Rising above my illness and problems

Its interesting to notice, as a person with a chronic illness and perhaps some challenging life situations, everyone around me seem to now associate nothing else but this aspect to me.

Nobody seem to want to know how my job is coming along, how are other aspects of my life panning out.

I greatly appreciate the concern everyone has by asking how I am doing (health wise). I understand the dilemma they face - if they don't ask me about my health they might think they are being insensitive...
However, my illness and difficult situations in life is not my identity.

I try every day not to let it become my identity.
I try very hard to not seek and live on the sympathies of everyone, to continue to keep my independence as long as I can.

Group travel

Just got back from the first group travel after the transplant :)

Traveling in a group is always tricky...gets trickier when there are many restrictions and cautions to be considered. 

At the outset, one of the co-traveller started to sneeze and we had a long 6 hr car ride ahead of us. Phew! Out came the masks, hoping I don't catch an infection. Thankfully it was an allergy and not a cold.

My husband and I soon realized we were the party poppers for the highly energetic - active holidayers with us. I was never the early bird but, my anemia left me quite low on energy most of the days. 11:00 am was the earliest I could get myself out of the apartment most days. The usual practice of exploring every city on foot, exploring every sight and street regardless of the weather definitely did not excite me anymore. The thought of it made me tired. 38 deg centigrade did not help. I knew, walking in the sun and heat would result in a headache, resulting in high blood pressure, resulting in...

Only a transplant patient and the primary care giver understands the fear - each ache and pain that comes along might be related to the transplant. So there were days when I had to excuse myself and stay home - so as to not be seen as the perpetual whiner - the sick co-traveller. I knew that meant we would not see some of the "must sees" but it no longer mattered. 

While I have always followed a daily exercise regime, have managed to loose a lot of weight since the transplant, it clearly was not enough to keep pace with the fittest. 

• the schedule of my medicines 
• the need to watch what I eat and drink 
• the need to use the restroom frequently owing to the water intake 
• the body feeling low on energy...the need to take it easy...

All of these become needless interruptions for the foot loose, healthy fellow travelers out to explore the place, see and experience it all. For me on the other hand all of these necessary interruptions reassured and reminded me of the permanent nature of my illness. 

Being in a foreign land, away from my primary Nephrologist and center, made me extra cautious. While I try hard to keep the traveller spirit alive, the worst fear I have is being in an ambulance in a foreign country, not able to explain my whole medical history in a common language and getting some common, off the shelf pain killer/ drug that will cause damage to my kidneys. 

Such situations made me realize (once again) - there are far too many nitty gritty details to this illness. 

Perhaps the upcoming check ups next week will indicate how well I took care of myself during the vacation.

As of now, the lessons learnt: No matter how cooperative the group, sufficiently warn co-travelers about my constraints and the many ways it could potentially impact their plans. 

Sigh! 

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." 

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.

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.

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)

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.
 

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.
 

A lesson in hindsight: Should have done that biopsy

We debated about taking the risks of doing an invasive thing like a biopsy - perhaps the one mistake we made through this process.
I had never had any invasive procedure done on me for all my life and was always extremely scared about any such procedures - this among other things contributed to the delay in making this decision.

By the time we decided to go for it, the kidney size had shrunk and there was no point in doing it :(
As a result, until date, we do not know what CAUSED this for me.
Of course spiritually too there was the big 'why' hovering in our minds...