Me and my journey through kidney disease . . . .

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