Me and my journey through kidney disease . . . .

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 t...

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! Obvi...

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 fou...

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 ...