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.