Chronic Kidney Disease

I can be your hero

6 years ago, on 16th June 2012, Andrew and I got married. In his speech Andrew talked about all the struggles we had already overcome in the time we had been together. I framed a quote from his speech for our first wedding anniversary, never knowing how much we would put it to the test.

“Challenges are what makes life interesting. Overcoming them is what makes life meaningful.” Joshua Marine

I remember very clearly the first time I set eyes on Mace, as I knew him back then (as well as thinking he was Welsh, I also for some time thought that was his first name!) I was in my third year of university and in the second week of my internship at Lehman Brothers. Mace had returned from several weeks in the New York office and was recounting his tales of drinking sessions. He came with a lot of bravado and to be honest I thought he was a bit of an idiot to begin with! A very handsome idiot though… That was in June of 2006. Working in an investment bank was all it was hyped up to be. Fast paced, interesting and worked you to death. I spent more hours in the office than I did at home. I quickly fell into habits of having breakfast, lunch and dinner there. The team we worked in worked hard but once we finally left the office we certainly knew how to let our hair down! I miss those days, well mainly nights, of drinks in the wharf! The weeks whizzed by and soon it was time for the work Christmas party. At some point that night in a drunken blur the handsome idiot and I had our first kiss. Deciding we didn’t want anyone at work to know, we spent the next few months hiding out in various bars around the Wharf, always hoping we wouldn’t run in to any colleagues. In fact, most people never twigged! I was quite adamant in the first few months that this would be nothing more than a summer fling (all bet it in winter) and I would soon be returning to university. The problem was the more I got to know Andrew, the more I realised he was anything but an idiot. He is ridiculously clever, knowledgeable and could talk about any subject for hours on end! He’s incredibly caring and loyal to a fault. The more you spend time with Andrew, the more you realise he’s like Shrek, in that he’s like an onion!! Layers fall away and beyond the bravado and stories is an incredibly loving, kind and caring man. And by the time I was due to return to university it was clear it was never going to be just a summer fling, I had already fallen in love.

I think it is true to say that over the years our time together has been a comedy of errors. If I was to list the many “this isn’t fair” moments I’d be here all day. Both of us losing our job on the same day when the bank we worked for went bankrupt was just the start. When I look back on the years we have spent together I don’t focus on the constant hospital appointments and stays that have plagued both of us over the years. Through every heartache we have found a way to eventually make each other laugh and smile. Our first dance at our wedding was to Enrique Iglesias, Hero. And as mushy as it is, Andrew really is my hero and I wouldn’t have survived without him.

I haven’t written an update recently on how Andrew is getting on. To be honest it is because I quite enjoy sweeping the reality of what is happening to Andrew under the carpet and trying to not think about it. With everything that has been going on that has been quite easy. Back in January Andrew was first told that he should be put onto the deceased donors list as his kidney function was so low. Finally, last week he was given the ok by the surgeon to be added to the deceased donor list. It has been quite a task to get to this point. Andrew has been undergoing lots of tests and over the past month he has spent a lot of time at appointments at different hospitals. As well as the issues with Andrew’s kidneys he also has several problems with his heart. As such, there was a delay in getting him added, while they waited for his cardiac team to assess his fitness for general anaesthetic. They carried out a stress and non-stress test on his heart (which involved him being injected with radiation), x-rays and there has also been a whole host of blood tests. Thankfully the heart tests were ok, and this meant his cardiac team gave him the green light for having a general anaesthetic.

When we met with the surgeon last week he went through some questions for the answers to be listed alongside his place on the deceased donor list. They were just more examples of things we would never have even considered. The first one Andrew wasn’t given any choice over. This was where a kidney donor might be older and have less function in one kidney, so they transplant both kidneys from the donor into the recipient. The surgeon said he wouldn’t allow for that option for Andrew, as the operation is more serious and that would be potentially too much for his heart to deal with. The second question was, would Andrew consider a kidney that when removed from the donor was found to have tumours. They would have removed all the tumour and the hope would be that any cancer would be gone, but it isn’t a certainty. That didn’t sound like such a great offer to me but Andrew thought he would consider that at the time if a kidney like that came up. The third one was if Andrew would accept what could be a potentially a great kidney from a younger person, that was a drug user. The risk with this type is that it might have HIV and although they would test for it, there is a risk it could. Andrew decided to decline any kidneys like that in advance.

Once the surgeon had gone through all of that he spoke to us about a realistic waiting time for a kidney from a deceased donor. Andrew has been given an estimate of 2 years. His brother got a kidney much quicker than that (I think it was four months he was on the list for) and given they are identical twins you’d assume the wait would be the same. Unfortunately, though this isn’t the case (and I prewarn there is a short science lesson now from the information we have been given!). For kidney transplants two main things need to be considered when finding a match. First is the blood group and the second is tissue typing. Tissue type is involved in the process of getting rid of viruses from the body. Everyone has six principal pieces of protein (HLA antigens) in the cells of the body that are involved in this process. When a deceased donor kidney becomes available, NHS Blood and Transplant matches the six numbers that the donor has with the best match for all the potential recipients on the on-call register. It is basically like the lottery – everyone has their own six numbers and if the donor had the same six numbers they would be offered that kidney. (there are other factors involved but for simplicity here). If you had a kidney that matched all six antigen that is like winning the lottery jackpot, it doesn’t happen very often. Five and four number matching are more common. All sounding fine so far – well the problem is that our bodies can build up antibodies to anything that doesn’t match our own six numbers. These antibodies mean that if you receive a transplant with one of the numbers you have created antibodies to, your body will try to reject it. Antibodies are created normally from an interaction with a different number antigen for example; a blood transfusion, a previous transplant or sometimes a pregnancy. Andrew has had none of these but still has shown that he has antibodies. In rare cases some people can create antibodies from infections or even vaccinations, so it looks like this is how he has them. They are repeating this test, as they do with all transplant patients and we are keeping are fingers crossed that maybe there might be some change in that. Antibodies essentially mean that you are likely to wait longer for a compatible match to come along.

So, faced with the reality of a deceased donor taking around 2 years we are still hoping a live donor can be found. Andrew’s kidney function is continuing to decline, and it doesn’t look like he will be able to avoid dialysis now.  Finding a live donor would mean not only the potential for a better match but also the statistics for a live donor kidney are much better. On average a kidney from a live donor can last between 20 – 25years. A deceased donor kidney it is estimated can last from 10 – 15years.

We visited Guy’s two weeks ago to attend a 3-hour education session on kidney transplants. The session acts as part of the consent for the operation and is mandatory for all kidney transplant patients. As part of the session we heard from one of Guy’s hospitals living donor coordinators. She spoke about a patient at Guy’s who didn’t know how to ask people to consider being a live donor. I think Andrew and I could relate to lady they discussed. Neither of us want to ask for someone to go and be tested to be a living donor. It is a major thing to consider. If you are successful through the tests it obviously means you will need to have surgery to remove your kidney. We listened later to the surgeon talk about the donor’s surgery and at Guy’s, most of these operations are now done via key hole surgery. It is still an operation.  And asking for a kidney is still a massive thing. The living donor coordinator, telling us the story of the lady who didn’t know how to broach the subject, suggested giving people all the information and let them make their own decisions. The living donor process is anonymous unless you decide to tell us. We don’t get told if someone is being tested, neither do we know what the results are if someone is going through the testing process. So, after thinking about it for a few weeks, we are just going to leave this here. This is the contact details for Miri. She is Andrew’s living donor coordinator. If you thought this might be something you want to know more about she can point you in the right direction for information. She can have a quick initial chat with you to see if you might be a candidate. If you get through that initial stage, you would then begin a series of tests. The booklet “Could I be a living donor” has a lot of information to look at if you are considering phoning or emailing Miri. And if you are considering it, thank you.

Sophie

Andrew and I celebrating our anniversary last month in Brighton, looking slightly older than the wedding pictures.

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