms.

And here I am, an Indian with a suppressed immunity. So what's it like?

• I'm perhaps perceived as a snob and/or a 'foreign returned' Indian for:
• walking around with a mask - cannot tolerate the dust and pollution.
• carrying around and frequently using a hand sanitizer
• standing away from a queue/crowd of people at a counter...
• refusing to eat/ drink anything that is not hot and cooked
• No street food for me...that takes away a lot of fun of being in India. So I have to make do with the less tasty, more hygienic replicas made at home.
• Every time, some one invites me over to their place, there are a whole bunch of dos and don'ts. 
• I have to try and be as polite as possible to say, "no" to meeting people who just have a 'normal cold and cough" or meeting people with kids that are carrying some infections.
• I perhaps offend a lot of friends and family members for all the precautions towards catching infections. I don't blame them because most often small things that can spread infections to someone like me does not even occur to a normal Indian.

So from now on, for those who do not know that I've had a kidney transplant and am on immunosuppressant for life, I am the snobbish Indian/ non-resident Indian (NRI) who cannot deal with true India anymore :)
 

Suitably impressed and glad

Over the course of this experience we have had the opportunity to closely interact with both the German as well as Indian doctors.

In Germany, S has been under the care of Dr. Ziegler at http://www.dialyse-heidelberg.de/  and also went for consultation to http://www.kfh-dialyse.de/kfh-nierenzentren/nierenzentrum,,204,.html. Her case is being supervised by Dr. Zeier of http://www.nierenzentrum-heidelberg.com/index.php?id=2.

When Germany closed down for Christmas break in 2012 we decided to fly down to Bangalore and get opinions of Doctors here. We did the rounds of Manipal Hospital, Columbia Asia, Apollo, NH and St. John's.

We found that the opinions of the doctors in Germany and in Bangalore was the same. All of them had read the same book.There were subtle differences e.g. doctors in Germany believed in early dialysis and the doctors in India believed in late dialysis but the long term diagnosis and prognosis was the same.

Of all the doctors we met in Bangalore, S had an instant connect with Dr. S. Viswanath at Manipal Hospital. He was the 1st one we met in Bangalore and when we decided to do the surgery here he was the main factor in deciding on Manipal Hospital http://www.manipalhospitals.com/dialysis-overview.html. S' surgeon was Dr. Deepak Dubey while S' mom was operated on by Dr. Shivshanker. All their treatment was supervised by Dr. Ballal. Manipal Hospital is slow and expensive but not for once did I feel that the medical care was of inferior quality. Pre-op and post-op procedures were thorough and we kept the German doctors updated with the procedures and results. The German doctors were very impressed with the detail orientation and the facilities available in Manipal Hospital. They confirmed that there is nothing else which they would have done more in Germany. It is great to know that atleast in big Indian cities top class medical care and facilities are now available. However, the one factor which definitely stood out was the friendly staff at Manipal Hospital. From the security gaurds, to the PCC, to the OPD nurses, the nurses in the 5th, 8th and 9th floor wards, to the wardboys, to the ammas everybody is friendly and meet you with a smile. Their warmth and support is infectious and the feeling of caring is commendable.

This warmth brings the Indian touch to the world class facilities.

A friend in need is a friend indeed

We cannot thank enough the friends who have stood beside us in this difficult time and whose support we will continue to bank on as we continue our journey with Nuo.

VC- more than us our plants will thank you and because of them we are eternally indebted to you;
SR - didn't imagine that this adversity will enhance our engagement with someone but in my opinion it did with you and made us closer;
K&R, M&D, A&R, A - how many times have we bored you with all the scary, stupid and sad stuff but each time we have come away reassured and looking forward to the next moment. We also would not have done without the movies and the books which you lent us;
BD - even though your blood doesn't run in S's veins we cannot thank you enough for all your support and efforts. Please pass on our gratitude to your friend who came all the way to give blood and ended up giving platelets instead;
E&D, P, F, M&T - you guys are our pillars;
SB - all your photos are treasured;
SV, GJ, ST, G&N, DG, TH, SM, AK, MR - thanks for your concerns and well wishes + the encouragement which gave us confidence;
ST - all the wise words which are priceless and for whom we keep coming back to you. In times of your own adversity and tragedy you took time for us and that is beyond gratitude;
MH - even in the drab hospital OPD waiting room you never stopped cracking jokes and cracking us;
AB - you are an angel. With all the technical terms and moral support plus kick in the a** you have pushed us to deal with this head-on;
MW - you ensured that our meager finances were in order and helped us immensely in getting the loan we needed at the earliest

And all the others who are not mentioned here but are always in our hearts. We thank you for your prayers and wishes and unabashedly ask for more.

We knew family would stand by us when we took the decision to do the surgery in Bangalore but we never realized how much your presence would be crucial.

The ghost of creatinine

All through our writings you would have come across this term Creatinine. I don't really know if I ever mentioned what it is. It is a rough marker which denotes the functioning of the kidney. For a normal individual it ranges from 0.6 to 1.4. Higher the creatinine, higher is the distress of the kidney, signifying greater damage and less toxic clearance. After a transplant the ideal scenario is that the creatinine value should come down to the normal range and remain there however many doctors now are comfortable and satisfied even if the creatinine is slightly higher say 1.7 or so for a donor.

Now this thing creatinine is very temperamental. If there is too less immuno-suppressant it rises, if there is too much immuno-suppressant it rises; if there is high BP it rises, if there is low BP it rises; if one does less exercise it rises, if one does too much exercise it rises etc. etc. The other important thing to keep in mind is that a reading on a specific day doesn't really matter. It is the trend over a few days / weeks which is critical. Hence our physician says "creatinine or immuno-suppresant management is an Art based on Science".

The one thing which is pretty clear is that creatinine is better if there is enough hydration of the kidney. It is very important that a recipient drinks adequate amount of water regularly. S has been trying to keep up her intake to 6 lts. She started with 4 lts, had to increase it to 5 lts and now has been asked to maintain 6 lts if possible.

Tomorrow we go again for the next round of tests. The trend had been good over the past few weeks with creatinine coming down to 1.3 levels from 1.6 but last time again it increased to 1.5. By the time we overcome the disappointment of a not so satisfactory result the next test comes up - hopefully tomorrow will be good.

Read that fine print!!

Most of us take Life Insurance policies and other such covers when we are younger, healthier...and then on just pay the premiums and keep them alive.
Given the expenses we had to incur without health insurance coverage, we were forced to take a closer look at all these policies I had.

By accident V found that one of my Life Insurance policies had a rider/add on of critical illness and Kidney Disease was one of the listed illnesses. The only catch was, he read this after the transplant was done. We checked with the provider if we could still claim this and the answer was "yes."

Given how stingy insurance companies are with claims, we were quite sceptical and were fully prepared for our claim to be rejected. With a request of one additional document from the hospital and all my medical reports, to our surprise - lo and behold, they actually approved it and we got the due money. Given it was just a rider, the amount isn't a whole lot. Its just a fraction of the cost, but is better than nothing.

Talk of counting blessings eh?

Lesson learnt: Find some means to remember what each of your policies entitle.

Setting the benchmark

Before we proceeded with the transplant we were informed that for Manipal Hospital Bangalore this would be a new frontier. The oldest donor they had worked with before was 65 yrs and with my mother-in-law who is 69 yrs old they were not sure. The other possible option was my mother who is 62 yrs old and between the two they prefered my mother-in-law even though she was older due to the fact that the HLA match was better. Actually the match was 4/6 and is considered very good. Even before the surgery they informed us due to this "marginal donor" condition we should be prepared for the following complications -

1. Suturing could be a problem due to the calcification of the arteries. This is a normal condition which happens as a person ages. 
2. The creatinine might settle at a higher value of around 1.8 due to it being an aged kidney needed to function for a younger body

We all decided to proceed seeking divine grace and because this is the best option available. Thankfully the surgery was successful without any complications.

Recently, I asked our physician that now they have had the experience with a 69 yrs old donor what is their learning - are they proceeding with doing other "marginal donor" transplants or are they reverting back to slightly younger donors. The answer was that the hospital has already gone ahead and done a transplant with a 70 yrs old donor. They are also actively considering 3 other cases which are above 65 yrs.

We felt good hearing this. Having undergone this process we feel that we have contributed in helping few other people as the hospital seems to be more confident in considering slighty older donors than before. Worldwide statistics seem to suggest that a younger donor is always a good option but in case a living, related donor with a good HLA match is available then even if the donor is aged the prognosis is comparable to a younger, unrelated donor.

I can MEET my friends and family members again - face to face :)

Having completed 3 months of my transplant, I am now officially allowed to have visitors over and also go out and meet people - as long as I am not out at the time when places are too crowded; as long as its a clean place; as long as I stick to eating, drinking hot, cooked stuff...most of the time I did keep my mask on even though I am now allowed to be without it. Enjoying the new found freedom.

With Deepak and Sandy at Labs, Bangalore...so many years hence, nice to still retain that bond.

Exploring the quaint coffee shops of Indiranagar (those that allow for some fresh air, outside seating) with Rana and Kusum is always fun. Its a new place each time but each time, the time is never enough. This time Sid decided to join us too :)

Muktha, Mrudula and I braved the crazy Bangalore traffic and rain to catch up and bond over gossip and our lives in general :)

 

If 'situations' were different, WE would have all made that trip to Ladakh. Indeed!! Lets hope we can make it some day.
With, Deppe, Manjari. Watching the antics of Sid can be such an endless entertainment :D

Finally, we managed to synch our dates and  times to see Ankura and Abhi's cute apartment.
We had so much to chat about that I forgot to take a pic of all of us together in their house.
"See you in Germany," said she. We'll certainly look forward to that. Thanks for deck of movie CDs :D

With some friends you can just pick up right where you left - even if that was a couple of years ago...

Was awesome catching up with Radhika, one of my first friends in Bangalore. It's great to have you in my life :)  



I so dislike this steroids fed puffed up face of mine :(



 

After several years, my uncle came visiting us today to check on my mom and my health. He had been checking on us regularly over the phone. Given his own age, he took the trouble to come over...it was nice to have him over. Glad to have the blessings of elders...to get us all through this phase.

Spent a lovely afternoon over coffee with Jaishree, in Bangalore. Thanks for coming over from Delhi Jai - even though it was a brief meeting, had a wonderful time. Feel blessed to have friends like you in my life.

3rd (month) Anniversary

Today Nuo completes 3 months in its new place.
Has it settled in?
Don't know yet. It's still in the process I guess.

Completing 3 months is a milestone for most transplant patients. I now have lesser restrictions. I can now meet people!!!! I can start visiting some public places but during off-peak times so there are not too many people around, I can include more things into the 'what can I eat' list, my silverware and plates do not need to be sterilised anymore as long as they are kept clean.
Most of all, I do not need to wear my mask anymore (as long as I'm in a relatively clean environment).

I need to slowly and steadily get Nuo to experience normalities of my life.

"I'm happy to have you in my life - I hope we share many more such anniversaries in future."

Mood swings of the LAB

When the Creatinine level shows low and well within the normal range, our happiness is quite evident to all. (So is our displeasure and disappointment when they values are higher...)
Over the course of all these tests, it has happened on many occasions that we learnt later from the doctors that the LAB was having mood swings.
Incidentally, the day my Creatinine was low, it was on the lower side for most patients - so something was wrong at the lab that day. The day my Creatinine was higher, it was on the higher side for most patients :D

Can there be some weather forecast like thing to know how the LAB was functioning a certain day so I can set my expectations right?

No wonder the doctors rarely have much of a reaction to the Creatinine value of a certain day - because its the TREND that matters to them. This fixation to the value of Creatinine seems to be this naïve thing patients do.

Today, as I awaited the value of Certican in my blood, I receive the Tacrolimus value instead. The LAB assumed the Tacrolimus value needed to be checked as that's what's been checked several times before - despite clear written instructions to check Certican levels. Phew!
Now they are going to run another test and get back to me about Certican levels by tomorrow...this decides future course of action with my medications!!!

Well!! Things happen - dealing with it all as it happens and watch the fun as an observer to my life.

Story of the side effects

Need - Immunosupression protocol
Medicine - Cellcept 750-0-750 mg
Effect - S developed excessive bloating. She had an upset stomach, was vomiting and in the end was completely dehydrated. Slowly she developed severe stomach ache. Creatinine shot up to 1.9. She had to get IV fluids inserted for a day and then stabilized. Endoscopy was also done to rule out gastro.
Substitute - Myfortic. S has adjusted well to this drug

Need - Immunosuppression protocol
Medicine - Wysolone 30/25/20/15 mg
Effect - S has got a lot of swelling on her face. She almost looks like an overfed child. She also has facial hair growth which was not there before. She has written about the emotional and psychological effect in another note.
Substitute - None. She has to bear it. The opinion is that these effects are reversible and will go away over a period of time as the dosage is reduced below 10 mg

Need - Immunosuppression protocol
Medicine - Tacrograf 1.5-0-1.0 mg
Effect - S had developed hypertension which she has never had. Even when the kidney functions were not optimum and deteriorating her BP was normal and under control. However that is not the case as of now. BP levels are between 124-132 / 84-92. She was originally taking Dilzem 60mg-0-0 and Selokon XL 25-0-0 to control the BP. Right now she has been advised to stop Dilzem and continue with the latter.
The other issue is that the doctors suspect that Tac is causing excessive toxicity which is preventing the creatinine levels from coming down. In order to address this, another drug has been introduced called Everolimus 0.25-0-0.25 mg and Tacrograf is being steadily cut down. Since the time Everolimus has been added, S has been complaining of some vertigo problems but the doctors believe it is not serious and should settle down in a couple of days. Tac will not be completely removed due to the rejection episode but after sometime Myfortic could be reduced and ultimately stopped. 
Substitute - None.

Need - Treat UTI
Medicine - IV Ertapenam 1gm once a day
Effect - Caused a massive seizure within a few hours of administration. As soon as it was injected in the evening S was uncomfortable, spent a disturbed night and early morning had a seizure. The drug doesn't suit patients with central nervous disorders and should not be given to people with low seizure threshold levels.
Substitute- IV Meropenam 1 gm twice a day. This is a safer drug and very effective for UTI

Celebrations?

Our 4th wedding anniversary - i was taken in an ambulance to Uniklinikum, Heidelberg. Thus began a new journey...
Christmas, New Year - spent seeking opinions in different hospitals in Bangalore
Father-in-laws birthday - running around completing legal formalities for the transplant
Dad's birthday - working out procedures in Germany, preparing for the upcoming months of stay in Bangalore.
May 11th, I successfully finish my course - preparing to get admitted in the hospital on 13th for the upcoming surgery on 15th.
Mom-dad's anniversary - spent in separate hospital rooms. Me in isolation.
Mother-in-law's birthday - providing updates on the phone of my condition
I finally own my apartment (cleared my mortgage) - visiting the hospital twice daily for injections
Mom's birthday - finally was allowed to eat some sweets. But that's it.

Now, V(husband's) birthday, looks like will also be spent with no celebrations...

That's just how overwhelming things are trying to deal with this situation - it overshadows real reasons to find joy and take a moment to celebrate :(

All that spiritual bullshit

My faith in spirituality has increased through this journey...
Yet there are days when believing in the principles and philosophies of spirituality seems not only difficult but just IMPOSSIBLE.

I've read lots of spiritual books in the last several months. One BASIC principle is to appreciate and live in the NOW as that's all there IS.

It is frustrating to the core when me, the patient is the only one trying to follow this principle.
Despite being witness to as much uncertainty and surprises life has thrown at me and people around me, it is still an alien concept to just take things as they come and focus on the now.

With my mind working from one test to the next and freaking out with the Creatinine playing yo yo...its amazing how far in the future others can really think of and worry about.

Yes spirituality also taught me, I can only control myself. So, I'm going to still focus on the NOW...if other's cannot too bad. They can drive themselves crazy if they choose to.

Creatinine decides to play yo yo

The last few tests reports have been rather unstable, so have been emotions, frustrations and tempers. Every 3-4 day we eagerly wait for the report of the blood test only to find out it has not yet stabilized - the doctors call it Yo Yo Creatinine - when it takes time to stabilize at a certain level.

Yesterday it turned out that another problem was, the trend was, it was slowly creeping up. So now I have school of thought applied on me.

• A new immunosuppressant - Everolimus has been included to my medicine protocol.
• The traditional Tacrograf has been reduced (not eliminated due to the rejection incident recently)
• Myfortic will slowly be phased out
• Prednisolone will also be slowly reduced.

I'm now on this new experiment. Next test is on Saturday. Hoping...

6 litres of water and more...

Hydration plays a very big role in kidney function. So I am advised to drink 6 litres of water a day and if possible more... :-O

Thankfully this wont be a permanent thing and I wont be a permanent contributor to the world water crisis :)



 

 

Mirror mirror on the wall

I noticed today that other than the fact that my face is all puffed up there is increased facial hair growth too - something I never had before.
A known side effect of Prednisolone.

Although I will be completing 3 months of my transplant in 12 days, the dosage of this steroid and also my immunosuppressant is quite high.

So I have a bloated belly, puffed up face, more hair on my face than before.
I wish I knew there will be all these things happening to me post transplant - that I will have to deal with it for a long time. Yes, within the big picture these are probably temporary and minor but for a woman these things play a huge role in self esteem, morale and the STRENGTH needed to pull through this.

I hate to look at myself in the mirror.



Old me (Before)



New Me (after transplant and consuming steroids)

 

In the end everyone is alone

I realized yesterday that at the deepest level of one's being and experiences, everyone is alone in this world.

Regardless of joy or pain, at the end of the day a feeling/ experience can only be best felt by the person going through it...there may/ may not be someone to share this with.
Even if shared, there is no guarantee how the other person receives this and might respond. That person will have their own context, preconceived notions about things...

This realization finally gives me a sense of why it is so important to be centred at an individual, personal level, be conscious of the feeling...why is it important to place one's own self and one's own needs above the demands and expectations of others.

Re-discovering 'self' (finally) - I do not think its bad to be 'selfish' anymore.

(Disclaimer: I am still grateful and blessed to have all the amazing friends across the world in my life. This post comes from a very personal level of introspection and soul searching)

The schedule

• Constantly measure urine output (yes, through the night too)
• Wake up at 8:00 am
• Measure my weight
• Measure my blood pressure
• Keep a log of weight, blood pressure, water intake and urine output
• Sterilize a glass, silverware and a plate in boiling water
• Boil water for drinking
• Provide my blood sample for lab tests
• 8:30 am take my immunosuppressant with warm milk (milk - for better absorption)
• Wait for 30-40 min
• Eat breakfast - only warm, cooked food
• Wait for 30-40 min, take the next dose of medicines
• Get to the hospital for antibiotics injection
• Get the lab test report
• Wait for my turn to meet the doctor and discuss the report
• Get home to have lunch
• Wait for 30-40 min to eat the afternoon medicines
• Get some sleep 
• Get back to the hospital for the evening dose of antibiotics
• Organize freshly cooked dinner for me (I could not eat food cooked in the morning)
• 8:00 pm have the evening dose of immunosuppressant with milk again
• Wait for 30-40 min
• Eat dinner
• Wait for 30-40 min
• Eat the last dose of night medicines
• Drink 5-6 litres of water through the whole day

 

Gratifications

It's been a challenge to keep up my positive spirit off late. Every day has been a new day with new challenges...it's been hard to focus on the smaller things and find joy...
After a lot of practicing, I'm slowly able to appreciate the reasons I am able to smile even on the toughest days...
Seemingly insignificant people come forward to help in their own small ways, others who cannot do much more simply make the effort to come over, speak encouraging words...

In a time when we can do with help in many more ways, I find it incredibly humbling to have help coming in from unexpected sources and forms. It really helps discarding a cynical world view and believe that there is still a lot of humanity left among ordinary people.

Through this whole experience my belief in spirituality is certainly deepening, as is my belief in karma. Just have a genuine heart, do the right things without expectations from others...

Thanks for all the people across the globe who are thinking about me and my mom, are praying for us and helping in more ways...I am grateful and blessed to have you in my life.

Two bedrooms and a war room in the middle

Having two patients - one after a kidney transplant, the other post a mild stroke in post operative recovery phase at the same time is a nightmare coming true for any household.
Worse, both these patients are the women of the house.

The post transplant patient needs to be in as much a clinical environment as possible to avoid chances of catching an infection. The post stroke patient does not have complete control on their bowel movements and needs to use the bathroom. Both this happening in the same house with one 77 year old man to take care of his wife and the other a 37 years old man for his wife.

The two patients confine themselves mostly to their respective bedrooms...the two egoistic men(as men often tend to be) try to manage things in the house...cooking, washing, cleaning, and hundreds of other chores. The amount of this stuff to be done right now is many folds more than even the most women centric thinking man. While they both are doing a fabulous job in their own way, they do get on each others nerves very often.

Am trying to 'heal' given the circumstances...God be with me and my mom.

Healing amidst stress

Back home, the new saga of family drama and how each individual deals with stress begins to surface itself :D

Dealing with such situations is hard for the patient but its also very hard for the family members - something to be expected. Each person has his/her way of dealing with difficult situations. So there are bound to be unpleasant moments.

Its important to remember, everyone's intentions are good - their manifestations could be questioned.

My spiritual inclination deepened during these times. I found talks of Sri Sri Ravi Shankar on Spotify and I would listen to them everyday before going to bed - very peaceful. In the afternoon, I would meditate a little.

Appreciating small things

• Getting the catheter removed and gaining back my freedom to use the bathroom at my own will was such a delight.
• Getting the chance to get a quick bath (at 6:00 am) and feel clean was something I looked forward to though I was mostly still half asleep.
• 24th May, the blood drain pipe was also removed and I was told I could go home the next day.  YAY!!
• 25th May, I got discharged from the hospital. Sad that my mom was still there and was to undergo her arteries surgery :(
• After being in isolation for so many days, being out in the open, seeing people, the traffic on the potholed roads of Bangalore on the way home all felt amazing. I was still in pain but felt energetic and enthusiastic.

BUT! I had already developed a Urinary Tract Infection :( - Apparently, long use of catheter often results in such infections. This meant I needed to be back in the hospital everyday for the next 7 days to get antibiotics. BLAH!!

But hey, for NOW, I was going home.

Mom has a stroke

I recall, I could not get my mom out of my head on 22nd morning. I could not stop crying....I really wanted to meet my mom and know how she was doing and why she had not been discharged yet. Something was not feeling right.

Seeing me in this state, the head nurse allowed V to come in and talk to me.

My poor mom had suffered a mild stroke due to blockage in her arteries that supplied blood to the brain. It was a blessing in disguise that this happened while she was in the hospital - they could immediately act on it and do what it takes to control it.

As disturbing as it sounds, I felt relieved to know that prompt action had been taken - that she was in good hands. I also somehow believed this was going to help her in the long run.

I prayed every night that God gives her the strength to get past this. After having done such a humanitarian act of donating her organ to me, she had to be dealt with the right way...no wrong should happen to her for her selfless act.

Suddenly I felt strong again to pull myself together, get better sooner so I could help her get better.

I have a new kidney

Still sedated, I faintly remember a doctor telling me it all worked out okay and my mom was doing okay too.

As I regained consciousness, I saw I had pipes running all over me - for urine, for blood discharge from the new kidney. I had an intra venal connection on my shoulder and on my fist. My stomach felt twice its size and I weighed 6 kgs extra compared to a day earlier :-O
The amount of urine is closely monitored and is a sign of the functioning of the kidney. The nurses keep checking on this and I was asked to drink as much water as I could.
WOW!! This was overwhelming.
Just two days back I was up and about, and now all this. The thought did cross my mind, 'was I better off before?'

Of course, medically, I was better off now, but I seemed to have lost all control of my body.

I wondered how long this was going to last. More so, how long would it take to come to terms with my new realities. So many thoughts, but no way to share them cos I was kept in isolation - trapped inside a room with just the idiot box for company. Nurses walking in and out...no chance to see the face of a loved one let alone pouring your heart out - one of the lowest moments of my life so far.

Lesson learnt: Never look at a mirror after a surgery - that too a major one like this.
 

The countdown

Although my medical reports were not good, I felt fit and fine enough to travel internationally, alone. I arrived in Bangalore on 3rd May - starting the countdown to the transplant. My life seemed and felt 'normal' but I was going to be ill soon - walking into illness in a few days - I was going to feel sick in a few days - I could not imagine this. I had never had the smallest of a surgery in my life...here I was getting ready for a Kidney transplant. phew!

13th May my mom and I got ourselves to the hospital. My brother & sis-in-law from Mumbai, parents in law from Lucknow, aunt from Delhi, were all there with us. Despite the big upcoming event, the mood was relatively upbeat.

15th morning, 6:30 am the nurses came to take us to the operation theatre (OT). Finally, I felt fear taking over me. Owing to watching soaps like Greys Anotomy, ER etc, I had this phobia of all the things that could go wrong inside the OT and wondered if we would come out alive.
I couldn't let the fear show so my mom remained strong...

As we were rolled into the OT, I saw the family waving to us and raising their thumbs up...then it was sedation time...

Getting ready to be absent

Today I need to do all I need to do at work. Tomorrow is a public holiday and the day after on, I start the count down to the big surgery!!

I have written my mails, I have sent documents to respective departments, I have met my manager...Ive finished my tasks and have sent it to relevant people.

YET!! I cannot bring myself to leave office. I don't want to :(

Nevertheless, I am glad I could get this short break in Germany in April. I managed to spend time with my friends and favourite colleagues. Managed to complete all the chores so I can be away for 2-3 months.

It's been a really nice feeling to be amidst everyone here.
I genuinely feel there are all these people rooting for me. I am really touched.
I am sure this support will go a long way in the healing process. 

Life's unfair moments

A dance instructor lost her foot in the recent Boston bombing.
Dancing was her life.

Me, an explorer at heart, inspired by the likes of Antony Bourdain...believe in exploring places across the world - experiencing cultures and among other things exploring the food in these places.
I land up (with no idea why- just like the dance instructor in Boston) with a kidney problem which will now change my life with respect to travel.
I have to be very cautious - stay away from dust; crowded places...protect myself as much from infection possibilities; eat only properly cooked food.

These might sounds like logical things to do for anyone regardless of any illnesses...but from a traveller's point of view these are 'restrictions' - restrictions from being free and taking the spirit and essence of a place as it is.

Life continues to reassure that it is not fair!! 

God is in the small things

Every time something seriously bad/ tragic/ problematic happens, one can't help wondering, "why does God do things like this?" The faith in God does get questioned even if it is momentary.

In the process of dealing with my health condition and coming to terms with ways it might potentially change my life, I tried to seek answer to a deeper question - "what is this situation trying to teach me?" (if anything). I also had the "why me?" phase...

In the middle of this process I read somewhere, 'if in the middle of a crisis, there is something that makes you smile, that means God is playing a role in your life.'
- I found this very though provoking.

As this message played on my mind, I started noticing small things around me and noticed things did make me smile amidst all the bigger worries.

• While the procedures for the surgery took forever with no end in sight, spring in Bangalore brought beautiful weather and the trees were in full bloom. I couldn't stop to admire how beautiful the city streets looked with a riot of colorful flowers. 
• After the initial calls, many family members and friends didn't call often as they didn't know what to say to me and then came along a wonderful surprise from my friends in Germany - they made a short movie expressing how much they missed us. It was extremely touching and thoughtful.
• The most unexpected - the door bell rings and I get a bunch of flowers and a little card. My team from Germany had sent this to me saying they missed me. Again. I was touched indeed. 
• I couldn't make it to Oxford to do the final project submission. But thanks to two of my classmates, my project got submitted on my behalf and I even got to keep one copy as a souvenir
• I get my promotion at work - FINALLY!!!! I had been waiting for it for 4.5years. What better time to get such a news? It made me more than just smile :)
• We spent a lot of money changing our Lufthansa flights back as things just kept taking time. When we finally checked in, almost as a gift, V got an upgrade to business class...the almost flat bed seemed like a symbolic need to rest weary minds and body. 
• All along I hear Germany had a bad, long, gray winter. Yet, when I get back home, flowers are blooming on my plants and spring finally makes its way...
• To add to the list of to dos, not only was my car tyre punctured, I had to get summer tyre and the dashboard showed engine trouble too...each having a different appointment dates. Not only did the car get picked up from my house but Euromaster skipped the appointment date and changed the tyre for me at the same time. 
• ...
• ...

The list goes on...
But above all, while scientifically and medically my condition is worsening, the disruption to my day to day life is quite manageable. Touch wood!!

So...God indeed is in the small things. There are many reasons to smile every day...just have to stop and notice small seemingly insignificant things and appreciate it. 

When bad health is good news

It's true when they say, 'everything has its plus' and minus'.'
Ever since my ill health has been discovered and as I under went tons of medical examinations, people around me have also become cautious about their health.
- everyone in mine and V's family has undergone basic medical tests
- my brother has (for a change) become proactive about his health situation and is seeking medical advice
- my parents go on their morning and evening walk more regularly
- my mother in law has started walking everyday to control her weight (very big step for her)

Additionally, this family crisis situation has patched up my dad with his elder brother after many years of cold war.

Its also true when they say, 'there's a reason why things happen and there is a time and place for everything.'

*sigh!*

My eating problem

When I first got diagnosed of a kidney problem, I was told by the doctor to reduce/ not have protein and salt.

While in Germany, food without salt wasn't a problem. But it was hard to get something vegetarian without cheese/ yoghurt dressing or some other form of dairy products or eggs.

Circumstances then got us on a flight to Bangalore. Indian food without salt is like Italian food without Olive oil. Everything has loads of salt in it.
Worse, 'dal' and other legumes being a staple with every meal was forbidden cos of its protein contents.

So here I am surviving on tons of vitamin tablets, no salt, no lentils, no legumes, no milk, no cheese, no eggs...Doesn't leave me with much of a choice eh?

*sigh!*

Health Insurance coverage

As we started seeking opinions in Bangalore we realized how foolish we were to rely solely on our employer to cover us for health insurance. Since our employment contracts were not with the Indian subsidiary, we would not be covered by health insurance here.
Since the transplant would not be done in Germany, the health insurance provider refused to bear the cost of the procedures. Fair enough.

The cost estimates in front of us were big enough to teach us a lesson for future.
We got ourselves health insurance coverage immediately - a very negligible amount for me that excluded the known kidney disease. But a decent cover for V.

Hopefully we won't need to claim it.
 

What's better? Who knows -

A message on the voice mail informed us that a regular blood test had discovered a potential "kidney failure" in S. The appointment with the kidney specialist couple of days later resulted in the bombshell - " your kidney is functioning at around 17%. Nothing can be done for this. You will need dialysis soon and eventually a transplant. There is no medication for this situation. Dietary changes don't help. We will observe you and then take a decision when time comes. In the meantime please have some vitamins and EPO for the anemia. You should consider doing a biopsy but it doesn't give clear results all the time."

We decided to take a 2nd opinion and met the specialists in Manipal Hospital, Bangalore. The 1st discussion went something like this " I will not ask you to do the tests which have just been done in Germany however I want you to do the following (tests prescribed). Your creatinine value is 4.57 right now and is definitely a cause of concern but I don't think you need dialysis right now. Don't worry things will be ok. Let's do all the investigations and decide on the next steps. In the meantime, please cut down on your salt intake and avoid dairy products. If you have pulses often avoid them once a while. BP is ok...maybe we will do the biopsy on Tuesday ( we met on Saturday )"

The end result didn't change - transplant was required and was done however the 1st meetings with the specialists in West and East clearly brings out the difference in the "people" aspect. The other important difference which came out was that there is different approaches when it comes to Dialysis - the doctors in the West tend to prefer "early" dialysis approach while in the East prefer to "delay" dialysis as much as possible.