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. 

Enjoying the beautiful autumn days

As we wait for the reports and a decision about the future course of my medications, I tried to set a work out schedule for myself. Getting back to the gym after almost 2 years needs a LOT of motivation :( - especially for an outdoor person like me.

Thankfully, the weather has been very nice. Its been a warm and relatively dry late October. I've been making the most of it - riding my mountain bike. 

• Saturday: 16.98 Kms 
• Sunday: It rained all day so did all the home chores
• Monday: 13 kms 
• Tuesday: 9.24 Kms
• Wednesday: 20 Kms (indoors in the gym)
• Thursday: I took it a bit easy and went for a walk in the wine yards instead for 5.20 Kms 
• Friday: I had all intentions to go to the gym again. Before that, I went to my office and saw all these lean/slim good looking people and my 'damaged goods syndrome' (as Lori Hartwell puts it) took over. Depressed - I just got back home and continued working :( 

I know that perhaps I am not pushing myself enough to see some encouraging signs of weight loss. I also know the kind of perseverance needed and the time it takes. So, my efforts are going to be sincere, but I am sure I will have days like today when my mind will not be with me. Thankfully, my husband (V) plays the role to push and encourage me...

Here are some pictures of the wonderful, sunny autumn days I have been taking advantage of to exercise and recover - on days like these I certainly don't need much pushing to get out and get some exercise.

Is it me/ is it the drugs?

Feeling too drowsy/sleepy: Am I being too lazy by wanting to sleep more?

Stomach feeling full and bloated: Am I eating too much/ drinking too much water? 

Knees and legs hurting: Are these the usual aches and pains of exercising after a long time?

Short breathlessness on climbing stairs: Am I short of breath cos I am so unfit? 

Mood swings: Am I just being too temperamental? 

Most of the times I am not sure if any of these feelings have to do with my actions/behaviors or the side effects of the many medicines I am taking at regular intervals through the day.

*Sigh*  how am I to know? All of these are listed as side effects of one/more of my medicines...so can I fight it?  If yes...there's another item on the list of things to overcome. Mentally and physically. Phew!

(Its not every day that I feel all of these things. Some days are better than others.)

Status Quo - But for how long?

Haven't you heard these before -

• No news is good news
• Don't change a good thing working
• Patience is a virtue

However, when one is waiting for the decision on how to proceed with the treatment going forward the above do not come across as practical and feasible point of views. Its been over a month since we have come back to Germany and still there is no answer to the basic following questions which needs to be answered for Sats -

• Which 3 medicines need to comprise the 3 drug protocol which she needs to get onto going forward
• What is the individual dosage of the 3 medicines

Both the doctors here and Dr. Vishwanath agree that she needs to get off the 4 drug regiment as quickly as possible. This is critical as she is more heavily immuno suppressed than a "normal" transplant patient but disagree on the combination of the 3 drug protocol.

In order to have a better understanding of the approach to be taken a battery of tests have been performed on Sats - some reports have come e.g. BK- virus is negative and some are awaited e.g. Donor related antibodies. In the meantime we are all sitting and twiddling our thumbs while the creatinine is stable at a higher range than normal of 1.6-1.7. The normal as defined consistently for Satya is a range of 1.3-1.5.

Sats, doesn't want to push the Doctors here too much but I am exasperated with this wait.

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." 

5 months with Nuo

So far so good. Still a lot of uncertainty - course of medication to follow going forward...will the Creatinine come down to the range of 1.3-1.5 (it is slightly higher right now but thankfully stable). 

Keeping our fingers crossed. 

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 :)

Timing

I'm back in Germany in late September.

There are a few positive things about returning at this time: 

• Spring and summer are long gone so I do not have the urge to spend hours working with plants and flowers for our balcony. (It's too early post transplant to do so) 
• Strawberry season is over too. It would be extremely hard to resist them when the lovely looking and tasting strawberries are every where and I wouldn't be able to eat them.  
• Given its already getting cold, I am not craving for ice cream and/or gelato.
• With my weight gain, its easier to hide it under multiple layers of clothing :D

The only negative aspect of landing back in Germany at this time is, we walk straight into the 'cold/flu' season. Almost every other person is coughing/sneezing. With the days of sunshine progressively reducing, this tends to linger on almost through the winter months - doesn't make it easy for an immunosuppressed person.