New Years Eve

I am currently in Devon. Travelled up to Bristol this morning for blood tests - as it is a bank holiday they were done urgently.

The doctor is very pleased with my current renal function - I have almost the same function as someone with two normal kidneys who is perhaps overweight and unfit. My hb has also gone up to 14 which is great - a few months ago before the transfusion my hb was near 5 that is almost a 1/3rd of the amount. Quite a difference.

I had an interesting chat with my doctor about the potential of setting up a charity focusing on transplantation in the Unit and if I would be interested in help setting it up. I am very interested in the project and am going to spend some time thinking about what is needed.

We also chatted about the marathon next April and what other people can do to help raise awareness etc. I have had a further idea that I am not going to say yet - but think it could be a real good idea that has some longevity.

It is New Years eve so I am going out with some local friends - not sure what we are going to do yet but am sure it is going to be fun,

Christmas, Family, Old friends and new friends

It has been over a week since I least posted. Christmas was good at my parents with brother, sister-in-law and her mum and relations. My brother and I cooked - it was wierd having a menu that was not restricted - it was also tyring but on the whole good fun.

It has been great being back where I grew up - in the country side. Have been seeing a number of family friends over the week and catching up with peoples news. Have also been making new friends which is always nice. It is strange how in a smaller community it is often easier to make friends compared to a large city.

I developed a cold and cough on Christmas day and had bloods done the day after boxing day (a week gap). My blood results were not brilliant having increased by almost 30 (creatinine), funnily I had asked to and saw a doctor over my cold and cough. She said that I did not need antibiotics at the moment but that my blood pressure was up a little 132/95. This is not seriously high at all for me and for my current status. The hospital called me back to have urgent bloods the following day. This is always stressfull, the results were fine, actually better than the have ever been -also my cold and cough had got a lot better. Although I am still not completely over it.

This was a relief - that night I went to a local families party which was excellent -great to see so many old family friends.

A few pictures



Boxing day - Heighest point on South Coust



Another



My niece making a festive effort



Lyme Regis - bakery/ eatery

Antibody, dr17

I spoke to a couple of the doctors yesterday - whilst giving Christmas cards. My immunity to the DR17 antibody (the one they needed to get rid off before the transplant) has returned. It started to return 3 weeks after the operation with no associated sign of rejection. Interestingly they were worried that it might be supercharged and aggressive - but the levels have steady for the past few weeks showing that my immunity has reached a level which the doctors are pleased with.

I dont understand all the science behind this and am not sure that many people do.

They also continue to reduce my antirejection drugs including reducing steriods slowly and my tach dose - this is related to the amount in my blood. I seem to be on a low dose with a high blood level? My liver function is fine - so I can break it down.

Christmas and a week off

My results today were good and I don't have to go back for bloods for another week. (If I feel well in myself). This means that I will have a week without going to hospital - it has been over 2 years since I have this length of time away from the place.

I am going to try over the next week to get quite a bit of exercise and to relax. My brother and I are cooking for the family and related family. I feel that there is a bit off stress over what we will produce. I am so not stressed about it - the amount of stuff that I have been through over the past 6 months makes cooking for a couple of days pale into insignificance.

If I don't post before Christmas I wish you all a happy, healthy and peaceful one. Remember what Christmas is about and if the food is not quite as you want - just feel good that you have food and have the appetite to eat it...

Getting active

So I am now into the seventh week of the transplant and at present things are going well. My creatinine seems to have settled below the 140 level.

I have also now started to control what I eat - in terms of calorie intake. For the first 6 weeks I ate as much as I could of anything, I think my body needed the nutrients and to restock after the past 3 months of treatment. I increased my body weight by just under 10% to around 71kg.

This weekend I went for a walk in the dark near my parents house. It takes you through a forest and then up a steep hill. It was good to be walking again and in the cold fresh air - I could feel that I have lost quite a bit of fitness and general overall body tone. My lower back and hip regions continued to hurt, I will have to monitor this. I spoke to the doctor about it and he was at first a bit concerned that it might be actual hip joint problem which is common in kidney patients. But as I have no mobility problems and the pain is mostly muscular - he said it was probably nothing serious.

I will continue the walking and exercise regime. I actually think it helps with kidney function? I will also attempt to eat more sensibly and keep my weight controlled. I expect to put on a bit more weight as I get fitter but in muscle.

I have had my steriod dose lowered again which should help reduce my appetite and reduce the fluid I am carrying.

Converting blog into a useful resource

Part of keeping this blog was to help future patients that go through the same treatment. A blog works well when the reader keeps up to date regulary and can follow the events in real time. I am not sure how useful it is for future patients as it is actually quite hard to read a blog from the beginning and can appear disorganised.

I am considering transfering my entries into a book/ booklet that is better organised. The other option is to make an online book. If I do make it into a book/ booklet I would like to know that it would actually be useful and that I don't spend loads of time formatting etc for it not to be used.

I have been thinking about writing a factual book with accompanying website that focuses on renal stuff both for transplant and dialysis patients. I could not afford to do this without having someway of recouping some money for my time. Perhaps through sponsorship or charging for the book and access to the website. I will have to do some more research into the topic and contact a few people to see if their is any interest.

If you think you could offer anything to the above idea in terms of experiences etc please do contact me. I know that quite a few people are reading this blog and many are linked to the renal world.

First serious exercise since the transplant

Yesterday I did my first serious bit of exercise since the transplant (just over 5 weeks ago). I walked about 4 miles in just over an hour - everything seemed fine and I felt good. I could feel that I had not done much for the past 3 months.

My body and especailly lower back - hip region had some minor pain and stiffness as I walked but nothing to serious.

Today when I woke up I was a little bit stiff in the lower back and left hip region but that has past. I am sure this is from the surgery and the scar which runs up my right hand side of the stomach from my pelvic region. My aim is to exercise in small amounts building up strength and increase amount and intensity as I go.

I am running for kidney research

London marathon

I applied for a place to do next years London marathon and have gained a place. I have 4 months to prepare. My doctor is happy for me to attempt it - it is going to be tough - and I am not banking on a fast time. I think that I still have about 4 weeks until I can start running again (if all keeps going well) - so that leaves 3 months for proper training. I have a pretty good baseline fitness.

My doctor wants to do something alongside - he can't run due to knee problems but is thinking about rowing whilst I am running. I am also going to get some advice from the hospital regarding training, diet and in particular fluid balance which is crucial for newly transplant transplanted patients.

I will keep this blog going and record my progress.

At 1 month.

Interestinly my creatinine jumped at the 1 month level from 117 to 140. The doctor asked for me to come back the next day and have a recheck. If my creatinine was 150 I was to have another biospy and high steriod treatment.

I went in early Sat and had emergency bloods - the results came back with a drop of creatinine to 134. The doctor was happy and asked if I would come in on Sunday to check the results - he said it was my choice. I decided that I would come in - I think it is important to catch things early if there is a problem. Went in early on the Sunday and had emergency bloods done again. The creatinine had dropped again to 125 which was good. I was back in monday for more bloods.

I was then put onto twice a week bloods with creatinine ranging from 120 -140 at the moment.

Day 3- 10

This was perhaps the worst time off my hospital stay and at times caused me much apprehension, pain and problems. I am going to describe what happened in detail so if you don't want to read the specifics miss the section.

On day 3 I was starting to get out of bed and move around more. My urine at the start of the day was clear and passing well and my creatinine was down to 167, things seemed to be going well. Then things started to change during the afternoon and evening my urine started to turn red and darker red. I had a tube into my bladder that was taking the urine straight out. This makes it easy to see how much urine you are passing and how much blood is in it.

During the night things got worse - I raised it with the nurses saying that my urine amount was dropping and I think I had about 4 hours of passing basically no urine. They flushed the tube once and drew off urine and some blood clots. This relieved the pain, but it soon blocked up again, the nurses said they did not want to flush because it was a risk of infection. I was getting more and more in pain and had to take more and more painkillers to cope. Eventually I was in so much pain and internal pressure that I had to basically shout out in pain - the night staff basically said to be quite and that they were doing hand over and would get to me afterwards. Basically ignoring me. Thankfully one of the day staff said "he does not complain like that!" Something is wrong and she came and spoke to me to see what they problem was.I explained about the blood clots and not passing urine and the pressure. Within minutes I had another nurse around me and a doctor. They did a proper flush and drew off over a litre half a litre of liquid more than my bladder could take at the moment. It was clear that there was a problem. The doctor organised another doctor to come and replace the tube that passed up my *enis and into my bladder. He arrived and attempted it twice but could not manage to get the tube in. He urgently called a specialist urologist to come and do the tube insertion. He arrived with 10 minutes and managed to get the tube into my bladder with much pushing and shoving. I had basically a bladder full of half clotter blood. He then spent 10 minutes pushing saline into my bladder and pulling with a syringe this liquid out - under great pressure. He managed to get the main clots out and then set up an irrigation system that basically continually flushed my bladder for the next 8 hours. The tube that he had placed in me was about 3 times the size of the original tube and was very very uncomfortable causing bleeding in the nether regions that was not nice - but at least the clotting and pressure problems had been stopped.

The pain I had during the pressure build up was unbelievable - but I was not so worried about the pain I could feel the pressure in the bladder and then up into the kidney and this worried my greatly. It was a relief to have that pressure relieved once they had sorted out the irrigation and removed the clots. I suffered for a further 3 days from bladder spasms which are very uncomfortable. If you have them I have realised that you should just go with the pain and relax and this makes them less painful and scary. Apparently what I went through that night was more reputed to be more painful than giving birth. I am glad I am a male...

The next morning when the doctors came round they were discussing what my creatinine that day would be, I don't think they had realised the problems I had the previous night - I knew that I had been in problems and that I had not been passing urine. I told the doctors that my creatinine would be up and why. They disagreed.

My creatinine had risen, and risen dramatically. From 167 to 330 which should not happen over that time scale even if you have no renal function. There was original panic but the main doctor decided that I had had a urine leak inside me from the pressure and that this was reabsorbed into my blood putting my creatinine up.

I started to pass urine again at good rates with less blood and my creatinine started to drop down to 180.

I had the tube removed on day 6, this was a great relief and allowed me to move around freely and to feel a bit more human again.,

I also had a potassium scar in which a potassium result came through at 6.5 which for some people can be life threatining. The doctor said that this was probably lab error but they had to check it again. They did an emergency ecg which can show high potassium and sent off urgent bloods. It all can back normal.

On day 7 my creatinine jumped up again unexpectedly and they decided that it may be down to high tack level but they wanted to be sure and did a biopsy of the kidney.

A biopsy is not a nice thing - it does not hurt that much but does carry the worry of a big needle shot into the kidney via a gun system - this can cause more bleeding and damage in about 4% of cases. I did actually agree with the decision to do a biopsy and was rolled of to the minor opps room for the biopsy. It was funny because I had to registrars take me down on my bed to the room. They were both ultra keen and nervous to do a good job for a number of reasons. One being that they knew the effort and emotional energy that had gone into the transplant preparation and following days of treatment.

During the biopsy procedure they use a echo machine to locate the kidney which is just under the skin on the fron side of your stomach above the groin area. They spent some time being sure where the kidney was and the best place to do the "gun shot". The doctor inserted the needle gun into my skin and wobbled it so he could see it on the acho machine. This is uncomfortable and worrying because you don't know when the shot is coming. After about 6 insertions and wobbles just above the kidney he eventually did the first shot. The needle/ gripper get shot into the kidney and then draws out. He repeated this again so that he had 2 core samples. The actually procedure was flawless and we were all relieved. Now just had to wait for the results. I had to lie completey still for 6 hours.

The following day was crucial both to see what my creatinine was doing and the results of the biopsy. My creatinine had dropped slightly to 191 which was good news and the doctors were pleased to tell me that the biopsy was all clear with no signs of rejection in the cores. This was good news and it was prob my tack levels.

Over the next 2 days I began to get more strength back and was up walking around the hospital and basically wanting to go home. I still had a neck line (line going into my jugular vien) and also had stitches in.

On the monday - day 10 I was allowed home, had my neck line out and stitches removed. All fine - these things are not painful but you can let your mind think that they will be. Left hospital with a creatinine of 165.

DR 17, anitbodies and results

Interestingly last week one of the cross match tests became positive. This was for the element they were trying to remove at the beginning. The doctors expected this to happen and where watching closely to see what the effect was going to be. It was possible that this could stimulate rejection and further treatment etc would be required.

It would seem, even though this cross match test has become positive that the kidney is not reacting to the change and has actually improved in its function. My creatinine is now (today 117) which is normal. I don't think I have ever had a creatinine this low. I don't really understand how the cross match can become positive but yet no rejection. I guess it is because the organ is already in the body and the bodies fighting system is so confused and weak that it does not recognise it as a foreign target at the moment.

It was also interesting that they were keen to get past the 3 week hurdle- this is the time that the DR17 reappeared. I expect that this is the average time (in other units) when they see anitbodies reappearing and causing problems.

I was also thinking what they changes to me have been since having better blood results compared to dialysis. I got on ok with dialysis and stayed quite fit and well but do recognise that it does put a lot of stress on your body. I found

- itching of the body especially after dialysis
- very restrictive diet
- restrictive fluid intake
- fuzzy mind that made it hard to concentrate for long periods of time
- time constraints having to be dialysed 3 times a week
- problems sleeping
- restless leg syndrome
- variable energy levels
- calcium and phosphate lumps on the body (these have already started to dissappear)


I also found that you have to go into a survival mode - that in someways takes each day as it comes and makes you less focused and less driven this is largely down to the restrictions and perhaps lack of expectations from dialysis patients.

Many patients who have come off dialysis have commented to me how hard it is to adapt back to being a transplant patient and not attending dialysis sessions. I can understand this but don't feel the same- sure I miss some of the staff and patients on the nights I dialysed and can understand that people would miss the routine and companionship. Personally I am only to happy to not have to dialyse at the moment and to be honest don't miss the routine etc - I would like to keep in contact with many of the patients and staff because I look at them as friends and am truly honoured to know such a dedicated and kind bunch of people.

Off to watch some of my friends ice skate at the zoo (in the rain) and then going to the pub. First time I have been out for a drink and met up with friends for about 14 weeks. 1/4 year.....

The beach

I am in Devon this weekend at my parents. The first time in about ten weeks when I have had the time and energy to leave Bristol. Went to Charmouth beach today, it is cold and windy. The sea was rough and high but it was good walking down the beach and watching the sunset.

I feel ok - the scar is healed and my muscles are starting to find their correct positions. It is still very much building up strength and confidence but that is fine. I know not to push it to hard but also know the importance of getting moving which helps to get the blood flowing and healing. It also makes you feel a bit more normal. I realise that I have lost quite a bit of fitness. When the process began I could easily run ten miles and walk 30, that was about 10 weeks ago, now I would not be able to run more than 15 metres and would not want to. I think I could at a push walk about 5 miles before I started to feel a bit painful in the scar/kidney area. I can also feel that my conditioning, muscle, breathing and heart rate are not at the same level of fitness as they were. But on the other hand I have just had a major operation and ten weeks off pretty hard core medical treatment that has put a lot of stress on my body.

For people who go through this process - desensitisation I cannot stress how important it is to get fit before you start it has helped me so much. It has enabled me to cope with things much better through the process.

Day 2

Blood results continued to get better and my urine started to become less red (less blood). I was becoming a bit more awake and was eating more. Doctors and nurses keeping a close eye on me, my blood results and urine output. Sunday was fine - I was told that day 4-7 was often when they probabilty of rejection was higher. Something to do with antibody build up.

Day 1 after the transplant

It is interesting that they call day 1 the day after the transplant. To me this is day 2 as a lot can happen in day 1! Day 2 was still a bit of a blur. I remember being hungry - I think I ate some hot chips with salt and vinegar. I was not allowed chips when on dialysis. I also continued to drink.

I was visited by my cousin, his wife and their 3 children. That was really good, they had come to Bristol to go to the science museum and to see us all. It is always funny to see kids in hopsitals especially the younger ones who always look a bit shocked and have been told to be on their best behaviour. I think that most kids naturally act properly in hospitals and often say some of the most inspiring and happy things out of everyone. I like the directness of the questioning and the wonder of things new. They are always interested in how long you are going to be ill and what everything does.

It was great to see them all - such a supportive bunch of people.

The rest of the day was fine. The doctors kept came and checked on me and my results continued to improve. I was passing lots of urine and having liquids pumped into me.

They wanted to get me out of bed. I understand the medical reasons for this but I personally do not get out of bed whem they say I should unless their is a very good reason. I believe that after a big operation when you have had a new organ placed in you that time is a great healer and movement and exertion at this time does no good. I do believe that you should try and move parts of your body and try and deep breath to exercise your lungs and get some of the aneasthetic and breathing tube saliva that accumulated during the operation out of your system. Also it is really uncomfortable moving around at this time. They give you aspirin and heparin which helps to prevent dvt (blood clots). This never used to happen but seems to be a good idea.

I must admit that things have advanced since my last transplant some 20 years ago. You have to take that stupid life bacteria drink. I am still not convinced by drinking bacteria especially when so immunosuppressed - that company must have a good sales team. You have these injections to stop clotting and take aspirin. (This I believe helped to cause some complications later day 4 or 5), you are take a pleurethra of antirejection pills and immunosuppression iv things - this is a good thing. The body does not have a clue who and what it is!!!

But basically it still comes down to the medical staff, nurses, the preparation before the transplant (x match) and a bit of luck. It is interesting going into hospital with the awareness of hospital infection - perhaps this is down to the press but it still does sit on your mind. I really did not want to get an infection as I had very very little immunity to fight anything off. I was aware of if nurses or doctors washed hands and other basic hygiene things. It was apparent that most nurses and doctors were excellent at this but the side was let down by a few, but on the whole I was impressed by the hygiene.

The hospital does suffer from being an old hospital with old buildings and resources. This makes things hard to clean and manage but it still not an excuse.

I still had all the monitoring equipment attached. I remember watching striclty come dancing but don't actually remember what happened - still taking those pain killers.

Not much else to report about this day. Just happy that things were going ok.

Update today

Looked at my blood results for today. My creatinine is 131 I think this is the lowest it has been for almost 20 years! I hope it stays there.

Day of operation

The day of the operation was a bit wierd. Strangely I was not at all nervous for myself. I was more nervous for my Dad and my mum and also a bit nervous for the medical team as they wanted this to be a success for a number of reasons. I was pleased that my brother and sister in law were in Bristol to support all of us and especially mum. Often in hospital it is the people waiting around that have the most stress.

Dad was wheeled off early in the morning around 8.30 ish and I did not leave for theatre until about 12. Going to theatre is always a bit of a strange feeling. As a child I used to absolutely hate it but now I am much more calm - although of course a bit nervous. Waiting around to go and knowing that one of your relatives is already being operated on is not great especially when they have never had an operation before.

When I finally left my mum and brother walked most of the way to the theatre and the nurse came to the "sleep room" the room where they put you to sleep. I was met by two anaesthetists. They kept looking into the theatre obviously waiting for the signal that we were good to go. The nurse was great - they are often the best support at this point in time. Eventually after what felt like hours they got down to business. One of the anaesthetists said lean forward - he was going to give me a nerve block in the lower spine. I was not up for this - I asked him if I had to have it and he said no - I could have it when I was a sleep but it would be more of a risk or I could go without. I opted for the later I had never had it before and it did not appeal to me - I would take the extra little bit of pain when I came round. They then put the funny stuff into the canulla - needle. I actually quite like this feeling now it basically makes your neck go very heavy paralyzes your body and makes your mind go fuzzy. They then gave me the actual injection that puts you to sleep. I used to fight the sleep sensation I would get to about 20 counting in my head - now I don't fight anymore I get to about 8 and basically allow myself to fall asleep.

The next thing I remember was coming round in recovery. I am normally relieved at this stage to still be alive and have sense but my first response this time was to see if dad was ok. He was being sick - so I knew he was fine. I also seem to remember being told it had been a success and that I was passing urine. The consultant who had planned the whole thing was there ensuring that things were working and hoping that I did not have an acute rejectin episode. I am not sure if they can do anything if this happens.

I remember being in quite a lot of pain in the bladder area (actually a lot of pain I think I am becoming a wimp) and having pain killers pumped into me. I was a bit sick but nothing to bad. I went in and out of sleep mode I remember coming back to the ward and being greated by everyone -mum etc and the doctors again. I also remember looking at dad and he was still being sick. He was experiencing the wonders of morphine - I am sure that you need to relax when you have painkillers and not fight the sensation. I was on a new type of iv pain killer that was brilliant. You did not fly round the room or your mind and kept some of your mental faculties.

The rest of that day was sleeping and drinking. I was also recieving liquid through a drip and had an antirejection medicine at some point during the day. Baxilimab. During the first few days I was pumped full of liquid, this is to get the kidney flushed and pumping properly. I think I passed about 4 litres of urine on the first day. That is probably more urine than I have passed in the past 2 years!!! I managed to come off the oxygen within a hour of arriving back from theatre. I hate being on oxygen - I like the feeling that I can breathe on my own.... I was attached to an oxygen monitor, heart monitor and blood pressure machine. I also had a drain coming out of the area where the kidney had come out of and had a catheter into my bladder up my private parts (this will become more relevant when I tell the story of day 3-4 later). I was in arc (acute renal care) and felt pretty good if not a bit sleepy, sore and buzzed up from pain killers. My observations and blood results were looking good. My creatine had halved, my phosphate had halved and my hb had dropped which would be expected after this kind of surgery.

Day 17

So it is 17 days since the transplant. Things are looking positive at the moment. The doctors are keen to get past the 3 week stage as this is when they have seen the most rejection in the type of treatment I have had.

I am feeling good - my body is adjusting to having been sliced open again and I am gaining strength and energy. I am still taking it pretty easy and trying not to do to much. I think that by a month I will start to do some longer walks etc. I could do it now but think it is wise to let the body build up slowly.

I ahve just finished writing a document for the doctors at Southmead about a patients perspective on desensitization protocol. I felt this was important as it illustrated how good the team was and suggested some things that would make the process easier.

I still aim to do a full update on the last 2 weeks and a bit as I feel that anyone going through this treatment may find it interesting and informative.

Into hospital

I went into hospital on the 1st with dad (who was to give me the kidney) We arrived at about 3pm even though they advised 2pm. You always wait around for a bed and stuff to be done. I got a bed pretty quickly whilst dad had to wait. We were in ARC (Acute Renal Care) over the day I briefly saw the anethetist and surgeon. This was my 37th General Anesthetic so there was little to discuss.

Out obs were taken regularly - things were fine. It was a shame that they did not have both beds available - this just added to dads stress levels. If you have never been in hospital before you don't expect this type of thing.

The day of the operation to follow....

General Update

For those that have been keeping track of my blog, sorry for not posting for the last couple of weeks. As most of you aware the transplant happened on the 2nd and I was released from hospital on Monday. I am still being closely monitored and as the doctor said am still in the amber alert zone...

Firstly I would like to thank everyone who has asked how things are going etc- it has been nice to hear that people are and were thinking of me. Thanks again.

One of the main aims of this blog is to try and record my thoughts and experiences for people who will go through the same treatment as myself. I think it is important that I take the time to document what happened to me when I was in hospital - I will try and do this is some detail. I warn you that some of it will be unpleasant reading but I think it is worth documenting.

It is still very early days for this transplant and rejection could take place at anytime - this of course keeps the stress levels pretty high.

Out

I have been released from hospital today. Things at the moment are going well - but is really day by day process. Have had a tough couple of weeks which I aim to retel over the coming few weeks.

Last day of freedom

I had 3 units of blood last night on dialysis. Hb went from 6.5 to 9.1 which is good. Their was a lot of debate over the blood which was only solved by phoning my consultant directly.

Tomorrow I go into hospital for the transplant on Friday. I still have a cross match to get through and a screen to check that I don't have any bugs in my system. I am dialysing early so that they can get the bloods into the lab in the morning ready for the cross match.

Plasma today was fine although I arrived late having over slept. They have been brilliant at the blood unit - so professional and friendly. A great team

I am going to try and keep the blog updated from hospital. May have to ask mum to do some updating. I will probably in hospital for at least 2/3 weeks.

Visitors

I have been keeping my quarantine for the past 2 months and will continue to do it for perhaps 6 weeks after the transplant - this is to try and prevent picking up any bugs etc. I have thus decided that the visitors I would like to see at hospital are close family and relatives and medical staff.

This may seem harsh but I just want to try and be as careful as possible.

Could be quite a week

Plasma was ok today - hb levels stayed the same at 6.5. In preperation for the transplant (probably on Friday) if everything stays on track, I am going to have 3 units of blood on dialysis tomorrow. My hb is dangerously low for the operation so the blood should raise that. I was going to have an iron infusion today - I went to the ward and the nurses started preping the dose etc and looking for veins. I have no veins and the few that I do have I treasure. As the nurse was looking my consultant walked in and we discussed the actually benefit and need for the iron. As I was having blood the next day - we decided that I did not need Iron so I walked out.

I followed him into the blood room to have a cross match blood test (taken from the fistula) This is needed for the blood tomorrow. I mentioned to the doctor that the previous times I have had blood I have almost gone into anaphlactic shock. I got bumps all over my body and struggled to breathe. The blood is now filtered to remove the white blood cells and thus one should not react to it.

They will do another cross match for the transplant on Thrusday to ensure that all is good.

Emotionally I feel stable and calm, I think this is because I have become so used to hospitals, tests, dialysis, plasma over the past 2 years and especially the past 2 months. I realise that this whole process has been an emotional rollercoaster for many people (perhaps I have been in the easiest position in that stuff is just done to me and I am at the centre of it - I also have very little choice). The doctors that are trying this process and have worked hard to get to this stage - I reckon must feel some both emotional and professional stress and of course my close family and friends have had to be part of the waiting game and the treatment time.

I think in future patients should be told that the process can take 3 months - this is what I was originally told but for some reason it was then suddenly publicsed that it would only take a month. In my opinion it is much better to tell patients and all involved the longer time frame. This reduces expectation and building up of "final" stress levels.

Something people need to understand is that when the operation (transplant) is done this is just the next stage of this process. There are sure to be more obstacles and challenges ahead both in the short term, medium term and long term. Hopefully the transplant will take hold and from there we will see how things stablise. I think it is important that people realise that a transplant organ always needs special care and medical attention. It is not a natural place for it but medicine is becoming better and organ survival is becoming better.

Of to watch the Simpsons on the tv....

Am I god?

I noticed today that someone had found my blog with the search term "a couple of paragraphs that explain life" I repeated this exercise and typed it into google. The blog appears second - thus according to google (perhaps the current fountain of all knowledge) I have written a couple of paragraphs that explain life. O how I wish

mini cheddars, tea and clapton

I am sitting here drinking tea, eating mini cheddars and listening to Eric Clapton. I have an urge to eat mini cheddars - I used to get this urge when I was young and ill. Weird. Perhaps it is the bicarbonate in them?

I read something interesting the other day - if you have a desire to chew or such ice there is a change that you need more iron and could be anaemic. This must be some sort of evolutionary thing - iron from hard objects?

I had a letter from a journalist today who noticed the article in the evening post. She wants to write an article on my experiences and try and get it submitted to the main uk papers. I am a bit hesitant - not sure I want my life story displayed on the papers. Might land up being persuade by the paparrazzi :-) I will probably contact her and see what she is thinking of doing.

I think I know what it is like being a caged animal. It is almost ten weeks since I have been in quarantine. I have basically not been into shops or into groups of people. My life is to go to hospital and then back to the flat. Sometimes on a Sat I visit my parents or brother. We got stuck in a traffic jam last Friday going to my Brothers - for about 1.5 hours. It is the first time I actually enjoyed it - just looking at society and peoples emotions. A caged animal must get pretty bored - although perhaps there brains don't think the same as ours. But I am sure they are conditioned to be moving about and exploring.

I am finding that my concentration span is declining - I find it hard to focus on something for extended periods of time. This I am sure is from low hb - basically not getting enough oxygen to the brain - when you think your brain needs more oxygen and if you have low hb it requires energy to do this and you get tired.

Nothing else to report..

Sometimes the NHS rocks

Dialysis was fine today. Arrived early to try and catch up with consultant but he was not around. So went and had a meal in the canteen. The dialysis unit was busy - there was one elderly gentlemen who gets confused on dialysis and shouts out " Help me" and other weird stuff.

I feel sorry for him but it did make me chuckle. The staff tell him he has x minutes left and he then asks How much to get free? If an inspector walked into the unit and this guy was shouting it would look like the staff did not care but quite the reverse is actually happening. Don't immediately judge all situations.

I am anaemic, my named nurse, spoke to me about it and also about Iron. She managed to track down a doctor and we had a discussion about getting an extra dose. The junior doctor was excellent - he actually appeared interested and listened asking quesyions about my health and any side effects from the anemia. He prescribed the Iron and I also had eypo.

My nurse also said that the doctors had requested hb levels every Tuesday, this is obviously a doctor reviewing all the results each month. I decided that I would not have blood done today as I had it done yesterday and my hb levels were done then. Don't waste blood.... My named nurse agreed.

When other people go through this treatment I think they need to be careful about hb levels.

No news on cross matches for this week. I am listening to a cd that my mates made me - it rocks also.

Press

Anyone who is interested here is the article in the local paper following on from the BBC Radio Bristol interview.


http://www.thisisbristol.co.uk/

Hospital infections c.diff and mrsa

Over the past few months hospital infections have become been highlighted in the press. For me these infections are of concern due to my immunity being so depleted from all the treatment I am getting.

Both mrsa and c diff occur in nature and tend to infect people who are ill or old. It is worth noting that the alcohol spray/gel that you get on the doors of hospitals does not kill c diff. The only way to get rid off it is to wash your hands with soap and water and ensure that clothing is clean.

I have a number of possible ideas to why these infections are increasing in number. The first is that the hospitals and public health are detecting the infections and classifying them this obviosuly increases them.

The second is that the pressure to reduce waiting times means that hospitals are running at capacity and bed turn around times are high - these reduces time for cleaning and airing of wards. It also means that more people are passing through the wards.

The third I believe comes down to staffing changes. The different grades of nurses and cleaners is, in my opinion, causing an interesting problem. Within the nursing grading there is a hierarchy that has been there since nursing started. This hierarchy is now being put in an inbalance. Here is my postulation, the cleaning staff are often low paid, low skilled workers who are doing a very important job but are not allowed the time to do the job. They come in are supervised to get the job done and signed off and then they go to another part of the hospital.

Many of the Health Care Assistants who are also low paid and low skilled tend to have more contact with the patients. They basically are supposed to do the job of ensuring the patient is fed, clean, bathed and toilet duties.

The nursing staff are responsible for the patient day to day welfare on the ward. Many of the staff nurses have moved from abroad and in my experience do an excellent job. Interestingly many of the hca, in my opinion, have been born and educated in this country. I believe that the hca (untrained nursing staff) are part of the weak link in the control of infection.

I also believe that they needs to better training and audits of senior nursing staff (sisters and senior staff nurses). In my experience the majority are truly excellent but you get a few who are useless and a hinderence to both there staff and the patiens. This is a big problem when you are dealing with peoples lives.

Gordon Browns "Deep clean every hospital" will not help in my opinion. You need to go deeper than that you need to give the control of hospitals back to the doctors and consultants who have a far better understanding and medical training of what is truly going on and can also see who and where the weak links are. You then need to empower these doctors to be able to make decisions.

Perhaps the biggest problem faced is that the population is ageing (80% of c diff infections occur in people over 65). When you are young and have to share wards with people who are over 70 you feel at risk. I cant see a way round this unless you start dividing wards into age groups. Perhaps that is an idea??

Search

Some one found this blog by doing the following search


1957, dr cp richter rats water hope

I find that interesting. It is the article that I referred to in the blog

6.5

Went to Woking for a couple of days this Weekend. Well left after Friday plasma and returned for dialysis on Sunday. Had my birthday at my brothers and saw my 2 month old niece who is great. It was a nice couple of days.

Plasma and dialysis have been ok - my hb has continued to drop 6.5 today. I would have had a blood transfusion by now if they were not worried about the antibodies etc. Every time I think the hb has got better the lower it goes!

Waiting for this weeks cross match results - it is now my 8 week. I have had a total of about 60 litres of plasma removed over this time and replaced and have been on machines for about 140 hours over the last 7/8 weeks. It is like having a full time job with one day a week off when you feel to tired to do too much anyway. Hopefully it will be all worth it in the end.

I was told that I was in the evening post last Saturday - hope to get a copy off that soon

target weight

Just had dialysis. I think I am losing weight (no real surprise!) My target weight is now back to 65.5kg from 66.5kg. Dialysis was fine and was home by 11pm

Felt better today - still tired but not as weird. I did not feel ill yesterday just weird. See how it goes tomorrow.

I may do a section on c. diff and mrsa tomorrow and my thoughts on them

1 more week

Not to much to say. Had bloods done today on plasma. hb is 7.1 this is another drop of about .3 but that is less than normal weekly drops of 1. So thats ok - if I was a normal person and not having this treatment they would have probably have given me a blood transfusion.

I had my picture taken by the evening post who are doing some sort of article on transplantation.

Felt weird after plasma - had to go to bed for about 3 hours and sleep, but felt better after that. Can't really explain the feeling except that it was weird.

Still waiting for more of an idea of what th antibodies in my blood are and how they are going to move forward.

Will try and write more tomorrow.

Cross matching, plasma and press

Quite a bit to update. Firstly I am feeling tired - due to low hb and am finding if I walk quickly I get out of breath. This is not due to some sudden loss of fitness, it is due to low hb. I basically can't get enough oxygen to my body and thus it gets tired and breathless.

The cross match results showed little change - the original antibody seems to be controlled now. But we have these wierd antibodies that are giving positive cross match results. Hopefully roche will come back with some good news.

Press. On plasma this morning I was phoned by one of the transplant coordinators to ask if I would go on the radio. An hour later I was live on BBC Bristol Radio taking part in a discussion about transplants and there effects. I now have the evening post wanting to do an article on me and transplant - appearing next week- I guess. I am always a bit reserved about the press but think that this is a good cause and that there heart is in the right place. We will see.

weekend

Had a good weekend. Plasma was fine on Friday morning. Drove down to my parents after and had sleep in the afternoon. My brother and sister in law drove down from Woking with my 2 month old niece.

On Saturday we had a good day going to Lyme Regis and playing mini golf (outdoors so did not come to close to other people and when we had a ice cream I did not eat the cone because my hands had been touching the ball, club and mini golf course and I had not washed my hands.) we followed this with England and France winning the Rugby. On Sunday drove back to Bristol for dialysis. My niece is lovely - growing fast and is lucky to have such good parents.

Dialysis was fine although I had a badheadache afterwards - thought this was from being dry but not so sure now. Have increased target weight by 1kg but this did not seem to help?

Plasma this morning was fine. Although my hb has dropped to 7.3 - I thought it has stabalised. This is now getting low. The doctor has upped my eypo but this takes at least a month to start working. They took cross matching bloods, the doctor did not arrive to collect them so I took them directly to the consultant. I think the blood unit were amazed that I was phoning my consultant on his mobile. But that seems to work best all round. As things are quite complicated with all the procedures at the mo.

The next potential date for transplant seems to be the 2nd Nov but this is not set in stone. If the treatment works before then I would guess that they will do the transplant sooner than later - helping to reduce the time I am being immunosuppressed.

Autobiography - in a paragraph

A couple of people have asked me to provide a couple of paragraphs providing a brief history of my medical treatment and where I stand at the moment. So here goes...

I was born in South Africa and was diagnosed with kidney problems at the age of 6 months (at a brilliant hospital called The red cross hospital Cape Town). I remember going for tests and procedures. During my life I have always thrown up complications and had to have things done. I had my tonsells and adenoids taken out in the first few years of my life and suffered from chest problems.

At 7 we moved to the UK and I transferred to Great Ormond Street for a brief while and then to Bristol. Quite soon after this my condition began to deteriate and I had to go onto dialysis. Dialysis consisted of having a tube put into your stomach and draining liquid in and out. This removed toxins and liquid through osmosis.

My mum decided to give me a kidney - this was quite early days for transplants and for live donors. I received the transplant, it worked brillianty to begin with. I remember drinking fruit juice - something that I had not been able to do for over 5 years before hand. The kidney rejected about 6 months after the transplant and I went back onto dialysis.

Dialysis during those days were quite different. Firstly epo and haemoglobin substitute was not available. I was the first child in the country to be given it in about 1986. This drug was a revolution to us dialysis patient and continues to be. It provides energy basically without energy your body and brain suffers.

Unfortunately my dialysis began to deteriote during my first year at senior school. I went in for an operation to replace the tube which I expected to spend a week in hospital and came out ten months later with a new kidney having been very close to death. Basically my stomach (peritinium?) had become so thick fluid could not pass through it effectively. They tried a number of times to fix this but with no success. I had so many toxins in my body that I had no appetite and was fed through the nose during the evening. At one point I had a drip in 3 of my limbs and a line nto my heart through my shoulder. I was on haemodialysis at this stage - they did not do fistulas on children in those days and the line was the only solution. I had a temperature for 6 months that appeared at about 4pm in the afternoon and lasted all night. I went through about every procedure you can think of to find this temp but it was never found.It dissapeared after the transplant.

As I was getting sicker and sicker I was placed on the European Emergency transplant list and was top of the list. Luckily a transplant came - it was crossed matched and took 2 weeks to do anything but then started and got revved up. Over the next few weeks I had all the tubes out and went home - with lots of blood tests to check that the kidney was behaving.

During my transplant days I lived life to the full (I did not just say it). I played an active role in school life , was school hockey captain, school tennis champion, spent much of my life camping and doing teenage things. I played hockey for a mens league team. I took up skiing and loved it with much competition between my brother we became pretty good. I did ok at school and went onto university at Bristol Uni to study Geology and Biology. I have also studied a MSc IT and and PGCE in Science.

Sadly (but transplants don't always last forever) the transplant failed and I am back on dialysis. I have been on dialysis for almost 2 years and undergoing treatment for my 3rd transplant.

The 3rd transplant treatment is complicated because I have antibodies that react with the donor. They are trying a new technique on me that requires heavy immunosuppression and plasmapherisis. The idea is to stop my body creating antibodies and to remove any that are in the blood through plasmaphersis. Plasma bascially removes 60% of your blood plasma 3 times a week. I also dialyse 3 times a week at the moment as well to keep the toxins and liquid out of the blood.

The treatment at the moment is showing some odd results and headscratching. But I hope (we hope) that this will be solved and the transplant will be done completing my 35 operation and the next stage of my life.

I hope this helps to explain were I am coming from and give you a bit of perspective about the blog.

Orienteering

Finished writing an article for Compass sport - the national orienteering magazine. I will publish the article here once it has been published in the magazine and on the web. I was delighted to write an article for me as orienteering (which I discovered last year) has provided me with the incentive to get fit, get tougher physically and to get out and about.

It is a good sport for a number of reasons and particulary good for kidney dialysis patient (I believe) because it offer the following

1. Go at your own speed but in a competition environment
2. Get out and meet new people
3. See you fitness and map reading improve.
4. Not high impact on the arms (fistula consideration) unless you fall!
5. Gets your heart rate up
6. Makes you sweat which removes both liquids and toxins. (this makes me feel so much better - it is like an extra dialysis)

I could go on but I think you get the point. To find out more about orienteering visit http://www.compasssport.co.uk/

2nd post for the day.

The fund raising is going great. Over £2000 including tax rebate. Also received this email from Kidney Research

"Kidney Research UK are very pleased to benefit from the support of Ian Purchase, who is asking friends and family to help him raise his amazing target of £1,000,000. Kidney Research UK would encourage anyone to support Ian in his aim of raising this amount of money and thereby help us fund vital research into kidney disease. The lives of over three million people in the UK are under threat from chronic kidney disease, a devastating and debilitating condition that can strike anyone at any time. It is because of the generous support of the public and Individuals such as Ian that we are able to fund life-saving research and offer a brighter future to kidney patients."

Plasma and Iron

Back from Plasma - feel ok today imagine that I will feel tired later and need a sleep. I actually enjoyed plasma today - it is quite boring sitting at home alone and not being able to go out because of quarantine. The staff at the blood service are happy people who can take a joke and joke back. They are also very caring. It is slightly different to dialysis in the fact that plasma is one on one nursing whilst dialysis is not. This means that you talk and get to know the plasma nurses better and they have a better idea of how you are feeling.

I had iron for the first time in a month last night- there had been some confusion and it had been missed for a while. My iron had dropped to a low level. Iron is important as it helps hb carry oxygen around the body. I actually feel a lot better today with a bit more energy and think this may be down to iron. It could also be all in the mind.

I have not heard anything about the cross match tests from monday- so I presume treatment carries on as is.

I am feeling ok both physically and mentally which is good, the donations are brilliant and it gives me something to do.

Hope

I found this quote in a book on Lance Armstrong - Tour de Force. I think it is fascinating

"In 1957, Dr. c.p Richter of the Psychobiological Laboratory of John Hopkins Medical School carried out an experiment that attempted to measure the motivational effect of hope. The experiments involved placing rats in cylinders of water thirty inches deep and eight inches wide. After a short time, half of the rats were momentarily rescued - lifter out of the cylinder for a few seconds, then put back into the water. The other half were not. The group that was given hope swam for more than three days. The other rats drowned almost immediately."

I think that we can learn and understand a lot from this. Many medical patients look for hope through science and research such as Kidney Research. If you want to add hope visit www.justgiving.com/amillionthanks

Monday

I was up early today - had to be at plasma for 8.30 so that they could fit another patient in after me. Had a bad headache after dialysis last night - not sure if I am to dry or perhaps linked to hb. Woke up and it had gone.

Had about 9 tubes of blood done for the cross matching (it's that time of week.) Apart from that Plasma went fine - at the end during rinse back I tasted the citrate and also felt flushed interestingly my temp want from 36.5 to 37.1 over half an hour. I am sure I had a minor reaction.

Had an email from the Doc explaining his latest thinking and how they are trying to prove things. It will be interesting what the results show today.

The fundraising is going well. We have reached over a £1000 that is brilliant- a massive thank you to everyone who has donated, told people about the idea or both. The idea also seems to be working in which friends of friends are spreading the word. This is so good - it makes me excited.

If you are reading this blog for the first time. Visit www.justgiving.com/amillionthanks to find out about our fundraising effort.

The popularity of this blog has grown rapidly over the past week which makes it feel more worthwhile recording my thoughts and experiences.

Will post more later. If you any questions or comments please leave them below.

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.