People always ask me...

People often ask me what, if any restrictions will there be on my life only having one kidney. Their main concern seems to be whether or not I can still consume alcohol! Which, working in the booze industry I can understand.

There are very few, if any restrictions upon my life. I can still drink alcohol and I do not need to go on any special diets. Long term studies have shown that kidney donors live as long or even longer than the rest of the population.However, there will be still be things that need to be monitored.

When one kidney is removed, the remaining kidney will swell, in order to compensate for the loss of the donated kidney.

Things that will need to be monitored:

• Blood pressure.
• Proteinuria. Excessive protein in the urine
• Reduced GFR. The glomerular filtration rate (GFR) shows how efficiently your kidneys are removing wastes from your bloodstream. People have a reduced GFR if they have only one kidney.

It is possible to have these conditions and still feel fine. Regular checkups with my doctor will be needed to monitor these conditions. Every year I'll have a urinalysis and have my blood pressure checked. Kidney function will also be checked (to monitor creatinine levels and GFR etc.)

Diet wise, they will recommend a heart healthy diet, lots of fruits and veg and high fiber foods. Limit salt and fat intake.I will however need to avoid high protein diets as a lot of protein puts too much stress on the remaining kidney.

Should I decide that I want a family, that is still possible. However, I will be monitored closely due to my age and the risk of high blood pressure. But that's not really a concern of mine.

As for the booze,as we all know excessive alcohol consumption can lead to high blood pressure and heart disease. These in turn can increase the risk of kidney disease. I was a heavy drinker in my younger years, but these days it's very much in moderation. I will still be able to get drunk if I want to, but it will take fewer drinks to get there. Cheap date!! So, this Christmas i will still get to enjoy a snowball or three!! 

Merry Christmas & A Happy New Year!!

The Surgery

There has been a change to the date of the surgery, it will now take place on 12th February 2014 at Guy's Hospital in London.

I have previously mentioned the surgery and posted some pretty graphic pictures. I've only given an account from my side and it was brief. I have been getting a lot of questions from people as the date nears about both sides of the surgery. So this post should help clear some of those questions up.

I have to have some more tests done as my previous tests have expired as they only last a year. One other thing that I have to do before the surgery is to meet with an independent assessor from the Human Tissue Authority (HTA). The assessor wants to make sure that I completely understand the implications of the process. They also have to make sure that I am not being either bribed or coerced into donating. Final approval for the transplantation must come from the Human Tissue Authority, and this can take a number of weeks.

In the fortnight or so before the surgery, both my brother and I will have some more blood tests done to ensure that nothing has changed and there will be a few pre-op investigations carried out as part of a pre-admission visit to the hospital.

My Operation
The operation to remove a kidney is a major operation that requires a general anaesthetic. The surgery usually takes about two to three hours.

The surgeon will remove my left kidney using “keyhole” or laparoscopic surgical techniques. It involves a number of small incisions (1–3 cm each), through which instruments are inserted to remove the kidney. A larger incision is then made to take the kidney out.

Once the kidney is removed it will be taken to my brother, who will be in another operating theatre.

My Brother's Operation
His surgery is a little more complex than mine and usually takes 3-4 hours to complete.
First, the surgeon will make an incision in my brother's lower abdomen (stomach), through which my kidney is put into place. My brother's diseased kidneys will be left where they are, unless they are causing a problem, such as an infection.
Then, blood vessels from his lower abdomen are attached to the blood vessels of my donated kidney. This is to provide the donated kidney with the blood supply that it needs to function properly.
Lastly, the ureter (the tube that carries urine from the kidney to the bladder) of the donated kidney is connected to your bladder.
My donated kidney should take over the work previously done by my brothers two kidneys, pretty much immediately. 

After the Surgery
 After the operation, we will be taken to a recovery room to wake up from the anaesthetic. We will both have several temporary tubes or lines inserted during our operations, which will include a tube inserted into the bladder (catheter) and possibly a drainage tube from the wound. These tubes are usually removed within a few days. Drugs for pain relief will be given immediately. Thank God!!

Whilst I am dosing up on the pain killers, my brother will begin treatment with medication designed to prevent his immune system from rejecting his new kidney.

Recovery
We will both be in hospital for about a week, perhaps more for my brother, but once home, I should be able to return to work and continue leading a normal life after about 6 weeks and my brother should be feeling much better within a few months and probably return to work to.

Doesn't sound so scary now, does it??! I am actually quite looking forward to the chance to have a good old rest!!

The Countdown has begun

In a little over 8 weeks now, I'll be donating my left kidney to my brother. The reality is beginning to set in.
I'm having to think about whether to take the time off from work as holiday or to take it as sick leave and where I am going to spend my convalescence time. Things I never really thought about before or had made assumptions about, but now I actually have to decide some stuff. Which, anyone that knows me well will agree, is not easy. I'm not great at making decisions. Would much rather have someone tell me what I should do.

As it was just over a year ago, since I had the first set of work up tests, I have to do the chest x-ray, renal ultrasound and bloods again as they have now expired. Obviously they need to make sure I am still fit and healthy enough to donate. I'm sure it'll all be fine. However, I still need to give up smoking :(. Really need to do that!!

The Ties that Bind

Peoples reactions upon discovering that I am donating a kidney to my brother, don't really differ all that much. The majority of people, think it's a wonderful thing to do for a person. There are some that feel my attitude towards what I am doing is a little too blasé, and to some extent I would agree.

Truth be told, I don't think I could go through with it if it wasn't for the love and unwavering support of my family and friends. They keep me grounded and give me the strength to face my fears.

Having a good support system is really important. Having people that will be there for you, not just during the all the tests, or visiting you in the hospital, or even during your recovery, but people that are there for EVERYTHING! The times when you are unsure of your decision, when your scared or just to talk about how you feel about what you are doing.

With these types of people in my life I feel I can be somewhat blasé, because I know that no matter what, these people have my back, they always have had and they always will do. No matter how strong a person you think you are, there are times when you need support, when you need people. So, don't ever be too proud or afraid to ask. We all need someone, sometimes.

So, I want to thank everyone that has been and is there for me throughout this and beyond and to all those people that have been reading this blog.

New Year, New Start...

I guess the title of this post is a bit of a give away.

My brother has decided to opt for a direct transplant, instead of the pooled scheme. He has decided this because the responsibility of letting another pair down, is too much. At least this way he can do the transplant, when he is ready and on his terms.

We have decided that we'd like to do the transplant in January and have a very tentative date set, which is the 24th January 2014. There it is! An actual date. My brother will be getting my left kidney, which i have named Lucy!! You know for lefty loosey, righty tighty!!

I thought hearing the date would scare me more than it has. Of course I am scared but I am also relieved to have a rough of idea of when it is going to happen. At least now we can both make some plans, I can let my employers know and organise my recovery period.

For the past 18 months or so, I have felt like I have had to put certain aspects of my life on hold because I never knew when the transplant was going to happen. Yes, there were definitely times when this was very frustrating for me but you have to remind yourself why your making these sacrifices. I am giving my brother the greatest gift you can give a person, so in the grand scheme the sacrifices I have made are a drop in the ocean.

One thing I do have to do prior to surgery is quit smoking!! So with that in mind I have signed up for Stoptober. It's a little early, true. However, I figure, I'll never again have a better motivator to stop smoking than donating kidney. So wish me luck.

The Fear

Donating a kidney is not something that should be entered into lightly. It’s a big thing to put your body through. Hence the reason you have to go through so many tests and meet with a counselor.

If you didn’t feel some degree of fear, I think you’d have to be superhuman. The surgery itself, is cause enough to feel scared. However, this is not a fear that I have felt, but I’m sure I will once a date is set.

The fear that I experience is a fear of failure. This is not new to me, it is something that I have always fought with and more often then not it’s gets the better of me. Some people that suffer with a fear of failure, for them it usually involves trying something new and failing. That isn’t the case for me. My fear is more to do with failing to achieve. I am always up for trying something new, sometimes it takes a little persuasion, but I’ll usually give it a try. However, when it comes to pushing myself to achieve more, I’m afraid I wont be good enough or that I wont reach my goal. So rather than face all that, I don’t try and make lame excuses and usually miss out. Then the inevitable kicking oneself usually follows.

Donating a kidney to my brother, hasn’t been safe from my fear of failure either. I worry that if it doesn’t work, I have failed him and my family and that is a lot of pressure to deal with. There have been a few times when it has gotten the better of me, but good friends have been there to reassure me that I am doing a good thing. So with a little help from friends and members of the kidney team, I have realized that if the transplant doesn’t work for whatever reason, it wont be me that has failed, after all I’m giving away a healthy organ. It took me a long time to accept that, but now that I have, I can finally begin to let go of that fear. Hopefully, I can transfer that logic to other areas of my life.

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.