Hege Igesund

Hege Igesund had kidney failure caused by diabetes. She received a kidney and pancreas transplant in 2008.

Diabetes
It all started when I was 15 years of age I became ill with appendicitis, then glandular fever and then diabetes, which was not totaly alien to me as my brother had been diagnosed diabetic 6 years earlier at the age of 13.
Was a tough time especially being 15 when all I wanted to do was be with my friends having fun and just be a teenager.
This is where the damage began........ test your blood, take your insulin, eat good food, dont forget you have to go to diabetic clinic.......these words haunted me all I wanted was to have fun, play football, hockey enjoy myself not think about serious things I was 15!!!

Teenage rebellion
I was body conscience and was afraid to gain weight all emotions were running around my head I kept my blood sugars constantly high as I did not take insulin as I was supposed to because I thought this way I will not get low and have to eat, ironic as it sounds now. I really believed that.

The years passed living this way at clinic appointments I would lie about my levels and seemed to get away with it not realising what damage I was doing to my body, first it affected the nerves in my feet losing some feeling first in the toes and as time passed half way up both feet, in my twenties my eyes started to suffer and by the time I was 30 required laser treatment in both eyes to stop regrowth of vessels which I have to tell you was not a very nice treatment to undergo and to go every few weeks it took up so much of precious time.
I had made things worse from age 18 to 23 going to parties getting drunk not eating properly suffering from hangovers constantly high blood sugars from the alcohol to then dropping and falling in to hypo attacks, taking a guess at my blood sugars and insulin dose.
Why did I find this so difficult? I can say that now but looking back honestly can not give you an answer.

Taking control
It had all caught up with me I was 24 always feeling tired I looked pale and unhealthy could barely finish a days work I felt moody and at times did not have patience for people, what was wrong with me?
That is when I woke up and took control of my condition but unfortunately the damage was already done only to disvover in 2005 when I went for routine check up at the diabetic clinic it was September just before my 33rd birhday.
There were the words 'your kidneys are leaking protein' it may not be too late the doctor said but there is a chance your kidneys will fail we must see you more often and keep check.......there it was the start of my sentence.

What does my future hold?  What will happen to me if they fail?  Will I get away with this?     
THE ANSWERS ARE CLEAR
              DIALYSIS                                     TRANSPLANT                                         NO

Living life to the full
I had always enjoyed to travel going on trips with friends two or three times per year I decided thats what I will do....travel because maybe I will not get the chance again so I quit my job sold my home and car and off I went first stop Australia although I was not completely free I had to get regular blood and urine tests and send them back home for doctors to check, things stayed stable for a while.
I went to the States. Canada, around parts of Europe, and Egypt was having a great time I felt like a free spirit I was finally happy and really had my diabetes down to a tee. I ended up in the canary islands enjoying the sun, surf and the stress free life but unfortunately the kidneys started to give up my last blood results showed I only had 50% function it was now the end of 2006.

Worsening illness
I was 34 with kidney failure. I had to return home to attend clinics once a month and soon I only had 30% function I was at my worst every day being sick, lacking energy and no appetite I was really suffering, the hypos occured almost every day to the point I was afraid to go anywhere in case one struck I was testing my blood nearly every hour I was so afraid and to think if I had only done this 4 or 5 times a day in the beginning and knew what insulin dose to take this could have been avoided.

Listing for transplant
I spent 2007 going to pre dialysis clinic in Aberdeen it was only a matter of time before I needed to start dialysis and there it was December 2007 at the clinic appointment my kidney function was 12% I was being put on the list for kidney and pancreas transplant it was surreal although I knew it was coming I was not sure how I felt. Christmas was bleak I was not in the humour, new year arrived and I was depressed and feeling very ill, then out of the blue Jan 15th 2008 I got that all important call  'Hello Hege its the transplant co-ordinator in Edinburgh we have a possible donor for you,  taxi has been ordered get ready to come to Edinburgh'  I went into automatic prepared myself and waited for the taxi, I called my family told them and started to text all my friends, it had all started to become real to me.
 I arrived there alone as my family could not be with me it was all quite scary but so much was going on I was kept quite busy with not too much time to think after a few hours the doctor came to tell me sorry the organs are no good you can go home.....I was gutted but deep down relieved I was not ready emotionally.
Almost one month later in Febuary the same again but organs could not be used, this time I felt disappointed, and again in March I was litterly 10 minutes at the hospital and they said no again.
This time I really felt prepared I had plenty practice I said to myself before I got there what will happen will happen and off I went back to Aberdeen quite content.

May 2008 my function was between 8 and 10% I was so depressed to think I had to have dialysis I had been so close three times for transplant and now had come to this I was ignorant and stubborn.
My options were peritoneal dialysis (pd) which is done at hospital initally then in the home and is done using a catheter in the stomach area which is put in by surgery under anaesthetic this appealed to me as doing at home instead of attending hospital so much would give me more freedom and is 30 minute exchanges 4 times per day and then through the night, or second option hemodialysis which is done using a fistula which is put in under local anaesthetic and is to give access into an entranceway into your bloodstream that lies beneath your skin, the access is usually in your arm but sometimes in the leg and allows blood to be removed and returned quickly hemo is done in hospital and can be for 4 to 5 hours a session depending on what you require.
Decision was made pd so I got my date for procedure few weeks later I had a catheter put in my stomach, instantly I hated it what had I done? I lasted 7 days and got an infection I became extremly ill and was taken to hospital and catheter was removed I had got peritonitis which is a serious disorder caused by  inflammation of the peritoneum.
What next was I ever going to get some good luck!
Next step was get the fistula put in and July it was done I had to wait 6 weeks before could start hemodialysis, I lasted 5 I was retaining too much fluid and could not walk very far,  my heart was starting to enlarge it was dangerous.
I felt my life had been taken away from me 5 hours 3 times for week how will this once free spirit cope?
Then it dawned on me....I can either let this beat me or use this time well is 15 hours each week I could do my studies time I otherwise would not have, be positive it is not the end of life and thats when I changed depression was gone that big black cloud had been lifted.

August I started dialysis I instantly felt better all that fluid drained away my  weight was coming down I even looked more like me, appetite and energy levels returned, I really was ok.
I had been attending the gym but always found it quite hard but once I started treatment I was going 5 or 6 times per week I loved it my insentive was I keep fit now I will get through my transplant better and this is what gave me the drive.
I became friends with the dialysis staff and it actually felt more like a social event got to know the other patiens we kept each other going and knowing the result after treatment I was happy to have I knew it made me feel better.

Christmas 2008 was a better one and new year came and I said this is it 2009 will be my year I had some great friends around me and said to them all 'lady luck she is coming for me I feel it'
My lucky day came Sunday 18th January 2009 it was 20:50 I was at home with my friend Jan the phone rang I answered and reply was 'Hi Hege its transplant co-ordinator in Edinburgh looks like we have donor for you taxi will be with you in about an hour get yourself ready'.
I was excited I really felt this was my time 4th time lucky so I packed a bag, called my dad, Stefano my closest friend and waited with  Jan for taxi to arrive I was perfectly calm and knew I was not coming home for a while all thoughts going through my head but the strongest one I wonder who is my donor who is the person going to give me 'the gift of life'.
Door bell rang and there stood a tall dark stranger 'Hello you must be the taxi driver come in I am Hege' in reply 'Hello I am Steve' we got my bags together all my medication and off we went, was an emotional goodbye to my friend but deep down I truely knew it was going to be ok.
Steve knew the reason why he was driving me to Edinburgh he told me had been a lucky charm for few people he had driven before me and I said well perhaps you will be mine also, we talked about everything on the journey as if we had known each other for long time was perfectly natural, driving out of the city we had approximately a two hour journey it was important to get there as soon as possible to start all the tests to ensure organs were a match and I was ready for the operation.
Unfortunately not noticing the speed, we were going a bit fast and blue lights were behind us 'oh no Steve said'  'dont worry let me do all the talking' I replied, the policeman approached the window and I leaned over and explained we had been nervous and I was on my way for transplant the officer gave us some advice and told Steve keep to the limit and get me there safe and then we were off on our way again, we had a laugh about it.

It was 1am we had arrived we exchanged telephone numbers and promised to get in touch when it was all over I had made a new friend we said goodbye and I went on my way to 206 the transplant ward where I had been three times already it was all familar and I was not afraid.
Doctors and nurses were coming and going I had some tests on my heart to check I was able to have operation, blood was taken, then I was to have what would be my last session of dialysis I was exhausted and managed to sleep during it.
7am arrived and the doctor came to tell me the organs are good the transplant will go ahead you are going to theatre at 10am and hearing those words I broke down it was really going to happen, the nurse brought me a phone so I could call home and tell my family a sleepy voice answered it was my dad I told him the great news it was a very emotional call  'we love you I will get there as soon as I can'.  
After three hours of crying and coming to terms with it all it was time to go new life was waiting for me I had to be brave.

I arrived to the preparation room I felt ok the staff were amazing we were making jokes I was laughing and crying at same time so many mixed emotionals were flooding through me but mostly was joy of knowing soon I would have my life back I felt positve and was determined to make it all better again, I was having epidural which is an injection into the small of your back using a curved hollow needle, the needle goes between the vertebrae of your back and into the space outside the coverings that surround your spinal cord. A fine tube is passed through the needle and the needle is removed, the tube is taped up your back and over the shoulder and the local anaesthetic is injected, this numbs the lower part of your abdomen, generally your legs and feet also go numb.
Leaning over the anaesthetist started to do the procedure 'arch your back he said try not to flinch' it felt a bit uncomfortable but it didnt last long soon I was lying down and my legs started to feel heavy and that was it next thing I was waking up in recovery room I looked up at the man in green standing next to me I said  'have you not started yet' he replied  'its all done you have had the transplant you are in recovery room it all went well'  it did not really register with me but I felt content.
After some time I was transferred to intensive care where I slept most of the time.
It was now Tuesday day 1 after operation I had no idea of time I was on alot of medication it was all new to me I felt so tired but was comfortable and the staff were very nice to me softly spoken and very friendly  I felt safe.
Next time I woke up was Wednesday and at the end of my bed my nurse for the day watching over me said 'Hello Hege I am James'  I replied 'Hi James I am hungry'  he laughed and said thats good I will get some food for you but first I will take out the tube from your nose which is going down in to your stomach, the purpose of the tube was to excrete any sickness anyway it was pain free and I didnt feel anything when he took it out only that little bit more normal.
I ate the food he brought for me I was feeling great, soon after there was my dad walking in looking a bit unsure but a huge smile on his face of course I had three drains in my stomach with bags hanging all over the place, a catheter, tubes in my neck and oxygen it must of looked quite scary however I was unaware of it all, I was so happy to see him but I did not last long and fell asleep.

That evening I was to be moved to HDU (high dependany unit) another step in the right direction I thought to myself, I arrived there and things started to move I was assesed and doctor said to stop epidural and switch to another pain killer which was a morphine pump unfortunatley through the night I became ill I took a bad reaction to the morphine made me feel very sick was awful I wanted to put my fingers down my throat to relieve it I really did not know what to do with myself.
Doctors came with the pain team discussed what was the next option, I was to be taken off the morphine and given oral pain killers and anti sickness tablets it seemed to settle quite quickly and the relief I can tell you was great although I did not feel to eat and I was exhausted.
Tomorrow is another day and lets face it was one bad day it is a small price to pay.
Friday arrived day four after operation I was feeling good and wanted to eat and shower both very good signs so I had breakfast then was taken by chair to the shower as my legs were still numb after epidural, was so nice to have a shower and wash my hair I felt human again although I have to say it took alot out of me I returned to the room and was very tired.
Listen to your body it needs to rest and heal the signs given are very clear.
Later that afternoon the nurse came to say he could take out epidural line, catheter and one of the drains, fantastic I thought is again another step in the right direction, so now I was left with only two drains this was when I saw for the first time my wounds I had two what looked liked smiles on my stomach one for kidney and one for pancreas, how appropriate I was smiling on my face inside my soul and also where my new organs had been placed I was so happy.

That evening my two friends Claudia and Diane came to see me I was overwhelmed it was a long drive for them but was perfect timing I was feeling more like myself apart from all the medication which was making me very drowsy we talked and then I fell asleep!
Saturday arrived I could feel my legs I asked if I could walk to the shower I need to get moving I was so determined to recover well and get back to normal and go to the next step ward 206 where it had all started so I did with the nurse by me apart from feeling dizzy I did it I was so proud of myself after I was sitting on the chair which was good to be out of bed and stretch I was getting stiff I was feeling a bit strange on the medication but nothing too untoward I think I was illusinating could see beautiful images of things in the creases of the curtains and chairs it was strange but actually quite amusing then coming through the door I saw my cousin Heidi and her boyfriend walking towards me  'I laughed to myself now I am seeing Heidi and Gavin thats funny they are in London...impossible! these drugs are good' well actually it was them they had driven all the way to see me I was overwhelmed was fantastic  'what you doing out of bed? you look great' Heidi was in shock she couldnt believe how well I was and that in itself encouraged me even more,  made me more determined.

She said she had to go to shop and would be back soon I had a little cry to myself out of happiness I was thinking myself better my positveness and determination was working.
Then another surprise my two other cousins Sarah and Lyndsey walked in was great to see them made me feel like I was not alone although having support with phone calls and text messages to be held and feel it was amazing, because of the nature of the unit was only allowed two people in at a time and they left and said I had two more visitor I was excited who was it?
My two aunties Sonja and Ingrid my mums sisters I burst into tears I was so happy.
I had a good day I had been told my kidney was working and had not required  insulin since the transplant I was no longer diabetic, all was going well and that evening off I went to ward 206, how refreshing there were windows can see outside that in itself was a healer.

In this ward I was able to take phone calls and my friends and dad were calling me I would get up and walk to take the calls it gave me exercise and hearing their voices was fantastic, cards started to arrive with messages of hope and proudness.
I was able to go in the shower alone, I was eating and drinking and with help of physiotherapists was walking up and down the corridors.
Everything was going well I had got lucky in my heart I was thinking of my donor but was not quite ready to know about them but something was tellng me it was a young man I am not sure why I had this strong feeling I just knew.
Next day doctors had arrived to see me I had taken a shower I was feeling great and looking very well even though I had not slept all night.  They were amazed at how well I was doing and one said I was extraordinary, that made me feel very proud and encouraged me even more he said was no reason why I could not be transferred to my local hospital mid week.
Monday was here one week after operation I was feeling another bit stronger and walking around by myself slowly as I was tender and very aware of my wounds, again I had not really slept perhaps an hour here and there and that is half the battle to healing ...sleep but was just not happening.
Later that day the last two drains came out and were replaced with small bags it felt great.
The lady next to me had been given a kidney transplant her second one we talked alot and helped each other with our experiences and she called me bionic woman due to the fact I was recovering so fast we had a laugh.
The staff were great very understanding and so helpful one particular nurse that was dealing with me told me that she would get me a 'pinny' as I had helped her with something and I could do more was funny and to laugh was great.
Laughter lifts the soul it brings great energy and positivity, my aunt once described laughter to me as 'internal jogging'.

Tuesday day 8 doctors round I was drying my hair after shower and they all arrived  'hello welcome to my salon' I said they laughed and made comment  'are you sure you have had major surgery?'  they could not believe my progress, I was examined and told I could go home the next day and attend local hospital as an out patient, how fantastic I thought this made me feel great.
On day 9 I was to be going home they told me I was a record breaker, has never happened before with this type of transplant I was so excited and called home my dad thought I was joking!
Next morning I got prepared early as ambulance was coming at 8am to take me home said my goodbyes and off I went with my big bag of medication and intruction booklet I was going home.
On the way I was texting everyone to tell them, I was so happy how things had gone, the journey passed quickly and we pulled up at my home and there was my dad standing waiting with a huge smile on his face it was wonderful.
We went inside and straight away I went to my nice cosy bed ahhhh my duvet was the best feeling and I slept like a baby.
My friend Jan who was with me when I got my call arrived after work and he gave me the biggest hug and we were happy to see each other I had missed him we are like two peas in a pod we talked and caught up with what was happening and then I had to sleep again I was so tired.
My friend Diane came to stay with me I felt safe and secure I was home now I really could recover in my own enviroment.

I had to attend the hospital ward 23 where I had previously gone for dialysis for check up and blood tests this is to see how things are going and to make sure the correct doses of medication are taken I was getting lots of hugs from the staff I had got to know so well all telling me how great I looked and how happy they were for me this made me feel great I reacted to the positveness of people around me it was all good energy.
My weight was getting back to normal I could see the shape of my face again after having been bloated with fluid for such a long time and each day I was getting stronger.
My friend Sooze who has been there from the start encouraging me to do the right thing always being honest and helping me out came to see me at home we were so excited to see each other and she could not believe her eyes I could see in her reaction words did not have to be spoken.
Taxi driver Steve came to visit me and took me to hospital for an appointment I feel like we are special friends and what a great story of how we met.
It is now day 25 after transplant my levels are pretty much normal I can eat anything I want and drink as much as I want which is all very strange after being on fluid and diet restrictions for so long, I no longer am a diabetic I feel fantastic, taking each day as it comes listening to my body and keeping that determination alive.
Six days after I got home I called transplant co ordinator in Edinburgh and asked about my donor I was right it was a young man I now had someone to thank I will forever be in his debt and promise to do everything in my power to help my new organs. he has given me a new lease of life is true to say 'THE GIFT OF LIFE'



To all my family and friends old and new and especially to my donor and his family I thank you all for keeping me strong and positive
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I hope this can give you or your loved one some inspiration and courage take each step at a time there is light at the end of it all
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