Saturday, April 28, 2018

Side Effects to Watch out for, Post Transplant !

*I am ready - neither Death nor Life can scare me. Death is part of Life & Life is all about Living!*

Let me begin by a message that I received from Sejal. She is one tough woman, has gone through her own issues, continues to fight & survive with a smile ! 
" You are the first person I met after my transplant in 2003. Just in awe of you since then. Been so many years but I still remember the one thing you said - The only way to thank the Donor is to Respect the kidney they gave you ! It was so difficult to understand then. Today it makes sense. " 

It makes for the most logic sense then , for me,  first to mention , my Nani , my Donor & her recovery. A generation that believed in a healthy lifetstyle , she was back on her feet within 2 weeks. A strong woman , full of grit , she was ready to get on the table & clean the fan. That's her. Strong & how. She was around 60 years , when she gave me the Gift of Life & passed away healthy & happy at the age of 90 years.That generation was a power house.

On the other hand - I was moving along in slow motion. The side effects of the medication began to take over my body , constantly surprising me , confusing & keeping me on a razors edge , wondering - what next.

As mentioned earlier. Hygiene & diet was prime. My room had been fumigated by the hospital & I was in isolation for 3 weeks. The next 3 months , one visitor per day , for no more than 1/2 hour. Both patient & vistor had to wear a mask & I began going to Marine drive for morning walks! Slowly the number of visitors increased, I started moving around the house,discipline & routine of Walking, 3 main meals & 3 snacks , medicine on time , rest & hobbies ( reading, music, painting & such ). 

For a little more than a year, wearing a Mask, in the house ( when many visitors) & outings , became a second nature to me. To be seen with the mask, while stepping out of the house, was another ball game. Call it attitude , call it being vain - I was not going for my daily walk  , or any other outings , with a mask. That was just not happening. So, I became a designer. I would tug part of a scarf into the mask, throw the rest across my shoulders, revealing just my eyes! ( Much like girls on bikes, who  cover their faces with scarfs, to protect themselves from pollution & sun- I began that eons ago ). At times, I would pull the scarf at the nape of my neck, tuck my hair in & make a bun . My new avatar was named, Bandit Queen ! 

Heavy dosage of medications gave a new meaning to issues I had taken for granted -

Appetite & Weight , I have mentioned the details on my earlier page , surprised me. I always had a good appetite ,the medications however increased it to .... twice... thrice the quantity ..... Looking back, it is beyond my imagination, how my appetite had increased ! Weight increased at a steady rate till it decided to stop at around 70 kg! Had diet been lax,I had been a sweet tooth or given walking a skip, lazed around - I would have touched 100kg or more! I was Round like a Potato , nothing symmetrical & yet Round ! Therefore, when i read about a few post transplant loosing weight , i was more than surprised ! 

The Hump : at the back of my Neck (cervical vertebrae ). Was a gradual growth & later became big enough for anyone to hold it in your palm. I called it the Camel hump ! It is there even today , however , has reduced in size ‘ that’s a relief. Had to wear full collared / Chinese collar shirts , Blouses , to cover the hump. Today , I am use to it & not so conscious! 

Skin - flawless & radiant, it did an about turn. A simple statement by my sister, will be a classic illustration. " Didi , your skin looks & feels like Godhi Chamada  ( Monitor skin). In simple words, coarse & dry! Possibilities that constant moisturising ( Oil, cream, lactocalamine) of skin might have helped the skin getting worse! 

Hair was a catastrophe! My hair was loosing focus & growing wild! Facial & body hair, was unheard off - And , the kind of thin invisible skin colour hair , was changing to Heavy growth , thick & black in colour ! I could well twirl my mouschtache & shave my beard ! Most body parts ,was the same scenario. However, hair on my head , that started to deplete ! Ridiculous ! Shouldn't it have been just the opposite ???? Have I exaggerated , maybe I have, nevertheless, for a 20 year old, that's what it was! 

Women go through their additional issue of monthly Menstural cycle/ Mensturation / Periods/ Chums - a woman's best friend! Why do I mention this - well, the side effect was such, that my cycle decided to take a rest & my Chums decided to surface after more than a year. Interestingly ,it not return with a vengeance of having taken a sabbatical. When it did come, the kind of heavy bleeding,  stomach cramp & pain , wasn't to the same degree as before. This is one side effect , I have no complains about! 

The restrictions & with my very protective parents , 9x5 Job was out. Working where hygiene was an issue was out. Basically working out was out ! 
So , I dabbled in various projects. From designing clothes , being an Artist ( water colour is my favourite medium ) , running hobby class for kids , just being the Boss's daughter at Moms parlour , to working with my father in his spinning unit. Life was spinning ! 
Seven years later, on Mom's cajoling I went and gave my IATA exam , worked part time with friends , to learn the ropes of running a travel agency & took off on my own. 

Have been a - Voice your thoughts  person, since I was a child. Very straight forward , mistaken for being rude, not one to take any wrong without an outburst - my  being annoyed , short temper after my surgery for a while was taken with a pinch of salt , as me just being more precocious & spoilt! Slowly , realisation with experience that , my tempers were a side effect of the medications. Point being - we didn't make a big deal out of it , was just a process of growing up !
It 's only in the recent past that one has read up & understood the implication of a surgery, medication & how it effects your body & mind. The restrictions imposed , physical changes , chemicals that effect your brain & more ,  play a part in the subtle changes in one's behaviour. 

Once the mask was off, I started to take short Trips within the country. Visits were confined to places where family & friends lived. My routine not broken, hygiene maintained, diet balanced. Life got to a normal routine & I was ready to take a longer trip, outside the country. I still remember ,Dr Gandhi, being very clear- with hygiene being a top priority , it was UK or Europe , rest of the countries were a complete No No! So, London it was & we stayed at my Masi's for a month

Over the years, Steroids have been reduced & today , it's on a bare minimum dosage. Appetite, weight, skin & hair , have come to normalcy! Been a continuous correction process , no more unwarranted looks & people recognise me ( which didn't happen for the initial 10 -15years after surgery).

Do not loose my temper as easily as I did before , however, even now , when I do , I am not sure , if it's my normal self or reaction to so many years of medication. 

Ladies, no one was allowed to apply any products on my face, no taking any chance of a reaction coz of the medications ( home remedies only). The facial hair came & went on it own with the tapering of medication ! Maximum was waxing ( legs & hands)! Yes, I do wonder, had I cut my hair real short, not gone wild dyeing my hair with all the left over colours ( Mom had a Beauty parlour,then) , would my hair have managed to stay as healthy & thick ..... maybe Yes, maybe No.... an answer , I do not have!

Travel has become a second nature to me. To be a part of the city , capture moments in pictures , create memories. 

With my experience's , constant learning on a daily basis , how to accept & lead a normal life, inspite of the transplant , to live life to the fullest , the following  quote's  best explains my Present! 

" Life can be only understood backwards, but it must be lived forwards." - Soren Kierkegaard 

" The past should not drag you behind, the future should not pull you forward. You must be fully concentrated on the present, on what you are doing. You must be so concentrated on what you are doing that it is as if the salvation of the world would depend only upon your work." - The Mother

Reminder !

The side effects mentioned might not be a replica for all , some are classic's & some might just be specific just to me. As mentioned earlier, reaction is individualistic. Some side effects disappear. some loose their strength & a few , due to Long term use of Immunosuppressant's, remain with us , in some form or another, for the rest of our lives. In my case, my Memory wasn't the best & isn't getting any better. These days, any work that needs to do , is penned down immediately, in case I forget ! As such , with age , Osteoporosis is likely to effect us , with long term use of medication , it is definite. Twisting of my ankle or knee happens often , muscle pull , hairline fracture once & I have become extra careful with my footings  - walking, getting up, turning & such. Uneven weight distribution - that is a bummer , no getting out of it though! And , there is Spinal degeneration, on account of which , I have become marginally shorter in height , with passage of time. Posture, exercise, yoga, workouts are essentials to keep this in check. Calcium deposit / Tartar deposit is another phenomenon that occurs frequently. Mostly the deposits are brown or yellow , Mine though ,is black in colour , most likely a reaction of medications with tartar. Oral care is extremely essential to your wellbeing for all Health aspect. Do not neglect Dental care,go to the Dentist atleast once a year. Neglects & you might just be inviting other medical issues!

Repeat I shall, from the day of my surgery till the day I die, no matter , I am at home or travelling or at a party - I maintain the dietary restriction & hygiene is always a priority. When I am not sure about a meal when travelling (short or long distance ) or visiting someone , I always carry water, banana , biscuit & dry fruit , as a precaution. For more, please go through the write up on 3rd Nov, Information. 
Weight can wait, Healthy diet & Lifestyle cannot! 


Godhi aka lizard aka Bengal Monitor :

Osteoporosis : Bones become fragile due to lack of calcium. Brittle Bones, fractures are to be watchful about. Calcium supplements & diet control can control the weakening/ disintergration .

Spinal degeneration begins with spinal cartilage, either in the discs or in the spine's facet joints. It involves the gradual loss of normal structure & function of the spine over time.

Long term & basic side effects of Prednisolone
Increased appetite, fluid retention, weight gain, increased blood sugar (which can lead to diabetes), change in body shape (increase in fatty tissue on the trunk while the arms and legs get thinner), increased susceptibility to infections, acne, thinning of the skin, easy bruising.( Except for Sugar, which I haven't got as yet, the rest, I do!) 

I wouldn't call it Depression , to begin with. Mood swings & such are side effects of medication. With my experience, let's just say, it's adjustment of body with the chemical reaction to the meds , physical changes & restriction's imposed. We tend to react differently to all this. That's when support from family & friends , help you settle / heal . Instead of getting upset at the change in behaviour , they recognise it as temporary & become, Emotional anchor's. For example - No matter how Fat & Ugly , I really looked , no one ever made me feel that , I was simply Special! Or a time when I looked so old , that a few people mistook me for my sister's mother & her 2year old son's Nani & you had to see my sister jump to my defend and scare the lady away. That's love , that's support
A positive Attitude , someone who doesn't let anything pull her down , ready to face any challenge , Humour & Laughter , Hobbies - my Spiritual family background was a Grace, Blessings from the Guru's, elders & innumerable individuals , helped my recovery on all fronts.
Also, as in the case of Sejal & so many others ( like Dr. Gandhi ensures & other nephrologist's too) , meeting other patients & their families  , going through or have gone through the same procedures & predicament's , how they are dealing with it, is the Support that's so important. Also, as quite a few hospital's are ensuring, Counsellors speak with patients, gearing them for the present & turmoil ! 
It's when this does not happen , that it takes on a larger platform & can be labelled under Depression ! Awareness, Recognition, Acceptance & Ability to Move on ( working with & around the symptoms) , are the keys to beating negative emotions !