Gaining some insight

I have been somewhat homeless the last couple of weeks and so my brother and his family have very kindly taken me in, until my new place is available. Living with them, has given me a small insight into just how kidney disease has affected his life and the lives of his family. I had obviously done a far amount of research into the subject, hours of googling and reading etc etc but I had no idea just how it affects a person.
There is a list on the fridge in their kitchen of what foods he can and cannot have. Fresh fruit juices, spinach, chips, bananas, salt, various pulses, chocolate, beer, ale, stout, to name just a few are NO NO's. Water, fizzy drinks, potatoes (boiled or roasted), fish, some dairy, spirits, he's allowed. That's just a snap shot of the list.
He has to take a silly amount of medication everyday, I think he said it was 12 tablets a day.
He wakes up still tired and goes to bed exhausted, and sometimes has to have a nap on the sofa (mainly on weekends). He used to get terrible gout a lot, but one of the 12 pills he takes now helps to reduce flair ups. His ability to grip things tightly has reduced greatly due to muscle wastage. His brain has gotten "foggy" his memory isn't what it used to be. There are other side affects too, but I'm sure he wouldn't like me divulging those, so I wont.
I once heard him tell a nurse, when asked how he was feeling, that he didn't really know. He has become so used to feeling the way he does that he's unsure whether he feels unwell or not. Which must be quite common in a lot of kidney patients.
The kidneys are amazing things, their function is to filter out the toxins as waste and to filter the good bits to where they need to go. When the kidneys don't function properly, they don't filter correctly, so the body is becoming more and more toxic, which is why my brother suffers(ed) with gout so much and the foggy brain, muscle wastage etc etc.

My brother asked me the other day, for the first time since all this began, what my kidney function was. I told him that the left kidney, the one I'm donating has 54% function and the right has 46%. To which he replied, "That's not very good!"
"How is that not good?" I said. "My kidneys are functioning at 100% and your gonna get the strongest one."
 I think the penny dropped then, the percentages he has been told his kidney's function at, is the combined total, not just one kidney!! 

At his appointment last week he was told that his kidney function is at 14% and has been steadily deteriorating with each set of results. He has his bloods done about every 2 months and each time it has dropped another percent. So we have been told that the transplant will most likely happen in 3 to 6 months. So have a decision to make.

1. We can enter the pooled scheme in September and hope for a match in the first run, which would mean surgery in November/December time.
2. We can wait till January for the next run by which time we could also be getting closer to dialysis (the very thing we are hoping to avoid)
3. We can do a direct transplant from me to him, which carries with it slightly more risks and extra treatments.

None of these are easy decisions, but nonetheless a decision MUST be made. I have told my brother that I am very happy to proceed in which ever way he decides is best for him. After all, the main focus of this whole thing is him as far as I am concerned. So if I can make his decision a little easier by telling him that I'll do whatever he wants then great!

I think by now you probably all understand what is involved in the direct transplant. I have made a cheeky little diagram to explain the pooled scheme a little better.

 A few people have asked me if my brothers diseased kidneys are replaced by my one kidney or if he will have 3 kidneys. The picture below should explain this.

The diseased kidney's will be disconnected, and will eventually sort of shrivel up. My kidney or the transplanted kidney, will be placed at the front, nearer to the bladder and then they will connect it to all the various veins and bladder. So yes, my brother will have 3 kidneys but only one that works.

I wont pretend that I'm not scared because of course I am. This is major surgery for both of us, but I have to look at the positives. My brother will be able to feel well and strong again and he'll be able to get back some sense of normality and I will have helped him do that.

That is brand new information.....

I arrived at Guy's a little early (fear of getting lost!!), just in time to have my height, weight and blood pressure measured. I'm happy to say that I was quite chuffed at what the scales had to say!!
Next it was a urine sample. This bit was actually quite different, they gave me this shoe horn looking device, to which I had to connect a sample bottle. You pee into the shoe horn and it trickles into the sample bottle. Much better than trying to aim directly into the sample bottle!!
Then it was blood tests. Another 6 tubes of my precious AB negative blood, sent off to be tested for HIV, HEP B&C, glucose levels, anti-body levels, etc, etc ( i can't remember them all, it was a very long list).

Now it was time to see the transplant surgeon. We spoke briefly about the current status of our case. I hadn't realised that we aren't waiting for my brother to reach some "magic number" as far as his kidney function is concerned, we are looking at the rate of deterioration of his kidney function. To put it plainly, some patients take 5 years to go from 12% function to 10% function, while others may take 3 or 4 months. Again there are no hard and fast rules here, everyone is judged on a case by case basis, plus kidney transplantation is, in the grand scheme of things, a relatively new surgery.

Then we spoke about the surgery, they will be performing a Hand-assisted Laparoscopic Nephrectomy. Which basically means that the surgeon will insert a camera, through a small hole in my abdomen and two other instruments through two other holes. An incision would be made under my belly button, where the surgeon would put his hand to hold the kidney, while they disconnect it and the kidney will then be removed through this same hole. Urgh, makes me shudder just thinking about it!!
Then I got some brand new information, he told me that they had decided they would take my left kidney. I was asked to lie down on the examination table and he would show me where they would make their incisions. The picture below shows the incision sites for the removal of a right kidney, but you get the idea.

 I will be laying on my side during the surgery, as that is the easiest way for them to gain access. I will also have a catheter fitted to drain the bladder. YUK! The surgery will take about 3 hours and the recovery time for this kind of surgery is about 6 weeks, unless you have a manual job then it can be up to 3 months! I will probably be in hospital for 5-7 days. They like to get you up and about on the second day after surgery as it helps the recovery process. No dates have been booked for surgery yet, as it obviously very much depends on my brothers condition.

My brother has his appointment with a Professor today, where I think they will discuss which transplant option is best for him. Paired scheme or direct transplant. I think they will also discuss his latest set of results and see what his current rate of deterioration is. So we just have to wait and see.

Below is a much more graphic image of the surgery, so if you are at all squeamish DO NOT LOOK AT IT.

Pretty gnarly huh?  I'm gonna have a belly full of scars, which doesn't bother me, as I'm not one for showing my mid-riff off anyway. All though, when all this is done and dusted, I am seriously getting a tattoo on my back where my kidney was that says, "Left kidney was 'ere!!"