Home at last

Chinese have a saying " May you live in interesting times". Well, the last six weeks have certainly been a fascinating period in my life. Not one I would like to repeat but interesting nevertheless less. And as usually it happens it started with as a small thing. In my case it was  a tiny blister on my foot. Since I was a diabetic I had been warned to pay special attention to any such outgrowths.

After some initial hesitation, I made a beeline for my doctor. He took one look at the offending foot, and urged me to leave for the hospital forthwith. So there I was in my hospital bed listening to various specialists pronouncing on my fate and prognosing a bleak future indeed unless I took a dialysis regime to clear my body of the accumulating toxins. Thus followed a hospital stay, then a rehab nursing center and finally permission to return home under a strictly supervised regime.

Here is a brief diary of he next few days..?

It had been seven years since I underwent quadruple bypass surgery at the best heart center in the US. Unfortunately that experience had left me with an ejection fraction of 15% barely adequate to pump the heart. During the past few years, three doctors had managed to skillfully redesign my life to a relative health. But now I was back again having fallen off the strict regime which had upset the chemical balance of my body.

One of the prime culprits was a new drug called Lyrica. Now I love my doctor-he is kind, considerate and so far his judgments (I have had him now for 25 years) and advice have been sound. But once in a while his judgment slips. Unfortunately it happened last week...He had prescribed Lyrica, a brand new drug, a month ago to alleviate my PHN pain a result of a bout of shingles the previous year. But he had not taken into account it's possible side effects!

Apparently Lyrica had built up in my body raising both the creatinine and bun levels ( both measure the functioning of the body’s kidney functions) beyond the danger levels. Alarmed at the new levels he now recommended a right heart  catherization and an iv drip. Except that I had become so weak as a result of Lyrica thatI felt that the procedure may be a real danger to my life. So I refused the procedure then, only to reap the fruits of my delaying and leading to the emergency trip to the hospital! 

 I entered the hospital and soon enough found myself engulfed with various experts. During my first seven days scores of specialists visited my bedside but three standout, because each of them predicted my demise with different degrees of subtlety. One prognosed that the only solution to my condition was a heart transplant. But a few years earlier, John Hopkins, after a detailed assesment had declined to place me on the list because of old age of 70. Another suggested an LVD but in the present condition it was not possible. A third assesed that dialysis was only a temporary fix --in short, I should get my affairs in order ( and this in presence of my daughter who was understandably distraught). Another suggested I focus on Gita . In short all of them saw but a limited lifespan left for me. Fortunately my old cardiologist was there to provide a common sense path forward. And that led to the dialysis in the hope that it would rid the body of the toxins that had built up.

You need dialysis when you develop end stage kidney failure --usually by the time you lose about 85 to 90 percent of your kidney function. When your kidneys fail, dialysis keeps your body in balance by: removing waste, salt and extra water to prevent them from building up in the body, keeping a safe level of certain chemicals in your blood, such as potassium, sodium and bicarbonate, and helping to control blood pressure.

Chronic kidney disease and GFR - glomerular filtration rate is the best test to measure your level of kidney function and determine your stage of kidney disease. Your doctor can calculate it from the results of your blood creatinine test, your age, body size and gender. The earlier kidney disease is detected, the better the chance of slowing or stopping its progression. One in 10 American adults, more than 20 million, have some level of CKD.

Actually some kinds of acute kidney failure do get better after treatment. In some cases of acute kidney failure, dialysis may only be needed for a short time until the kidneys recover. Dialysis can be done in a hospital, in a dialysis unit that is not part of a hospital, o r even at home.

The dialysis machine is really a very simple machine which takes blood through one tube and returns it to your body through another. The machine itself does all the work of cleaning the blood and removing the toxins from the body. So you go in twice or thrice a week, are tied to one of these machines ,and after three hours you emerge with considerably cleaner blood. The hardest part is lying on a bed for three hours!

Heartened by the progress I moved to a rehab nursing home
for the early days of my dialysis. There were a number of patients at the center being rehabilitated for a number of ailments from Alzeimer to kidney failure. There was a CEO painfully learning to recognize what day of the week it was, a high school teacher determined to walk again, a grandmother surrounded constantly by her children and grandchildren, a lonely old man who cried at night. Yes, it was a varied mix of humanity. And those looking after them were a varied lot indeed. While management was mostly white, specialists were mostly Indian, daytime nurses were the local black, but night time nurses were tall strapping women from Africa- Somalia, Nigeria, Eritrea.

There was physical therapy, occupational therapy and varies other regimes to get you back on your feet. I learnt a lot from this regime; from how to walk, first with a wheelchair, then a a walker and finally on my own, how to urinate lying down, getting up from comfortable sofas, and sleeping on beds surrounded by bars, being woken by a floating cast of nurses at all times of night and day and constant pricking by needles drawing blood. Oh, those needles!

After ten days I was ready to go home!

During my stay both at the hospital and the nursing home, I was greatly heartened by the calls from family and friends enquiring about my state of health. I has often written about how it was difficult to console friends in times of tragedy, but now I had a new perspective with my views being leavened with having been on the receiving end too.
 So what can I tell you about how to console friends in their times of travail.

So what words of wisdom can I now pass on to you when you venture to console your friends in their times of trouble?

The first, do call or write. The very fact that you took the trouble to do it is heartwarming to the patient that he is in your minds and prayers are very reassuring.

When you write recall incidents in the past of happier times together and urge them to get well soon for happier times to come

It is true that when you call, emotions often take over despite your best efforts. But you need to control the urge to commiserate or cry. Rather focus on the serious cheerful. For example once a friend called and said " I want you to get well soon so that I can fight with you about Obama and the state of the country" or another "Keep it up Anil! It's always great to be alive, (and to have you with us) no matter how difficult it is to stay involved!!" "All I can say I am so happy to see this to know you are on your way to getting back to your old life! Hope you will be out of hospital/re-hab real soon now. Lots of love and good wishes from all of us,"

All these messages and calls are a reminder that you are still loved and missed and that you have a life, a trifle altered, still awaiting you ahead.

Remember your words will provide "Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth,  and Love to complete your life"

And finally , if you can, simply sit by their side - quietly , gently- simply sit. No words are necessary; your very presence says it all. That will be the most soul satisfying moments of them all.

Back at the nursing home, a month has passed. And boy, what a month it had been! From a near unanimous prognosis of a few days left on the death bed to walking home after thirty days of pain! The very thought of going back to some semblance of my former life cheered me immensely.

And it had all started with a swelling of my feet-an indicator of edema increase. Mine had, it seems, gone beyond limits. So I was rushed to the hospital and then followed some of the most painful days of my life. But now I was going home and that was all that mattered...

But in a sense you cannot really go home- the world has changed, your environment is no longer the same, and the people you knew before you went away too have pursued their own lives. And don't forget you have changed too- after all the turmoil has to have left a mark on you too.

The key to a successful return is to recognize these changes and to learn to adjust to  them. For example, in my case, one of the hardest tasks was wearing shoes and getting into the car. Others included walking everywhere but with a walker, ensuring that all the medicines were at hand, and that oxygen boost was available, reorganizing the house with a special bed, shower chair, and bedside toilet, and getting a wheelchair for those long journeys to cinemas and restaurants ( one can dream cant one?). Nothing was a great hardship but only if one planned and organized for it. Life could be managed, I found,if one put ones mind to it.them. I certainly found that in my case. I found myself speaking much less and thinking and reflecting more,  appreciating the little kindnesses and courtesies. Gradually I found curiosity about my surroundings slowly reemerging and writing, albeit slowly, became once again a joy.

Yes it seemed I had almost touched the pearly gates but had been to my great surprise denied admission at least at this time....so now it was upto me to make the best of the extension of life granted me.

What had I learnt from this journey...

Doctors don't know everything --As Jerome Groopman wrote on average, a physician will interrupt a patient describing her symptoms within eighteen seconds. In that short time, many doctors decide on the likely diagnosis and best treatment. Often, decisions made this way are correct, but at crucial moments they can also be wrong  with catastrophic consequences.

Nurses are grossly under appreciated. “Constant attention by a good nurse may be just as important as a major operation by a surgeon. “ ~Dag Hammarskjold . Nurses dispense comfort, compassion, and caring without even a prescription.

Your family is everything. During the entire period my family stood like a rock beside me-my daughter took leave to spend nights massaging my back, my son flew back from Vietnam to reinforce her ministrations and my wife was an ever present presence in the room. Without them it is unlikely that I would be writing this blog!

I learnt patience and becoming careful in my words, even a trifle timid. I learnt the joy of watching the daily sunrise, hearing the conversations of those around me, and watching my grandson dance!

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