Dear Friends,

After the previous post, i was drained. It was like i had poured out my feelings, my emotion and maybe some of my pain too. And today, i realise it is two months since my surgery. At times i think only two months? It seems like i have been in pain and stress the year around!! 

There are three parts to my blog on the subject -- 1. There was the pre slicing and dicing, 

2. The dance of drugs and pain, and 3. The "three perspective recovery".

Recovery -- a simple enough word, but i have realised that there are 3 perspectives to it. 

1. The doctor's perspective -- They discharge you from hospital, with advice and medication and that's it. They know you will go back if there is something serious, but in general expect that nothing untoward will happen. They are on to the next batch of patients. No, i don't mean any disrespect to the doctors, just a statement of fact. And that is how it should be. Their matter-of-fact attitude helps the patient to go home and work towards becoming better quickly.

2. The care giver's perspective -- The care giver's heave a huge sigh of relief. No more going to hospitals, no more green sterile gowns, no more watching from afar. Once the patient is home, they can help with the healing process. But little do they realise, the amount of work it entails. Now, you are talking of 6 meals, apart from other stuff. There can be little help, because risk of infection looms large. In fact, that is the biggest thing doctors, nurses and othe others stress on. So, everything has to be washed, and re washed: cleaned and taken only by sanitised hands. There is no time to really sit down with the patient. There is huge stress of bringing stuff, cleaning and cooking and yes, dealing with telephone calls from friends and well wishers, all of who, out of care and concern, call to find out how the patient is doing. None can be avoided. And yes, all are necessary. While time may be at premium, the fact that friends and relatives call, is never a nuisance because it reassures the care givers that they are being thought of, and the patient's family is important. My mother's schedule was completely upset. She had little time to recite her shlokas, do her pooja, see her  TV serials, because preparing my meals, my drinks (milk etc) was priority. No temple visits (though pretty close by) because either she was so tired at the end of the day, that she would be glad to sit for a while, instead of going out. No more going out for music concerts, dance performmances etc. (god knows now when we can go out!).She had to work around all these. I do believe that it is taking a toll on her. Of course, being my mother, she never ever grudges, or bemoans the facts, but i feel the pain.

My husband too is bearing the brunt. Used to  a certain schedule, he is trying very hard to include other stuff into his schedule, which means he is constantly on his feet -- fetching, organising, cleaning, etc etc. I wonder what will happen if either of them fall ill. My world will come crumbling down. 

The patient Perspective -- the patient is home!!Hurrah for that. But once home, it is not just a walk in the park. Patients rarely realise that medication is only one half of the equation of getting better. The other half is their motivation, their hard work!! Yes, doing the excercises (even if just breathing excercises). In the hospital, there was a physiotherapist, who came and made you do the excercises. Some motivation. What is the motivtion at home? You have to find it. You need to walk, when you would rather lie down or just be a couch potato. There is a feeling of being a martyr. There are pity parties, which you should NOT attend, but then.............

Getting well is a full time job. For me it was tiring. Make sure you walk every 30 mins for at least 5 minutes -- a goal i set myself and failed miserably. Initially I could manage a 3 min walk every hour. I began to sleep with an alarm, allowing myself two one hour naps (mid morning and post lunch) waking up with an alarm. Pushed myself to sit at the computer and do something, even as inane as playing computer games. Focussed on reading, managing only a few pages at a time!!( Considering i was a voracious reader, my reading is now pathetic!!). WatchingTV for an hour a day. Making sure i called at least one friend every day -- to ensure that not only i said thanks to my friends, but also that i talked about other things, not only about my illness.!!

My sis, told me about goals and pacing it out. I have earnestly started that i am slowly getting the hang of it. I have started a project of recording stories and reaching it to young ones..... through Rotary, an organisation which i have gained a lot from. 

So, what am i trying to tell you all -- that i am doing all this? Oh no, i am trying to impress on anyone who is getting well, from whichever ailment, that all the hardwork is left to the patient. The patient has to DO. The others will help, or guide or tell, but the DOING is left to you. And knowing is not doing. Only DOING is DOING.

You need will power, you need guts, you need a little help, you need focus.You need to understand that it is a slow process. That there will be good and bad days. That you should still keep at it. You should find your own motivation. 

For some reason, i was having back ache from the day i entered hospital. First the doctors said, it must be because of the long hours i lay on the operation table (muscle spasms), but no, it did not reduce -- not with medication, not with breathing, not with topical applications. 

The liver doctors said, that it was not really a "transplant" problem. The orthopedician said there was nothing particulary remarkable based on the MRI and other tests, but none could find an answer to the back pain. At home, it did get better, but did not go away.

It began to get to me. The depression was staring me in the face. 

A physiotherapist was called in. His treatment gave me some relief. Then i tried hypnotherapy, and Pranic healing too. I was like a woman possessed --- just wanted to get rid of the pain. Slowly it began to work.

And then i thought AAh!! the end is near!! No, i mean, that the difficult period is over. From then on it would be smooth sailing. But the truth is never so absolute!! With blood tests twice a week, tweaking of medicines etc, the patient is always on their toes.  And slowly it dawned on me!! 

Doctors are smart!! First -- before the transplant they tell you, that in a few short weeks after surgery you will be fine, then you can do all those things which you cannot do now, eat what you want, etc etc. So, you think -- whats with a few weeks!! 

Then just before going into surgery, they will give you all the risks and things which can go wrong (of course, with the caveat, that they normally dont). Anyway, you are already committed, so ...you think, ok, surely, it cant be all that bad. 

Then post surgery they will tell you that the first month or so is a little tough, have patience, do all things we tell you, take all the medications etc and then all shall be fine. End of the first month (which is the worst i reckon) and you are still in pain, on a lot of medications, quite a few diet restrictions, and of course isolation, then they will tell you that it has been only 4-5 weeks, another 4-5 weeks you should be fine. After all it is such a major surgery -- 8-9 weeks is really nothing. Ok, so you sigh and reconcile. 

Then there are small hiccups -- Pottassium is high, platelets are low etc etc (all based on blood tests) so again diet restrictions, isolation, growth factor injections etc etc. When you become distraught, they will tell you  that often patients have issues for the first 3 months......then all will be fine. 

I am sure if they told the patient and the care-giver about the 3 month stuff -- most families may not choose to take this option!!

Of course, i dont mean this in a negative way --- but just that contrary to our belief, doctors and health systems know that information should be drip fed and not released in a flood at one time.!!

And yes, one must talk about the costs. This is a very expensive surgery. and the post operative costs are also prohibitive. The drugs are costly. The tests are repetitive and compulsory. There are repeated visits to the doctors etc. These can drain you both physically, emotionally and financially. So, it is important to plan in advance. 

Slowly the patient treads the course. Trying to set a schedule -- of excercising, of medicines, of short naps, of working on stuff (if they can), watching TV, reading etc. And of course prayers that all this will end -- positively within 3 months. Then somehow, someone will throw a switch and voila!! the world will be normal again!! (will it be so?)

Zindagi-- here i come. Just another 1 more month to go!!!

Guys --- i cant go without giving any gyan!! Please remember, no matter what your health status is today, how old you are, or how fit, remember to fit in at least 20 minutes of walking and breathing excericses each day. Create or recreate the habit -- old and young. Believe me, you will benefit immensely. You may not avoid illness altogether, but certainly you will be able to recover faster.😌😘