Me and my journey through kidney disease . . . .

Being New Years Eve I thought I would reflect back on the past year and what a year it has been!! In January, Trev and I commenced our 10th year together, I can't believe how quickly that time has flown by!  It only feels like yesterday when we met! In February I received the most exciting letter of my life from the Flora Day Committee, asking me to be in the leading set of the Midday Dance!  The mix of emotions I felt when I received the letter ranged from jubilation to shock to being in tears!!  I rode this high all the way until May the 8th when I finally had my dream come true!! Trev's 40th Birthday was in July so me, Anita and Richard spent many a day planning his surprise birthday holiday to Tunisia!  On the morning when we were to leave and I "let the cat out of the bag" Trev would not believe me and it took some persuading!  He could not believe that everyone including his colleagues were "in on it"!! In July Anita and Richard had the honour of g

This Christmas, although it has been wonderful, it has also shown to me loud and clear that I am very poorly and now have many limitations.  My Christmas celebrations started on Christmas Eve by going out with great friends for lunch.  I felt absolutely great and enjoyed myself for about five hours. I had to go straight home to bed but I felt like I had before I was ill which made me very happy indeed!  I woke up early on Christmas morning to see that Father Christmas had visited and left Trev and I a sack of pressies each!  I then went visiting my dad and his partner Jen, then my brother and his family and finally to my mum's where we were to have Christmas lunch. I was still feeling on top of the world and was thinking that I would be up for my friends to come up to our house in the evening as is traditional for us (although the normal copious amounts of alcohol would not be consumed by me!!)  However, as I started lunch exhaustion hit me like a sledge hammer and I spent the e

As expected the week just gone was an interesting one!  It started with my dialysis training at Treliske on Tuesday.  As I'm sure you can imagine, I was apprehensive about being dialysed for the first time! When I arrived at the hospital, the dialysis nurse put me at ease straight away.  She slowly went through the procedure for setting up the dialysis equipment then "plugged me in" so I would experience how it feels. It was a funny sensation, as you felt your insides filling up.  The very first bit of solution is cold but then the rest has been warmed by the machine.  Once the fluid is inside it is left there for a period of time, where, via osmosis and diffusion , impurities and toxins are taken out of your system.  Then the fluid is removed before the process is repeated.  Now that is the bit which I wasn't so keen on.  When almost all of the fluid is removed you can sometimes feel a little pinch inside.  The best way I can describe it is like when you drink the

Some days I look at how my life has changed and wonder how on earth I cope with the information which I am now bombarded with on a daily basis!  I have had the steepest learning curve over the last three months and I think that I am just about to reach its peak!! Yesterday I was delivered all of my dialysis consumables and machine, what I was left with is below: Now, I was expecting a fair amount of stuff but the fact it filled an entire room was somewhat of a surprise!  I was also surprised about how many bits and bobs there were which I now have to learn how to assemble in order to dialyse on a daily basis!! Today I had to go to Treliske for my tubes to be flushed through, yuck what a horrid thought!!  I also had the first look at my scar going down from my belly button!  As Anita kindly pointed out to me it looks like a pork loin or pasty crust!!  I have been assured that there will be very little scar once it has healed!! I also met up with my dietitian this afternoon, as wit

I have been trying to think of an adequate word to describe my feelings yesterday when I received some much waited news and all I could come up with is WOWZERS!  A favorite word of mine at the moment!  Anyhow, lets start at the beginning of my day yesterday. After yet another sleepless night I packed my bag ready for my trip to hospital to have my Peritoneal Dialysis Catheter inserted (for those dorks out there like me who likes to know the proper medical term this is a Tenchkoff Catheter!) I have never experienced a general anesthetic before so all this is very new to me!  However, when I arrived at the hospital I had the welcomed surprise that a friend of mine Michelle was working in the ward where I was to be looked after, she put me at ease straight away. After going through endless forms, meeting the surgeon and anesthetist I had to put on the oh so fetching hospital gown and then make the walk to the operating theatres.  It was the strangest of feeling! I was chatting away to

Here we have a quick update on yesterdays activities. I woke up early, having actually slept very little to discover that my 5% had dropped to 4%, not a good start to the day!  4% feels like such a small number to be maintaining so many important functions in my body! Thankfully more snow had not fallen so me and mum were able to make the journey to Plymouth.  We got there in ample time for mum to make her appointment in the Nuclear Medicine Department.  As with last time mum had various injections and then her blood taken at specific intervals to see how well her kidneys performed under stress. Next we had the all important appointment with the Surgeon.  To my surprise he did not seem at all aware of the fact that he was supposed to be making a decision that day or that he was considering my transplant operation in December at all!!  The Surgeon along with a nurse that I had not previously met literally shattered my hopes in one minute flat in the public waiting room!! What I have

It has been over a fortnight since I have updated my blog as nothing has happened which was worthy of note!!  However, this week it has all "kicked off"!! On Tuesday morning I went for my usual blood extraction ready for my appointment with my consultant on Thursday.  I have been feeling fairly well for the last week so I was not concerned with my results at all, especially as they seem to have stabilised over the last two months. However, on Thursday morning I logged onto the Renal Patient View to discover that my kidney function had reduced to 5% You may think well that's only a 1% but for me this is actually a 16% reduction in my kidney function!! I instantly knew what this would mean for me.  My consultant was constantly worrying about me not being on dialysis at 6% so that deterioration would mean dialysis. At my outpatients appointment it transpired that my blood pressure had also increased substantially, no surprise I thought with the shock I had received that

Now then, I have to say that yesterday was a very long day waiting for the phone to ring!!  In the end, I called the hospital at 12:00 as I could not wait any longer, this is a case of life or dialysis you know!! Well, at that point it was still inconclusive!  What I did know though is that Mum has 51% in her right kidney and 49% in the left.  This is a good thing as if Mum had one kidney working well and the other not, the operation could not go ahead.  I suppose I ought to have the left though as I also have my 6%!!  The hospital also confirmed that Mum had a kidney function using the normal tests in excess of 90% which is great. However, the surgeon still had to review the results of the CT Scan and the more stringent kidney tests before an answer could be given to me.  I have to say, this is now beginning to do my head in!! Today I had a call from the hospital to say that one of the tests mum had was inconclusive and needed to be done again.  Boo!!  That won't be until the

Well, what a full on two days they were!!  Mum and I left Helston on Tuesday at 8:30 and made our way up to Derriford.  Our first appointment was in the Renal outpatients department.  It was here that Mum and I had blood taken for the cross matching.  This is where a negative result is a good thing!!   From here on all the tests performed were on Mum as the two days only aim is to ensure that Mum would not be detrimentally affected if she were to donate one of her kidneys to me. Firstly we made our way to the Nuclear Medicine department where mum was to have an Isotope Renogram and blood tests which will test how well her kidneys are working. Mum was injected with three drugs, the first one to make the kidneys work harder, the second so they could be seen on the renogram and the third to see how quickly the kidneys clear.  Mum was then placed between two plates which were a gamma camera.  Slowly as the injected drugs began to go through mum's system, her kidneys became clear on

We have good news everyone!!  I have just taken a call from the hospital and it turns out that I am a three out of six match with mum and a one out of six match with Anita.  Both of them are potentially able to donate a kidney to me!! Mum will still be going forward with me at present and on Tuesday when mum is in hospital for all of her checks we will also be having our final test performed which is the cross matching.  If the cross match is positive I will not be able to have the transplant from mum as the kidney would die within minutes.  Lets hope that does not happen!! I can't believe that it is almost the end of October, almost two months since I found out I had kidney failure and two/three months until I potentially have a transplant!!  I have to say, I can't complain with the service I have received from the NHS one bit!

I am writing this blog to ask you all for help!!  I'm sure it will sound like a long way away, but on the 10th March it is World Kidney Day and I would like to organise a fundraising event. I have a few ideas but they are really run of the mill and I would like to add something original!! I was thinking about a disco night, maybe wearing purple for the day, a sponsored walk, recycling old mobile phones etc etc.  Is there anyone out there who can help with some more ideas?  I need something new and exciting to draw in the crowds and make it a worthwhile event. The event will be in aid of Kidney Research UK and will hopefully also raise awareness to kidney failure and the vital job they do! Come on you imaginative people, please help me organise a cracking event ;-)

This week has been very uneventful!!  Nothing of much interest has happened at all. I have been very tired and have felt extremely nauseous again which has put me off my food, lost 4kg so not all bad!  The doctor wasn't so pleased!! My excitement of getting 7% kidney function for my last outpatients appointment was short lived and promptly went back to 6% at its first opportunity!!  My creatinine is also on the rise again.  However still not on dialysis and no plans to go onto it at present!  Yay! We are still waiting for the results of the tissue typing tests so, although mum is being rushed through all of the donor tests, we still do not know if she is a match.  Please keep your fingers crossed! Sleeping has been my worst problem, or lack of it anyway!  The minute it has been time to turn the lights off my eyes have become the size of saucers and I have tossed and turned all night, maybe getting just a few hours of sleep.  However, I think this has now been resolved.  I have

For those of you who don't know I am an accountant and I work 50% of my time on a self employed basis and the other 50% of my time I am employed by the wonderful organic children's wear company "Frugi". I just thought I would write a very quick blog to say thank you.  All of my clients and Frugi have been so understanding and flexible with me since I have been ill, I know that my absences causes stress and problems to those left holding the reins, but no-one has complained. Frugi in particular have been great, with visits in hospital, organic chocolates, caring colleagues and as much time off as is required!  Who could ask for any more?  So that's all I wanted to say, thank you to my Fab employer Frugi and all of my clients who are tolerating my reduced reliability!!

I thought I would write a blog about this as, if like me you have never been ill (well, I thought I hadn't anyway!) you may not know what help or alternatives to prescription charges there are. Last week I had to get my drugs on prescription for the first time as previously they had all been given to me at the hospital.  I knew that the prescription charge is £7.20 but having never had lots of drugs I hadn't thought about whether this was per prescription or per item.  Well, my prescription charge was £28.80 and I had enough medication for a month. This is a huge amount of money when you consider that I am now going to be on several medications for the rest of my life so I have been looking to see if maybe there is any help available. Well the first thing I have discovered is if I go onto dialysis and have a fistula or catheter fitted I can get a medical exemption certificate.  That is good if I have to go onto dialysis, but as you know I am trying to avoid that! Obviously

Yesterday Mum and I went up to Derriford Hospital for the Transplant Assessment Clinic.  We left home at 9:30 and made our way up to Plymouth.  Derriford Hospital is HUGE!  It is like a bus terminal as you walk in as there are just sooo many people everywhere! Firstly we had a transplant seminar which explained: Where the organs come from (the types of living and dead donors) How you are matched for a kidney (if from the transplant list) What happens before, during and after the operation What to expect post op (many tubes inserted into you) How long you are likely to stay in hospital (on average 10 days) Rejection of the kidney The many drugs you have to take for life and their lovely side effects! There was loads of other info, but this is some of it which I can remember at the moment. After the seminar both Mum and I were weighed, measured, had our blood pressure taken and loads of blood taken.  I think Mum had six vials taken and I had four.  Not ideal when your anemic!!

OMG!!  I don't know whether to be excited, nervous, scared or what!!  However, I have just had a call from the hospital to say that I am going to be "fast tracked"!! Due to the fact that I am currently "holding my own" and not requiring dialysis, the hospital are trying to get my transplant done as soon as possible.  There is now a possibility, if all goes to plan, that I will have my transplant before Christmas!!!!  How fab is that? It is all going to be a bit scary for my wonderful Mum, bless her, as she is likely to be the best match, she is being fast tracked with me.  We are going to Derriford on Wednesday where I will meet my surgeon and mum will have her initial tests, best check that she has two kidneys before I nick one!! I laughed as Treliske had to prove to Derriford that I am a "crash lander" as they describe it, ie I turn up at a very late stage and need my treatment ASAP.  The Doctor says that this doesn't tend to happen anymore, t

I thought that this week I would have loads to write about as I was meeting with the donor nurse on Tuesday and having my outpatients appointment on Thursday, where I was prepared for the doctor to tell me that I had to start dialysis, however, nothing ever goes to plan . . . . Last week my list of potential donors went to the donor nurse and they had their initial blood test to establish if they have a compatible blood group with me.  Being an O+ I can have a donor with O+ or O- but none of the other blood groups.  The results were due on Monday and we seemed to wait for ages for the call to confirm if anyone was compatible.  Trev was knocked out at this point as he is an A+.  Mum and Anita however were "through to the second round"!!  A meeting was then booked for us all to see the donor nurse on Tuesday and to have the tissue typing tests. On Tuesday, I picked up mum and Anita and made our way to Treliske for our appointment.  We were all excited and apprehensive with m

In the post today I received my log in for the "Renal Patients View".  This is a  website where you can log in and see your test results and other information. This got me thinking whether this was good or bad.  I know that I will probably look at it way too often and maybe actually get obsessed, for instance, I had blood taken today so I am sure that several times tomorrow and the day after I will be logging in until I can see my results. I have also already gone through my results in detail and this could be rather scary for the fainthearted!  For instance: Urea (Toxin Clearance) - Score is very high and suggests serious illness (I suppose I knew that!) Creatinine (Toxin Clearance) - Severe kidney failure (most dialysis patients have a score over 300 and mine is over 700!!) Potassium - mine is fine at the moment and that is the one I need to keep under control with my diet. There are then several tests regarding bone disease, my results are in the ok range but right a

I forgot about this when I wrote the blog about the High Dependency Unit. The doctors at that point were trying to establish if my high blood pressure came first and caused the kidney failure or if the kidney failure was causing the high blood pressure. Trev decided to call the DDRC (Diving Diseases Research Centre) as I had been diving in July in Tunisia, he wanted to see what impact it would have had if my blood pressure had been at the extremely high level of 250/150.  The response chilled me to my bones, they said that without a doubt I would have died at the shallow depth of ten meters.  The thing is, in August I had booked for a days diving for my birthday.  I was feeling under the weather then but I would not have let that stop me going.  This dive would most likely have been a minimum of twenty meters in depth. The day before my birthday the dive was cancelled, I was mad at the time as I was really looking forward to going.  Now I think someone must have been looking out fo

On Thursday I had to go to my first outpatients appointment and I went on my own.  I did not have to go on my own, but I figure that I may as well get used to it as this is now how my life is going to be. As well as going through my blood results, checking my waterworks and blood pressure I had to try and do the dreaded injection myself again!  Now, this may sound bonkers but I had spent some time just holding the needle and getting used to the feel of it in my hand!  The injection doesn't hurt so there is no reason whatsoever why I can't do it myself.  Well I would just like to say that I am no longer incompetent!!  Whoopee!! Once all the boring stuff had been done my doctor came in to see me.  I could tell by his face that something was bothering him.  He basically said that he is battling with the decision of whether to put me on dialysis or not.  He said that he didn't have any patients with function as low as mine who were not on dialysis and he was worried that I ma

On Monday 13th September I went back to work.  I am absolutely determined that I am going to lead a normal life and not "become a patient" (this was a phrase that the doctor used which I particularly like!!)  It would be all too simple to stay at home and feel sorry for myself but where would that get me? In the beginning part of the week I found that my brain was not working adequately!  I had difficulty focusing on the job in hand so I allocated myself easy jobs which did not require much brainpower!  The doctor had joked that I would not be as bright as I had much more oxygen going to my brain when I had a high blood pressure!! Each evening when I came home from work I would have to go straight to bed and I would spend the entire evening snoozing and then would sleep for a massive ten hours or so!  I have always been an eight hour a night person but this is ridiculous!! However, I did it!!  I worked the entire week except for the times I had to go to hospital, for this

On the 11th September my good friend Tara got married to David.  I was invited to the whole shebang and I was absolutely determined that I would go and enjoy the entire day.  Thankfully it was a late start so I spent the day sleeping and resting as much as possible. One bonus of being in hospital before the wedding was I lost the few pounds I needed to make my outfit look perfect!!  As they say, every cloud has a silver lining!! The wedding was lovely, Tara looked stunning and David very suave and sophisticated!!  The setting was beautiful also and I particularly loved the peacocks wondering around in the grounds. By the time we got to the reception I was tired and cold, I think the coldness is a side effect of the tablets I am taking as I am constantly on the chilly side! The meal was really nice but I failed to avoid the jacket potatoes which are on my "banned" food list!  Ooops!!  I did have a glass of the bubbly stuff which is on my "allowed" list.  From now

I have found my reaction very odd since I have discovered that I have kidney failure.  I have not shed a tear nor worried about what I am going to go through in the future.  I have taken it in my stride and comforted family and friends who have found the news difficult to handle. However, every time someone has been generous enough to offer me one of their kidneys I have had trouble stopping tears coming to my eyes.  Basically they are offering me the gift of life, an offer so large it is hard to comprehend.  So thank you, you know who you are and I will never forget the massive sacrifice you were willing to make for me.  Sometime in the future, hopefully one of you will have been found to be compatible and I will have one of your kidneys and leading a normal life :-)

Trev took time off work so that I would not be alone on my return home from hospital.  I had the best nights sleep back in my own bed!  I felt tired but no different to normal, it felt a little sureal that I had just discovered that I was going to be going through the most testing time of my life. On Thursday 9th September I had several appointments at the hospital.  The first was at the emergency eye clinic.  They told me that I had damage in three spots due to the high blood pressure but that would not be permanent damage.  This was a huge relief.  The thought of damaged eyesight scared me more than my kidney troubles. Next I had an appointment with the anemia nurse.  I didn't know I had anemia until then but she spent time explaining to me that the kidneys produced the hormone which tells your bone marrow to produce red blood cells.  I had less than half the red blood cells that I should have.  The nurse firstly injected a huge amount of iron into my bloodstream, this gave me

I was eventually moved onto the normal ward on Friday 3rd September, unfortunately my blood pressure was not under control enough to have my biopsy on the Friday so I would now have to wait until Monday. Initially I didn't like it on the ward, privacy was not an option, but after a while I found the camaraderie between the patients extremely comforting.  Again I was sad for some of the patients who had no or few visitors, and I felt for some of the patients who were suffering mentally or were struggling with their personal situation.  I was glad that I had my strong personality and had good coping mechanisms!! Over the weekend the doctors let me out for a few hours and I met up with friends for a spot of lunch.  I got tired extremely quickly and had to go back to hospital, I hope I'm not institutionalised already!! Monday came all too quickly, I was apprehensive about having the biopsy as you only  have a local anesthetic.  Before I could be taken for the biopsy I had to hav

I was moved to the High Dependency Unit in a wheelchair. This amused me quite a lot as the previous few days I had been running, cycling and going to Zumba! I was pleased to have been moved as in the Medical Admissions Unit you didn't have a proper bed and I was exhausted! I was introduced to my nurse and he was called Mike. Over the three days I spent in HDU I got to like Mike very much. He was never too busy to explain to me what was going on and I felt like I was in very competent hands! In HDU the doctors changed me from the drip to tablets in an attempt to reduce my blood pressure. They had not been successful yet. I was also put onto anti sickness drugs and some capsules which controlled the acids which were building up in my stomach. My blood pressure then came down very quickly and the Doctors were worried about this too so wouldn't let me leave HDU. Every day I had more blood taken and more and more obscure tests were performed. Mike told me that one had to go t

I packed my bags and Trev drove me to Treliske Hospital.  We arrived at 11:00pm. I was taken to a cubical in the Medical Admissions Unit where a nurse filled out endless forms and took my blood pressure, which was extremely painful and took an armful of blood.  This is when the doctor arrived VERY quickly.  It turned out that my blood pressure was in excess of 250/150.  The doctor explained to me that the cuff around my arm had to inflate until my blood flow stopped and as my blood pressure was so high it had to squeeze extremely hard. I was then put on a drip with drugs to bring down my blood pressure.  The nurses had the instruction to take my blood pressure every five minutes!  Within thirty minutes my arm was black with bruises. I also had my eyes checked over and over again.  I even had a load of student doctors looking at them.  It turned out that my blood pressure had caused damage to the small blood vessels in my eyes. Later on I was taken for an ultra sound of my kidneys i

Where do I start, at the beginning I suppose! I had felt under the weather for a fair while, but when I went to the doctors I always got the response that I had a virus, no surprise there!!  However, during August 2010 I began to feel worse and worse.  My symptoms included tiredness, nausea, vomiting, bruising and an almighty headache.  Friends and family hastled me until I made another trip to the doctors on the 31st August 2010. On this occasion I went with the resolve that they were going to perform some tests!  The doctor gave me the predictable response that I had a virus, but would perform some blood tests, which were not urgent.  He asked me to come back within a week to have them, but he thought I would be fine by then. I was fortunate enough to get a blood test that day and after they were taken thought no more about it. That evening when I came home from work I felt particularly tired and was tucked up in bed before 9:00!! At 10:00 I had a call from my mum saying that s