Day 18 of recovery

I am sleeping so much better now as I can lie on my side, weeks of lying solely on my back was taking it's toll, I was getting sharp pains down my legs and my bum and bottom of my back when I was getting up in the morning.
My wound is still partially covered and it nips, don't know if this is just because it's knitting together. My drain wound is looking a lot better, last week it was a bit gunky but it's really clean now.

I am finding I am taking my tablets every 4 hours, I figured whats the point of waiting to be sore when I can just manage it by taking them before I get too sore. The sides of my thighs are still a bit itchy but I think that is still the after effects of the epidural, I actually still have a numb patch at my knee from when I had my second daughter.

I find I still tire very easily, I seem to be able to manage about 10 minutes of activity then I need a sit down for half an hour.
The thing I miss the most just now is being able to pick up my baby, I can sit her on my knee if she's standing next to me but I can't lift her if I'm standing. It's hard seeing your baby put her arms out for a lift and not being able to do it.

Decisions

Four years down the line, I tried to lose weight, visualisations, reiki, positive thinking, counselling and loads more and I still had these enormous cysts in my tummy. I was going to Zumba classes which I enjoyed but it soon took it's toll on my back as it was like jumping around whilst 9 months pregnant. My back was goosed.

Ultimately surgery was I felt, the only answer. I went to see my surgeon in May 2011 and after me updating him on how I felt physically (constantly bloated, feeling like food was sitting in my throat, pain in my ribs, back ache, weight gain) he gave me 3 options, do nothing, liver resection or deroofing on cysts by keyhole surgery. At that point I opted for the latter, I was still in denial that a resection was what I needed.

I got home and spoke to my husband, parents and friends and they were all supportive of my choice. A couple of days later I went to see my GP about something unrelated to my PLD, as I was leaving she asked me if I had any update regarding my liver, I told her about the keyhole surgery and she said to me "why put yourself through that when unltimately down the line you'll need a resection anyway?" That basically changed my mind as I thought well actually your right.
I went home and emailed my consultant and asked for another meeting as I had now decided to go for the full resection.

Small World

I had been home from hospital a day when my mum told me of her friends friends who had a Polycystic Liver, my mum suggested I get in touch through facebook, at the time I thought yeah, maybe in  day or two.
As it turns out I was on facebook and came across a page called PLD Polycystic Liver Disease it's members are all people who have PLD and some have gone through surgery like me, and others are still waiting or just being diagnosed and looking for more information.
I decided that since I had came out the other side of a successful surgery I would put a message up just to show people there is hope.


I got some lovely messages back and some said they would be interested in following this blog - which was another encouraging factor for me to do this. Anyway one of the responders was this girl my mum had spoke of -Elaine.


On further messaging it turns out Elaine lives about 10 minutes from me, she had liver resection surgery 5 years ago on the same day as me, 20th October, by the same surgeon!! I just thought this was uncanny!
Needless to say I had a lot of questions for Elaine and she had a lot of encouragement for me, when I'm feeling a bit better I will definitely be asking to meet up with her.

Holistic Healing

I've always been interested in alternative healing such as acupuncture, Reiki, colour and crystal therapy etc and my husband and I have always enjoyed going to the body & soul fairs in Glasgow, they are full of great stalls and brimming with people positively promoting their businesses.

It was in April 2008 I completed my level 1 in Reiki, really just for personal use and on friends and family. I find it very soothing. In June 2011 I completed Level 2 Reiki so I am now at practitioner level.

I am currently studying past life regression and colour therapy although these have taken a bit of a backseat as I find concentration levels are low as I'm recovering from my surgery, hopefully I will get back on track.

I am also a huge fan of Dr David Hamilton, he is the author of 'It's the thought that counts' and several other successful books all of which I have. I have met him a few times and heard him speak at events and he is hugely inspirational and a fantastically positive speaker. His books have influenced my own healing immensely.
Wayne Dyer, Louise L Hay and Susan Jeffers are all other sources of great inspiration.

As for the support I have received from the Reiki shares I have attended and the wonderful like minded people I have met along the way have certainly kept me sane and helped me move on from the negativity I have had in my life.

Day 14 of recovery

In my wisdom I thought it would be good to go shopping and get a start on my Christmas shopping.
My Mum and Dad took me to East Kilbride and we hired out a wheelchair, which I hated the thought of.

We got to Boots and I wanted to have a wander myself so I got out the wheelchair and picked up a few pressies, very quickly though I became tired and sore and as my bag was too heavy to carry I just had my purse - but of course I had put my painkillers in my bag! So I was really panicking.
I made my purchases and almost dived in the wheelchair - we made friends.

Got another few things and then I was utterly desperate to get home. Poor Mum and Dad didn't know what to do for the best - I'm saying I'm ok when clearly by looking at my pale face I wasn't.

I feel like my recovery is going well but here today is a perfect example of my brain saying " Yay go for it" and my body saying "Get real!"

Looks like I will need to content myself with some online Christmas shopping for now.

The next step

My appointment came through for the first week in December to meet with a consultant in Wishaw General. When I went along it became apparent that my attendance there was so they could ‘tick’ a box, my consultant who I am sure is great in his own field lacked knowledge on my newly diagnosed condition and could only say to the questions I had "If that’s a concern I can find out for you" .

The information I did receive was this:- I have Polycystic Liver Disease, it is genetic and has most likely now became apparent in my outward physical appearance due to the additional hormones in my body during and following pregnancy. I was told that there were specialists in Edinburgh and that they would refer me on to them but not to expect this to happen anytime soon.

I went home feeling a bit empty and done a bit of research on the internet, there was a few pieces mainly in America  – one reason why I thought I would do my own blog to hopefully relate to those with this condition living closer to home.

Pictures on the net are a bit gross and it seems that surgery would be the way forward – personally I felt I was too young and this would not be an option for me.

In Recovery

I have started my blog very early on in my recovery from surgery so thought that rather than do it as a story, I would update as I go along so bear with me :)

I am currently 10 days into my liver resection recovery and I actually feel great, I have just had my 31 staples removed today by the district nurse and contrary to what others have told me -  it hurt! Not every staple but a good few! I kind of feel like my insides are going to spill out as I was sure they staples were holding me together!

I was at the Dr's to get my sick line and to try and sort out my medication, I am currently on Tramadol but it really makes me feel a bit jittery and light headed so I've been told to lower the dose and consider Cocodamol if side effects continue.

Now when I say I’m feeling great I mean considering what my body has been through, my tummy hurts and my back is throbbing mainly because I can’t sleep any other way than on my back, and my bowel movements (tmi!) are non existent and coming from someone who is normally very regular I am finding it extremely frustrating! Fortunately the Dr has given me a prescription for that too.

On the positive side I feel good about myself again, I actually like looking at myself in the mirror again – dramatic I know but PLD really affected my self esteem badly .  I’ve been trying all my clothes on that haven’t fitted for a long time and when I lie down I can see the telly without having to be propped up by 4 pillows. And no one has asked me when I am 'due' - 10 days that is a record!

I have most nights been giving myself Reiki too which I have no doubt in my mind been a great aid in my continuing recovery. I will elaborate on my holistic and therapeutic interests later in my blog as they have contributed largely to where I am today.

The adventure begins

21^st 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 Dr, 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?’ to me over the next 4 years.

My Dr 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 Drs asked me if I had travelled abroad in the last 5 years which I had and since Gambia and Egypt were on my list they decided to not rule out hepatitis.

I had to stay 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 be bonding with you newborn.

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 Dr", 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.

Incidentally When I was in hospital awaiting my scan my mum told me that she had had a dream about me in which I had lots of balloons in my tummy and we were trying to burst them. After my scan we laughed at how accurate my mum’s dream was and for me highlights perfectly a mother’s intuition.

Welcome

Welcome to my blog, which will contain my thoughts, emotions and observations through my recovery from my liver resection and beyond.

My hope is that my words can help, inspire or comfort those going through similar experiences. I also hope I can help people make informed choices about their Polycystic Liver Disease (PLD), and share my real life experiences in how PLD has affected me.

Please feel free to comment or ask any questions.