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

Hi

 

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

 

TTFN

 

Lisa

 

xxx

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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

 

 

TTFN

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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.

 

TTFN

 

XXXX

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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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

 

TTFN

 

XXXX

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November 7 2013 5 07 /11 /November /2013 00:39

As usual I have left it a while since my last blog.

 Anyway lets start with the news we have waited so long for. On the 11th September 2013 we finally got the news that patients who are on dialysis and are fit enough can have the drug Eculizumab funded...

Going back 9 years my world came crashing down when i found out I had this terrible disease and to be told there was no cure and that I faced a lifetime on dialysis seemed daunting.

Since this breakthrough and a lot of fighting by a lot people for aHUS sufferers the battle has finally been won for most of us.

I have passed all my tests for transplantation, completed all the forms and just waiting on one more vaccine then I will be ready to go live on the list.

Waiting for that kidney is simply a waiting game but i have waited this long i am sure i can wait a bit longer. 

It will be a nervous time every time that phone rings but it has to be done if i want to aim to get my life back.

Some people believe having a transplant will let you lead a normal life but I understand that this is far from it.

It is the better option than dialysis but it is by no means the end of it, you only have to speak to other transplanted patients to know there can be complications but stay positive and carry on.

 

After the long await of nocturnal it did not go so well. I have tried a few times and each time I cut the time short, had panic attacks and restless legs. I knew it was not going to be easy but this was just making me ill. I was moody and snappy and affecting my mental health. After discussing with my husband and my nurse we decided to stop it and go back to what suited me.

 

In October I was asked to be a guest speaker at the National Kidney Federations Annual Conference to make a ten minute presentation. I felt so honoured and actually enjoyed it even though it was nerve wracking. I took my husband and daughter with me for the weekend but unfortunatley Jasmine was poorly and so I spent quite a bit of time running betwwen the talks, a chemist and our room. The conference was fantastic and well worth going too although the menu for the gala dinner could of been looked into a little better as it wasn't very renal friendly.

 

I have been using meditation techniques recently to help relax me and i find 5 -10 mins a day really helps to focus and connect with my thoughts which has got be good for the body and mind.

 

We have decided on a quiet christmas and an even quieter New year. Hopefully no stress which should help me stay well.

Will keep you updated.

 

TTFN

XXXX

 

 

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August 4 2013 1 04 /08 /August /2013 23:36

Well the date finally arrived for my fistulagram and I was a little nervous to say the least even though I have had the procedure several times before. BP was extremely high and it didn't help matters that when I got to theatre my usual surgeon was not going to be doing the procedure which sent me into panic mode.

The nurse on duty though was amazing and arranged for my normal surgeon to come and do the procedure. I was so grateful and put at ease and have noticed at the hospital they are trying more and more to help the patient get what they want and need - have more of a say in their care and treatment.  Luckily the fistulagram showed that my arm was fine and that at this time a plasty was not necessary.

All the staff were amazing that day on all wards and I was home by 2pm....

 

Our holiday to Center Parcs was AMAZING!. I managed all weekend which for me was a great achievement and I didn't feel ill all weekend, someone was defiantly looking out for me that weekend.  Thanks to Jo's Dreams charity I now have some memories no one can ever take away.

 

We finally started our training for nocturnal haemo dialysis and I was dreading it.

The first week we trained on a new machine using online filtration, double needle which went really well. The second week was using single needle and the dreaded button hole cannula. I was amazed how well it went and how much better I felt.  It was hard getting used to sitting still for 5 hours but when I start the treatment at home I should be asleep. It will get some getting used to but the quality of life I will get will be so worth it. Chris did brilliant at learning the new machine and I am so proud of him.

We just have to wait for the new machine now next week and I can start nocturnal dialysis.

 

I just found out we need to have the house re-wired so we are going to be in a mess for a few weeks but at least my dialysis room doesn't need doing as it is quite new and the wiring is up to date.

 

The past few weeks I have felt so weak and it has been hard to lift my arms and legs like they have bricks tied to them. All bloods say I am fine but I just struggle even with the stairs.

Today has been even worse and my left leg has totally locked up. I will just have to keep an eye on things over the next week and take it from there, but you know me will take more than that to stop me!.

 

Anyway overall I feel quite good within myself and hope to get a couple of days away with jaz and Chris before half term ends.

 

 

With me no longer being in the loop about the drug Eculizumab the only information I have is that we are another step closer and to watch this space....

 

TTFN

XXX

 

Lisa

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July 1 2013 2 01 /07 /July /2013 22:18

The past few weeks have been quite agonising as my fistula has hurt like hell when needling. The dopla scan came back clear which was a huge relief but then I got a letter from the hospital telling me I had got to go in for a fistulogram/plasty.  This was a huge shock as I didn't know there was anything wrong, after speaking to a couple of people at the hospital I finally found out that the surgeon wanted to see my arm under X-ray as the dopla may not of shown a narrowing and didn't want to risk it. Whilst under X-ray if there was a narrowing they would go ahead and do the plasty (stretch the vein with a balloon).

The date has had to be re-arranged as we are away the date they originally gave and so now its rescheduled for the 17th July. At first I was very angry at not being told why I was going in for this procedure and just  receiving a letter with no explanation, this has now turned to relief as the other day it took me 1 and half hours to put my needles in.

For those who read my blog will know I speak my mind and I got so upset, the worst I have ever been. I threw my needles, I cried, I screamed, I actually gave up. I wanted to die, I have not felt like this in many many years but the thought of doing this day in day out just depressed me to the core. Luckily Chris was there to support me and eventually we got two needles in and I managed a very very painful dialysis session.

Now it's just a case of taking each session as it comes till the procedure and hope for the best.

 

Communication with the hospital has been very poor lately which is a shame as I thought it was improving. After my last stay in hospital I was supposed to be seen in clinic within 3-4 weeks it has been over two months now.

It has been quite stressful with certain things going on and I had not had time to get to the hospital to get some blood bottles so I have had no bloods taken for June either.

Previously when I needed my fragmin, Cinacalcet and blood bottles the hospital has said not to worry they would get a member of staff to drop off when they are in the area. I rang last week to say I needed them within two weeks and guess what - no one can come so I now have to squeeze going up to the hospital before I go away.

So yet again anger begins to seep in although I was warned that once you are a home haemo patient you do get forgotten about...not enough staff for the amount of patients wanting to go home....

For every negative there is a positive though I have been given a date for nocturnal finally only 8 months delayed..... so one less needle to use and I get a newer machine so let's focus on the positive hey!

 

Recently I came across a charity called Jo's dreams. It was set up by an amazing lady called Denise who's sister Jo passed away due to renal failure. Jo believed that every dialysis patient should have at least one time in their life where they can forget what they are going through and enjoy something so Denise set this charity up in her memory.

Denise was asking for worthy renal patients who deserved a treat and a very good friend of mine nominated me, I was touched and felt very undeserving.

They got round me by saying have a treat which would benefit Chris and jaz as well so they have arranged a lovely weekend at Center Parcs with spending money, which we have used to book activities whilst  we are there.

Jo's dreams were also holding a charity ball which me and Chris attended and it was such an amazing night, I laughed and cried and made new friends. Been such a long time since I had a night like that and even felt like a princess in my ball gown which a lovely friend lent me.

 

Over the past few weeks I have realised I have some amazing new friends in my life which mean so much to me already.

With having stress of the jinxed car we brought plus other things they have been there for me.

I have even started swimming thanks to the encouragement of them.. well that was until I started with this cough which I am now being treated for a chest infection, second lot of antibiotics, second steroid inhaler.

I have enjoyed a couple of nights out and am even part of a yummy mummies group at school - such a great group of gals!!

 

 

I have come to realise with my family and my close friends the world can keep throwing this crap at me but I'm throwing my positivity back at it.

COSMIC ORDERING is the way forward

 

TTFN

 

XXXX

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May 9 2013 5 09 /05 /May /2013 21:29

It has been a while since I last blogged but quite a lot has been going on and it has been difficult finding the time plus because I have felt under so much stress the blog probably would have been so negative anyway.

Firstly my role as a trustee for aHUSUK has come to an end. This decision was not taken lightly and after confiding in a few friends on what would be best for me they all agreed my resignation would be for the best.

I always state I will tell the truth on here but talking about my reasons for leaving would not achieve anything so if we just say the stress of all the work got to me I would say that is a sufficient answer.

I have kept my role as a patient congress member for North Staffs CCG and am also really enjoying my role within my surgery’s PPG.

 

I recently changed my medication due to the damming restless legs and due to the side effects it put me in hospital for a few days. I cannot remember the last time I felt so ill and really did not enjoy having a camera put down my throat!

Anyway I stopped the meds and the restless legs have come back with a vengeance so  after 3 nights of no sleep my consultant wanted me to just give them another go.

Took a tablet last night and the side effects kicked straight back in again…I will not be taking those stupid tablets again as I never want to feel like this again. Will just have to wait and see if they are willing to try some different medication.

 

The weather is starting to become a lot nicer now and is giving me chance to get in the garden which I believe helps to motivate me,     it also comes with its downfalls. When it is sunny and people are in their gardens enjoying a barbeque and I have to go on dialysis I tend to get grumpy and also when it gets warm I want to drink more and on a 1 litre fluid restriction I get even grumpier when I cant.

 

We had a car in October and ever since it has spent just as much time in the garage as on the road and the end it ended up costing £3000 to be repaired so there is this year’s holiday out of the window, we will just have to make do with a few day trips in our virtually new car ha ha!

 

Sarah started and completed her 22 mile super swim for aHUS and I will be counting the final amount raised tomorrow. She managed it in 7 weeks, on time and did a fantastic job, well done Sarah!

 

So all in all I have had stress but I have also cut it out and am now concentrating on getting better for the summer.

 

On a positive note my consultant is putting in an IFR (individual funding request) to the hospital for me to the get the drug I need for a transplant. This is great timing as I have just passed all my tests for transplantation.

Th chances of me getting funding are very slim but if I don’t try then I will never know.

 

Anyway sorry to keep it brief, will try to write sooner next time

 

TTFN

Lisa

xxxx

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September 1 2012 7 01 /09 /September /2012 14:53

Since I last wrote a few different things have been going on in my life.

 

Firstly and most importantly we are still waiting for the decision on Eculizumab ( the drug I need to have a transplant), we were hoping to get this before parliament went to summer recess but with no such luck....they do say no news is good news so we are keeping our fingers crossed.

As the summer holidays are ending we are hoping we will get a decision soon and a positive one at that.

 

Linking in with this I have started tests for transplantation, even though I cannot go onto the transplant list I can go onto what is called a 'suspended list' where patients go when they are well enough for transplantation and have passed all the medicals but there is a reason they cannot have one at this moment in time.

Therefore if the drug is funded I would be ready to go straight on the list without having to wait for all the tests. 

I have passed my heart echo test which is great news, it showed my heart was in good working order and there was no LVH (Left Ventricular Hypertrophy).

It is basically where the muscle of the hear wall thickens because it has to work harder, usually due to hypertension, so I am led to believe.

I have my first appointment with the transplant consultant in a few weeks.

 

 As most of you are aware I have an on-going battle with the DWP over them wanting me to return to work, to which I do not feel ready. Many times I have stated how hard a decision it was for me to leave my job in the first place now to make me go look for something I cannot do makes me so angry and frustrated.

I have explained that it’s not that I do not want to work it’s just as my health feels so much better than when I was working I do not want to lost that at the moment.

I have friends on dialysis who work and it suits them but each to their own and I do not feel I should be judged that I cannot cope with a job as well dialysing 5 times week.

Who knows what the future may hold?

Anyway my date came through for my tribunal and it was the same date as I was meant to be going to stay with the in laws for a short break. I had been booked in dialysis at the unit there for months and when I asked for a postponement it was rejected by the judge.

The emotions I went through where horrific, I not only felt discriminated against I also felt like I was letting my family down.

Luckily I appealed again, I tried to put the point across that as my husband is my carer surely he is entitled to a week off where he doesn’t have to dialyse me and he gets to see his parents, isn’t this part of his human rights???

 

Luckily the judge saw sense and postponed this time and we got to go away.

We spent a lovely week with the in laws, Jasmine went the previous week so she got two weeks away and we had some lovely family time.

 

Whilst away Chris was unwell and the dialysis unit I go to is by far from my acceptable standards (I will be letting Renal services know about this) but we didn’t let it stop us having some fun!

 

As in all my blogs I try to be as honest as I can to let people know how a patient in my shoes really feels.

Unfortunately this may mean I offend people when I say the truth but as this is my blog I feel that this is my right.

Each time I have spoken to my consultant about getting the drug I need for a transplant she has not sounded very supportive at all.

Her last comment was if I got the drug to quote "you would cripple the NHS and make it bankrupt". I was very shocked by her words as even if this is her personal opinion I do not feel she should be saying this to me.

Luckily it’s not her making the decision and as I have such a good support network and I am now letting comments like this go straight over my head!!!

 

Anyway at the moment I am preparing my daughter to start school in her first year and am awaiting some news on a voluntary position I applied for which I will let you all know about next time!

 

Thanks for reading

                                                

 

TTFN

 

Lisa

xxxx

 

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July 4 2012 4 04 /07 /July /2012 03:05

Well its 2am and I cannot sleep even though I am so exhausted!

Many people reading this can relate to this feeling but the majority of Kidney patients will probably understand a little better about the next bit.

Every now and again I get what is known as Restless legs. I never had this before my kidneys failed and it is one of the worst feelings in the world.

I cannot say my legs just involuntary move but an overwhelming urge to move them like an itch that cannot be scratched, it doesn't go away no matter how much you jiggle them about.

 

I have tried walking, dancing, excersing you name it, I even went out in the middle of the night once walking I was so stressed which wasn't very sensible but I was at my wits end after 3 nights of no sleep.

I remember at my last house I had the worst bout of restless legs lasting for over a week and one night I spent crying in front of the fire as I just didn't know what else to do I was so tired but my legs would not stop.

Sometimes it also spreads through my body where i feel I have to move everything its horrible.

I was prescribed Clonazepam ( a muscle relaxant) which also makes you very drowsy. The trouble is it does act as a sleeping tablet so I would be half asleep but my legs would still be restless and I when I tried walking about I would walk into things this was even worse.

The doctors cannot prescribe anything else and I have even done my own research online as well.

A lot of research states it is down to a lack of Iron but my Iron stores are actually High.

There are other factors such as certain pathways in the brain being affected but that doesn't seem to link to me as that is more of an involuntary movement similiar to parkinsons.

As this is common in Kidney patients it is obviously something related probably to itself and therefore is little I can do.

 

My husband finds it tiring as well as sometimes I do this in my sleep which I am unaware of. I lash out and kick him and he has to sleep in the spare room.

 

I have found I sometimes get this when I have overslept and I usually get to fall asleep by early morning when it is time to get up.

 

Anyway thought I would write this to let you all know another aspect of  my life

 

TTFN

Lisa

xx

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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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