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.

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. 

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! 

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 :)  

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 :)

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.

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.

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...