Well I certainly wasn't expecting that

its been a busy month on the kidney front. first of all on the 6th I was due back at the transplant clinic to see the surgeon. wasn't particularly looking forward to it as I had only managed to loose a couple of kilo's since last time. So I knew i was in for a bollocking, and true to form I got it.

In fact his actual words were "David, this is crap"

Despite this he has decided to activate me on the transplant list. So there you have it, I'm listed for a kidney transplant, I keep saying it because part of me cant believe its true. another part of me doesn't want to believe its true. In part I guess this is because I don't particularly feel ill at the moment, not that I feel 100% well but i guess a sort of OK. Sure there are times I feel tired, and a bit grumpy and I don't have the energy i had a year or two ago, but am I really this ill?

The post script to this and in truth the bit I really wasn't expecting was my blood results. My function has been falling for some time but for the past year has slowed to a loss of about 4% a year. So I was shocked when my results came back and it had dropped by 3% in less than 3 months.

So 10 days and one birthday later I'm back at clinic this time to see the renal nurse. Again not looking forward to it as I'm sure my recent results are cause for concern, although I didn't expect anything to change until I see the Nephrologist in January. But of course what I wasn't expecting was to be told that I would need to come back and see the doctor next month and that if my function continues to drop at this rate i would probably start dialysis in January. So come what may it is likely that I will end up on dialysis before any potential live donor transplant.

So its been a couple of weeks of surprises, some I perhaps should have seen coming, and a time for re-evaluating whats important. On the live donor front my sister is still awaiting an appointment regarding the cyst on her ovary and so our clinic appointment has been postponed and any transplant from her is unlikely to happen before March /April next year.

August clinic and holiday

August began with a visit to hospital to see the surgeon again. Unfortunately this involved a mild bollocking from the doc as I'd only managed to loose 0.5 kg since I last saw him. So i need to put a renewed effort into loosing weight, as I need to loose 9kg before I can go onto the transplant list.

As part of this fitness kick I've bought a wii and wii fit, so i need to loose weight to justify spending the money.

August closed with two weeks of blissful sun in Spain.

Only about 3 months late updating my blog. So where to start, I guess i need to go back to July and my clinic appointments.

Seen by the registrar in clinic, nothing very exciting weighed, piss test and blood tests. Come back and see us again in 3 months. Blood results back the following day much as to be expected:
Urea 25.2 (normal value is 2.5 - 7.0), creatinine 377 (eGFR 15) Potassium 5.8 which is slightly high, and Haemoglobin has fallen slightly again and the clinic will monitor this more closely.

Generally feeling OK, and no further health problems.

My sister has started to have a variety of tests, everything going fine and she has fully recovered from her bout of glandular fever. Creatinine clearance test was OK and her kidneys are both functioning equally well, so no problems there at present.

The rest of July was uneventful, so I'll move on to August and my appointment with the surgeon tomorrow.

Trip to GP

Went to see the doctor on Monday about the pain in my kidney. Felt a bit of a fraud as the pain had diminished over the weekend. Still not running a temperature and no blood or protein in my wee sample, so it would appear to have been a blown cyst.

Otherwise everything is quiet on the kidney front. Getting more and more fed up with the great British summer, a few days of sun isn't too much to ask is it? Still not long till I go to Spain, so I've got that to look forward to.

Time for an update I think

Well, its been a while since I updated this blog and a lot has happened in the meantime.

First of all on the 17th April my granddaughter was born. She arrived at 16.55 fit and well and weighed in at a healthy 6lb 3oz.

Mum and baby both remain fit and healthy, and she is now smiling a lot and making lots of nice baby gurgles.

On the kidney front the tissue match results came back as a better than 50% match. My sister is now having lots of tests to ensure that she is as fit and healthy as can be. The only concern at present is as she is much smaller than me, is will her kidney function sufficiently for my body size. She is going for a creatinine clearance test soon and this should tell us whether it filters fast enough to be suitable for transplant. Unfortunately her tests have been delayed slightly as she has had glandular fever, and although she appears to have recovered quickly and fully this may delay things a little.

Health wise I remain as fit and healthy as can be expected. I haven't managed to loose any further weight since my last hospital visit, but at least I haven't put any weight on. I have developed a pain in my left flank in the last day or so, which may be a kidney stone, a ruptured cyst or an infection. As I'm still peeing normally and not running a temperature I'm guessing its a cyst but I'm off to see the doc on Monday to get it checked. Or sooner if it gets worse. I'm still managing to work part-time, which is good and helps keep me away from feeling sorry for myself.

The feeling sorry for myself has in part been why I haven't updated my blog for a while. I was beginning to be obsessed with Kidneys and kidney disease and was spending hours trawling the net, looking at various sites and message boards. Ultimately this was making less happy and rather than appreciating the good things in life I became fixated on the negative and in particular feeling that life was unfair. So I decided to have a period away from the computer and to focus on my family and my other hobbies for a bit. This appears to have been helpful and I'm much happier and settled now.

The downside of being away from the computer has been I have missed contacting people who I only have contact with by computer, and the 1000+ emails in my in box. Still working through them, most of which are from banks I don't have accounts with, Nigerians who want me to look after their money and companies wanting to sell me Viagra. Isn't the Internet a wonderful thing......

Well that's about it for now, I have a clinic appointment due soon so I'll hopefully update then if not before.

Graduation day - David Barnes B Sc (Hons) Health and Social Care

Just over a week ago, I went off with the family for my graduation. I completed my degree over a year ago but didn't get arround to collecting it until now. I guess it was one of those things which had seemed just a little less important than my health.

The ceremony was at the Harrogate International Centre and and went off without a hitch. We made a day of it taking time to walk around the town in the morning. As well as my darling wife, i also four other family members with me. Unfortunately my daughter was unable to join us as she is heavily pregnant and the thought of my grandchild arriving mid event wasn't one I was about to risk.

I now need to decide what to do next. I've always enjoyed studying and found studying for my degree a wonderful challenge. I will probably wait until later in the year before making a decision as with a bit of luck I'll be busy getting an extra kidney. No news on the tissue matching as yet, but I'm at the hospital for a follow up appointment with the nephrologist so I'll ask then if I don't hear before then.

Transplant information evening

Went to the hospital last wednesday for an information session about transplant. Met up with my sister beforehand as we had arrahged to have our bloods taken for tissue matching. We should know the results in two or three weeks, so fingers crossed all goes ok.

The information evening itself was very good, although I didn't particularly feel I'd learnt anything new. The evening started with a 25 minute video, this focussed on the transplant process and some of the negatives associated with it. This was followed by a short question and answer session with the transplant coordinators for the hospital. The evening finished off with an opportunity to meet people who had already had a transplant, this was for me the best part of the evening.

I came away from the evening feeling positive, which was very different from when we had the diallysis visit last year. That left me feeling quite down and negative.

Happy Easter

Well its been snowing but it hasn't settled for long and now we have glorious sunshine.

Spent yesterday afternoon out walking at Clumber Park. Managed to miss most of the rain and enjoyed the fresh air.

My sister telephoned late yesterday evening to ask if we wanted to go to their villa with them for the week. So the choice a week of sunshine in Spain or a week of work in the wet and cold UK, guess what, I'm staying at home. I know this sounds crazy and I must be mad to not take up the opportunity but I do have some reasons.

The first and big one is I hate flying, i know it irrational, its the safest form of transport but, I don't need that stress at the moment. Secondly I'm due to collect my degree on 5 April and I would have to rearrange this if we went to Spain. Thirdly I've only been back at work a month and a half and I'm still only working part time, and I feel like the new boy at the minute. So taking a week off would put me back again. Lastly I have to loose weight for my transplant, so far I'm doing well I've lost half a stone and I'm feeling better for it. I afraid that if I go away on holiday at the moment I will break the routine I'm in and at best not loose any weight and at worse put weight on.

So I'm not going but I might take up the offer later in the year if I reach my target weight.

Tired at the end of a busy day. Had to do a little work on the car, unfortunately the fuel filter had started to leak and the idea of a pool of petrol on the drive wasn't particularly appealing. As always a job which i thought might take an hour took two hours. To make things worse half an hour after I started it began raining. Still its done now, so hopefully no more problems for a while.

Had a phone call from the transplant co-ordinator at the renal unit to confirm the arrangements for my sister and myself to have our bloods taken next week for the tissue match. It still feels a bit surreal at the moment. A couple of months ago I was feeling tired and generally unwell and I honestly felt ill, but at the minute I feel reasonable fit and healthy and it makes it feel strange to be talking about having a possible transplant. I guess I should just enjoy the moment because I'll pobebly feel crap again next week.

The transplant surgeon wants me to loose weight before I have a transplant. So I've got to loose 35lb or there abouts. Made a good start I've lost 6lb in the two weeks since I saw him. I've been walking about 2 miles everyday and i've cut out the snacks between meals. My dog Duke thinks this is great as he is getting regular exercise too.

Thats about it for now, the weather forecast is for snow over the easter weekend so lets wait and see.

What a lousy start

Well despite all good intentions, I havent updated my blog for the best part of 9 months.

Much has changed some good and some not so good. Healthwise my kidney function has stabilised somewhat, with only a small decrease of function, about 2%. Unfortunately this is only one aspect of kidney disease. By October I was becoming increasingly tired and unable to cope with work. Despite not wanting to accept this I needed to to take time off work and remained off until the begining of february. I have now returned to work although only part time for the forseeable time.

Despite the small reduction in Kidney function I've been referred for a transplant. If my sister is a suitable donor, I could have the transplant in the next 6 to 9 months. As you might expect I have lots of thoughts and emotions at present.