Lorraine

ADPLD I live in the UK and had a liver resection.

21st August 2007 my husband and I welcomed our first beautiful daughter in to the world, such a lovely time, we were delighted a happy, healthy, gorgeous pink bundle.

3 weeks later and motherhood was going well, although I noticed that my tummy wasn’t going down any and I mean not a tiny bit, I have never been slim but I knew even my jelly bean cravings throughout pregnancy would not leave me with a belly this size.

I made an appointment with my doctor, whilst in the waiting room a lady was sitting with her granddaughter she smiled over and said "Oh when are you due?". At the time it didn’t bother me too much as I had just had my daughter so I replied "Oh no I had my little girl 3 weeks ago" the lady was mortified and as it turned out she was the first of thousands to utter those 4 words ‘When are you due?’ asked of me over the next 4 years. My doctor even asked me when my baby was due when I went in to see him.
After setting him straight he then examined me and then thought my uterus had not contracted and sent me to the maternity ward at Wishaw General. The midwives there quickly assured me it was not my uterus and I was sent to a gastro ward. The doctors asked me if I had travelled abroad in the last 5 years. I had Gambia and Egypt were on my list, so they decided to check for hepatitis.
I stayed in hospital 2 days so I could get a scan, this was really hard as I had to leave my 3 week old baby at home, my husband was more than capable but this is when you want to extend this precious time with your new born by bonding.

I eventually got my scan and I was told "you have a Polycystic Liver" I said "What does that mean" and the sonographer then answered "ask you doctor", so rude I felt especially I had had to wait so long for the scan, away from my baby and having all sorts of things going through my mind such as cancer, hepatitis and other diseases unknown to me. I was sent home and told I would receive a letter from the hospital in due course.

From this point on I felt so self conscious, I hated seeing myself in the mirror, I cringed when people looked at me because I thought they were going to ask(and the usually did) when I was due.
I really was a very unhappy lady.

I attended hospital visits every 6 months and finally after 4 years my consultant in Edinburgh Royal Infirmary agreed he would try to deroof some of my cysts to help ease some of my discomfort (bloating, rib, back and tummy pain).
Whilst waiting on a surgery date I fell, this was another side effect I noticed of having this polycystic liver – my balance was terrible, I was always falling & tripping up, I had the bruises to prove it!
After this I though why wait any longer for this surgery so I made another appointment to see the consultant and he finally agreed he would perform an elective liver resection. Hurrah!!

20th October 2011 my husband and I drove the 35 miles to Edinburgh. I had to be there for 7:30am so it was cold and surprisingly busy on the roads. We made it with minutes to spare.

I waited only a few moments when the anesthetist called my name to discuss the epidural, he mentioned at this stage that I may not be taken as someone else having a transplant may be taking place that same morning. This then cast a doubt in me that my operation may not get done. I then spoke to my consultant he said all was well for the day ahead and asked if I had any questions, my mind of course went blank so that was that.

I then had to give blood and urine samples and was sent back to wait with my husband. Five minutes later I was asked to go and see another female anesthetist she had taken over the 'list' from the previous one and my surgery was not only going ahead today but in about 2 hours!! EEP! There was a potential issue with my blood as it seemed to have a mild clotting problem but this would only affect the epidural, as it turned out the second test was fine.

I had to say goodbye to my husband in the corridor, which was a bit hard as I'd hardly had the chance to update him on the tests etc. Even though I had been expecting this operation for 6 weeks I still felt rushed!

I was taken into a room with 2 chairs and some changing cubicles, I got changed into the theatre gown and the lovely pressure stockings they kindly provide. After waiting with a surgical nurse to get my notes and blood work back we headed to operating room theatre.

I was led into a small square room which had 3 busy people in it as I sat up on the bed they immediately started attaching sticky pads and wires to me. I also had a cannula into my hand and then the needle for the epidural - I had this done when I had both my daughters but I had been in the throes of contractions and did not feel it, this time I was more aware of the pressure on my spine although I hasten to add it didn't really hurt. I was however starting to feel panic rise in my throat and I started bubbling my daughter’s names and saying how great they were.

I think the anesthetist could sense my anxiousness as she then asked me to lie down and take deep breaths, she said she would give me something to relax me - it worked because the next thing I knew I was awake and my operation was complete....

The first 3 weeks after the op were tough but my pain was well managed and I only spent 6 days in hospital, Mentally I had prepared myself and that made this journey much easier to cope with, I knew the pain why I was in pain and I knew I would heal.

I am now 6 months post op and I can honestly say I feel wonderful, I look ‘normal’, I am going to the gym 5 days a week, I eat healthily and I enjoy running after my 2 beautiful children and my husband and I enjoy time together much more now that I am less self conscious – I want to go out for dinner, go to music gigs even donning a swim suit and go swimming! I even strike up conversations with people in shops or at the gym something I would never have done.

I am full of energy and vitality and not one person has asked me when I am due!

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Lorraines's Story
We are  sharing our experiences with PLD Diet, an adjunct diet to consider  trying to complement a physician's prescribed medical therapy. Think  about testing this only with your doctor's prior knowledge, who can  adjust it, according to your own uniqueness by adding to your current  treatment.

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