Author: lifeondialysisjourney

Its been sometimes since I been thinking hard on this and what to write and explain where possible. Writing cannot also really explain what people in my shoes go through until you actually live it.

World and soecity is not fast world and not as understanding towards people who have Kindey Failure and have to have dialysis treament. Not enough understanding is out there about this.

There many professional who deal with Mental Health and many counsellors – (not saying they dont know what they doing or people think i can educate you on mental health, I am going to brutally honest, you dont even know what we feel because you not living it) (yes you help us to try and express ourselves but i see loads of life coachingon this – with all respect please stop, its not how it is)

kidney failure patient go through alot of emotion and rejection inlife, number one is getting onto a transplant list and you life the life of hope that one day that fall call can come through and you can have change to not have no more dialysis that wipes the body out, that drains us out but we still sit and smile to people. (because we want to or because we want to be accepted as normal but we not – we put that smile on to help us stay in the right frame of mind – inside we feel knackered diaylsis is aggresive treatment its not visible) .

During dialysis even when you have to connect times come you feel sad you stuck on this for 3- 4 oreven 9 hrs, what life is there for us we wonder (All we know is that this is keeping us alive to help to have some life) I am lucky i do dialysis and work (believe me its not easy task, i push my body to feel ok but i know i am already zombied out but i carry to keep myself active in the mind -the body fights back plays with the emotions and tricks. Days you feel you have had enough of things- why me , what am i doing.

We patients never wanted kidney failure – we had dreams and ambitions but they get snatched away from us – many people like myself have achieve alot with having kidney failure ( this is a hidden death certificate, you cannot see its slow death that is the reality of life for us – but we keep going and do the right things to help us live a full long life) in the end Transplant is what gives us much better chance of life.

I ask patients who had transplant and thriving in life, do they forget what it was life to have kidney failure – as no longer they in that boat. We forget to understand other people – I am sure this happens.

No Patient is the same every person has different outcome of each dialysis session. some cannot even do anything for days some can do something and some do it because they just push themselves to do it. Knowing if they dont they become even more depressed even more sad and dialysis will take over the body.

I had kindey failure since july 2016 – the trauma of accepting kidney failure even today has nver gone. I had a transplant in 2019 which went horribly wrong (Trauma to this day is still with me eats me up inside but i cannot show it to anyone , am I afriad of rejection of people or rejection what people may think – that is also a Mental Health that goes on in the minds) when a transplant happens and fails its biggest rejection to us . Knowing you had the chance and it also got taken away from you, You never really can let it go , but you try every day to do not remember but as people in my shoes will know its keeps haunting us. We ask why us? why me?

This journey has taught me alot i gone through many hard days and nights since 2016 , that i never speak about them only myself and my wife know the struggles we have had dialysis at home, during the night time one and the day time once. We put a massive cautious and risk when we do this. There are times even when i am on dialysis i have had tears in my eyes running down. (believe me when people contact me i wipe those tears away because I know they cannot understand me).

I have done Half Marathon but that was my life time achivement knowing to show people we can still do some things but i know what its like when you feel helpless.

We feel we are the burden of Society and family – because of me cannot do this and that. There times when I go out – after 1 hr or 2 I have had enough and I want to go home – its not because i dont want to be there- I just feel no more my body is tired i am tired. (or is really because I may have and suffer depression through many sides of life)

Dialysis patient does not get much support from the Government at all, not enough help or awareness is given.

When dialysis patient do it from home or goto dialysis unit- sometimes we are treated with rudeness or no help. Imagine you are stuck on the machine and feel thirsty or hungry you are stuck as no one can or will help you get something to eat not saying all places are same but you are stuck.

People are restricted when also doing from home, as you need someone around as i have experienced blood leak from my line on large scale my bp collapsing on me the line not working the frustration, what now what if your mind over takes the situation.

You see people go off last minute holiday – we cannot even do that. Planning and permission with hospital is needed. You need to make sure all is in place before you even book anything, some planning takes 3 month to 6 months. Imagine the feeling of fustration knowning that even when you get there will it be okay. Each day because a normal day of treatment.

we have to live with this knowning we may or may not get transplant. we fear each day i am alive and ok. There are times when i am okay and suddenly after few hours i am totally wiped i cannot do anything or no more. My wife says you tired already and yes I am.

I go shopping when it was not lockdown for CVOID19, in the supermarket suddenly I turn to my wife and say I not able to walk anymore i have to go home. That feeling of let down the sadness that runs through that is because of our Urea level has crept up in our blood the toxin which has a massive effect to our Mind, emotion and body.

I have been to many places and when people hear that I have kidney failure and dialysis they are like no way – (its because we hide and its hidden) we struggle everyday.

Whether we fighting our personal life or professional life believe me we are balancing our life and sometimes we have to put our sadness and health onside just to so we can do other things.

To all kindey failure patients when we helping one another dont knock them as we all one big family to help each other through the tough times. One of those days you will also feel rejected and down and going to need that lift of support. To people we may not show our inside feelings because we are scared , what will happen to us and what will you think of us. We are afriad of many things but just dont show it and put on a acting show to the world, we pretend to be the life of the party bit at home , event or work. Believe me inside we could be crying knowing I have to go for my dialysis or do my dialysis this evening and I cannot go out and be normal.

we have to plan 1st our dialysis treatment to clean the toxins, to allows us to be somewhat ok.

To the healthworkers sometimes I know your busy and stuff, but please try to listen to us and be bit sincere in what we want and help with. I know you have many patients but we also part of that.

we just want to be accepted fairly and understood in our life. Kidney failure patients can achieve good things but need fair balance chance. Not everything has to dog eat dog world for them as well. One day you never know you may be one of us (but god willing you don’t)

thank you

Hey people – so I had a Kidney Transplant in March 2019. Some people say I should not write a blog as it not the happy ending of it and some people say do it.

My intentions are not to put people off donating or having a transplant but there are always 2 sides to Transplant, no matter how well you take care or how well a operation goes. Its full of gamble in all aspects, does it change your life either way, I believe it does and when it goes wrong it can go  wrong badly.

I been on Dailysis since July 2016 2 years and 7months before I got the magic fall call, believe I never expected it to happen, because of the stigma of being indian it be hard to find a donor etc.. I was doing well on my dialysis at home and it become the way of life for me and my wife. I accepted that this will be the way till who knows when that phone call will happen.

I was at home from work and been planning my trip to new york with hospital and stuff, finally go it all approved with my dialysis. I was just about to book my flights it was 4pm and mum said call from your hospital kings college – as normal I thought aah must be dialysis team – to tell me do this and do that at home when doing dialysis. My what surprise it was my Doctor who looked after me before and told we have a Kidney for you. of course even at last minute the operation may not happen after they do testings before they give and Surgeon checks the Kidney that is available , they had 2 and felt the one that be best to give me. I was shocked and excited. Got to the hospital and as usual I hate needles but then waiting game started for this kidney, at some point it was meant to be 10pm operation then it got told it won’t happen till 10am. I was puzzled where the kidney was, I was told Kidney can be kept on ice for almost 30 hours but soon the better, I think mine was 14 hours wether that had an impact i will never know.

Next morning I was taken down to the Theatre, very scared but was told operation only takes 3-4 hours you  be fine. flashback of 2016 kept happening from my Heart OP.

This operation took 7 hours much longer than expected for them, nothing is easy when it comes to operating on me it seems. I was in recovery room and by luck they allowed my family to come and see me for few seconds at a time, I kept touching there faces to make sure I was alive. My the nurses in recovery was amazing, and the painkillers too did make me feel funny in the head. I remember coming back to the ward already thinking how life will be with out dialysis and have my life back. I never planned to have a life on dialysis , I could used to as I knew it kept my alive. This was best treatment to have  a transplant , i slowly became good friends with nurses and doctors their.

5 days later was allowed to go home, barely could walk as it was just been operated. the relief just to go home for me was amazing, i thought I be here for a long time , like my Heart operation. I got home and next day went to hospital, you get told to take your tablets on time and etc.. I was there at transplant clinic and then straight in and straight out. there was a worry the kidney had not yet woken up. I was getting told this is normal with Kidney Transplant and can be slow process for patients. I thought nothing of it.

Friday that night i was not well , sick and diarrhea and Saturday, my wife called the hospital team, they said its normal. I was feeling really bad and I knew then something is not right this cannot be seriously normal.

Monday had to return back to transplant clinic, as with transplant you are expected intially to attend 3 times a week. I was taking like 15 tablets in the morning. That day the Dr said we need to keep you here for Biopsy in the ward. I was admitted but I had no clue what a biopsy is and i thought ok I be here few days then go home. My gosh how wrong did my thinking go. I did not know I be here for almost 3 months that not just physically but mentality was going to turn me upside down.

Whilst in the ward I had 4 biopsy alongside 8-10 minor operations in line changing, hated every time , it need more than 3 people to be around me , all done whilst i was awake. Each time was exhuasting and agony of thigns happenning at a pace. I was not prepared or even told this what could happen.

Whilst in hospital I was keeping my self above the water and not allowing myself to drown, but times i felt i was drowning and losing the confidence to keep fighting and hoping this will make it work. Days their was nothing to be done to me , it was relief and I felt good. The 4 walls of the hospital was now starting to be come a tough life. I kept wondering will my new kidney work and when do I get out of here.  At one point i thought I am finished in this place and I won’t walk out alive. Life became hard and mood kept changing and emotions on the high.

The plasma treatment I was given for 5 days was a very aggresive treatment, I still remember my whole body shaking whilst attached to the Machine, feeling very cold, I was told this is normal. After 5 days when the Biopsy was done again, there was some signs of light but again the Kidney was not playing ball.

On April 30th I was going to have 2nd Operation under General to put a dialysis line in my Neck, this was going to be my freedom to let me now go home. All treatments that could be done had been exhausted on me, there was one but it can only be done once in a life time, After many discussions between doctors and me it felt best not to do it. the reason is the Kidney was doing the things they wanted and once used cannot be used again and chance is you can die from it.

On 1st or 2nd of May I finally got to go home, but beleive me it was the best feeling , it felt like I been released from capture.

I had to on the condition I go 3 times to the transplant clinic  and also have bloods taken and wait  to see if I need dialysis or anything. for at least 2 weeks it was looking really good. The kidney was holding at 20% the new one, I thought we can live with that better than being on Dialysis.

Then suddenly one of my visit at the clinic my Transplant Dr felt I did not look right and was very worried and decided to do urgent blood that gives her ansnwer in 10 mins. I knew i was not right, then she decided we need to keep you back in, I said no way, she said few days, I knew I told her your few days becomes a whole week. Then they had to give me almost 6 pint blood i was very bad situation, I could now feel why they kept me in again. then after week I went back home. Then 2 days later I kept feeling pain near my new kidney and we felt it must be muscle pull, but then pain was getting nasty and not so great feeling, Dr offered me at the clinic stay here and I get you CT SCAN done, i said I am ok. I just had enough staying in hospital again. Then that night she called me saying need you back in urgent. I was dragged back in on 5th June, at about 10pm within an hour CT SCan was conducted and Antibotics was on pumped through , my infection level had hit the roof, their was problems. Early morning Dr who I known for 20 years , the lady who saved my life in 2016 and got me back on my feet was in charge, I tell you when I saw her I knew now I am safe. She told me I seen the CT Scan and it dont look good. I knew then what she meant. She said give me 30 mins I be back , just need to see few patients, she came back with her team exact 30 mins. She told me holding my hand as she has treated me like her son since the day she looked after since a young boy. I said to her please taket this kidney out it will kill me, as tears flowing in my eyes, She said I was about to tell you that , I said what ever you decide my answer is YES, as I trust her fully.  She said let me speak to ST Guys team and surgeon, within 3 hours a Surgeon came from St Guys hospital and met me and had a feel and he said its needs to come out. He said dont i get oy a bed urgently, the process had kicked , the Antibotics still running twice a day. My Dr finished her rounds and came and sat with me, she was calling the other hospital for my bed and liaisng with Surgeons their. This Dr she is very senior figure in Kidney at Kings. we spoke for good 1 hour. then later she came and told tonight we won’t transfer you, it be tomorrow or Friday, just sorting the bed and stuff. Friday I was taken to the other hospital by Amublance and My Dr said here is some notes and my mobile number , you need anything or not happy call me .

She gave me a big hug and told my mum dont worry he is like my son, I know Amit how to handle him, he has had hard time but he is big fighter. I could barely speak or breath and was now getting worried as , intially theoperation was going to happen on the weekend but they decided not to go ahead.

Monday 10th June came, I was ready for my Operation, the head of surgeon was on the ward rounds with the dr, he met me and he was so nice. He told me your next and we asked who is doing the operation, he said I will be doing it so I will see you downstairs shortly.

short story the Kidney came out and it took 4 hours , it turned into a big job. Surgeon met me next day and sat with me . He goes i seen bad but this was bad any longer and it would be of been tough job and you are lucky to be here.  I learnt few things from him which I will not share on my blog , for future reference, something I will keep close to me.

This blog post is not to put people off but to give an insight of when a transplant goes very bad, things will happen good and bad.

in total I had 4 Operations under General. I hope no more.

I want to still help other Kidney patient get their organ and help them whilst on dialysis and be a support person to talk to in time of need.

My wife , parents , sisters all gave alot of time whilst i was in hospital every day my wife came and parents came, it must of been tiring for them , especially my wife working and coming to me and doing long hours. There was times I broke down in tears and was begging to get me out of the hospital.

Whislst I was there I found something that really lifted me up

“Having a Rough day?”

Place your hand on your heart feel that? Thats called purpose, you’re alive for a Reason!!! DON’T GIVE UP!!!!

This when doctors started to ask me how  I a mfeeling, I read them this and they smiled. Today when the kidney team at kings see me the nurses and doctors , its like one big family, they say wow how you keep smiling, I just do.

I smile , so they smile, when I see the patients at dialysis I smile at them and they smile make them feel good, but when I cry I cry Alone not let anyone see that.

This has been a journey that I never wanted, when we get a transplant i planned so much life without dialysis and things I can do and my wife can do.  All our hopes were back with a Smile and suddenly everything got taken away, I lost trust in Doctors only now I built it back so far. It was hard for me.

My life in 5 months has been turned upside down be it Personal level and Professional level, I have apaid huge price for this Transplant that was not successful in the end, do I regret no I never regret, I would take another kidney again, maybe not yet but go back on the list if I can in 2020

I return back to the fight of Dialysis and I hope to god I get something better.That I dont have to pay the same price as last time.

What I learnt is that their not enough understanding or support for Kidney failure patients who either on dialysis or on transplant, its worse even when you work to get Government help is hard. I feel more needs to be done for Patients of such situations.  I salute every patient but big salute to  patients who keep doing things to keep active and work or charity stuff etc.. keep it going that is what keeps us going.

My wife once said , its hard to know what you went through in hospital and this transplant, even though you have talked about it or wrote it. I can only imagine as your wife a little.

please keep signing up to be a Donor and lets push that people understand that we all live on hope and tomorrow anything can happen to anyone.

“Transplants aren’t a cures; transplants allow a better quality of life.”

” no two days are the same.”

” Mental record is just as hard and important as physical recovery”

“Nothing can be assumed”

“More often then not, there’s a struggle going on that can’t be seen”

some pictures of me taken , thought I share.

PLASMA MACHINE TREATMENT

 

 

 

 

 

Dear all,

 

Me and Jalpa have decided to do 13 mile run, Yes Half Marathon. its a huge challenge, I never run so much. Will i be able to do it , only god will know. One thing is for sure the support that i am getting will be my battery power, you people are my battery.

its on Sunday 10th March 2019, around 20,000 people taking part

why am I doing this, not for myself but I feel we have to sow the future for Generations to come in all communties and all race. When a person is needing an organ – then Colour and  creed of that organ never matters, as we know it going to help us live. Whilst we still argue about caste, religion and colour. inside we are humans. we shoould learn to live our duties and culture we believe in and respect all Human Being. That is important to the god up there.

I am raising money and awarness of my health but also money to go to kidney research. Why ? because there is no cure for kidney failure, you get dialysis and hope it give us chance to live a longer time to support your kidney that has failed.  in the end only a transplant is good enough to give us any hope. That is also big risk it can fail.

my kidney works only 3% with out dialysis, with dialysis it makes it around 9 -10% that allows to me carry on with life bit more.

You will hear for heart – you can do bypass, pacemaker, stent etc.. with Kidney fails nothing is fixable. even when its declining you can preserve it with care but even then it can fail at any given time, due to medication , due to various things. WE need to help the future , this kidney research team is the only way, for them to find the breakthrough. it may not happen for me, but i know the  money I raised will go towards that and the future generation then will benefit.

Ethinic Miniorites  – are losing out on organs that perfectly healthy to use, but we seem not to sign up as organ donor after we die.  This can be various reasons. I think we have to be pratical, its big thing to donate this to someone. IF you are alive and you donate 1 kidney, you will live longer they say or better, becasuse you ge tthe full Check up that you never would get otherwise.

I am so humbled that people are showering there support and love for me, How I will repay all these people back maybe next birth or birth after.

The day had arrived we got the to the marathon at 7:45am, all roads where closed. intially the weather was good then it turned to heavy run and wind before we even started, I was feeling very cold. I thought to myself oh dear how am I suppose to compete. The 1st thing i saw around me many people seemed like great runners and i felt should I even be part of this, someone like me how am i going to reach the end, then the rain stopped nthe wind stopeed, it was now 9am start time. as I went past the start line with Jalpa, I started to jog and we all went down in a tunnel before i knew it was already 2 miles I thought wow this seems good then my body was giving in at 2 miles and i thought okay I will walk bit for now, our challenege was to reach the final line within 4 hrs.  I walked to from 2nd mile to the 3rd mile then jogged a bit around the 5th mile the wind got head coming towards must of been at least 45mph. My breathing became a problem i had to take one side to get my breat as the wind was causing me alot of problem. I was getting very scared as my body is light and I nearlly got flown and would of hit the wall. Jalpa held me tight, we stood one place the wind went down. we then took the plunge and said lets do this , we will battle the wind. we got past that, we reach i think it was 8th Mile. My fingers were sore and my legs were just giving way, i felt i had slown down in my fast walk. alot of people around me was now walking , I felt ok as i was not the only one.  Lot of people running past me congratulated me gettign to the 8th mile on dialysis, thats when i thought my gosh 8 miles, all the way through I had dhun and kirtan by Bapa and Hare krishna Kirtan singers. my feet was feeling sore, my legs was now dragging, i just about made it to 10th mile, then I said to Jalpa no more I cannot move anymore, but then jalpa said its only 3 miles left you can do this, she held my hand and we started walk fast till the 11th mile, it was one tought mile I have to say.

we reached the 12th mile and i knew then we now just 1 mile away from huge achievement, I was walking and the people supporting was pushing me on to make till the end, as they could see i was total Pain, walking with pain but i needed to get to the finish line. I remember at the 150 meteres, jalpa was ahead of me and i tried to run the last 150 meteres but legs just could not do it. Jalpa came back and held me all the way through, the feeling when i saw the line, my fist and hands went in the air. My gosh thank god I have done it.

My recorded time was 3hrs and 36 mins. I was very please as we aimed for 4 hrs.

I did this marathon to raise money for kidney research UK.

Kidney Research

Dialysis that i do is not a CURE. its a treatment which I do for 9 hrs every day and every night. Its very tiring treatment. Alot of people at the event was shocked I did this Marathon on dialysis.

Dialysis is great whilst the kidney can handle but the best option is as top treatment is Organ transplant that is a gold Treatment. we really need this a cure for Kidney Disease, so kidney does not fail.

Kidney research do alot of work as I have seen, some great work has been achieved but there is alot more to be done and not enough yet done. I urge people to support them.

Also we should also consider becoming a organ donor and yes people in Hinduism or various faith will have different view on this. I only ask this when you need a transplant or organ and I hope you never require it. You then think its perfectly okay to accept a organ, (How does that work?) does not effect religious views or thoughts. if you think for few mins from Hindu perspective. Our Soul is for ever, this body is just another outfit if that is the best way to put, a new clothing. When we did we believe we will reborn and take new body and new outfit. What use is the organs to you when you die, you cannot even hear anyone or speak to anyone, (I know this from my ICU time).

Then why the hold back to sign up to be organ donor.

 

In 2020 it become that everyone will get signed up , but think why should be we wait for that Law to come into place. Once that Law is in place. we still have to let our family know that our wishes is to donate or not to donate. Do speak to your family or Friends.

 

I hope that I can do more charity work in Kidney areas and able to go round and give talks and answer questions where possible.

Please do follow me on twitter

here are some pictures of the marthon

 

 

Dear all,

Hope the start to the 2019 is going well and we are already end of Jan, seems like Jan gone slow don’t you think.

Me and Jalpa have decided to do 13 mile run, Yes Half Marathon. its a huge challenge, I never run so much. Will i be able to do it , only god will know. One thing is for sure the support that i am getting will be my battery power, you people are my battery.

its on Sunday 10th March 2019, around 20,000 people taking part I believe, the roads will be closed, hopefully weather be okay.

why am I doing this, not for myself but I feel we have to sow the future for Generations to come in all communties and all race. When a person is needing an organ – then Colour and  creed of that organ never matters, as we know it going to help us live. Whilst we still argue about caste, religion and colour. inside we are humans. we shoould learn to live our duties and culture we believe in and respect all Human Being. That is important to the god up there.

I am raising money and awarness of my health but also money to go to kidney research. Why ? because there is no cure for kidney failure, you get dialysis and hope it give us chance to live a longer time to support your kidney that has failed.  in the end only a transplant is good enough to give us any hope. That is also big risk it can fail.

my kidney works only 3% with out dialysis, with dialysis it makes it around 9 -10% that allows to me carry on with life bit more.

You will hear for heart – you can do bypass, pacemaker, stent etc.. with Kidney fails nothing is fixable. even when its declining you can preserve it with care but even then it can fail at any given time, due to medication , due to various things. WE need to help the future , this kidney research team is the only way, for them to find the breakthrough. it may not happen for me, but i know the  money I raised will go towards that and the future generation then will benefit.

Ethinic Miniorites  – are losing out on organs that perfectly healthy to use, but we seem not to sign up as organ donor after we die.  This can be various reasons. I think we have to be pratical, its big thing to donate this to someone. IF you are alive and you donate 1 kidney, you will live longer they say or better, becasuse you ge tthe full Check up that you never would get otherwise.

I have lots of donations come throug on the link below. I am so humbled that people are showering there support and love for me, How I will repay all these people back maybe next birth or birth after.

Amit Half Marathon Donaton link

 

my work colleagues raised together £1810 including gift Aid , towards my half marathon.  A work colleague lost a bet and had to shave his hair he decide to raise this money for the charity I am doing the half marathon I am doing.  below are some pictures

 

 

 

If you are free on Sunday 10th March message me for the end line and cheer on when me and jalpa try to make within 4 hrs.

I taken a quote from one colleague and a friend at workon the donation page

“Having the strength of putting your struggles behind and coming to work everyday, on a stressful role, facing it with a smile on your face, after everything you’ve been through. ”

I read that I thought wow , i never saw it like that. I just feel like i am like everyone same equal. thank you for that inspiring comment you made and obeservation very good.

lets leave something for the generations  to come.

we should help the future, so that future will look after our generations to come.

if you like to know more about kidneyreasarch see below

Kidney Research

#Teamkidney

Thank you

Amit

 

 

 

Hi all,

 

2018 where hear about people having to use foodbanks and sleeping rough on the streets of UK, how is possible. Is this correct , what has come of this rich nation, that our people have to survive on foodbank and people end up on the streets.

Something surely has gone wrong in the country. I was thinking when Diwali went and Christmas was coming near.

Me and Jalpa thought what can we do to help in a little way. We helped people in India, then I said to Jalpa – we live in UK- we need to help the country we live in , what are we giving back to this country, we dont see poverty as we are rich nation, then so is India rich nation. the trouble is we see it there when we go on holiday.

I showed jalpa look at the streets of london at night and you will see people sleeping on the streets, then i explained about foodbank, that people who working they are struggling to put food on the table for there family. we just dont realise. We are busy work and home, work and home etc..

we decided this christmas we buy some food and give to the foodbank and hope some people will benefit from it.  we raised £80 which is nice of people and also put our money in the shopping and dedicdes to buy things from Tesco and give it to our local foodbank. which we did,

People I hope you all are able to do something for your community and help foodbanks and homeless people in the right way and the right direction, we also need to held our government accountable for what is happening.

 

thanks

Amit