Nearing £750

I we are nearing £750 (almost £900 including tax rebate). What is great is that friends of friends are starting to donate money and spread the world. This is great and I thank you all.

Today I feel pretty good - slept a bit and watched some TV. I am currently looking out of the valley and noticing how the trees have started to drop their leaves. Winter next..

I am back to Bristol tomorrow for dialysis at midday for 4 hours. Monday is plasma plus the next round of bloods and cross matching. It will be interesting to see what these results show. The hope is that the reactivity between the blood mixing starts to drop. I also hope that my hb has truly stabilised. Will keep you posted.

£500 and going on up

Many thanks to all of you who have donated and started to spread the message. We have reached £500 (£619 with tax rebate included) and the amount is growing by the hour. Thanks and keep spreading the word.

Devon

I am in Devon - a change of scenery which is great. Plasma this morning was fine got through the process in the shortest time yet! My parents picked me up and drove me back to Devon - I then had a sleep for a few hours and have just risen my sleepy head.

Spoke with one of the doctors and she said that my recent tests/cross matches that are suprising people and delaying the transplant are causing some confusion. The latest thinking is that the rituximab is actually binding/reacting with the donors blood giving postive cross matches. I wonder if anyone else around the world has heard of this happening and how can it be proved?

The " a million thanks " has raised over £500 in under 2 days that is brilliant. It is key if we all want to raise the million that we donate £2 and tell 10 people why they should donate. The feedback I am getting from people is really positive and excited - I thank everyone for that and say keep it up.

Next week I am going to try and raise the awareness of the fund raising effort. If you know someone or are someone who could raise the awareness through the press etc I would be very grateful to hear from you. The more awareness we can get the better.

Just got back from dialysis

Hi, Dialysis went ok tonight. My arm was burning toward the end, using a new needle site for the fistula and this was causing a bit of discomfort. I have plasma tomorrow in the morning and then am going back to Devon to stay with my parents until the next dialysis on Sunday.

I am looking forward to different scenery. For the past 7 weeks I have basically either been in my flat or at hospital avoiding human contact - it will all be worth it.

I am so thankful to everyone who has donated and is spreading the message about raising a million. The key is in the numbers - if we can all work together and tell people about the idea and the charity and that we are asking for

£2 plus telling 10 people about our fund raising effort that would be brilliant. When we get to a million I would like everyone who donated or told a friend to feel that they were a key part in raising a million.

A million thanks.



If by any chance you run a website or blog and want to be part of raising a million and would be kind enough to put the above widget on your site then please visit http://www.justgiving.com/amillionthanks and click on the promote this page link. You will be able to get the widget from there.

Facebook and a big thanks

Thanks to all of you that have changed your status to help us raise the money. We will get there through "a little help from our friends".

Update on my progress

We have managed to make contact with a number of people at Roche who make one of the drugs I took at the beginning of the desensitization. This basically got rid of all my antibodies but has subsequently thrown up some further unusual results.

Lets hope that the people at Roche and my doctors can work it out between them and overcome the complications.

Lets keep it going

Thanks you so much to all those that have already donated. Please do remember to email 10 of your friends asking them to donate £2 and to tell their friends. This is how we can raise some serious money for the charity.

A Kernal of an idea

I am a bit bored at the moment stuck either at hospital or at home waiting for the treatment and potential transplant.

I have decided to raise a million pounds through the help of friends and the internet. My idea is to send an email to 1 hundred of my family and friends asking them to donate £2 to Kidney research and also asking them to send an email to 10 of their friends asking them to do the same. I want everyone to understand that they are helping to make a difference and be motivated to ask their friends to spend £2. It is a pyramid of good.

I have worked out this. I contact 100 people they contact 10 each giving 1000 people who in turn contact 10 000 people who in turn contact 100 000 people who in turn contact 1 000 000 people. It is possible that within 5 steps we could off all worked together and raised together a well over a million but have only spent £2 ourselves plus a bit of our time.

I am passionate about raising this money. Did you know that 1 in 10 people suffer from renal disease and this is growing. I have been so lucky that research has been carried out and I want to make sure that we can help others.

I will continue with the blog documenting my health and treatment for the transplant.

If you want to start donating visit

A bit more balanced

My body is feeling a bit more balanced than last week. Although I am tired from low hb 8.8 today. We have decided to only take bloods weekly to try and reduce the amount of blood I am losing, that makes sense. I am hoping that the higher eypo will kick in some time next week and the hb levels will begin to rise?

Slept for a few hours this afternoon and feel good after that. No other news just waiting for the results of further cross match tests and other tests to try and work out what is causing the odd results.

Response

Over the past few weeks many people have commented on how can I stay positive - it must be hard. Do you not get depressed?

My response is this. I have had kidney problems my whole life and thus firstly know no difference. Since I was a little child it has been bred into my to be positive and to get on with it. I have seen people in much worse scenarios than me and I see them each time I go to hospital - this makes me feel stronger. I have always had good family support and the mind that has enabled me to switch off negative feelings - negative feelings I believe spiral down and down. In my opinion they are bad for health.

When I was a child I was in hospital for a long time and spent many hours alone on a bed with numerous machines attached to me. I was close to dying - a number of kids died around me. I came through that with a very clear memory (probably a self defence memory) what is the worst that can to yourself? You die. I am not sure that this is correct now - worst things can happen and perhaps death is the ultimate escape?

Before people start wondering I am not thinking that I am going to die soon. I am just trying to explain my feelings to people who ask the question? Do you not get depressed and down?


Ps if anyone who works with or on Rituximab is reading this I would be very interested in talking with you. Please leave a comment and I will get back to you. It regards my current treatment

Thought about todays results

In my normal style I am causing some confusion and reasons for thought. From what I can gather (which is probably not all accurate) my cross match results have shown a number of different things. Firstly the antibody they are trying to remove has been removed but 2 new antibodies/b cells have shown themselves in the tests, these appear to be more aggressive than the original problem.

The doctors are now talking to other doctors around the world to try and decide if there is a reason for this and what they can do about it. I wait to here more.

As my mum says "your body fights extremely strongly and then gives up" I reckon this is what is going on at the moment. I would not be surprised if I am sort of having acute rejection to the treatment at the moment. Once this has worked its way through then the results will become negative - we will see.

The next planned date is in a months time.

Weekend update

This weekend was good - I felt a lot better and managed to eat more and relax a bit. I am still pretty tired.

Went to dialysis on Sunday morning and managed 2 out of the 4 hours. When all the alarms went off in the unit on the machines. Someone had been doing maintenance on the water supply and the water went off. Basically when this happens the machines don't like it. After 20 mins you have to come off as the blood starts to get to cold.

I was taken off and asked if I wanted to stay until it was fixed. We had no idea how long that would take. I decided to come off - within 5 minutes it had been fixed. This basically meant I was 2 hours short of dialysis. At this stage I did not know if the transplant was going to happen on Friday or not so I said I would do 2 hours on Monday followed by 4 on Tuesday.

Plasma went fine on Monday and all the cross match bloods were done, at this point the indications of a transplant on Friday were good. I felt not so confident over this.

Dialysis was fine - 2 hours. My fistula is looking well used now. Got the nurse (who is great at needling my fistula to use a couple of new sites. That was fine. My hb was 9.6 - this is getting low. Speaking to the doctor we are hoping that is has now stabilized.

Delayed

Got quite a bit to write about. Firstly just heard from the doctor that the transplant will not happen on Friday, this did not come as a surprise to me. Apparently I have managed to create some new antibodies that are more aggressive than the ones they were trying to get rid off. They are unsure of how these have appeared and are asking experts around the world about what to do.

I am still confident that they will sort it out and that they will be able to do the transplant at some point. Perhaps next month.

I will write more soon

Next week

I am still pretty tired - plasma day is always knackering. Was told today that I don't need my bladder inflated before the transplant.

They do the next cross match on Monday and decide on Tuesday if my antibodies have been removed yet. I don't think they had been removed last Monday. I am thinking that they probably will be around this Monday. My body is normally quite a fighter, it often takes more time and drugs to do stuff to my body than is the norm. Their is a chance that they will not be able to remove the antibodies and hence not be able to do the transplant.

My hb was similar to Wednesday result so it seems that it has stabilised. Hopefully it should start lifting soon.

It also appears that my blood vessels are not as good as I was led to believe. I have narrowing of a vein near my current transplant (rejected) which means they are probably going to leave that one in place and use the right side of my stomach.

Transplanted kidneys normally get put in the front of your body just above your pelvis. As I have had two before their is a chance they will have to put this one higher up near the stomach.

Morning

I have just slept for 12 hours and feel much better- that is good.

I have been sent a link to an article
http://news.bbc.co.uk/1/hi/wales/7003268.stm

which has the headline Kidney patients in part of Wales are suffering "Third World" conditions with renal units at breaking point, a charity has claimed. It then goes onto pick out bad situations in a renal unit etc and the time taken to get to a renal unit and the pain it inflicts on people when needling.

I firstly want to say that this headline is a disgrace. Here in the UK people get dialysis that keeps them alive - in the third world you are very very lucky to get dialysis. We should always keep that in mind.

From my experience of dialysis - which is only focused on one unit I would make the following comments. The first focuses on a growing problem and that is an ageing population with an increasingly sophisticated NHS. I would guess that 20 years ago many of the dialysis patients being dialysed at the moment would not have been. Dialysis has got a lot easier on the body this has meant that sick erdlery patients are being able to be kept alive. To be honest I often think this is not a good thing, the quality of life is so bad and nature is basically being held back for a few years. This is easy for me to say as I am not in that position and am not one of those family members.

The strain on dialysis and renal units is going to get worse as well as more and more people go into renal failure as the get into their old age.

Transport is a big problem with people having to wait long periods of time. Dialysis takes 4 hours on average but many patients have at least a 2 hour time frame before and after dialysis that rotates waiting for transport. Transport is done by taxis, volunteers and ambulances depending on the health of the patient. Sharing of taxis is common.

I have always driven into dialysis - I don't get any travel expenses paid. If i took transport this would be free. This seems a little weird as it often prevents people driving in due to cost instead they take the taxi service that costs much more. I do think that the transport service could be improved greatly and this is not just for dialysis it is for outpatient services as well.

In terms of pain the quote was "She said the treatment was "very painful", as two big needles were inserted so blood could be taken out and cleaned by machine.

She said patients were unable to hear the televisions provided, which would be a "distraction" and help patients psychologically."

The needles are big and it can be painful at times. Local anesthetic can be used which takes the needling pain away. Dialysis after that for the majority of patients is pain free. I am afraid that hospitals and pain go hand in hand and renal problems and pain go hand in hand.

Tired

I am feeling tired at the moment. I put it down to a number of things. First the treatment is increasingly severe on the body. It seems to take longer each time to feel normal after plasma. Secondly my hb has dropped significantly over the past 17 days from 14.5 to 9.9 although it was slightly up today at 10.5. This basically means that I have about 2/3rds of the oxygen carrying cells in my body - this basically makes it harder to do things and recover from procedures. The level I am at the moment is not that low but I think the rapid decrease has made it feel worse.

I hope that the hb downward trend has stopped.

I am also feeling less hungry by the day, no idea the exact reason for this. Probably due to a combination of things. It is a sort of chemical sickness feeling that takes away the feeling of hunger.

I also often feel slightly fluie in the evenings.

Apart from all the above,which I think are all expected side effects I am fine.

I note that my potassium was 6.1 the other day. This is the most it has been since being on dialysis. No idea why it was at that level - perhaps lab error or perhaps plasma puts it up? A high potassium level is not good - it can cause a heartattack.

mental state

As all the stuff was going on today I actually began chuckling to myself. I think that sometimes that some of the medical staff loose sight of the fact that this is my life they are dealing with and that small decisions make big decisions.

From the outside it might look like the whole process has been slow and perhaps slightly dis organised. I have a very different opinion about this. I, from the beginning of this process understood that it was a new process and that it would take time and there would be complications, panics etc as we go along. I feel lucky to be given the opportunity of having the transplant and the treatment.

I have also felt that the most crucial things have been dealt with within time and well. I will at this point note a few things that could be included within a wider patient care bundle for the next patient that goes forward for this treatment. This could not have been available for me as I am the first at the unit. I also think that it makes it easier for the doctors to have me as the patient as I basically understand what is going on and can challenge/remind suggest to the doctors what I think and want. I also can remind people that this needs to be done or that needs to be checked. This has made it easier for the medical staff. I am not trying to blow ,y own trumpet, but do think it is important that people realise this. If a patient has less knowledge or confidence it would mean that they would need more support and structure organisation.

For a patient bundle I would

Explain the reasons for the treatment - verbal and written

Explain some of the major side effects

Provide a person to chat things through with. Perhaps not a doctor but a nurse who is not directly related to the treatment. This is as much as a supportive role as anything else.

Have a clear timescale for all that is needed. Including work up for donor. Include surgeons meeting, ethics meeting, cross matching, plasma, rituximab etc... I think this is important.

I will write a proper document - "the patients perspective" at a later date.

My final comment is this.

I know that the worst thing in medical treatment is the waiting for results and information. This is particulary bad - people who are not used to the health service do not understand this and it causes stress and anxiety. This does need to be improved - it as simple as you can expect to here your results on ... OR "we are unsure of the problem at the moment and we need to do some more tests"

Most patients actually find it easier to deal with things when they have the information, the waiting is awful and stressful. Often the waiting is just because something has not been updated.

Long day - lots happening

Today has been hectic and I am pretty tired.

First update as I have not done a proper update since last wednesday. Things are mostly fine with plasma and dialysis. In Friday one of the nurses accidentally managed to prick herself when taking one of the needles out, this caused a bit of confusion as what the protocol is. It turns out that we both have to have our bloods checked for viruses. I am pretty confident that I am fine as I am screened regularly, they did a viral screen on Saturday and again today. These things happen...

Friday eve and Sat morning was suffering from a bad stomach. This is not like the normal stomach pains - it is hugely chemical drugs based and unpleasant. It seems to go as quick as it comes though

My dialysis session on Sunday was changed to Saturday twighlight as the sunday staff wanted to go to a leaving party. This was fine although it did mean we had to run plasm a little slower today as I have more creatinine in mm blood.

Otherwise the end of week and weekend has been fine. I went orienteering on Saturday - basically 1 hour of running around trying to find hidden points using a map and compass. I could not manage to run the whole thing - but had fine and got some fresh air.

Today

Plasma was fine - ran slower due to dialysis on sat and not sunday. HB dropped again to 10.3. Spoke to doctor later in the day and he agreed to increase eypo to 60 from 20. This will take a while to work.

Met with the surgical team as well. They impressed me, one of the top uk surgeon is doing my transplant which is great. Due to the treatment the date of the transplant could be 28th of this month but it could also be after that. The surgeon said they may even have to come in on a saturday. I responded that means I have also put off what I am doing and come in on a saturday "that caused much laughter"

He asked me questions and considered my past history. He shook his head a bit and decided that I needed a full scan of my arteries and veins around my stomach and legs to decided which is the best place for the kidney. He thinks he will take out the current kidney that failed and replace with the new one.

He also said as I have basically not passed urine for 18 months my bladder would have shrunk. I have to go and my bladder stretched before the operation. This makes my eyes water thinking about it, basically a tube up the private part into the bladder. Water then pushed in and drained out. This will cause it to stretch and hopefully be better for the surgery and the kidney afterwards. Will reduce the build up of pressure.

I then had to go to see a ethics person with my family to prove we were related etc. All pretty simple stuff. A bit more paperwork...

They managed to fast track the renal scan, so had this done in the afternoon. Took about 30 mins, the guy was very informative. I hate echos and that whooshing sound. Anyway from what he said it seems that I have very good arteries and veins. Like a normal person. That is good. Did you know the more movement you do the better it is for you veins and arteries.

They review todays cross matching on Wednesday. This will probably give us a good idea about the potential of the transplant happening next Friday.

Lots on today

Will do a larger post later. I have lots of medical stuff today - mostly meetings and plasma in a few minutes. I see the surgeons, the ethics people and some other doctor.

Quite a lot to talk about - but no time at the moment. Hope to do a longer entry this afternoon

Smiling

I am happy tonight as I have just seen England beat Russia at football on the tv. It is good to see a English team that actually looks like a team and not a bunch of overpayed , ego inflated individuals. I hope the manager does not bottle it and keeps the same team for the next match.

On the health front things are ok, had a bit of stomach ache which is not good. Similar to what I go previously from mmf. Not sure how to get rid of it? Hopefully the lower dose may help.

Plasma was fine today, they ran it at the fastest they have so far. They seem surprised by the tolerance of my body. When I had finished plamsa I went to visit a friend on the ward who is in being treated after his 4th transplant. Whilst I was talking to him I noticed that my arm was getting warm - I had started bleeding again. So I grabbed some paper towel and walked down to RDU to get one of the nurses to patch me up. It was quite red and messy.

I spoke to the transplant coordinator today - just a catch up really. She has organised a number of things for next Monday including seeing the surgeon and getting the ethics side of the transplant donation done. It will be good to get all that out the way.

No other news.

Catch up

Went to find my doctor today to catch up and also to mention about hb levels dropping. I was thinking that this procedure would not be great if you did not have a good relationship with your doctor. It is great that he makes the time to explain stuff and listen to my questions and concerns.

My mmf has been reduced to try and allow my hb to stop falling. Apparently I the rituximab did it job and I have been blasted removing some type of specific cell... forgot which one.

A thought about dialysis. Tonights dialysis was fine - my named nurse is great - she has been keeping a close eye on me. I waited for her to come to work today so that she could put me on. Most of the staff at the dialysis unit are both very professional and good people (I want say all because I would be lying - but the majority are.)

I strongly believe that the dialysis centres should have a physio see that patients from time to time. Sitting on a machine for 4 hours is not good for the shoulders and neck. We should be taught exercises etc to help prevent damage and pain. I will suggest this at the next patient forum meeting.

They are reviewing my cross match tomorrow - this basically shows if the treatment is working. They are expecting more immunity this week because my white cells should be going into turbo drive as they will have discovered that their allies in the blood have all been killed. Apparently it is a feedback mechanism.

Calcium levels

I am wondering if my calcium levels are low. I have tingling in my hands and feet and feel slightly irritable. The anticoagulant they use on plasma can cause this. Will see how I feel in the morning. Have had a glass of milk and a yogurt, that should help

http://en.wikipedia.org/wiki/Hypocalcaemia

Running

Just went for a short run ending with a walk. Beautiful evening - ran for about 20 mins and then walked for about a further 15 mins. Interestingly my pulse is running higher when running than it has been - I put this down to lower hb levels and my heart having to pump faster to get o2 to my muscles?

Feel better anyway from the running

Skin

I have noticed that my skin is dry especially around my eyes and face. I am guessing this is due to drugs, plasma and dialysis having an effect on my body. I am also suffering a bit more from stomach aches - this I am sure is from mmf. Last time I was on mmf I had it much worse.

My hb has dropped again - 12.1. I am now positive that the mmf is having an effect and bringing my hb down by suppresing my bone marrow effectivness. I have raised it with the doctor and will see what they are going to do. I know that this type of thing if not caught early tends to cause problems latter on - with hb you need to react early as it takes a while to make it increase again.

Monday is cross match day - they took loads of blood today from both me and dad. A little bit of confusion over which bloods were needed but I think it was all resolved.

Blood pressure was a bit higher today 143/88 going on plasma and 137/72 coming off.

Not much else to report.

Week 2

It was great to have a day off on Saturday. Having done plasma Friday morning and dialysed on Sunday afternoon it gave my body a good break. I think it needed it. I even managed a run on saturday - only a couple of miles but it felt good to get the heart pumping and to sweat.

When you don't pass urine you notice how much good sweating does to you. It seems to refresh the skin, reduce thirst (lose of salt I presume) and generally make one feel a bit more cleansed. Before the start of the treatment I was running about 20 miles a week but have cut this down a lot as I don't want to overdo it.

Dialysis today was fine. Felt that I needed it. Interestingly I had been running my pump speed at 320 the last week to give my arm a bit of a breather. I put it back to 350 today and think I should try and keep it at that level if poss. I think I was starting to feel the difference in the dialysis.

I am watching my hb closely at the moment as I have restarted mmf and last time that reduced my hb significantly. I don't want this to happen again. I have emailed my doctor to ask about this.

In myself I feel good - it is nice to know people are reading this and some people are interested. Feel free to comment.



The pills I take in the morning.

Pictures of dialysis

Some images from dialysis last night. I took these pictures - not great quality but they give you the idea.




The dialysis maching above with tubes attached. I have learnt to set the machine up which often saves time.



This is called the kidney. It basically does the job of the kidney using osmosis and diffusion. It draws the waste that your kidney get rid of and it also removes water.




My arm - you can see the bump (vein) and the red marks where they place the needles.




All hooked up - the blood leaves through the bottom needle and returns through the top needle.



The machine working...

Sunshine and the weekend

I have finished my plasma session. They managed to run it even faster today thus took less than 2 hours. I have had no reactions so far to the treatment and the citrate. I think my body is pretty accepting and strong.

The doctor in charged said she had not met anyone who was so laid back during treatment, I took that as a compliment. The thing is I actually feel very laid back and not that worried about it. I suppose I have accepted what will be will be and that the more relaxed I can be the better for my body, my brain and the people around me.

I think often when you are ill, a lot of the stress you build up is related around worrying about the effect you are having your loved ones. You don't want them to worry but it is difficult as this is a natural reaction. It can be a difficult situation.

I now have a break and don't need to go back for anything until Sunday afternoon. That means I have got a complete day off tomorrow which I am looking forward to as is my arm. And it is sunny I think I might go for a run/walk later to get some sun and fresh air.

My lymphocytes are now 1.2 from 1.6 which I think is good.
hb 13 (this week it has ranged from (13 - 14.7) that is a big range.

I am trying to chase one of the doctors to organise blood taking for monday - to all be done at the blood unit. This would simplfy things but I need to get hold of him to tell him that the plasma unit have agreed. I have left a message.

This week I have been on machines for about 30 hours. That is 30 hours of my blood being pumped around and around. I still find this weird - it is just amazing that the body can deal with it.

What post the pictures soon..

Evening.

Short post tonight. Want to get some sleep.

Did not sleep last night - eventually dropped off at about 4am, let myself sleep until midday. That helped

Dialysis was fine - took some photos which I will post tomorrow. Plasma tomorrow.

I have found something weird. I am finding that I am tearful when watching moving momenet in movies and tv. This is not normal for me I wonder if it is related to the treatment or perhaps just all that is going on?

Thanks to all of you who have contacted me and are reading this, it makes writing it easier..

What is in a name? (beforeyouaskiamfine

You may be wondering where did the name come from?

When I was about 10 I was pretty ill and was in hospital for 10 months. When you are lying on a bed and every person walks in and asks you "How are you?" All you can really say is "I'm fine". Sometimes I wanted to say I am bloody aweful, but that would not be british...

The nurses managed to get me a badge made that said "before you ask i am fine" and I would use this as my standard answer.

So that is where the name came from

Bye Bye immunity

I had a quick look at todays blood results and it would seem that the treatment and infusion on Monday has had an effect.

My lymphocytes have dropped from 3 units to 1.6 units. That basically means that my internal armies have halved. This I think is what the doctors are hoping for - these little things are the things that cause rejection.

My phosphate has risen back up but that is not a surprise as I have been eating calcium foods and liquids and these contain phosphate. My haemoglobin is 13.4 on monday it was 14.7 one of these figures is wrong. I have an injection each week called eypo which helps to produce red blood cells. These carry oxygen around your body and thus with a low level you get very tired and have no energy. The normal range is about 13-18 (I think). When I was a child and on dialysis my haemo levels were around 5.5-6. I honestly don't know how I managed. Eypo has had such a dramatic effect on renal patients lives. Well done to the drugs company and researches who discovered it.

Plasma was fine today. Only took around 2 hours - they ran it quicker. The staff are great and the needles are smaller - makes a big difference. I had the odd minute of feeling slightly odd - but nothing to serious.

I was quite tide this afternoon so lay on my bed for a while and dozed whilst listening to the cricket.

I can't decide if I should continue running. In some ways I really want to but I am cautious about knackering myself.

I have a date to see the surgeon which is good. I also have to see another doctor to prove that I am me - and that dad is dad. We have to take photographs?? Some government regulation.

This makes me think it is about time that this government - no all politicians started to cut all the political correctness and paperwork. It just takes up valuable resources and time that could be spent on better things. I don't want to sound like I am complaining as I am very very gateful to the health service and every single tax payer in this country and always will be. I do feel passionate though that there are so many good people working on the ground level who are being restricted and controlled by "the management". Another piece of evidence for this stupidity. Eypo, the drug I was talking about earlier, costs the hospital 17.5% more if it is given dispensed in the hospital (vat), if it is delivered to your home it does not cost that. So what you might ask. Eypo has to be stored in the fridge. If your dose changes you obviously need a new delivery, doses change frequently. So the government which is trying to promote more public transport, a greener environment is charging less for a van with a refrigerator to deliver a month supply of eypo to your door step. This is both inconvenient for the person at home (working hours only) and also is crazy for both the environment and road congestion. Sort it out politicians.. At least price it the same regardless of the location.

Back after dialysis

It is 11ish and I am back from dialysis. Went ok - blood pressure seems to have dropped a bit. I wonder if this is from plasmaphersis thinning my blood and/or from the Rituximab killing all my white cells?

I have to go back to the hospital in under 10 hours - this is going to get tiring...

About to have a bit of food and then try and get some sleep.

Tuesday - second day

Woke up at about 11am today. Had normal type of sleep on and off. Took a sleeping pill which helped. It seems that being on dialysis has a major effect on the ability to sleep. Many of us find this - I think the doctors should pay a bit more attention to these types of things. Normally they say see your GP - I am not sure this approach works with renal patients. Perhaps they need to make the communication better. I am lucky and I have an amazing GP and consultant who I can talk to openly and understand what is going on. But some of the reports I here from other patients is not as good.

Had some sad news yesterday - one of my fellow dialysis patients died on Sunday. I had been dialysing in the same slot as him for the past 18 months. So that is sad - he had major heart problems. Not much more I can say really, I tend not to get emotional over death - unless that person is very close to me. I feel that death comes to us all and have accepted that fact. When you have accepted that it actually makes living easier!

Dialysis in a couple of hours first time I would have dialysed on a tuesday - the television is shit as well which makes it boring. Probably take a dvd.

I am now on a full regime of antirejection drug in preparation for the transplant. I cant imagine what is happening inside my body at the moment. yesterday literally blasted all my white blood cells apart leaving with little immunity.

7 Hours later

I am tired but ok. Underwent my first plasmaphersis session followed bu the infusion of Rituximab.

The plamsapherisis took about 3 hours. It was painless and pretty simple. I did not appear to have any side effects - except for a the end when I had a tiny bit of tingling in my mouth and a strange test this is from the citrate (anticoagulant)

I basically had 60% of my blood plasma removed and replaced with other plasma. In total about 2.5 litres. It is weird to see your blood plasma collecting in a bag above your head and thinking other peoples is replacing yours.

The nurses and staff seem to be excellent. I had loads of blood taken about 15 bottles full.

Following Plasma I went up to the renal unit for the infusion. I landed waiting around for ages. Inventually I was given a bed. The nurse tried to get a needle in my hand (my veins are crap like most renal patients) she missed. But the doctor who was looking after me hit it. Well done to him.

I was then started on the infusion at a rate of 16 ml an hour. That is pretty slow - but this is to ensure that any reaction that occurs is limited. They then sped the process up and after 4 hours it was finished.

During the process I did feel a bit fluie and a tiny bit short of breath but not enough to mention to the medical staff- it would have just worried them and caused a fuss.

I will write more later

Dialysis

Dialysis went ok today. Arrived at 1 and set the machine up. Got on at 1.30 and away by 6 pm. Sundays are good - no waiting around. Normal wait time is between 1 to 2 hours. That can be a real drag.

Going to try and get a fairly early night tonight - after match of the day. Have followed the doctors orders to eat calcium to stop me becoming hypocalciumic during plasmapheresis. Basically been eating cheese and drinking milk..

Not much else to say. Emotionally feel pretty stable and have not got butterflies yet. I am not looking for to having all the drugs put into me - basically in one day I will go from having a pretty normal immune system to basically nothing. But it is best not to think of that. I am given anti viral drugs and antibiotics to to and offer some protection.

It makes me think when people complain about having to take antibiotics - come and join my world tomorrow, that would stop the complaining.

Quarantine

Due to all the dealys and changes of plans this is the second time I have gone into quarantine... The last time was the end of July in which I thought the treatment was going to start.

I have been living in a self imposed quarantine for the last week. This is to try and stay well for the start of the treatment. I basically have not been out except for dialysis since last weekend. Alhough I have continued my running and walking - as this does not mean contact with other humans.

One can obviously not guarantee not getting ill but I am sure it will reduce the risk. I will carry on this isolation for all the time of the treatment and hopefully for a few months after the transplant takes hold, well at least until my immunity starts to get stonger again.

Extra dialysis

I have been asked to dialyse as close to my first plasmapherisis. So I am dialysing tomorrow (Sunday) in preparation for Mondays plasma and Rituximab infusion in the afternoon.

Dialysis lasts 4 hours in which I have two big needles placed in my fistula and the blood cycles through the machine for the time removing both impurities and liquid. The main reason for the extra plasma is to get my creatnine down.

I find dialysis ok - although I am now quite selective of who puts me on. Eg who needles me. This is probably a mental thing but it is my body, my arm and my life. One of the nurses at the beginning of my dialysis treatment said "Ian you have the right to choose and make sure you use that right." Unfortunately that nurse has left - she was an awesome nurse so caring and brilliant at her job. I implore other patients to be selective if they like.

I will try and go for a walk or run tomorrow morning. I find it important to do exercise and get fresh air at the moment it makes one feel so much better.

Desensitisation Protocol

What is it all about?

Having already had 2 kidney transplants that have had varied life spans my body has been exposed and thus sensitised to a number of antibodies. The kidney they want to use for the next transplant (a fmaily member) has one of these antibodies and thus my body would attack the organ if it was transplanted without precautionary treatment.

This treatment is called desensitisation, it has not been carried out at my unit yet but has been succesful in the states and London.

The basic idea behind the programme is to remove that antibody and prevent it from growing back and attacking the kidney.

The treatment includes plasmaphersis and the use of Rituximab an antibody killer. This is carried out until the antibodies reach the correct level and the transplant is carried out. I am not going into any more detail here, I will do it as I blog the progress.

So far

I am 30 years old suffering from renal problems. I was diagnised with renal problems in South Africa at the age of 6 months and went into kidney failure at the age of 7. I was put on CAPD (dialysis), my mum then gave me a kidney. This lasted about 9 months and then failed. I went back in dilaysis for another 4 years, cadp failed and I was placed on haemodialysis in which I was based at the hospital for 10 months at the age of 10. I became very ill with dialysis not working well and suffering from a temperature for over 6 months that was never traced.

Eventually I was placed on the European Emergency transplant list and was fortunate to receive a kidney (just in time it took a couple of weeks to work and then lasted for about 16 years with very few problems.

The kidney failed in December 2005 in which they tried to place me on capd again but could not get it to work so they put me on haemodialysis.

As my last transplant started to fail the doctors talked about desensitation programme and if I would be interested. I will talk about this later.

I have been on haemodilaysis for the last 19 months and have generally been quite well.

I have in total had 34 operations.

The purpose of this blog is to record the next set of treatment on me. I will aim to keep it updates as much as possible.

It seems to be on...

I think that my treatment will start on Monday morning. I spoke to the doctors last week and they ran through what was going to happen. I have the desensitisation protocol copy that they are using.

I have also got a junior doctor helping out with all the administration of the procedures and blood tests. My main aim for this blog is not to keep detailed medical notes or procedural notes instead it is to log my thoughts and experiences so that other patients can understand what to expect and also to help others understand what is happening to me.

To begin with I am going to outline a bit about me and my life so far. This is just to set the scene.