THREE YEARS ON

THE FRIEND THAT WAS LEFT

BEHIND

 

KIDNEY OUT 6/10/11

It has been a day of reflection today 6/10/14 and a day of feeling very proud 3 years on from my 1st Operation and here I AM a RENAL WARRIOR with a year of even more positives.

When I went into hospital pre op on the 5th October, 2011, the transplant work up I had gone through with my sister in 2010 was taking me to the operating table to have BOTH my enlarged POLYCYSTIC Kidneys removed. This to make room for my ‘new’ kidney, which my sister had offered to donate early 2012. This would be after a few months on dialysis, that was the plan??

So this night, the 5th I went through observations, met various doctors, consultant, anaesthetist, nurses, my Surgeon examined me and immediately, this chicken like woman led on the table, with a very swollen tummy, stick thin legs, underweight, organs groaning under the lack of room….was worried!
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ASCITES & ME..Pregnant Look

My Surgeon, my life saver’s face said it and I respected his honesty, but at this late stage, he said ‘ Lorraine I do not feel it would be right for me to remove 2 kidneys’.

Looking at my body, pregnant like, lack of room, he was honest saying that he didn’t know for sure till they got inside, like a car…different engine..that with having some ‘ascites’ {fluid} filling spaces and my underweight body, it was highly unlikely. (I was to find out just how much that fluid changed my life forever.)

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WHAT IFS

Being given this uncertainty the night before, I felt anxious, depressed and having my three adult children around me on the morning of the operation too. This knowledge was breaking my heart, more the fact I was leaving my children, my dog going into what I felt was a more risky operation than I’d been led to believe.

Yes positive as I was years leading up to this moment, you are never prepared for that feeling of WHAT IF I don’t survive this. It’s what they tell you, understandably very much an unknown of what would be found, how my organs would be, all squashed up, still a very BIG risk and my overall complications. BUT my WILL had been done, that’s all I kept thinking and told my three I loved them and more. Plus my faith and my Dad watching over me.
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RENAL FAILURE & BODY CHANGES

BUT I had to go with this, living for years like I was pregnant, carrying extra weight with enlarged kidneys and liver, high BP, anaemia, lack of appetite, organs so fighting against each other, I had to hold my arm up after id eaten. I struggled getting upstairs, weary, lost my boobs, no jeans unless with braces, it was never not going to be anything else but kidneys being removed for me. I had life in me!!

Sadly, but life savingly I only had 1 kidney removed, as once they opened me up, 4 litres of fluid was gushing out, making it very difficult to retrieve even one kidney, however, it was a very good retrieval in my wonderful surgeons hands. They had to close me up still after few hours, took my nasty cyst covered kidney and disposed of, although I said they could use or kick across the theatre.
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LIFE ON THE EDGE

I almost died on the operating table this day 3 years ago, 6/10/11, still had what turned out to be my FRIEND, my left native kidney, which they could not risk my life retrieving, but he became very much a part of my surviving DIALYSIS. He still had some function, so I was still able to pass water and therefore, I did not have a restriction on my fluid. If my kidneys had both been removed, I would have been restricted to about 500 mls daily !! which is a struggle for Dialysis Patients Iv left behind still, but unbelievably you can, you have no choice!
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It became apparent in recovery that things were not just right, I was very poorly, but remember the wonderful feeling of coming round after the operation and saying… I’m Alive!!

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WHAT HAPPENED?

The first week was a week of pain like Iv never known starting my first session on dialysis primarily, not from my operation incision, frustration, as I was drugged up and away with the fairies according to my children for two weeks.
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I cannot remember too much, except my legs were 3 times the size and my whole body was overloaded with fluid. Why?

Well that took my daughter,who is a nurse and lots of surgeons and consultants standing around my bed daily, test after test trying to work out what the hell had happened to me. They knew the ascites had big part to play and the POLYCYSTIC Liver came into focus and fortunately I was in good hands there with an amazing Liver specialist, who worked with the renal guys too on this for two weeks.

Long stay: 5.5 weeks, lots of fluid that was going very slowly, lots of procedures, lots of venting, my fistula access compromised, being bag lady. BUT I still managed to keep upbeat, two weeks post op, my voice returned and our ward was noisy and friendly despite the suffering on there. As PATIENTS we have to laugh at ourselves.

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FACING DEATH ASIDE LIFE

On the day of my Grandsons christening, I was still in hospital and that day is still with me. My Blood Pressure dropped and if it was not for a friend visiting, I could well have died. He saved my life, but what ensued was like a Star Wars scene and that throwing me back, rushing me up to dialysis unit, put upside down, lots of faces and voice, all to save my life and did, this has stayed with me.

When you get asked …do you want us to ring your children..phew..well I said NO, they will be in church now and I cannot spoil their day. Broke my heart, but just fought, listened and I came round. And SURVIVED.
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More to come in a other Blog, but it’s good to reflect, it shows how far you have come.

Be inspired in keeping positive in the darkest of times. Believe in you, put trust in your surgeons, who want to make things better for you. That Is their passion saving lives and what I felt was passion.

My Surgeon was extremely worried about me and come to see me every day for the first week and on his way home and sat with me through tears and worries.

 

PATIENT EMPOWERMENT

How my Surgeon was with me, anyone having an operation should be experiencing and if you are not, NOW that Is a different story. ONE that is topic of conversation in the RENAL and DIALYSIS world. Consistency and breakdown in some patient care. I urge all Patients to EMPOWER, TAKE CONTROL, if not yourself, your family or friends. We have a voice, we have to use it more.

Talking about VOICES, through my personal campaign this year in giving something back, I set myself a GOAL and that was to be on a PLATFORM voicing about something that happened to me during this 1st operation 3 years ago. I have done much about this and this will be my next BLOG. I have not talked about it, as it was my PERSONAL psychological nightmare and kept within, to present at the conference I achieved acceptance at 4 months into my campaign, so BOOTS on……..

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On the 11/10/14 I am a Patient Speaker at the National Kidney Federation UK 2014 Conference, talking about TAKING CONTROL, to be held at the Hilton Hotel, Blackpool. Please find me in this Conference Programme below.

http://booking.kidney.org.uk/Conference%20Leaflet_v1.6%20Printer.pdf

 

KEEP ON YOUR PATH

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Purple Chick

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2 thoughts on “THREE YEARS ON

  1. Chronic illness is a solo journey for to many of us for far to long. No matter how loving or how close those we love are and no matter if they have been there every second, they still don’t truly understand what happens to us as a person. Only those who have been or are there themselves knows the truth and I am glad to see that like me you put the truth out there, as our doctors never really do, to worried they scare us. Maybe someone should tell them that the internet is here and so is the growing truth, so keep it growing, we all need your words.

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    • Hello Pamela, you are right in your words. Behind the positives I do, which I do because it’s part of my make up, it is a lonely life at times, in the sense of no one, other than like minded patients, truly understands or can be expected to understands ME. That is a blog in itself!

      Patient Power is growing, what you do is as powerful and Patient Voices are on the increase,iv seen growing this year. There has certainly been an increase in many patients Iv supported and inspired on Renal Patient Support Groups, just empowering themselves more and voicing about their care. However, the patients I worry about are the groups that cannot voice, vulnerable, no support network.

      Lots of big asks from our NHS, I am prepared to collaberate and want to keep, but they are going to have to get up to speed with grass roots care. Social Media they are now recognising as a threat and useful in recognising, but lots of talk and no Action. We can only do our best.

      Nots giving up my BOOTS yet. Thankyou again. Xx

      Like

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