Author: lifeondialysisjourney

Hey people

Hope you had a nice Christmas and 2019 now approaching fast. This yeay has been very busy year for me, met some great people and great weddings and lots of things. Also important to take good care of my small amount of health left, thats right being happy and keeping strong in the mind can be challenging.

In recent months i seen alot on organ donation and how black and asians not signing up etc.. etc.. I feel sad when i see that very sad, as I am on dialysis and my only way to live longer is a new kidney ( blood group O) so in case you want to help.

I want to know all the people who are campagning, how much are signed up to become donor of orgnation when we die.? I believe we have to lead by example and then promote. I am donor myself, so i tick that box for me. Rest of you why not comment and say yes or no, its no shame to say no and no shame to say yes.

There many view on organ donation from differnet views, culture, religion. Its topic that is not really discussed in Indian household should i say, as we dont talk death. I understand why as no one wants death never, but we have to die right. even I dont want death. Every day is blessing for me when i wake up, every day is luxury for me. every day is more sad for me as well.

I do 9hrs dialysis every night and every day, no days it has to be done and lots to maintain.

what is this all this  Organ donation that you herar on TV and people etc.. I know you are all busy enjoying life and only think about job and life and family etc.. Life is one busy life. we are running fast to have the big house, big cars, great status and so on . that is your right of course. lets just take one moment of a pause in the life.

I was like that until July 2016, as you can read from my other blog post. I am one of 6000 patient hoping for a organ, especially kidney , I only need 1 to give me a good chance to live with my wife and family. I also have hope to survive for my wife. I can’t bare to see my wife sad. I am 41 young guy who deserves a chance to survive people. there are many younger people with same problem need help.

Why is that we don’t sign up to be a organ donation, it will only be taken the day we die. that is the reality. I feel sometimes are mislead by our faith maybe or maybe not.

are we scared to give something away of this kind? possibly very true.

I never thought about organ donation as i felt  my life was perfect and carefee in life. Then like i said july 2016 changed my life , money, status meant nothing to me. i dont even wear a watch since the day i woke up in ICU. i lost that interest only slowly i started again to enjoy things but imainly do it fo rmy wife.  Going to nice places to eat , possibly if hospital allows nice holiday so she can enjoy the life she deserves.

then I realised the truth we so short of supply. my blog is not to offend anyone, but to just give a basic insight of my life on dialysis, I will be producing more information on this as time allows me.

In the year 2019 – please all of you out there i know you are generous in donating money and food and doing all kind of good deeds. I believe god sent me back from ICU to help you all preserve a future for your kids and generations to come. If we sign up now maybe in 30 or 40 years time when you no longer here, it will coem handy to the generations to come , think that way like afuture pension plan. we pay for life insurance, pension etc.. why for our family.

my only question is at this stage – if you needed a organ and you got a call its ready would you take it? i am sure yo uwould, then why not sign up to become a donor?

its a simple logic question people.

I hope i not upset anyone, I will be sending more info in my blog on lots of things. my main goal is to show the reality of a patient, i am a Patient who is on dialysis, not just a person who speaks about organ donation, I am living proof waiting for that phone call form the hospital to say we got something for you. its sitll a big risk if i take it but then it not as big risk as being on dialysis till how long ? till the clock stops.

I give you some info, my kidney works 3 or 4% percent wihtout dialysis, with dialysis now works 9% , very scary figures.

I smile everyday around me to give other people smile..

Enjoy your time off christmas and welcome new year 2019 with family or friends. Lets think of the loved ones who need that organ. lets push to help them, make it one of our goals of 2019.

Service to Humanity is service to god.

 

 

 

Hi people,.

The day had arrived it was 1st of July 2018 on a Sunday, the weather was going to peak at 30 degrees. questions were raised can I do it , will I be okay. Lots of concerns from charity team , family, friends and so on.

I knew I had to do this to start my path to what I am here for and why I am I doing this. then you see the money raised by so many generous donations come from people wether it was £5 or £1000 pounds every donation was big for me. It  showed no matter what amount was donated , they donated by showing support and love, thats a starting point.

One day we never know when it comes on our door step. before I go further I agree with one thing “if we needed an organ we would take it with 2 hands” ” then we should also be willing to register as organ donor after out death”  dying is a big subject no one can stay in this form. Some people will agree or some people may disagree with me, I believe we respect all views of people. here is the link to the register to become a doner. do think about it

Organ Donor Registration

Moving on to this walk, 7 miles it was with Kidney research kidneyresearchuk

the team at kidney research had interviewed me about my story see below. then the journalist from a new online team called and wanted to do an article , at first  I thought I dont want to in my mind, do i need to show the world. Then i remembered why i am doing all this not to get known or smypathy, but to understand for people what patient go through and how our lifes live on hope , there is 2 choices left transplant or death.

the link below is the article from the journalist, i just want to thank them. a slight correction the article which may have been incorrect. ” the hole in the heart was known few years ago” ” at age of 16 I was disagnoised with 1 working kdiney.” which is fine you can live your whole life on 1 kidney, which is proven but my case is now different. I think fear is big thing.

New Article link

Myself and Jalpa was the plan to walk the 7 miles then came along my aunite (KantaAuntie age 70 to walk with us) what a great surprise it was last minute decision she took. I think thats when my energy even got bigger. I remember getting to the event i looked around me think my gosh, never done this before.  I was scared, sad inside that so many people are suffering as well. hardest part was very few ethinnic people there..  I thought we need to do something in life about all this.

The day had arrived and seeing people around me, gave me the energy on the day. it was 30 degrees sun beaming down and hot weather, many things running through my mind, will i make 7 miles, raising over £5,000 and then letting those people down. I knew i had to make sure i do this.

Below was the map of the walk for people who like to know.

 

 

 

 

 

 

Hi All,

Me with my T-Shirt arrived in the Post for 1st July 2018.

 

this year I set a goal as last year I was not able to do this.

Me and my wife are taking part in the Kidney Research Walk charity on 1st July 2018 London Bridge.

I be raising money for a good cause, to help future generation to come, there is no cure for kidney failure, expect a Transplant and even then, it can may not work. Dialysis is another option to keep you going but there is an end road,

In this country we don’t have enough Donors, after Death either our body is cremated or buried, I humbly ask do we want generations to suffer, because of wrong thoughts, is it a culture barrier issues, is it fear, is it lack information.

WE can achieve some much, we are very powerful battery as humans, we just don’t realise that only us can make this life and around us better.

my link to the JustGiving, if you like to donate something we be very much humbled.

 

https://www.justgiving.com/fundraising/sachadev

I am patient who is waiting for a Donor. I am a dialysis patient, with a O group. when a donor becomes available I can be given a new lease of life.

I want to encourage more people to become a donor, when we die, our body is either Cremated or Buried. If we can give our organs after our death, to help someone else to have a better life to live longer, I say that is biggest gift and donation any mankind can give.

There is huge shortage of donors in the Ethnic Community, the future looks even worse, if we don’t act now.

One day someone else may require a donor from kidney, to heart, liver etc.

I think it’s time we thought of this, even by just sharing and liking this page and asking questions, would be a huge achievement. My goal is to engage and spread this around to all people in UK. I hope to that something good can come of it.

Remember I am patient who is also waiting there are over 6,000 patients out there waiting. They live in hope that one day they may get that call.

We all can make a huge difference after we are not here.

Thank you

This question always comes up I think.

Again every one is different and will have situations that will stop them doing certain things or going certain places.

AT times we have to make that choice is it correct for us or is it safe for us to be going to certain place. I think when on dialysis the main thing is can i do dialysis, will i be open to high risk of infection.

I say this don’t let dialysis stop you doing certain things, yes it has to come first and be your top priority. You need to watch what you eat  , drink etc..

Again only you can make those choices with the help of Hospital, but end of the day you have to choose what to eat or drink. Dialysis is a gift but we must remember never to abuse it , as its doing us a huge help, so why not let us help it as well.

Making decisions in life is hard enough but when on dialysis it can go either way, we can be strong and positive and do things that we never thought of doing.

Yes Dialysis does tire me out and when you are on end stage kidney failure like me then yo uare going to be tired, that is okay its normal.

How have i try to stay positive. I goto work, i work 30-40 hours a week, but i try to keep it to 35 hours where possible.

This helps me keep active mentally and also keeps me busy. Do discuss this with your employers, part time work is good thing or doing volunteer work , charity work, something to get you out and about. I can assure this will help you alot.

There are days when i am so exhausted that its hard to setup the Dialysis machine and and get connected to it. The worst part is when I make mistake its can really frustrate me as I know I have to start all over again, especially when my body is going down.

Being on dialysis does not mean you cannot go on holiday or travel, there is lots of opportunites of doing this but please do seek your Clinic / Docotor advise. There is lot of planning that goes into especially when going abroad.

Question what do I do when i want to go somewhere warm and nice, I am trying to travel to places I never been whilst I am Alive and my health allows me.

First thing is I look at what country I want to go, and speak to my clinic and understand the situation and can my Baxter supplier help and delivery my fluids to that location of country and does the clinic think its safe for me to go there and what medicines will i need etc.. Also we have to be realistic do we want to be in a high risk area , will we cope with that, dont be afraid. I am very cautious about those stuff.

Then I starto look for hotels and now I Generally go for 4 to 5 star hotel. Never book direct on the website.

The first thing I do is email 2 or 3 hotels I like with the following question if your on PD like me.

1: Can you accept fluids via my hospital team

2: Does the room have A/C

3: Does the room have movelable Tables

4: is there sockets near the bed

 

Also I check on reviews of the hotel which is normal.

 

Getting clarification on the 1st answer is always important and then you know which hotel you need. I then confirm my booking wih the  hotel but note minimum 8 weeks to 12 weeks is needed with our Baxter/ Dialysis Clinic.

I would suggest to book Special Assistance with airline, it will give you the right help you need, as it is you have a disabilty. Taking the machine and lifting itself is very heavy on.

With any airline you can check your machine in and bag for your medical supplies. I always let the airline know about this and make sure.

Also get a letter from Hospital for your machine and  a letter for any special meds , as they  may ask at airports. Carry this letter with you.

Also if you are on the transplant list, note if you go abroad, they will want to de-activate you so you need to give your dates. also always make sure when you back you activated.

You will should then get a letter from your supplier to confrim all details and what stock they will supply normally 2 weeks before you fly. This will help you to pack what you need to take.

before you fly out it is good idea 2 -3 days before you make sure the fluids or medical supply has arrived at your chosen place.

when you are are abroad, you need to treat things like you do back at home, full safety and everything.

 

I say this ENJOY THE HOLIDAY. I know we still have to do dialysis but we lucky to be able to have a holiday.

 

 

This is always a good question, especially at young age, does it change your life ? will it effect alot of things? what will people think of me? i am disabled?

Many thoughts went through my mind when I started Dialysis in July 2016. I can say one thing for sure you  get used to it but you never do, if that make sense.

I have to do dialysis every night / every day for 8 hours. I sleep not all 8 hours that’s something i have to accept at times.

Does dialysis of end stage kidney failure make you feel depressed, yes it it can have you mood up and down, its okay to have that. I sometimes feel frustrated and alone that  i am alone in this journey of mine.

I learnt more than I could ever learn in life, I learnt love and humble and I also beleive in god and I am very grateful for his energy he has given me. I know something is keeping me going, its hard to explain to anyone. I hope that in these writing of blogs I can help with so much positive and negative but also , how to stay ahead and don;t let it all get you down.

It changed part of my life dialysis. There is safety procedures we have to follow , cleaning, setting up the machine every day and keeping our house/room very clean, so important in this otherwise you can easily get infection and I been told its not nice.

I know people say you cannot enjoy dialysis, but my best friend is my Dialysis machine, I sometimes even laugh and smile at it, but I also treat it like a baby as it’s keeping me alive and doing the work my kidney cannot do but i also have to remember its a support machine not a life saving machine.

There is 2 types of dialysis Hemo and PD , I do PD as its gives little bit more freedom to my life. it allows me to do certain things that I enjoy.

I cannot go into swimming pools and I only have sponge bath, I have forgotten what a shower feels like. I could have  shower but its risky of getting infection, so I am scared. (but that does not mean you don’t do it, each patient will have different view and feeling)

Its small things that I have to give up for me to be sitting here typing and listening to in hindiusm Harinaaam.

There at times I feel very down and sad inside and tears in my eyes, but I hide it away from people. I dont want people to remember this way, I want people to remember that something I could leave behind in life if i my time comes. I did something for the future generation to come be it Hindu, Muslim, Sikh, Christian, Buddhishm, what ever you are or believe. I want to give back to this world and country, as I am debted to this place in my life.

I always go and push myself and do things, sometimes even hospital are suprised how do i work , how do i travel or do things so much. I said mind over matter at times and let the bigger doctor worry about that part.

I think when you in my situation support around does help alot. you are going to have more than 3 or 4 days of struggle and at times feeling I dont want to do this dialysis or feeling low in energy. Its okay to ask for help we are humans end of the day.

 

Is there much support for Dialysis patient, the answer is yes from what I have. Can the government do more for us , I think it needs to be much more support.

One thing for sure apply for PIP – you will get help in money to help you. Dialysis can tire our legs and makes weak.

One thing I learn and always learning about dialysis and kidney failure. Just keep going and follow doctors and nurses input. Also we have to be strong and our willpower. I know its a long waiting game for a transplant and its like a lottery. I say to you in UK is it time we discussed why after we donate we cannot donate our organs for other people use. Is it really to do with out religion or is it to do with attachment and death fear?

 

https://www.organdonation.nhs.uk/about-donation/what-does-my-religion-say/hinduism/

Again its individual belief, so I will not go too deep into this as each person believes in different things.