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.

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Pushing it

My head has been a bit all over the place these last few days. I took a call from the Living Donor team. They had assessed my MRI scan results since my recent hospitalisation and concluded that they’re not willing to proceed with the transplant.

So having passed all the tests, a tiny blood vessel in my neck burst, restricting blood flow to my head, dramatically increasing the risk of a stroke or worse if I am placed under general anaesthetic. It would be pushing things too far. In some ways, I knew this was a possibility. In other’s, I had denied that this would be the outcome. I was hedging and hoping, the power of positive thinking, to get the right outcome. Sadly that wasn’t the result. I didn’t tell my sister straight away. I needed an evening to wrap my head around it.

She is in shock I think right now. She had already missed her dialysis prep appointments, I think she was trying to avoid that particular reality as we were both focusing on the transplant. Now she really does need to focus on the dialysis. When I was last there, we took a walk, her boyfriend and I got ahead of everyone, he said that if the donor centre found that I wasn’t a match, then he would put himself forward. Time to step up laddie.

Mum was in shock too I think. I had played down my illness a little as I didn’t want to worry anyone. She was at my sister’s and wasn’t seeing it first hand. Dad was supportive and on his way home from his big summer trip.

I took the bike out yesterday. I needed it. Really needed it. Probably gave it a bit more than I would normally. Pushing it closer to the edge. Sometimes, you just have to get these things out of your system. Riding a motorbike is many things. Dangerous. Exposed. But also somehow it frees you. It is just you, the bike and the elements. Everyone and everywhere there are constant threats. And yet, it is compelling to step down a gear and pop the throttle open and skim past the traffic, easing between them and the oncoming traffic.

I came upon an artic – articulated lorry – on the approach to a roundabout. Easing off, I skimmed the roundabout and prepared to slip by on the outside. Just before I wound open the throttle, I noticed movement of the rear door. I backed off a touch and it swung in a slow pendulum to pretty much where my head would have been if I hadn’t spotted it opening.

Oops.

I hung back, it swung wide open, then bounced on it’s hinges and began a slow journey back to where it belonged as the driver straightened up out of the roundabout. I dropped a gear and swung past, gesticulating with my left hand as I went past the cab of the truck. I think the driver was still oblivious. He probably thought I was just (another?) belligerent biker.

Sometimes, I need these things. Not the swinging artic door close to my head. But the feeling of being on the edge, of being alive. Maybe that’s the pull of riding.

Register to be a donor

Years ago, I picked up on of those flimsy paper organ donor cards that used to be left laid around in doctor’s waiting rooms. I duly filled it in and kept it in my wallet until it fell to bits. Until recently I haven’t given it much thought.

I’ve been reading about organ donation in the UK recently for obvious reasons. I tend to steer clear of the yucky stuff, I really really do not want to know the mechanics of what will happen when the surgeon takes the knife or scalpel to me. After all, I will be under anesthetic and completely out of it. Unless something like that film Awake happens. Hmmmpf. Best not think about that!

Anyhow, as part of my search, I came across the NHS sign up site for donating organs after you die (the link is here http://www.organdonation.nhs.uk/ukt/default.asp). It is a surprisingly well laid out site and it is incredibly quick and easy to sign up so you can donate. Let’s face it, if you or someone you love needed an organ, you wouldn’t hesitate in taking one that had been donated would you? And you won’t feel a thing if you donate. After all, you will be dead.

Go do it and make sure those closest to you know of your wishes so they don’t override them when the worst does happen to you. Go. Now. Right now. You can read the rest of this post later, if at all. What was the link again? Here you go – http://www.organdonation.nhs.uk/ukt/default.asp

If you have now registered, well done! Make sure you tell your family about it. Encourage them to sign up too.

I unticked the box for eyes. Sorry all you blind folk, but when I do eventually pop my clogs, my family may want an open coffin. It would just look odd if the undertaker had to pop mirrored shades on my face to hide my empty eye sockets.

Melting

For some reason, I associate the word melting with the Wizard of Oz and the wicked witch crying out, rather than any other more normal real world activity.

Last week my sis was melting. Not in a dissolving into a pool of liquid kind of way, but in a ‘oh f**k, the time is here’ sort of way. It’s kind of understandable, its been 35 years she was diagnosed when she was a little kid and she has spent much of that time in denial, ignoring the fact that she has a serious condition and living her life on her own terms. Some of that meant completely ignoring medical advice. The fact that she has done all that and is still alive and kicking is pretty amazing.

Last week, the denial peaked, she spent much of each day in bed, trying to forget the fact that dialysis is here and she has to go in and get the tubes fitted, then be shown how to do the dialysis at home. The doctors aren’t happy with her for missing appointments either. Mum has been with her for the last month and only came home a week and a bit ago, but she is turning around and heading back to give my sis some support and to chivvy her along when needed.

Sis texted me over the weekend, feeling a little better, but telling me she was cacking it. Me too sis, but it is here now and we just need to do what needs doing. I will be scared s**tless come the transplant too, right now I try not to think too much about it, but we have to do this.

Last week was a bump, that’s all. And you are entitled to a few of those. Just save a couple for me.

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.