30 years of oblivion. A life of Discipline & Restrictions ( some that come with the territory after a transplant & mostly self imposed). Both being the perfect balance to living life to the fullest. It's essential to share now, the reason I stepped back & disappeared into a cocoon, where I cut myself away from the world of Kidney, unless it was to do with my reports, my checkups.
Flashback:
At the time I was diagnosed with renal failure, July 1986, there was a dearth of awareness & knowledge about kidney failure/ transplant. Our one touch information friend, Google wasn't born then ) . Many didn't even know( including us ) , there was something called a renal failure & even if there was, it definitely did not happen to us or someone we know - which, lead to many a myths regarding the reason I had fallen ill , why specifically a renal failure , leading to a transplant. This , combined with how people's attitude towards you changed, pulled me back. It's was either a look of pity, a look of - serves her right( she must have done something wrong), to asking my parents questions which at most times didn't even relate to my illness ( border lined on pure gossip & smirks ) & such , pushed me to a space where I went about the most normal life without discussing or taking about my illness. Even as I pen this, many do not have any idea about my transplant. The few who were a part of my upheaval of 1986, know & a few, got to know, due to special circumstances/ situations or on default. The only times when I have spoken openly about my transplant, discussed the journey , has been when I have been asked to speak to patients or their families, undergoing through the same trauma ( mainly when asked by Dr, B.V.Gandhi, nursing staff of BCH or the few friends, who know about my transplant.
Abeyance, therefore, to the many developments in the field of CKD, kidney failure , kidney transplant, will now seem rational.
The Present:
Hit the landmark of 50 years & I wanted to do something relating to transplant, not sure on the progress , with no information at all, just the want of being able to support this field in some way, I went to the most logical person for a tete a tete. Dr. B.V.Gandhi , my nephrologist , who connected me to Vasundhara. She added me to her Facebook page, The Kidney Warriors & reading all the posts, the information available,questions asked, the awareness of patients & their families, put me under a shock - The world in this field had moved so much & so fast, it completely blew me away to speechlessness ( a characteristic which is completely contrary to me). I was overwhelmed.
Assimilating a few questions & posts, i realised , if the vast world of knowledge had put out some confusion in simple situations, a counter to when I was diagnosed, had its own perks with its limited knowledge , where you learnt to listen to your body, learnt from experience, became stronger & very aware. To say, Ignorance is Bliss, will be undermining the progress, the vast guidance it provides. However, Simple basic guide lines , has it's own virtue, it dispels Fear, allows you to Be, to Experiment ( with caution, of course) !
Diet & Exercise , has been a key topic of the KW page. Let me share my experience, on how we managed then ( my Mom & I ) & my routine today.
Pre - Transplant
Diet & Exercise
With the failure of the kidneys to do the task it was meant to do, aka , not filtering the toxins/waste from the blood & sending it to the bladder, throwing these toxins out of the body during urination - the only solution to filtering the kidneys manually, was Dialysis.
With Dialysis twice a week, came the 4 specific diktat ( with no explanation of the Why , except for salt & its leading to water retention ! ) - go low on protein (pulses ) , NO Red Meat, Low on Fat in any form , Salt - just 2 grams in the day ! Phewwww , that was a tall order for a young girl who loved good food & couldn't do without Ghee, Butter & Cheese! To top this was , the liquid intake restraint ( not sure how many ml ), if I felt thirsty, or throat went dry , i was told to take a small piece of ice & rub my lips or suck on it for some succor. quite often, I would go through an entire day, just a sucking on a few pieces of ice cubes. Interesting challenges that I have had to face & overcome.
Mother dear had a lot on her plate. Eating meals was a chore , getting use to food which was out of my comfort zone, was difficult.To maintain a healthy balance with the prohibitions imposed & to be in sync with the blood reports, she became innovative & creative with her recipe's. With the exception of Red meat & dividing the 2 gm salt in the 3 meals , she made sure I ate everything in moderation. This satiated my cravings enough, not to feel, I had been denied any of my favourite fare !
My diet incorporated, white meat ( fish & chicken), all vegetables, an occasional bowl of pulses or boiled egg twice in a week max. Mostly microwave cooked , grilled Or steamed - brushed or with teaspoon of any fat that would enhance the main ingredient , spiced well with lemon juice , pepper & salt, only if I really needed to ! Every preparation was mostly in a semi- dry form ( liquid intake minimum ) ! If a dish felt very dry, then maybe a few spoons of Yogurt.Don't remember eating fruits during these few months of dialysis. Also, carbohydrates ( bread, roti, rice ) were at the barest minimum.Eating only Mom's home cooked meals , she became the Michelin 3 star chef !
Dialysis for me was a nightmare. Nausea & vomiting while hooked to the machine. Took me a day to recuperate & another, to gear up for the next session. ( Which is why , Transplant at the earliest was the call - done in Nov 1986).At this point, all I did was read, listen to music, sleep - Exercise in any form, did not feature during these months! What else is expected of someone who, at that time, weighed just about 35 kg !
Today, most patients on Dialysis are aware on the importance of a good routine, working their way into strengthening their body & building their emotional quotient.
It was eons later that I understood the restrictions imposed:
Potassium and Sodium ( salt) , though chemically similar, their effect in the body have different purpose. A balance of both is needed for the BP level to be maintained & to maintain body fluids, proper muscle contraction , nerve impulse conduction, organs functioning & some. Also excess salt, builds body fluids, builds thirst - a total No No for renal failure!
Protein In the right quantity , helps builds muscles, tissues - which do get depleted during dialysis!
Red meat , has very high protein, which can affect the kidney adversely.
Post Surgery
Diet
Extremely heavy dosage of immunosuppressant drugs , had various side effects. Ravenous appetite being one of them. I ate enough for an army, at least , that's what it feels like in retrospect! Except for the low salt which continues , I ate everything.
A practically salt free diet during dialysis,has made my palate very sensitive to the taste of salt. Even today, my salt intake is low - I have no problem with salt free food, but , do have an issue if salt is high.
Not much I could do about my weight gain ( another side effect of the drugs) ,not having a sweet tooth became a blessing in disguise . I didn't crave sweets, did help tad.
Since my hemoglobin count was low, liver extract, twice a week & eating beetroot , every other day helped.
With the passage of time, the medications have been reduced to the bare minimum (life long), have lost all the weight gained due to the drugs with the help of controlled, disciplined diet & exercise. Even so, the imbalanced distribution of fat in the body can be extremely annoying. And , you learn to live with some of these quirks in your body !
My meal portions are normal now, thank God! I continue to monitor the sodium, potassium & protein intake. The major change, I am revelling on, the every bite of cheese & ghee ! Also , being able to drink water like a fish!
Today, there is nothing that I do not eat ( except for beef ,ofcourse). However, all in moderation, keeping in mind basic dietary constraints , with breaks , no over indulgence, no Bingeing ! Have to make sure I do not strain the kidney nor any other organ, due to my food intake !
The very heavy meals have been taken over by - Fruits every morning, specially, papaya & banana . Fruits of the season, always! A bowl of dry fruits, consisting of 5 Almonds, 2 full Walnuts, 2 Date's. Two light meals & dinner by 7.30 pm. Since I am not much of a non vegetarian, vegetable of every variety & salads are a major part of my meals. The cuisine changes with every meal & every day. Same kind of food on a daily basis is extremely boring ! There are times though, when I feel like eating something sweet or I need to add salt to my food. I always heed to the demands of my body.Listen to your body ! This is the body telling you that a certain components is low or high.
Some might say, what about the sweet content in beetroot or other vegetables/ fruits, then do remember , I mentioned earlier, I stay away from sweets. Do indulge at times on an occasional bite of any Indian sweet, chocolate or desserts. ( ( every individual needs to plan their meals/ diet, according to their situations,schedule & their food habits - modified around their religious beliefs ).
As a rule, stay away from artificial Health food or Diet programme. If you are going to a Nutritionist , make sure you are given a very balanced food , which includes variety & natural foods. Eat Natural food as far as possible. Avoid fizzy drinks, artificial juices, packed snack foods ( tinned foods & processed, high in salt, calorie) & , street food ( paani puri & such). Say No to salads & raw vegetables of any form , unless you are sure on the Hygiene of the place( raw onions , avoid at all cost , these are infections waiting to happen). Stick to cooked steaming hot food, as far as possible. Anything Raw, like fruits, salad leaves, tomato, cucumber, etc - always wash well & last rinse with filter water ( I still do this! ), Be sure of the water you drink outside. Sprouts should be a part of your Diet.
Eating out even today , I am cautious on. At times , its a Dhabba that I am happy eating at than a Restaurant , since i can see the kitchen , watch the food being cooked in front of me , is fresh , is Hot ! Home food , Rocks ! To follow a certain Discipline is important, a few Calculated risks allowed , once you have mastered the art of never abusing your body !
Exercise
From the minute I was transferred to my room from the ICU, I was made to walk minimum half hour in the morning & evening. Today , walking for an hour has become a daily routine. Over a period of time, I have incorporated Yoga & gentle workouts to my daily schedule, never over stepping the line or pushing my body beyond capacity. Always ensured that the frontal area which housed my Nani's kidney, never underwent any physical shock or trauma.
It's been around 4 years since I have started workouts with a personal trainer. It's only after meeting her , that I realised how badly my muscles mass & bone density, had depleted. All this, due to the side effects of recuperative medicines & inspite of my diet, It's she who explained how the combination of workouts (strength training) & Yoga , would help in , increasing muscle mass & bone density, maintaining healthy metabolism & strengthen all joints.Her routine with me changes every 2 months after necessary evaluation, which explores how much my body is ready to except a new & a more intense exercise/ challenge. Regular breaks, with sips of Water, during the routine , helps maintain my BP, my heart rate & keeps me Hydrated .Our goal is to meet all 5 parameters of fitness- endurance, strength, cardio capacity, BMI & flexibility. Till date, we have successfully tried different types of exercise routines like functional training, yoga & low intensity bootcamp.
Apart from walking , mild exercise & yoga - it is best to work with a trainer who has some knowledge on your medical background. If not - the workouts might backfire. Be gentle & increase intensity of workouts & yoga asana's , in slow pace, keeping in mind, individual health parameters - age , vital statistics, etc.Give body enough time to recuperate & adjust before increasing intensity. Best to be safe than sorry. Enjoy a good balanced healthy life instead of proving a point.
Remember a simple basic - your Diet, Exercise & Hydration , go hand in hand. Co-ordination & conformation between the two is a key.
Memory !
I was young, and quite spoiled by the staff at BCH , including Dr Gandhi. When I created a major uproar on the hospital food & demanded , I get home food post transplant, something had to be done. So, Dr Gandhi came home & was so impressed with the hygiene of our home, specially the kitchen & bathroom ( both area's , which can give you the maximum infection) , that post operation stay at home,wasn't even questioned & home cooked food for me, at the hospital, was approved!
Post surgery, all my cutlery, dinnerware was kept separate. Before I was served , they were rinsed once more, with hot water. Keeping any form of Infection at bay, was extremely crucial, and every precaution for the same was taken!
Can't finish this topic without mentioning , Sis Tampal, my day time nurse, from BCH, who stayed with me for more than 6 months, post surgery. Not only did she monitor my vitals, she made the most amazing recipes, falling within the restrictions. Also, between her, Mom & their grandmother's remedies, everyday ailments did not need any medications!
Lessons Learnt :
*Sprout's have many benefits, however , should not be taken in excess. A point which was made by Dr Ruchi Puri , Sprouts contain harmful Bacteria , which can cause indigestion & bloating. The best way to avoid this , is to never eat Sprout's Raw, but , to steam it well or boil it for a minute.
An interesting article on the Benefits & potential Risk of Sprouts :
https://www.healthline.com/nutrition/raw-sprouts#section6
*I was 20 years too late by the time I began Function & Strength training in earnest with a Trainer. Had I began the same , slowly & steadily , after 1-2 years after surgery ( with the Doctor consultaion , overall physical condition & reports ), my physical condition would have been way better than it is today !
*Walk, some form of exercise & yoga ( in consultation with the doctor & other paramater's) , during Dialysis , is also very important. Builds your physical strength to cope with Dialysis !
A very simple note on Nutrition /Diet -
http://www.med.umich.edu/pdf/kidney-transplant/Nutrition.pdf
Nani : Mother's Mother !
BCH : Breach Candy Hospital
CKD: Chronic kidney disease
KW : Kidney Warriors
BMI: Body Mass Index
Functional training involves: Weight bearing activities which target core muscles of abdomen & lower back.
Strength Training Exercise : helps in overall health & well being - builds & strengthens muscles, improves bone density , metabolism , cardiac function.
