Nuo lost a friend

Just when I thought the worst time of my life (so far) was over, as I completed 1.5 years of my life with Nuo...now comes another testing period.

Out of the blue, I lost my dad. He was fine, going about his life and chores at home. He had complained of being tired, had even met a couple of doctors, including a Cardiologist just 4 days before he suffered a severe heart attack and left us all. No red flags were raised by any of the doctors. His hypertension medications were altered and thats it.

I was looking forward to spending a relatively stress free, vacation with my mom and dad in Dec. But destiny had it otherwise.

Dad was always upbeat throughout my rough times before and during my transplant process. Partly out of his ignorance of such complicated illnesses, partly for just being himself.

At 77, he would accompany me to all the local government offices we had to run around for the legal paper work around my transplant last year. His social skills often made it easier to deal with the otherwise difficult government officials. He prayed with all his heart for the transplant to be a successful one.

He was the rock at the worst of times when mom (after her stroke) and I lay sick in different rooms in the house. He took over the house, the kitchen...everything to ensure we were both back to our normal self. Over the year my dad really helped mom get back her health, recover from her stroke fully - mostly by himself.

Amazing.

He leaves a legacy of having lived gently and cheerfully. Indeed. I was overwhelmed with the attachment so many different people had to him across ranks of society.

Its been a month (today) of living without the one man in this world who would love me no matter what I did/said/felt...It is extremely difficult.

After the transplant process many people tagged me as being a strong, brave woman. I did not have an option then. Now yet again, fairly soon, I am expected to be strong and brave again!!! Again, I don't seem to have an option...

But this time around, I find myself a lot weaker...

To my loving Dad...RIP. 

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. 

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)

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.

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.