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
life of Dialysis 