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October 31 2015 7 31 /10 /October /2015 19:53
New Lease of Life

Saturday night and stuck at home = great time to update my blog!!

Firstly I had the results back from my fine needle test and it was benign, never felt so relieved.

Although I didn't actually receive any results it was just mentioned in a passing comment in transplant clinic which I thought was very insensitive.

Bloods are stable although kidney function is really good. HB and magnesium had dropped slightly and I have been feeling very tired a lot.

No mention of the parathyroidectomy as yet but I think it will be brought up at my next clinic appointment in December.

Things are still being sorted for me to receive my drug infusion at home but it takes a while to sort it out apparently. The nurses do a wonderful job I must say even when understaffed so Im in no rush but it would help to free their time up.

Things are settling down at home and we are getting back into a routine now. I am trying to catch up on my studies which need to be completed by Christmas really. Only trouble is I fall asleep when reading due to my lethargy.

This year Jasmine was able to have a Halloween birthday party including a sleepover, the girls were good but by 2am I was shattered with the chatting. To think this wouldn't of been possible without my amazing donor - another reason to be grateful....I hope they are keeping well : )

My family have been great and it just reminds me how much I really love them.

Other things are also changing in my life which I wont go into detail with but to say I am happy, content and feel alive is an understatement....

Jasmine has just decided to donate her hair to help children with cancer have a wig.

I am very proud of her and her maturity. She has had to cope with so much in her life and yet she still puts others first. We both went for our flu jabs yesterday, Jaz was to have the nasal spray. When we got there we were told that due to me being immuno suppressed Jasmine would have to have the jab due to the nasal spray being a live vaccine. She was shaking in fear and cried after. She then said "Mummy I did this to protect you". I think its easy to forget what my amazing daughter has achieved, not having the most normal life with a poorly mummy yet she has never ever moaned to me about it. I feel so blessed!!

and on that note I will leave you.

Happy Halloween




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September 1 2015 3 01 /09 /September /2015 21:37
Getting my colour back
Getting my colour back

I am so sorry it has been so long since I have updated my blog.

Firstly Kevin is doing well, bloods are stable and I am keeping well.

My calcium levels are still too high and i have had to have tests to see if I need the operation which I have dreaded for so long.

Whilst carrying out the 6 hour test they found a lump on my thyroid and so I had to go for a fine needle aspiration. Basically they insert a small needed into the lump under ultrasound and draw out some of the fluid and then test it. Luckily they got a good sample in the first try and am waiting the results. 95% are clear and mine was looking good so fingers crossed.

My best friend went with me to support me and made a scary procedure more manageable.

My clinic appointments have now gone to every 3 months which is great news. My next appointment is next week when I think they will discuss the operation on my parathyroid.

Medically everything is going great guns but other parts of my life are quite disruptive at the moment.

Myself and Chris have now separated but I think it is best not to discuss this due to Chris feelings.

I will be grateful for all he has done but somehow I feel I am reaching another chapter in my life.

My studies were going ok but then the 7 week holiday hit and I have not been so focused. I will need to hit the books when the new term begins.

I have been discharged from the neurologist but the ophthalmologist now needs to see me every 6 months due to damage from high blood pressure which cannot be rectified

Anyway I will try to keep you updated.




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March 22 2015 1 22 /03 /March /2015 20:58
Ready for the Ball
Ready for the Ball

I have left it way too long to create an update.

As Kevin the kidney has reached his first official 1 year anniversary I thought this would be a great time to crack on with it.

My first Christmas with Chris and Jasmine with no dialysis was amazing, no watching what I was drinking or eating, no having to sit there feeling unwell and unable to play with Jasmine and her presents. We had Christmas day and boxing day at home and then we traveled to the In laws in Mablethorpe and spent the rest of Christmas and New year there with Chris' Family.

As we come into 2015 clinic appointments are staying at 6 week intervals which is fantastic and still going fortnightly for the Eculizumab infusion.

Just before Christmas I had been helping in school to see how I would be in a work environment but at the moment I am still not ready due to complications with my medication and so this is on the back burner again. I also resigned from my position on the patient congress due to the same problem.

I still manage some voluntary roles and am also studying from home which is helping to keep me mentally motivated even though I haven't the energy physically.

Over the past couple of months I have seen an ophthalmologist due to deterioration in my eyes. The problem I have cannot be corrected with glasses as there is a problem with the retina I have now been referred to a higher consultant to discuss further.

I have seen a neurologist due to the loss of temperature sensation in my hands and feet, constant nerve pain in my hands, arms, legs and feet plus daily headaches.

Although we believe the headaches are caused by the Eculizumab I had an MRI scan on Friday so should know the result in around 6-8 weeks.

I have been assigned to a 'headache nurse' who I see next week but not quite sure what that will do.

I have also been referred to a rheumatologist for the pain in my joints which I hope will help as some days I cannot hold a pen when it flares up.

Due to my calcium levels not reducing since the transplant I have been told I need to have a parathyroidectomy, so two weeks ago I went to Nucleur medicine and had the thyroid and parathyroid scanned. If all is ok with the positions of the glands then the op will go ahead. I have dreaded this op for years and was previously on medication but as I do not fit the criteria for it now the op is the only way forward.

Over the past few months my Blood pressure has slowly increased to the point where it could damage my kidney so I have been trying new medication with not much success. At present I have around 4kg of fluid on which means my trousers do not fit, my face and hands are swollen and my breathing is a little difficult due to the swelling in my stomach. Firstly I had a scan on Kevin to check he was working ok and the results came back good so I have started some different tablets this week and it seems to be working the only trouble is it can affect the kidney readings and therefore I have to be monitored closely.

As you can see with a lot of transplant patient the road is still not easy once you get that kidney. It is nothing compared to the horrendous journey on dialysis but there are a lot of people out there who cannot understand :

Why I do not work and look so well?

Why I go the hospital so much?

It has got the point now where I say I am fine but deep down I am not. I am still very tired, very irritable due the medication and in pain daily but as I have said it is a much better life than I had.

I am lucky that I have such an understanding family who are still there supporting me and some really good friends who have stuck by me.

I have managed some days out as a family and a lovely evening at Jo's dreams Ball - the charity which helps patients with CKD level 4 and 5 have a dream!!

Lets hope Kevin is still working so good this time next year and I still think about my donor and hope his family are enjoying life just as much with their new kidney too!

Anyway here is to a positive way forward and If I am very lucky maybe a holiday??




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November 13 2014 5 13 /11 /November /2014 22:40
Swollen legs from NKF
Swollen legs from NKF

I was meant to update my blog at 6 months but I have been so busy that it totally slipped my mind.

Clinic has now been moved to monthly which is great news.

I had to go back to the doctors about my ears but they finally prescribed me something and after a month both ears seemed to be fine.

Ophthalmology appointment has been moved to January so will see what they they say then (no pun intended).

Due to pain in my hands and feet and the fact I cannot tell the temperature when in water now I was referred to neurology.

I had a nerve conduction test today and the major nerves are fine but the smaller ones cannot be tested and therefore they could be causing me problems. I have another neurology appointment in February so we will see if anything can be done then.

We managed to go to the NKF event in Blackpool and I thoroughly enjoyed it.

Did a lot of walking that weekend and my ankles and legs really swelled up and took a few days to reduce. I didn't let this dampen my spirits though and took a lot of useful information away with me. The demonstration by famous chef Lawrence Keogh was brilliant and great for dialysis patients. It was also interesting listening to his life story with kidney disease as well.

We spent 6 days again at the In Laws and spent some quality time with my daughter as well. I still cannot get used to being able to go away without the need for dialysis and will always be eternally grateful to my donor.

I have had a few rough days here and there but nothing serious thankfully. As I am still in my first year of the transplant this is to be expected, no transplant is plain sailing and I am sure most patients will tell you that.

I am still trying to do my voluntary roles where I can but I had to cancel some dude to illness which is why I know I am not 100% ready for work as a boss would not be so understanding.

We have had a few family health issues as well but as a family we work through these and hopefully all will settle down in the near future.

My beautiful daughter just turned 7 and I cannot believe how quick time has flown. I can still remember the grueling dialysis sessions when pregnant but was worth every second.

We are planning on being away for Christmas and New Year and have worked my Eculizumab infusions to fit in. Just hope I can be well enough for it.

Anyway as you can see my health remains stable and hoping it stays that way.


Lisa xx

Having an Eculizumab infusion

Having an Eculizumab infusion

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August 8 2014 6 08 /08 /August /2014 17:41



So the 4 month mark has been and gone and my oh my can I see a change.

I have gone from attending clinic twice a week to once a week and my Eculizumab is fortnightly.

 Eventually If I remain stable my clinic appointments will be even less often, the Eculizumab infusions should always stay fortnightly for as long as the kidney lasts.

My clinic appointments don't last long it's more of the waiting to have my blood tests done that is most time consuming.

I seem to of settled into a routine now and life feels so much easier. - still weird not having to plan things around dialysis when you have done it for so long.

My blood levels have been up and down slightly with regards to the phosphate and magnesium but I think we have found a good balance now with the medication.


I don't seem to have any side effects from the Eculizumab but I do seem to get very hot for the first few days after the infusion especially.


Over the last few weeks my hearing and sight don't seem to be right so I have had them both checked out.

My eye test revealed my right eye had slightly deteriorated but not enough to warrant glasses (I could still just about make out the bottom line of the letters at the opticians).

It was more the feeling of focus in general which I find hard to describe. It's not cloudy or blurry but seems an effort to concentrate on everything like I am tired for example. The opticians have referred me back to my GP who is now checking with my eye specialist if he needs to see me to check on my previous scarring behind the eyes.

I also went and had my ears checked and apparently I have what is known as a vacuum within the ear and it is sort of sucking the ear drum in. Decongestants are normally used but I am not allowed them due to my medication. I now have to do an exercise with them 4-5 times a day and in around 7 weeks it should of cleared up.




Last week we went and stayed at the In Laws for 6 days and it was brilliant.

Being able to spend time with family by the sea, eating and drinking what I want with no dialysis.

I still had to have afternoon sleeps and take it easy as my ankles are still swelling but the freedom I experienced was perfect.

We all had so much fun and throughout I just kept thanking my donor in my head. The hospital has confirmed it was a man which I have always said I thought it was.


Now as long as I stay stable we are hoping to go away in September/October for a mini holiday.


We have lots coming up as well. Another stay at the In laws, a weekend at the National Kidney Federation (NKF) AGM which I am hoping I can enjoy more this year as last year I was a guest speaker.

Plus a weekend away next year.


Anyway that's all from me for now







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August 8 2014 6 08 /08 /August /2014 17:38

It's now 9 weeks post transplant and I think I have felt every emotion possible.

Out of these 9 weeks I have spent more time in hospital than out and I just feel so frustrated.

I went to normal clinic to see the consultant and wasn't feeling fantastic but nothing to worry about. After speaking to the doctor and having bloods taken I made my way back to the waiting area where Chris was waiting for me. On the way I felt very sick and lightheaded and the next thing I knew someone was dragging me into a chair. I remember  trying to struggle as they wanted me to sit up but I knew I needed to lie down. My blood pressure dropped too low and I passed out. I woke several minutes later in a chair surrounded by doctors and nurses. Obviously from this they decided they would get me a bed on a ward to keep an eye on me - an easier task than you would think. I had to wait in a room till around 5pm before a bed became available. My BP was unstable and some of my electrolytes were too low so they were going to try some medication to help.

I ended up having so many cannulas in that they started to struggle to get access and I ended up having a central line in my neck. This worked well but after a week it needed to come out for risk of infection. They tried to insert another central line but after three attempts no such luck and they went for a groin line instead. This was much more painful than previous groin lines and still 2 months later my leg hurts. For a while I was on three drips, potassium, phosphate and Magnesium.  I hate the Magnesium it makes me feel so ill.

After 3 weeks I was finally allowed home. I started driving which felt brilliant and so much easier as I could go to appointments without Chris having to do the trek with me. On my first appointment to Birmingham on my own I started to feel ill on the way and by the time I got there I felt terrible. I told the doctor and because I had a raging temp they decided to keep me in  - not so good news for Chris as he had to catch a train to get to me as I had the car!.

This resulted in another week on the ward sorting out electrolytes again and getting me stable.


Once home they had decided it was now time to hand me over to Stoke, I can't explain how good it felt only to be 14 miles away from the hospital  under one consultant and not seeing several and getting different opinions.


Since back at stoke I have been going twice a week, once for bloods and the other for clinic and bloods. I have had my first dose of Eculizumab at Stoke which went really well and efficiently.


Anyway will keep you posted over the next few weeks




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April 3 2014 5 03 /04 /April /2014 13:40

So its Thursday 20th March and I have just rang  the Queen Elizabeth (QE) hospital in Birmingham to check they have a bed to make my way down.

They have told me to come straight down and go to the dialysis ward, so far so good.

Traffic isn't too bad and we get there for just after ten which is perfect as I am not expected to dialyse till about 1pm and then have the Eculizumab ( the wonder drug we have been fighting for, for so long) at around tea time.

As we make our way to the bed I have been given on the dialysis ward they now inform me I'm going straight on the machine. I explained that I hadn't put the emla cream on my arm yet to which I am told by the ward sister I am late already and I should of been here at ten and she has another patient after me. I explained I wouldn't be able to needle myself without the numbing cream but she had no sympathy plus I was told I wouldn't be dialysing till 1pm and therefore I wasn't late as the changes were not passed onto me. She just walked off.

Luckily the nurse was lovely and told me to put the cream on quickly and she just wandered around doing some jobs, she could see I was distressed and anxious about everything.

By the time I got my needles in it was past 11am anyway. The dialysis did not go well and I felt quite rough afterwards but they let me come off a little early.

I made my way down to the transplant ward where they were quite rude on reception and I was told to wait in the dayroom as a bed was not available at the time.

I was beginning to feel really upset and stressed now, so far I felt left in the dark and no friendly faces either. I'm just glad I had my husband with me.

Then Michelle, one of the transplant co-ordinators came to see me and explained about all the miscommunication, she couldn't apologise enough and immediately I started to feel better.

I finally got a bed in a side room with a lovely view over Birmingham.  I had my first infusion of the drug and luckily it went through without any reactions or side effects.

Friday 21st March

I didn't get much sleep due to being a bag of nerves but now was the big day.

Chris came in early and I started to get prepped for surgery.

I remember being wheeled to theatre, saying a quick goodbye to Chris and I felt so emotional he quickly left my side and I could tell he was scared.

In the anaesthetic room we went through the usual checks but the cannula wouldn't work so a new one was put in.

I remember he flushed it to check it worked then rather than tell me he was going to put me to sleep or count I just remember someone saying Lisa, Lisa, the room span and then what felt like a black wall appeared into little boxes and slammed right into my face then I was out cold.


I woke up in my room I think, as usual I was on morphine and nothing made sense I just knew I was alive and weeing!!!!!!!

I remember Chris telling me to shut up and sleep as I wasn't making sense - well that is nothing new I'm like that without morphine...

I was uncomfortable and just in and out of sleep, I think I had a slice of bread and butter but my throat was so sore from the tube they put down I couldn't swallow.

The next day I passed 12 litres of urine I was so pleased.

 Each day I got better but like my last transplant I got constipated and the pain from that was worse than the actual transplant. After a couple of days things began to settle and I was determined I would be home for mother's day.

I came off the morphine within 4 days and just took paracetamol, I have such a low pain threshold I was surprised by my own strength and willpower.

The staff were brilliant on the ward and some went really out of their way to make me comfortable, their bedside manner was outstanding.

I made some lovely friends whilst in their especially one who had also had a kidney transplant two days after mine. She also had a baby on dialysis and it seemed we were so alike it was nice to go through the same experiences together.

It was really weird though as we both named out kidneys Kevin on the same night without the other one knowing!


I finally got discharged on the Friday a week later. I was going to be home for mother's day after all.


I am healing well, I have been back to the QE to keep a close on my bloods and to have my drug infusion as well.

At the moment I am retaining some fluid in my ankles and in my stomach around 4-5 litres but they are hoping this will sort itself out.

There are currently no signs of the disease returning but we are a long way off being safe just yet, we take each day as it comes.

I have to go back in two weeks to have a stent taken out which I am dreading as I hate local anaesthetics but they have said I can be sedated.


I have been told the donor is doing well which was important to me.

I often pray for them for what they did is giving me another shot at life and happiness and I will never forget this selfless act.





Coming through the other end!!
Coming through the other end!!
Coming through the other end!!
Coming through the other end!!
Coming through the other end!!
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March 11 2014 3 11 /03 /March /2014 21:03

Well tomorrow I go to Birmingham for my clerking ready for the transplant. I finally got my date for the 21st March. I will have my bloods taken and meet the surgeon and they have offered to show me around the ward where I will be going. I will start off on high dependency at first and then move on to a normal ward after I start to get better.

To think the transplant is next week makes my stomach flutter and I feel all sick.

Although it is exciting to think of all the things I will be able to do if all goes well, I also have so many anxieties as well.


My mind keeps wandering and I go into a trance like state just feeling so scared. I'm scared of not coming back and seeing my beautiful daughters smile again, I'm scared of not having a big hug off my husband.

There is so much I am scared of losing but I know I have to take this chance as if I don't dialysis will eventually kill me and I will lose it all anyway.


My mood is up one minute and down the next, I don't know whether I'm coming or going and I hate feeling this way.

I am trying my best to remain positive but I can't help those niggles in my head!


So as I said tomorrow I am in Birmingham and again the day after and then that's it till I go in.  My daughter has her ballet exam on Saturday so I am pleased I will be here to take her to that.

Unfortunately I will most likely be in for mother's day but you never know someone may bring jasmine to see me in hospital! It would be the first time I hadn't seen my daughter on mother's day.


Most of my suitcase is packed and plenty of lists done for the in laws for when they come.


So this will be my last post before the transplant if all goes ahead.....



Love Lisa


Living Life!!

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February 7 2014 6 07 /02 /February /2014 19:30

Hello Everyone..

So I said I would start 2014 as  positive as possible and this is definitely the way forward so much as happened in such a short space of time already.


Last year I decided to start a project about making a mini movie about patients on dialysis who had either had a transplant, needed a transplant or unfortunately passed away before they had a chance.

After all the misleading publicity in the media lately about dialysis patients and transplants I wanted to put the record straight about what we as patients actually go through.

Then disaster struck I lost the work I did and felt very disheartened and gave up on it.

When 2014 began along with my new positive attitude I decided to give it another go and would link it to World kidney day in March.

I posted it on you tube and I am so overwhelmed by the feedback it has gotten already.

Due to this I have become a World Kidney day Champion. This means I have promised by making this video and sharing it on social media sites and also I plan to run a stall at a health information day I am involved in to promote organ donation, more people will be made aware of kidney awareness.


On the 17th Jan I was officially accepted onto the transplant waiting list -YIPPEEE after all these years of waiting it finally happened.

So that nervous feeling now waiting for the phone to ring. Then I was on dialysis on the 23rd Jan, (just 6 days later) and the phone rings, Yes you guessed it , it was Birmingham hospital to say I had matched to an altruistic donor.

Now for those who are not aware of waiting times this is incredibly quick. Average waiting time is 3-4 years but can be 1 day to 20 years.  They had obviously taken into account my "waiting time" of 8 years which is how long I should of been on the list had I not had a rare genetic disease.

I was speechless and so emotional but excited as well.


I have had an up to date heart echo and this has come back as good and today I went to QE in Birmingham to see a physician to talk about a plan for going in.

As I have a rare disease I needed to discuss when to start taking the drug I need for the kidney not to be attacked again like last time.

The meeting went well and we are hoping for a date in mid- end of March.

We agreed we would like to have a look around the ward next time we went and also to speak to a psychologist as with transplantation comes a lot of mixed emotions.


So in  just over a month so much has happened already.

I will keep you all informed of the progress and I will attach a link of the World kidney day video I made as well.


Thanks for catching up









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January 5 2014 1 05 /01 /January /2014 22:03

Well another year has passed and I'm still here!

Managed to visit in the In laws for a couple of days, had a quiet Christmas and even managed a couple of days away for the New Year.

One of the things I do not look forward too is New Years eve so this year we decided to just get away and it was the best thing I have ever done. Being by the sea and having no stress was bliss, although this did come with over indulgence equaling high potassium.

When I got home my dialysis machine decided to have a fault which meant going to the hospital for dialysis which was great that they fitted me in last minute.


This year my plan is too stay positive and for anything that turns negative try and see pass it.

Ever since my new outlook I feel so much better and believe it's good for my health and family.


Near the end of last year I went through some personal experiences and although I have always said I speak the truth on here I will refrain from going into details due to causing more upset for meand this will not change anything that happened and cannot change the ways some people behave.


I have new people in my life and a new outlook. These friends are positive, supportive and understand me and I feel this is new chapter in my life for the good.


I am just waiting for the letter now to confirm I am on the transplant list and then it's the waiting game, so fingers crossed.


Anyway wishing you a peaceful and healthy New Year





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  • : livelifelisa
  • : I decided to write a blog about my life on dialysis. Originally there was no option of a transplant due to a rare genetic disease but all this changed. I want people to try and understand what myself and my family go through, not just the bad times but the good as well. Hope you enjoy my story!!
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