Monday, August 18, 2008


Well, following the trip to the hospital, things kind of went quiet. I've had a couple of results back and they all seem OK but all I ever hear is "We just want to confirm this." or "We're just waiting to hear back from a doctor."

I have no doubt now that everything is going to go ahead and be fine but without hearing those words I don't want to start planning or arranging anything. It seems like an endless wait every day and all I can think of is when the phone is next going to ring. The worst thing is that I can't do anything to speed things up or change the outcome of what I'm going to hear. I feel completely helpless at the moment and more than ever I want to hear anything.

I'm starting to think of who I'm going to ask for "references" to prove that I actually know Holly and have known her for years. I think I'm kind of worried about what they might say but I'm sure it's just me being paranoid. I received a couple of sample letters from our coordinator and I think it should be fairly easy to prove that we are who we say we are. After all, we don't have anything to hide.

There isn't really a lot to say at the moment. I don't know for certain that anything is actually going to happen so it feels kind of strange making arrangements. I'm sure it'll all come together but I wish it would just happen and the wait would be over.

Friday, August 8, 2008

Visiting the hospital

My next task was to talk to work and explain to my manager what was going on.  I decided to tell them at this point as I needed to go visit the hospital my friend is looked after in and also, if everything goes well, I would need quite a while off work.  Thankfully my manager was great about the whole thing.  I think she symapthised with me as she had a friend in a similar situation in the past.  I was really worried that she wouldn't be as nice as I had only started the job about 3 months before.

I arranged the appointment for 2 weeks from then and there were quite a few emails between me and Alex.  She was keeping me as up to date as possible with what would be going on when I was there.  Usually these tests are done over a week or 2 but because of the distance they were able to arrange them for me over 2 days.  There were also a few things I had to do in preparation before going down there.

When I arrived at the hospital I met up with Alex and we chatted for a while about what was going to happen and she answered a few questions I had thought of.  Following this I was booked in to several tests over a day and a half including an ultrasound scan, an MRI scan, a few blood and urine tests, a GFR test, a chest x-ray, an ECG test, a treadmill test, a second crossmatch test and also I had time to talk to several doctors.  It was a tiring but very interesting couple of days.

Following the results from these test I should know whether or not it is OK to go ahead with the transplant from a medical point of view but I know there are still several hurdles to get over regarding the legal side of everything.

It is quite frustrating having to wait for things to happen as I feel like we are so close but there are still results to wait for that could sway things either way.  I just wish we could click our fingers and move forward a couple of days to find out the results.

Thursday, August 7, 2008

Kidney donation misrepresentation

I was speaking to Alex and my friend the other day about stories they have seen on various TV soaps invloving kidney donation. The worrying thing is that there are lots of people who believe that these stories are true. As far as what actually happens they couldn't be further from the truth.

Here are a few examples of the stories we spoke about:

Eastenders: The Ferreiras had a son who needed a kidney transplant and the whole family were tested and the only one who was compatible was the step brother. They went in to hospital a week later and had the operation. When they came out everyone was fine and that was the last we heard.

Coronation Street: Tracy Barlow needed a kidney transplant and Ken and Deidre were both incompatible. Her stepfather Samir was a match though. On the way to the hospital for the operation he was attacked and killed but they took the kidney with Deidre's consent and the operation was a success.

Holby City: Probably one of the worst stories. A girl needed a kidney and an altruistic donor came in offering his kidney. However, he only wanted the girl to have the kidney and started stalking her and eventually moved in with her. I think he was diagnosed with some psychological illness or something.

All of these stories paint a worrying picture of what actually goes on during the donation process. I'd like to put things straight as much as I can.

Firstly, donating a kidney is not something that can be decided or done in a couple of weeks. There are tests, both physiological and psychological, to go through before anything can be done and many of these are repeated several times. Also, no one is ever pushed into making a donation. The final decision is up to the donor and no one else.

Following surgery there is a lot more than a goodbye. The recipient will be in hospital for at least a week with a fairly long home recovery period also. They will have to take anti rejection medicine for a long time afterwards and go to regular check ups to make sure everything is working OK. For the donor there are a few check ups and then long term follow up every year just to make sure everything is OK.

So far the TV seems to have put a bad spin on kidney donation by making it a high risk decision. There is, of course, a risk involved with the surgery just the same as there is a risk with any surgery. However, looking at statistics of life expectance and chance ot get kidney failure, there is no change between people with one kidney and people with two kidneys. So there are no real concerns to face after the surgery is over.

For the recipient there is always a small chance that the kidney may not work or may be rejected. If this happens then some of the time it can be overcome using drugs but if it fails then they are back where they started and they have lost nothing. If the transplant is a success then their life will change completely. They will no longer be dependant on dialysis, they can drink normally, they will feel a lot better, everything will change for them.

As for altruistic donors, they would never actually know who is getting their kidney. They may not even find out if it was successful or not. The donor and recipient aren't even looked after in the same hospital. The most contact I have heard of between an altruistic donor and recipient is an anonymous letter thanking the donor.

Although the decision to be a donor is probably one of the biggest decisions you will make. The actual procedure and follow up is quite normal. The risks are there but are minimal and the long term effects are negligible. Just like giving blood saves lives, giving a kidney can save a life also. There were 2081 kidney transplants carried out last year. Only 832 were from living donors and there are still over 6500 people waiting for a kidney transplant and this figure is growing each year. If just a few extra people decide to donate altruistically or to someone they know then I am sure that this figure can be reduced significantly.

Wednesday, August 6, 2008

The first steps

After offering to be a donor I had to actually find out how to go about being tested. There is lots of advice for recipients and donors but not a lot about taking the first steps. I spent a while trying to get a blood test to confirm what my blood type was which I found out wasn't necessary. I then spoke to my local hospital's renal department who were very helpful. They told me I needed to get my friend to contact her transplant coordinator to let her know I had offered to be tested. The next thing I knew I had an email from the coordinator (here on in called Alex) asking if I had actually offered or not.

After all the formalities were over I arranged with my local GP to have some blood samples taken in some vials sent to me by Alex. They were taken and sent back down to the hospital to be tested and cross matched with my friend's blood. The samples were taken and sent down on a Monday, on Wednesday I had a phone call from Alex telling me that the cross match was negative (this is a good thing). I can't really explain what went through my head at this point. All I can say is that it feels very strange to experience two conflicting and extreme opposite emotions at the same time. It was a combination of fear and apprehension and excitement and elation.

It's very strange indeed.

Deciding to say something

Since coming home that day I found out it seemed that everything was there to remind me about my thought of offering to be tested. Every time I saw a "Give Blood" advert on TV I would think about her and about offering to be tested.

I texted her a few times to ask how she was doing and even said to her "I'd give you my kidney if I could" to which she replied "Ah, that's kind of you, thanks" (I learnt later that this was a generic reply to all her friends who had said the same thing). Then I found out that she had been called up for a kidney and was in the hospital waiting to be called in to surgery when she was told that the kidney wasn't good enough to be used and she would have to go back on to the waiting list.

It was at this point (about 6 months after I first found out) that I texted her to ask her what the first steps would be for being tested as a donor. I don't think she realised how serious I was until I rang her to talk about it.

It took me a lot of thinking to actually take that first step. In the end I think it was time building up the courage to offer to go through some unknown experience that may have some unkown risks. I had read many websites and read forums galore and realised that in actuality the risk to a donor is a lot smaller than one might expect.

Finding out

I found out my friend had kidney failure last October. We were having a very nice Thai curry in London when she mentioned that she had to go to dialysis that night. I had to stop her mid sentence to check I heard her correctly. "Dialysis?". She then told me that she had kidney failure and had been waiting for a kidney for 4 years.

I was slightly shocked as she looks like she is completely fine and I never suspected that she was ill at all.

She also told me how her whole family had been tested as donors but they were all the wrong blood group and couldn't be a donor for her. My first thought was to drag her in to the hospital and get tested as a donor but I didn't say anything at the time. I have jumped straight into things in the past without really thinking properly about them and this kind of thing isn't something to be taken lightly.

I said my goodbyes and came home to Leeds but couldn't get the thought of offering to be tested out of my head. In fact, I almost knew that I would be a match and this was before I knew we were the same blood group.

Quest for a Kidney

Firstly, the inspiration for this blog has come from a friend of mine who has been on this quest for four and a half years! You can read her blog here.

Reading it will give you half an idea as to what people go through when put on the waiting list for a kidney.

I've created this blog to give people an idea of what it's like on the other side.