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. 

My first 5 Km run after...

The Race for Cure 2014 in Frankfurt, was on my plan since we got back to Germany in Sept 2013 after my transplant. I aspired to run 5 kms at this event.
While I knew, if I wasn't able to, I could opt to walk 2 Kms, I wanted to keep the 5 Kms goal.

I kept myself as active as I could, but it became challenging to get my daily dose of exercise in the last couple of weeks up to 28th September as we played host to visitors at home. I wasn't sure if I was fit enough to do this.

It was hard to shake off the urge to get back to sleep at 6:00 am on the cold, 28th morning and skip the 1 hr drive to Frankfurt.

At the venue I was among 7,000 other participants. :-O
While I got my white t-shirt and company sponsored cap, there were others in pink t-shirts - the 'survivors' and yet others who had a card on their t-shirts with names of loved ones they lost/ praying for...unbelievable spirit.

I hydrated myself well.
A butter pretzels and almond milk and I was at the start line.

The weather was good for a run. I let the fast ones pass me...and ran at my own pace. One walking break as the road went uphill and soon I could see the Finish line and the crowd cheering.

47 min and I finished the long awaited 5 Kms run.
I felt proud of myself :)

This was my first even participation in an event to run. I am really glad that my participation was for an event that helped some people who needed it/ would benefit from it. I am so glad I did this.

Thanks Mom and Nuo :)

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! 

A year with Nuo

This day last year my mom, aged 68 donated one of her kidney to help me with my CKD.
I cannot feel grateful enough.
Thank you mommy. I wish and pray that your noble deed serves its purpose as long as it can.

It has been a bumpy year but we've learnt to live in the moment and appreciate joy. We've learnt to appreciate the color gray and live with it in peace. A lot of things have changed, but we have welcomed each aspect of it with open arms.

V and I have come a long way together with this life changing experience. Despite all the upheavals, we seem to be able to find peace within situations.

Thanks for all the love and support from all of our friends and family. It gives us immense strength and encouragement to have you all around us (physically/mentally).

Hoping to spend more such anniversaries together with Nuo in this journey called Life :)

"Uneventful"

A word like "uneventful" is great when it refers to medical examinations.
That was the long story short of the biopsy report.
phew! I could almost feel my blood pressure get back to normal.
No toxicity from Tacrolimus, no rejection...
No change to medications right now. We wait and watch before taking any decisions about change in medicines.

The other nice thing was, the doctor saw me after 4 months and said, "you have lost a lot of weight."
Man!! That felt great to hear. With a daily dose of steroids, amidst all the doctor visits, office tasks, home chores, feeling dull - I have been trying very hard to do some activity on a daily basis.
All thanks to my dear husband who keeps pushing me and pumping up my motivation levels to stop finding excuses and get up and do something.

There were many days when I would have rather just slept for longer/ sat down and done some other stuff. But I'm glad I didn't.

For medical reasons, I learnt that post transplant it is very important to do physical activity to maintain a healthy weight and blood pressure levels. I knew this was good for me.

When someone notices it and tells you...if feels nice too :) - encouraging indeed.

And yet again

Inching towards the 1st year mile stone
It has been anything but smooth.

iron deficiency, anemia, orthopedic troubles followed by physiotherapy sessions...
The Creatinine is up again...am in for yet another biopsy :(
3rd one since the transplant. Phew!

While I am grateful and happy about many things in my life, even in this situation...I cannot but be truthful and state that this is extremely stressful to deal with.

As we spend another week to get through the procedure and await the reports, here's hoping things are not too bad.

Uggh!! 

Every day is a new day

Iron deficiency = iron tablets = stomach problems = visits to the Gastroenteritis doctors.
Some kind of block in the middle back gives me many sleepless nights and resulting wasted days = visits to the orthopedic doctors
Creatinine decides to remind us of its existence = more frequent visits to the Nephrologist
Now a recurring red spot in my eye = doc says its common during winter...

Past few weeks have had us do the rounds of different doctors, trying combinations of medications and home remedies to get the stomach back in shape + dealing with the crazy pain in the back.

All this + trying to be present (physically and mentally) as much as possible; doing as much exercise as I can; doing as much as possible at home...

Phew! I am so fed up of being a sick person endlessly. Really want some normal boring days in my life. Yes, thats me saying this. Amazing! 

Traveling with Nuo

After a lot of thinking, lot of assurances from the Nephrologist, we went on a short vacation (to Rome) - first one with Nuo (7 months post transplant).

Our usual style of road trips meant getting to our destination, parking our car in a safe place, exploring the destination on foot and/or public transport. We would usually book a bed and breakfast and head out after breakfast often only returning at night to sleep.

We knew it would be prudent to take it a lot easier than usual with Nuo, with anemia, with the medication time etc. Yet we had clearly not thought of a few things until we reached Rome. The city is big - not really walkable - so here we were faced with the challenge of driving in the crazy city center with the impossible task of finding parking / taking public transport (lot of people, touching lots of machines, handles...touched by hundred others...)

We figured our catch 22 situation with traveling:
Big city

• Advantages - better and more options for clean accommodations, food (given we are vegetarians and that right now I still need to watch for protein, not eat raw stuff anywhere etc). 
• Disadvantages - need to use public transport (metro etc), parking in city center is a problem, overall costs are higher, more crowds everywhere...

Less popular destinations/country side:

• Advantages - less crowd, cheaper, do not need to use public transport
• Disadvantages - food and acco options are limited

This was our prototype vacation. Other things we learnt.

• Sights seeing will be purely dependent on the amount of tourists in there - especially places like museums/indoor stuff. Outdoor things might be better options. 
• A mask, hand sanitizer and medications are a must in the hand bag
• Remember to take breaks, eat at regular times (the side effect of Myfortic on the stomach goes haywire otherwise), drink enough water
• Keep a watchful eye for people around (in restaurants etc) who are coughing/sneezing...move away if possible...

Given the new normal of our travel - there might have new normal on who we travel with (if so) and how too...