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! 

Hope!!

Another undesirable blood test report
Another round of reactive tweaks to the medicine dose
Another test next week...
This cycle never seems to stop.

In India - the tweaks were too often
In Germany the tweaks are too few (despite increase in values)

This process to say the least is extremely frustrating for the patient and for their care givers. The doctors are too busy to explain things. This whole trial and error approach is just crazy.

Amidst all this, I came across this article and I am so glad there is some research on going in this direction: Stanford study in transplant patients could lead to better treatment.

Considering how long things take to become mainstream in the healthcare industry, I don't know when this will...but I'm glad there is hope.

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.)

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." 

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 :)

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.

A week and it's back to square one

Its been a week since we got back to Germany. This whole week we have been visiting Nephrologists almost every day - giving blood samples almost every day.
We used to get frustrated with the hospital in Bangalore for doing tests too frequently...and here we are.

Apart from meeting the original (pre-transplant) Nephrologist, we also decided to meet and explore the option to go to a new Nephrologist - walking distance to our home. The primary reason was the convenience of being able to walk over given the frequency of tests I am needing.
Interestingly, the doctor close to our house came across as a more open minded, very well versed in English and more specialized in transplant patient care.

As we have just gotten back and are yet to start any post transplant treatment with either, we decided to make a switch to the Nephrologist close by - communicated this to his clinic too.

Lo-and behold, we have another decision to make:

• Get off a nephro toxic immunosuppressant - Prograf OR
• Get off Everolimus (something introduced on me to stabilize my Creatinine as I was supposedly sensitive to Prograf. This is the protocol I was on before the Creatinine started creeping up and I had a biopsy done) 

Since I've had a rejection case in the last 4 months, getting off Prograf completely sounds risky. Hence the Nephrologists in India proposed keeping it but in low dosage. Together with Everolimus. But get me off Myfortic - a combination none of the Nephrologists here want to follow. 

What does a patient do? 

Regardless of what which doctor in whichever country says/does, my body has turned into one experiment to push in some combination of chemicals, do a test every other day, tweak the combinations...keep waiting and watching...ultimately if the results are not as the doctor desires, do some invasive thing like a biopsy or a surgery or whatever else there is to do...

So why do doctors try to give this false impression that they care to give me an option to choose? 

So as the spiritual leaders say, "just surrender" - except they preach, surrender to the divine. 

I need to just surrender to these doctors who are incapable of empathizing with their patients. I might as well sign up to become a research subject to a hospital around here...at least someone will benefit some what they learn out of the experiments on my body. 

ANNOYED at the attitude of doctors and a sense of helplessness I feel! Whoever said, life after a transplant is 'near normal.' The "NEAR" is not to be under estimated.