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.