Since having my surgery my recovery has been swift. The mental and emotional aspect however has not been quite so straight forward.
Recently I have decided that I should 'top up' my life insurance - Fortunately I have life cover but this will decrease as the term goes on (this was taken before I was diagnosed in fact before I even knew about PLD so this still stands).
Anyway I have since tried many companies and to my dismay it seems this it is going to be harder to obtain than I thought.
This of course is sending me into a panic and I really don't feel good, I'm worried that, God forbid something may happen to me who will help pay the mortgage! What if my children have been passed the PLD gene what will they do? I'd go through the surgery a hundred time if it meant my kids were unaffected - obviously it doesn't work that way I know.
|It all sounds a bit dramatic but I didn't know this condition would affect my life like this - maybe I've been naive.
Also I am, every time I looked in the mirror gripped by the fear that all these cysts will come back, I check myself out from several angles trying to judge whether I look bigger, more bloated, swollen than the day before. It's exhausting.
I could go on all day about my insecurities but I will update when I learn of any insurers out there who are happy to insure those with PLD - as I have asked around and at the moment most seem to be rather reluctant. :(
Tuesday, 10 July 2012
Friday, 3 February 2012
Weight
Ok so now that I have recovered from my operation I now need to tackle the issue of my weight.
So I recently started back on thew Weight watchers plan - I've done it several times in the past 5 years but this time, I'm going to do it. Why is this time different??
Well, I don't have 21lbs of cystic liver thwarting my attempts. Exercise is an absolute joy! I can do floor work(situps etc) with little problem and my pedometer is my new best friend.
My first Zumba session was great although I am still taking things easy, I wasn't worried that people may think I was about to give birth at anytime and I was even though I didn't know the steps right down the front, something I would never have dreamed of doing before.
And even though I am still over weight and need to lose at least 28lbs I am so proud of myself. I think my new slimline liver deserves a new slimline body!
So watch this space for me shaking ma shammie and dropping those dress sizes!
So I recently started back on thew Weight watchers plan - I've done it several times in the past 5 years but this time, I'm going to do it. Why is this time different??
Well, I don't have 21lbs of cystic liver thwarting my attempts. Exercise is an absolute joy! I can do floor work(situps etc) with little problem and my pedometer is my new best friend.
My first Zumba session was great although I am still taking things easy, I wasn't worried that people may think I was about to give birth at anytime and I was even though I didn't know the steps right down the front, something I would never have dreamed of doing before.
And even though I am still over weight and need to lose at least 28lbs I am so proud of myself. I think my new slimline liver deserves a new slimline body!
So watch this space for me shaking ma shammie and dropping those dress sizes!
Friday, 13 January 2012
Home
Getting home was great, getting comfortable was not . I had dreamed all week of getting to my own bed but in reality it wasn't so good.
I got my big V pillow out that I had used when pregnant and that did help slightly, because I was mainly lying on my back all the time I started to get these pains down the side of my legs, the best way for me to discribe it is as 'electric shocks' it would be agony! Especially in the middle of the night and as you can imagine with a huge wound having to sit up quickly was not very easy. I was still on 2 tramadol and 2 paracetamol.
Going up and down the stairs was quite hard too, mainly as I was pertrified I would fall as I am rather clumsy.
The only medical people I seen were the district nurses who took my staples out and came by every couple of days to run around my living room and go back out again - I know they are so busy and not their fault but it really was a 1 minute 30 second visit! Hope they got time off at Christmas!
I got my big V pillow out that I had used when pregnant and that did help slightly, because I was mainly lying on my back all the time I started to get these pains down the side of my legs, the best way for me to discribe it is as 'electric shocks' it would be agony! Especially in the middle of the night and as you can imagine with a huge wound having to sit up quickly was not very easy. I was still on 2 tramadol and 2 paracetamol.
Going up and down the stairs was quite hard too, mainly as I was pertrified I would fall as I am rather clumsy.
The only medical people I seen were the district nurses who took my staples out and came by every couple of days to run around my living room and go back out again - I know they are so busy and not their fault but it really was a 1 minute 30 second visit! Hope they got time off at Christmas!
Wednesday, 11 January 2012
New Dawn, New Me
I heard the anesthetist say my name asking if I could open my eyes, my first thought was wow she has lovely strawberry blonde curls but my first words were 'Do I have a flat tummy?' the anesthetist laughed and said 'Yes' I think this was indeed the point my recovery accelerated - No joke! My consultant then spoke to me but in all honesty I don't really remember what he said except that the right hand side of my liver and the middle part had been removed.
Before I was taken to the high dependency unit I was given a chest x-ray, I assume to check all was well and I was just feeling really tired, like totally wiped out. The nurses were coming and going taking my temperature, my blood pressure, checking the epidural.
The nurse came up and said my husband and parents were here and did I want to see them, I said yes. I saw my husband and Dad first both looking at me with a strange look then I saw my Mum who then disappeared behind the curtain - turned out she was crying. She later said I looked dead; I was so white and because I had shut my eyes there was no colour on me at all.
The nurse must have seen my mum upset as she quickly came over and reassured my parents and husband. She also told them I was doing as well as they hoped and that I had had a blood transfusion and they were about to give me another which they hoped would improve my colour.
I could barely keep my eyes open the rest of the day but my other senses were fully awake it was very strange. I just kept looking at my tummy and thinking wow! No more bloating, no more questions about when I was 'due' no more baggy clothes!
The following day I was a bit more alert and was watching the coming and goings in the ward, I was desperate to lie on my side as my back ached but it hurt too much. The last thing I felt was hungry but I did have a couple of licks of ice cream I just wanted to get well as soon as possible. I had a bed bath, I actually thought this would be the worst experience ever for me but it wasn't the nurses were very discreet and let me do what I could in the way of washing myself and I got the first look at my wound - impressive! There was slight concern over the amount of fluid that was being drained for me but it turned out this was fine - my consultant said they have 'washed me out thoroughly' so the amount was accounted for.
The medication I was on was obviously strong and I had the epidural in but through it all I still felt stiff (mainly in my back and ribs) and sore. Around lunchtime I was moved over to a chair where I sat rather uncomfortably for about an hour before projectile vomiting and being taken back to bed.
Day 3
One of the consultants came round with his 'gang' he said that if my stats remained positive then I would be moved to the next ward down.
By now I was more aware and able to shuffle up my bed a bit. The nurse asked how I was and I said I was feeling dirty and was desperate for a shower, she explained that as I had so many wires, machines and a catheter in then it wouldn't be possible but she helped me have a bed bath, and moved me to a chair. The nurse then gave a shower cap which had some magic stuff in it to 'dry' wash hair, she rubbed my head which felt like getting a head massage, the smell was a bit funny but it at least my hair looked and smelt better and I felt a little more human again.
I managed to sit up for another half hour.
Day 4
I was out of HDU and off to a new ward! As it was first thing they said I could now go for a shower!!! Yippee. With some help I walked tubes and all to the shower room, the nurse helped me sit in a seat and I had the most glorious shower EVER! I was a bit cautious around my wound but it was fine. Got my dressing changed when I got out, clean jammies and I was a new person. My friend came to visit at night along with my Mum (who had now recovered!) and they couldn't believe the difference in me. I have to say though when I saw myself in the mirror for the first time I and a fright myself I was so pale my eyes looked black.
Day 5
I had a gorgeous bath, the nurse helped me wash my hair which was lovely another mini head massage. My catheter came out in the morning which was great although I was worried about having an accident on the bed (didn't happen) and my drain came out in the afternoon - NOW that was an experience it felt like someone had pulled a foot of tubing out my tummy Oh yes that’s because they did! Weirdest sensation ever, not sore just blinking weird! They also removed my epidural.
Late afternoon I started feeling rather rubbish, they had changed my medication because the epidural had been removed and it did not feel good. My brother and Dad came up to visit, I was just eating my veg soup when they arrived but instead of saying 'hello' I was sick everywhere, my head was pounding and my tummy was in turmoil. Fortunately they knew straight away it was the meds so they changed it and by bedtime I was tired but ok.
Day 6
I was feeling good I managed to sleep on my side so I had a better rest, gave y back a rest my tailbone was throbbing! Medication seemed to be agreeing with me now. I even managed to read a few pages of my magazine - something I had not had the concentration to do since my operation. Had a shower all by myself no help still had to sit on chair but stayed in for ages having a good old soak. My wound was feeling itchy as was the hole from my drain although the dressing was needing changed as it had seeped a little.
My little princesses came to see me!!! Hubby and I had agreed they shouldn’t come up until I looked semi normal. My 4 year old was very strange around me she was asking my 'what’s my favourite colour' and 'Do I like Scooby doo' as if she was checking I was still her mum. My 1 year old had the cold so she really wasn't impressed by the hour drive to see me.
Day 7
Best day yet, feel great, stiff but great.
Consultant came round about 10am checked my stats and asked who I lived with. He then said 'you can go home if you like'. I liked!
My husband came and got me at 5pm by then my medication was ready and he wheeled me to the front door - you forget how lovely outdoors is especially when you've been cooped up for a week!
I was free...
Before I was taken to the high dependency unit I was given a chest x-ray, I assume to check all was well and I was just feeling really tired, like totally wiped out. The nurses were coming and going taking my temperature, my blood pressure, checking the epidural.
The nurse came up and said my husband and parents were here and did I want to see them, I said yes. I saw my husband and Dad first both looking at me with a strange look then I saw my Mum who then disappeared behind the curtain - turned out she was crying. She later said I looked dead; I was so white and because I had shut my eyes there was no colour on me at all.
The nurse must have seen my mum upset as she quickly came over and reassured my parents and husband. She also told them I was doing as well as they hoped and that I had had a blood transfusion and they were about to give me another which they hoped would improve my colour.
I could barely keep my eyes open the rest of the day but my other senses were fully awake it was very strange. I just kept looking at my tummy and thinking wow! No more bloating, no more questions about when I was 'due' no more baggy clothes!
The following day I was a bit more alert and was watching the coming and goings in the ward, I was desperate to lie on my side as my back ached but it hurt too much. The last thing I felt was hungry but I did have a couple of licks of ice cream I just wanted to get well as soon as possible. I had a bed bath, I actually thought this would be the worst experience ever for me but it wasn't the nurses were very discreet and let me do what I could in the way of washing myself and I got the first look at my wound - impressive! There was slight concern over the amount of fluid that was being drained for me but it turned out this was fine - my consultant said they have 'washed me out thoroughly' so the amount was accounted for.
The medication I was on was obviously strong and I had the epidural in but through it all I still felt stiff (mainly in my back and ribs) and sore. Around lunchtime I was moved over to a chair where I sat rather uncomfortably for about an hour before projectile vomiting and being taken back to bed.
Day 3
One of the consultants came round with his 'gang' he said that if my stats remained positive then I would be moved to the next ward down.
By now I was more aware and able to shuffle up my bed a bit. The nurse asked how I was and I said I was feeling dirty and was desperate for a shower, she explained that as I had so many wires, machines and a catheter in then it wouldn't be possible but she helped me have a bed bath, and moved me to a chair. The nurse then gave a shower cap which had some magic stuff in it to 'dry' wash hair, she rubbed my head which felt like getting a head massage, the smell was a bit funny but it at least my hair looked and smelt better and I felt a little more human again.
I managed to sit up for another half hour.
Day 4
I was out of HDU and off to a new ward! As it was first thing they said I could now go for a shower!!! Yippee. With some help I walked tubes and all to the shower room, the nurse helped me sit in a seat and I had the most glorious shower EVER! I was a bit cautious around my wound but it was fine. Got my dressing changed when I got out, clean jammies and I was a new person. My friend came to visit at night along with my Mum (who had now recovered!) and they couldn't believe the difference in me. I have to say though when I saw myself in the mirror for the first time I and a fright myself I was so pale my eyes looked black.
Day 5
I had a gorgeous bath, the nurse helped me wash my hair which was lovely another mini head massage. My catheter came out in the morning which was great although I was worried about having an accident on the bed (didn't happen) and my drain came out in the afternoon - NOW that was an experience it felt like someone had pulled a foot of tubing out my tummy Oh yes that’s because they did! Weirdest sensation ever, not sore just blinking weird! They also removed my epidural.
Late afternoon I started feeling rather rubbish, they had changed my medication because the epidural had been removed and it did not feel good. My brother and Dad came up to visit, I was just eating my veg soup when they arrived but instead of saying 'hello' I was sick everywhere, my head was pounding and my tummy was in turmoil. Fortunately they knew straight away it was the meds so they changed it and by bedtime I was tired but ok.
Day 6
I was feeling good I managed to sleep on my side so I had a better rest, gave y back a rest my tailbone was throbbing! Medication seemed to be agreeing with me now. I even managed to read a few pages of my magazine - something I had not had the concentration to do since my operation. Had a shower all by myself no help still had to sit on chair but stayed in for ages having a good old soak. My wound was feeling itchy as was the hole from my drain although the dressing was needing changed as it had seeped a little.
My little princesses came to see me!!! Hubby and I had agreed they shouldn’t come up until I looked semi normal. My 4 year old was very strange around me she was asking my 'what’s my favourite colour' and 'Do I like Scooby doo' as if she was checking I was still her mum. My 1 year old had the cold so she really wasn't impressed by the hour drive to see me.
Day 7
Best day yet, feel great, stiff but great.
Consultant came round about 10am checked my stats and asked who I lived with. He then said 'you can go home if you like'. I liked!
My husband came and got me at 5pm by then my medication was ready and he wheeled me to the front door - you forget how lovely outdoors is especially when you've been cooped up for a week!
I was free...
Monday, 9 January 2012
Surgery Day
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 minutes when the anethesist called my name to discuss the epidural, he mentioned at this stage that I may not be taken as 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 anesthesist 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 bloods back we headed to 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 daughters names and saying how great they were.
I think the anethesist 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....
I waited only a few minutes when the anethesist called my name to discuss the epidural, he mentioned at this stage that I may not be taken as 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 anesthesist 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 bloods back we headed to 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 daughters names and saying how great they were.
I think the anethesist 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....
Back at work
First day back at work. 10 weeks off. Sigh, I had to do it eventually, if I had to listen to every twinge and pain I have then I would probably never get back in the swing of things.
I'm feeling good. My ribcage and neck are still cracking away and feeling a bit tight as if they are out of sinc but as my consultant said at my check up on the 6th December 'I had my head and shoulders in there' (eeeekkk) so I think I'm doing well!
I haven't wrote in this blog for a while mainly because 2 young children don't make good company when your trying to recall information and acurately type it up! So my next blogs are going to go back to the day of my surgery and my hospital recovery.
Actually on the latter I have to say that I had a wonderful experience at the Royal Infirmary of Edinburgh. The nurses were great the consultants were approachable and I felt like a human being not just a passing 'body in a bed' and I will tell the hospital so - as so often they only hear about the negatives.
So now on course back to my liver resection experience.
I'm feeling good. My ribcage and neck are still cracking away and feeling a bit tight as if they are out of sinc but as my consultant said at my check up on the 6th December 'I had my head and shoulders in there' (eeeekkk) so I think I'm doing well!
I haven't wrote in this blog for a while mainly because 2 young children don't make good company when your trying to recall information and acurately type it up! So my next blogs are going to go back to the day of my surgery and my hospital recovery.
Actually on the latter I have to say that I had a wonderful experience at the Royal Infirmary of Edinburgh. The nurses were great the consultants were approachable and I felt like a human being not just a passing 'body in a bed' and I will tell the hospital so - as so often they only hear about the negatives.
So now on course back to my liver resection experience.
Monday, 7 November 2011
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.
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.
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