3rd blog TRAVELLING WITH CYSTIC FIBROSIS (part-2)

Travelling with cystic fibrosis is quite a journey. And when you travel in India with CF you have to come a long way………….

So recently, me and my family went to ahmedabad, Diu and Somnath temple situated in/near Gujarat, India from DELHI TO AHMEDABAD was approx 15 hours journey by train……

Reached ahmedabad at 10 in the morning everything was going good met family friends visited Gandhi ashram (a beautiful,peaceful place) , kankariya lake ( a must go to place if you are going to ahmedabad) it took about a whole day to fully see kankariya lake………

Kankariya lake is not only a lake it is a all in one package, there is zoo,boat riding, toy train ride, amusement park and a lot more by the end of the day i was hell lot of tired, breathless and coughing up a lot. Took my inhaler and man oh man what a relief it was after we reached the hotel took my Asthelin nibuliser, Saline , Physio by my mother, Tobamist nibuliser and i slept like a babyyy……..

Woke up the next day , not a hectic day met family friends ate a lot of delicious mouth watering GUJRATI FOOD with my creons of course and if you do not take the regular medications on time then you are in big trouble my friend. I took my medications on time regularly as i didn’t want any trouble for me or for my family…

Took off from Ahmedabad to Somnath temple it was 8 hour drive. Somnath was an adventurous trip 8 hr drive got me exhausted and moreover the atmosphere there was salty as there was sea around it ,visited temple early morning, one of the most beutiful temple of India, saw the mesmerizing sea for the first time but was disturbed because I am not adapted to salty air a lot of cough and phelgm was pulled out of my body, it was like taking 3% saline (which we take in india) a lot of phelgm was released and gave a kind of relief but was disturbing me a little bit then took asthalin nibuliser which gave a lot of relief in breathlessness. Visited the temple and took of to Diu (a 5 hour drive and i was like not again)

DIU:-

The most beutiful place i have seen in my entire 17 years of life.

Checked into the hotel hut, the view was mesmerizing from the hut, ate some food left for the beach in front of the hotel just 10 steps away from the hotel.

Played at the beach with my family for about 2 hrs and after 2 hrs got so exhausted you can’t even imagine, took a bath after coming from the beach and taking a bath is a different journey if you are exhausted. (breathlessness at its peak).Took a great two hour nap and after the nap i could feel the air move into my lungs i could feel myself inhaling and exhaling again.the freshness then took another level. Ate pulses vegies and chappati at night (typical indian food) slept again after a little walk.

THE SEE OFF:-

Next morning took off from diu, again 5 hour drive from diu to ahmedabad. reached ahmedabad, crashed at a relatives place ate a lot of food and explored some local market visited more friends and then it was time to say goodbye to ahmedabad once again. Took a flight (vistara airlines – first time traveled by air) 1 hr 45 minutes flight reached Delhi airport took a cab and reached home sweet home the feeling of coming back to home was of another level….

So that was my journey from DELHI-AHMEDABAD-SOMNATH-DIU-AHMEDABAD-DELHI , a 5 day adventure of CFr
If you guyz have any corrections or suggestions please COMMENT down below and don’t forget to leave a like because its free , AND STAY TUNED FOR MY NEXT BLOG.
AND, TILL THEN
KEEP FIGHTING , KEEP LIVING, KEEP SUPPORTING ,AND MOST IMPORTANTLY BE HAPPY,
WILL SEE YOU LEGENDS IN THE NEXT ONE,
SIGNING OFF ,
RAHUL ARORA.

2nd blog TRAVELLING WITH CYSTIC FIBROSIS (PT-1) PACKING YOUR STUFF

Travelling with cystic fibrosis, packing your stuff. This blog is going to be short but informative so read carefully.

Yes, as we all know till now (from my first blog. if you haven’t read it till now go and read it on my channel link will be below) cystic fibrosis is a disease which needs to be “handled with a little bit of care and so much love.”

Cystic fibrosis makes travelling a little bit difficult which for me is kind of and adventure and fun to do activity; so in this blog we will be talking about how i pack my stuff what essentials do i carry with me while going for planned 3-4 day trip (it can be a long trip) just stock extra for long trips.

So, what are we waiting for let’s get started.

1.) 1st and most importantly medicines:-

  creon 2500, udilive, evion 400, itrasys,potklor syrup (in summers) , etc;

2.) Inhalers (especially if you are trekking or doing something hectic);

3.) Nebulizer (for inhaled medicines);

4.) Water bottle at the ready (24×7);

5.) Handkerchieves / tissues  (a lot of them in my opinion);

6.) 2 extra pair of clothes than you would usually carry ( for rainy season and if anything accidental happens just take a safe side)

7.) Pack everything usual like everybody else around you would carry &;

8.) A T.V series or films for ofcourse for entertainment purposes.

So yes that is how I pack my stuff while travelling and I guess you should too . If you guyz have any corections or suggestions please COMMENT down below and don’t forget to leave a like because its free , AND STAY TUNED FOR MY NEXT(TRAVEL) BLOG.

SO, TILL THEN 

KEEP FIGHTING , KEEP LIVING, KEEP SUPPORTING ,AND MOST IMPORTANTLY BE HAPPY, 

WILL SEE YOU LEGENDS IN THE NEXT ONE,

SIGNING OFF , 

RAHUL ARORA.

LINK TO MY FIRST BLOG-https://wordpress.com/read/feeds/83988072/posts/1900764950

 

1st blog ever, CYSTIC FIBROSIS 😊

Hello World ,

I am a 16 yr old living with CYSTIC FIBROSIS or most commonly* known as (irony here😁) CF. I LIVE IN INDIA,DELHI. So if you are not aware , let me introduce to this so called “disease”.

Cystic Fibrosis is a hereditary disorder that affects the exocrine glands. Non curable and a rare occurrence in India, in comparison to other “well known” illnesses such as Cancer, Diabetes etc, and is relatively rare occurrence, the fact is that very very few people live up to old age.
It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, and bronchi and often resulting in respiratory infections.

So yes, I did have sinusitis, Bronchitis but that was because of cystic Fibrosis and because of lack of awareness in India, doctors could not diagnose the real cause of cough, breathlessness, excess mucus, pneumonia etc.

Visually, if you look at me, honestly I don’t look like 16 yr old, i just look like an 11yr old.

i think you can guess that with this.

So that was it. Now we can talk about the real thing ,”the CAUSE”.

A defect in the CFTR gene (One of the genes present in us) causes cystic fibrosis (CF). This gene makes a protein that controls the movement of salt and water in and out of your body’s cells. In people who have CF, the gene makes a protein that doesn’t work well. This causes thick, sticky mucus and very salty sweat.

Also don’t think If you have CF in your family, your other siblings will also have it. No, The defective gene is not compulsory that it will be passed on in all the sibling. Like I have CF but my sister doesn’t.

THESE ARE THE POSSIBILITIES…

GET THAT RIGHT,

And now you must be thinking of let me guess “SYMPTOMS”.

The signs and symptoms of cystic fibrosis (CF) vary from person to person and over time. Sometimes you’ll have few symptoms. Other times, your symptoms may become more severe.

• One of the first signs of CF that parents may notice is that their baby’s skin tastes salty when kissed.
• Sleep disturbances because of not being able to breathe normally or oxygen deficiency.
• Most of the other signs and symptoms of CF happen later. They’re related to how CF affects the respiratory, digestive, or reproductive systems of the body.

“I always had salty skin. Though I don’t go out and play much , or do exercises i would sweat a lot and that SALTY TASTE remain on my body for most of the summer.

NOW THATS ME BELOW-:

Given to my health condition, I have seen the insides of hospitals far more than I should have at this young age, mainly because of the frequent visits to treat my infections every now and then.

COMPROMISES OR RATHER I WOULD SAY PRECAUTIONS-:

I CAN’T stay awake till late, I cant eat street food as much as a normal kid of my age would crave , I cannot walk on roads because of construction all around, I need to take care of the changing weathers, stay away from people who got cold and cough, cannot eat ice creams or anything cold and yes,

SO YEAH… These are few of the compromises I do everyday. But I don’t loose hope.

Having people around you all fit and fine kind of made me feel little frustrated at times but then most of the times, I now I feel I am “the blessed one”.

But, behind all this is an effort to help others identify and be prepared to fight this. There may be no cure, but that doesn’t mean we should just surrender and sit in one corner waiting for the end!. Because of some scary infections , syringes and sometimes disturbing weather do not give up. It might be difficult but not impossible.

I DON’T THINK EVERYBODY WILL RELATE TO THIS BUT YEAH THIS THING BELOW IS THE “CFTR” GENE:-

so yeah that was my first blog many more to come though,

I THANK FROM THE BOTTOM OF MY HEART TO ALL THE DOCTORS AND THEIR TEAMMATES FOR HELPING ME TO FIGHT WITH THIS SO CALLED C.F.

P.S- There are over 1700 mutations of CFTR GENE out of which only 242 are known and in my case its unknown yet.

So, yeah this is me and my life with C.F.

WILL SEE YOU LEGENDS NEXT TIME

RAHUL ,SIGNING OFF,

BYE,

😊😊

The Journey Begins

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton