The Journey Begins

Thanks for joining me!

Life on Dialysis and my journey . — Amit Sanchadev

 

What is like to be on dialysis is always a tricky question? why do I do dialysis? how do I find my energy? how do I find positive thinking?

Dialysis is a big thing and can throw many questions to people.

I am no expert, but I am dialysis 7 days a week for 8 hours a night. Did my life change yes, but I had to stand up and fight my way through? I am on dialysis since 27th July 2016. it’s been 1 year and 9 months so far, time flies.

Some images in here will be no so great for people to see and I apologise now.

Dialysis is keeping me alive in my eyes, it is helping my kidney do things that it cannot do anymore. my kidney function without dialysis is around 4% but because I do dialysis it stays around 10% so far touchwood.

People ask me how comes you on dialysis, you’re so young and it only happens to older people. This is not true, illness and problems can come at any age, our willpower is what keeps things going, I believe god and guru. I know those things also are my strength to do things.

on 27th June 2016 I was going to have my planned Open-Heart Surgery, to close my hole in my heart. I still remember the day I was admitted, thinking in few weeks I be up and doing things at home and recovering and slowly back to work. I was wrong.

The heart operation was around 5-6 hours, which I was told went very well. I was taken back to HDU (high Dependency Unit) – I have even told my mum to bring my tea and telpa. (smiling as am suddenly ready to run, how silly of me)

That night things turned for worse, I knew I was told by my professor your kidney will collapse there is that possibility.

That night I don’t remember what happened, all I know I was rushed into ICU, the scary call went to my house, that I am in trouble. They will give me medication and support to get back and will make my kidney fail. That night I have no idea what my wife and parents or family went though as I was, hooked to machine and not breathing, went into coma, (semi coma) they call it.

Below is me attached to the machine, this picture was taken for my own sake I think to realise what I have come through and to always keep my humble in life. if you don’t like what you see below again I am sorry please scroll down and look away and then read on.

 

I never knew when I was going to wake up from this. I can say one thing I could hear my sisters, wife and parents around me and my auntie talking to me and giving me positive vibes.

I remember in ICU whilst in Semi Coma – I felt I had died already and could feel myself floating and I saw a big shining face of god. Like. it scared me a lot – I remember to this day saying to him I am only 39 why me, why now, what about Jalpa, what about my life ahead. then he should be all you are is ashes. everyone is coming and going. I said send me back I have lots to do not knowing anything. I was scared and panic.

Then I kept having dreams of the same thing me having a heart attack and dying, but then after few days I was getting more scared inside as I was not able to wake up and explain to anyone I am okay. Please help me stop all this machine stuff. how funny as no one would know what I was seeing.

I knew my wife used to come every morning 8am at icu, she did not know I knew, as I could hear her voice and touch but then my dreams got even more scarier for me.

I could see a line of people trying to save me and give me their kidney and I felt I was getting cremated.  scary thoughts kept coming and going. I was alone fighting alone. Then there was another patient next to me in ICU – his partner gave holy water from the church to my mum, said this will help him. she put it under my bed. few hours I started to move my hand, she told my mum your son reacted. He will be fine, even I am praying to Jesus. That’s when we realise god is 1.

 

it’s around 5th July I think I said to god I give up. I leave it now in your hands to bring me back, my only focus went on my guru, then I was calling out gurudom loudly. I was told after 20 mins no stop calling him. The body felt like coming back and my BP was going back to normal. but I still could not wake up or see anyone.

They decided to now bring me back through medication, they said around 8 am he we will wake up. Before my wife or family got to me, I was already awake, because when they brought me back I pulled the pipe out, even I don’t know how.

as my hands were tied and my legs were tied. They were clearly worried as at times I was pulling things when I was coming and going.

 

I remember seeing Jalpa at first, I feared her, as I was already scared of my dreams. It took some time to believe. then the physio guy came, and I got very scared as he was the in my vision and doing wrong things to me, even though they were not doing wrong things to me.

This point I could not move, talk or Eat. I was totally weak and lost all confidence in me. they moved me out of the bed, so they could clean, but the physio saw I feared him, I remember pointing to Jalpa and moving my hand stay here with me. he then massaged my legs to build the trust, I had tears in my eyes all the time the nurses I felt was going to do something to me, I was so scared now and felt like a finished person.

 

when I woke up in ICU, totally out of it. I was around 32kg they reckon

 

then one doctor came to scan my liver to make sure that was okay, and that point the doctor could here very quietly, so she came close and I said people trying to kill me, now I look back I laugh I think they knew I was scared. the main nurse came, and I pointed to my nose as they had a drip there which is fine but also a pin stuck so I would not pull it out. she said long as you don’t pull it off we take it off. my gosh when she took that off it felt like a relief.  Still I was too scared.

then came my parents and my older sister. I had to touch their faces to make sure it was real and make sure they not going to do anything to me. now I knew I was wide awake and looking around.

I tried to write on a paper but was struggling but I knew I had to say something, I said to doctor when he came, that they all the staff trying to kill me, and he read it aloud, so I said with my hand gesture keep quiet. Doctor said to family its normal, but I think I may have upset the nurses in ICU. sorry again about this.

after few hours  the main nurse came and said to me we going to put CCTV up on the wall so we can see, I think then I relaxed and started to trust everyone, but then I realised what an idol I am, I saw the nurse who I had dedicated to me doing such a wonderful job cleaning my number 2 and cleaning my bottom and my face. and talking to me.

I then told my sister call her. I grabbed the 2 nurses hand and said I am sorry. they said it’s okay its normal.

After that I was in ice for 2 weeks, see family but tears still rolling down eyes, every sec as I talk to them, doctors at night trying to operate on me to do dialysis every night local injection and dialysis line goes in and try to do for few hours. could not sleep scared if I close my eyes I won’t wake up again.

 

Then I was moved to HDU –  I was put near the window of the area opposite the parliament and the Thames water, lovely view. then I heard the staff speak and I still did not know why I came to hospital, but those voices triggered my mind, I said to myself I have heard those voices before. my gosh they looked after me so well.

at this point I was no belief in myself felt this was my life now, wanting to go home and be normal again, I was wrong again, my legs could not move, I could talk a little but get tired, I could eat very little, but I was trying.

 

then it was my birthday 12th July. when I turned 39. never spent birthday in hospital but it was to be, the HDU team got me a cake, then so did Jalpa got me a Cake 2cakes, no way I can eat, here is me below in Hud for my birthday with cake.

No shave no haircut, not allowed! Jalpa smiling away but I tried , I just could barely even move. I could lick bit of cream by doctors’ orders and nothing more.

still it was nice, I know they were all trying to cheer me up and get me happy. I just could not smile anymore.

Toral came to seem on my birthday with a big balloon, I think that was amusing thank you.

 

At this point I was still in HDU, no dialysis main operation yet, just doing the standard dialysis and trying to keep my potassium down as it was important it went to down. I was here for 1 week, then the physio team try to help me walk and at this point I knew I had to now fight and push myself and go at least help them if they are trying to help me.

here I was trying to eat myself, as they try to get me to try myself see if could try, but slowly was doing, I think I spent more time just looking at the food.

 

 

As days past I was encouraging to do some walks, a little video below me trying. felt very odd first but I had to try and stay focus as much as I could.

 

Then I was moved to kings College Hospital, where I knew the Kidney people. Initially I thought I be here few days and then go home. I met one of the Doctors who use to look after me in clinic, at first, she could not recognise me as I had beard and glasses on.

She came in to the room of the ward and asked if I was Amit, then I said yes, it’s me and she remembered, this doctor in my life knows my history back to front and always been supportive, she made it very clear to all, that everything she will handle from here. one night she came to me and ad and said Amit, you need to decide what dialysis you will want now. I asked for Peritoneal Dialysis that I can do at home. I feared another operation but this time whilst I am awake, I said I cannot handle this stuff anymore, she said she will send the main lady down to speak to me who will do the operation on Friday 22nd July. Dr held my hand and she could see I lost all confidence in life.

That day is when things hit me hard that I am in trouble, first time in many weeks I broke down inside. I knew my life will change to certain aspect, I got worried as I was going to be made Redundant from my job, who then will give me a job, how will I do things millions of questions in my head, feeling heavily depressed, feeling I let my wife down and people around me down. Like I lost against life.

Then I spoke to Bapa who to me is always in my heart, it was Guru Purnima bhajan weekend, I was hurting inside I could not come and do live stream or even be there. There was discussion of me coming for  1 hour via Hospital but it was suggested not a good idea as i was going to have an operation in the  morning and there was no way I could move out of bed. That day before Bapa sang to me on the phone and gave me words of encouragement as tears flowed down my eyes. as I knew this was going to last guru Purnima without Bapa I felt it. I guess that was inner feeling.

after little while I accepted my fate. I was visited by the operation lady from the clinic, she explained to me that I be awake whilst they do this operation, as they want to do this as Emergency and if I had chosen General whilst an asleep it was long waiting queue, the risk would be too high. I said okay let’s do this she assured me that the needles I would feel when they give me Local anaesthetic. In the morning of the operation she came to see me and put lots of cream my stomach area to make it numb.  after 1 hour a guy came from the Clinic and soon as I saw him, he knows me, and I knew him, I was so glad he was going to be in the theatre. they asked how many people they will need to help me, I said 4.

 

I had 1 nurse next to me always, I had another nurse to hold me legs and the guy and the main lady who was going to operate on me.

In the theatre I had my guru photo behind as he was with me in my heart op. and all the way through. I had bhajans playing out of my phone.  I remember the big injection came along and my gosh I was scared a shell, crying but the nurse next to me did a wonderful job.

I felt no pain, nothing even they were bit surprised on the 3rd part as normally people feel but I did not feel a thing.

After they closed and stitch me up. I said can I go home now, they said not yet Amit.

I was proud of myself I let it all happen.

I was taken back to my ward bed. the guy next to me was nice person as well.

I was not allowed to move or get out of bed for next 24 hrs, I remember then the pain of the healing was horrible, then came along the dialysis machine and they connected me up and that’s how my journey of Dialysis started to me.

On the Weekend I had some family members who came to see me which was nice now I was in the ward I was handling it better.

They decided to take me outside on the wheel chair, to see if it would cheer me up but I had no self-esteem and confidence inside me, sitting on the chair feeling scared and worried, tired, drugged up with medications. Wanting to go home and feeling fed-up.

 

 

 

one of the days with parents outisde after operation

me messing around on my phone wanted to see what i look like.

 

Monday came I was told I could go home but must come back to the clinic next day for dialysis and every other day till they send me for training and learn and then I can do it at home.

I said fine I was happy to get home. Every other day I wake up at 5am could not sleep at night was having nightmare of ICU and feeling scared at night.

got the hospital come back at 4pm after dialysis. I had wheelchair and walking stick service to help me move around. as my legs had become weak. I had then a physio coming to my house every week to do exercise and small walking.

every week getting injected in my arm which I hated and hurt.

Time when by and I was going rehab and I shaved so that helped. when I tried to remove my beard I was so scared, of even the blade or someone even touching me with it, but I did manage in the end to do it myself.

I was then sent to 3 days course with Jalpa for training, and remember the supplies arriving at home so many boxes.  I had no energy to do anything Jalpa did all the training and learning and I just read the notes in the book.