Hiatus…changes….and I slipped

When I started this blog, I intended to blog about the process of donating a kidney to my sister. As time went on, I found myself blogging about different things that life presented me with. I started to record my thoughts and feelings which isn’t something I would normally publicly air, though this medium provides a degree of anonymity. And as part of the living donor process, I blogged about my research on giving up smoking, along with the daily happenings as I gave up after nearly 30 years of smoking every day. This latter part had to happen really. I was up to between 30 and 40 a day and had began to feel short of breath when climbing stairs and other similar activities.

Over the last four or five days, I’ve took a hiatus from blogging. After finding out that I could not donate and sharing the news with my family, I had something of a downward spiral. But life goes on. Chin up as my Dad used to say when we were kids. Her preparation for dialisys will continue and there are a few possible donors.

I had a few cigarettes too. Perhaps this was a little dumb, but I found myself craving a smoke even more that when I initially gave up. That caught me unawares, after nearly five weeks I hadn’t anticipated that. So over the course of a day I smoked three. Less than half of three actually. Part way through each one, I asked myself what was I doing. They werent particularly nice, or foul, and certainly werent making me feel any better. That was a few days ago now, so I am back on the wagon so to speak.

I did some research for my sis. She doesn’t use the internet and had a question about whether someone close to her would be in a position to donate. So I read alot of things about being a living donor. Stuff I had purposefully avoided in the past. Which included the risk and chances of different illnesses happening to the donor. I hadn’t been completely blind to them. At my initial session at the donor clinic the nurse went through all the different risks, some of them were surprisingly high, but it was information overload and frankly, I didnt want to know the percentages. I’d made the decision and had to trust that they new what they were doing, that they wouldn’t be proceeding if the risks became untenable. During my research the night before last, the thing that stood out for me was the chance of a stroke or heart related problem. The NHS page states 1.8%. That seems pretty high. And it makes sense of why they are not willing to proceed with my donation.

This blog will continue. As my sister begins dialysis and searches for another donor, I will record what I can here, along with other thoughts. I do want to thank everyone for their kind wishes, it is been heartwarming and uplifting to receive them.

Chin up.

Day 9 – Living in a smoke free zone

It has been 9 days since my last smoke. Sighs.

Yesterday I went back to work. Probably a little too early, as I felt drained by mid afternoon

I did speak to the Living Donor centre, they advised me that my scans had been examined and the consultant has decided my sis will get my right kidney, both kidneys appear to be functioning well and equally, so I guess it makes little difference to me. I advised them of the torn blood vessel in my neck, they didnt seem to worried, though it may delay things a little. They are arranging for a copy of the MRI scan from my local hospital.

When I got home, I felt uttterly exhausted along with a banging head and a strange, gentle pins and needles sensation across one side of my head. I think my wife wanted me to go back to the doctors or ring the neurology ward, but I was hoping I just needed a rest. And a cigarette. Damn insidious little things. I resisted though. And read for a while before heading to bed around 920pm. That’s odd for me, as I normally dont hit the sheets until around midnight.

When my head hit the pillow, I was out for the count. I awoke sometime after 3am, with a bad head and realised I still had my patch on.

A quick cuppa, tablets, patch in the bin and back to bed I went. I didnt wake back up until just before 8am.

Today has been a work from home day. Apart from a few deep urges to light up a ciggy, I have plodded on and got a fair amount of work done. Flagging now though, its mid afternoon and I have another hour and a half to go.

Second visit – day 2

Day two was never going to be as simple as day one. The instructions were to have nothing to eat or drink after midnight before the first appointment. Sleeping on my sisters floor wasnt comfortable and it was a fitful night for both me and the wife.

First up was a glucose blood test. Followed by urine then a trip to radiology for a pipe to be inserted into my arm, along with three doses of radioactive dye. When the radiologist said…”you may feel a hot flush, metallic taste in your mouth and you may feel like you have wet yourself” somehow didnt seem particularly reassuring. After a series of scans, I was allowed to eat….cooked breakfast, yay….and then spent most of the day killing time, wandering around the hospital, returning once an hour for further blood tests – they were clearly testing the kidney function of a 7 or 8 hour period.

Towards the end of the day, there was some more radioactive dye and then a gamma radiation scan. Unfortunately, I didnt come out like the hulk!

The wife was feeling increasingly ill and I felt pretty drained so we went back to my sisters place for a rest, something to eat and to wait for rush hour to ease off.

We set off back home around 6.30, and made a quick pit stop in a layby so the wife could throw up. She really wasnt feeling too good. Fortunately, we had a quilt with us, so she curled up in the back, all cocoon like for most of the journey home.

Second visit – day 1

Having passed the initial blood tests – apparently we needed six positives and one specific negative – another set of tests were scheduled over two consecutive days. The hospital were really accommodating about this as normally the tests arent all done together, but its a 4 hour drive each way to the hospital.

Day 1 involved a session with the consultant, the surgeon and blood work. My doctors are seperate from my sister’s, so that one team focuses on what is best for her, and the other (my) team decide what is best and safe for me. It seemed a little strange at first, but I understand the logic and there have been cases in the past where one person has been coerced into donating.

I was very impressed with my consultant. He was a kind of posh speaking, but very down to earth and very straight with me and had a sense of humour too.

My surgeon was completely different, but not in a bad way. Asian, he had been to the Olympics the day before where everyone had been in a “happy bubble” – his words. He confessed to feeling a little worse for wear, but still instilled complete confidence, a completely different character to the consultant and I am sure he will be tip top for the operation itself.

More blood was taken (I thought the practice  of leeching stopped in Victorian times) and I was done by just after lunch time. Result!

Introduction

There is a short version and a long version of this, for those with short attention spans, the shorter version….

My younger sis needs a kidney. Both hers are about buggered and dialysis starts soon. In the absence of any other likely candidates I have put my self forward to give her one of mine. And this is where I plan to record the events, thoughts and so on.

The longer version.

Around 35 years ago, my younger sis became severely ill and was hospitalised for over a year. She was six years old. Eventually the prognosis was scarred kidneys, which among other things, caused extremely high blood pressure. The blood pressure caused further scarring to the kidneys. A kind of sad vicious circle. Through the rest of her childhood she was on various experimental drugs (this was almost four decades ago) and in her teen years she rebelled, to the point where Mum had her committed to a children’s home as she could no longer control her or prevent her from endangering herself.

Fast forward a few years, she settled down a little, though admittedly not that much, and moved south. Although she had stopped going to school at 13 or 14, she moved south as early as she could, went through a series of jobs, eventually working her way up from waitress to manageress of a  restaurant.

In the last year, finally it seems things have come to a head and she needs a replacement kidney.

I may not agree with all her lifestyle choices. We don’t speak that often and have often gone for stretches of several years without even talking. We don’t do Christmas and birthdays cards often. Regardless of all that, she is still my little sister and if there is something I can do to help, then I want to do what I can.

Of course, it isn’t quite that straight forward. I’m in my mid 40s, in reasonable health, apart from the fact that I have smoked for around 30 years. I also don’t like the sight of blood or needles. I put myself forward as a possible living donor candidate a few months back. During my initial consultation, when all the nurse was going through the lovely descriptions of what is entailed and they were draining me of blood for a battery of tests, I flaked out.

I’d prefer to think it was the heat, lack of air and the fact that I had driven down late the night before, got up early and not eaten. Maybe that was it.

So, all the tests came back positive, last week I went back down south for more tests. Which I will talk about in my next entry.