The boy and the starfish

Final blood tests before the operations

This morning Pieter and I had to go to hospital for what we hope were the last blood tests before our operations. They want to do a final cross-match test to make sure everything is still perfect, and I assume a few other tests judging by the 12 tubes of blood they took from each of us! Usually it's only 6-7!

When we arrived we were met by Ray Trevitt, who took us to his office. We had an informal chat with Ray about the upcoming operations, and he gave us some paperwork containing what to do/ expect before, during and after the operations.

We were also asked to give MRSA swabs to make sure we don't carry the disease. One from the nose, another from the back of the throat, and finally as Ray put it: "Any dark crevice between your legs". Say no more.

After our meeting with Ray we had our blood taken. Strangely enough I'm getting used to it, as long as I look the other way that is! But the nurse was so good that I hardly felt a thing. Poor Pieter was a little shaky before he even arrived, as the last dialysis he had was on Friday, so to give so much blood really takes its toll on him. But with Pieter being Pieter, he shook it off and carried on. What an amazing person. It just makes every other problem I have that I think is big seem insignificant.

Ray then took us for a tour through the Ward where we will be staying in a fortnight. It was all new, modern and clean, with wide corridors and large rooms. For the past two weeks I've been very tense and anxious over the operation, largely due to the fear of the unknown. But after seeing this I feel much more at ease. Especially seeing how friendly the staff are and how well patients were treated.

Tired, hungry and a little light headed we decided to have something to eat and drink in the hospital restaurant. Wow! We were both pleasantly surprised at how nice it was! It's so modern, bright and spacious, with a great selection of food and drinks, and such a nice atmosphere. We immediately looked at each other and said Natasja and Lizelle would love this place while waiting during our operations. We had another great chat, contemplating the before and afters, and agreed this is such a blessing and amazing event unfolding.

 

We both need to stay fit and healthy before and after the operations, which means we have to avoid public transport and unnecessary contact with strangers. So the next time we'll see each other will be on Monday 26 November, the day before the operation, when I will check-in, so to speak. Pieter needs to be there on Sunday 25 November as there will be a few more tests to be done on him. So until then we just have to wait patiently and calm the nerves.

A huge thank you

I would like to say a huge thank you to the management of PRP Architects for all their support and understanding over the past few months while I underwent all the compatibility test, and for letting me take the recovery time after the operation as company sick leave, even though it's a voluntary operation. Thanks also to my colleagues for your support and comfort, it means so much to me.

PRP are always supporting charities and those that contribute to them, setting a great example for others.

Organ donation survey reveals shocking results

Below is a very interesting yet shocking article from www.kidneyresearchuk.org;

Kidney Research UK has raised serious concerns about public attitudes towards organ donation, after a survey revealed the majority of people in the UK are prepared to receive an organ but not donate one.

Results from the survey, carried out by Usurv, indicate that while 87 per cent of people in the UK would accept a transplant if told they needed one, only one in three are actually on the organ donor register.

Around 50,000 people in the UK require some form of ongoing treatment for kidney failure, of which aproximately 7,000 are currently waiting for a kidney transplant – accounting for 90 per cent of all patients on the NHS’s transplant waiting list.

With more than three million people in the UK at risk from kidney disease and an aging population expected to further increase demand for donor organs in years to come, Kidney Research UK fears demand for organs will continue to outstrip supply – placing the lives of more and more kidney patients at risk.

Professor Tim Goodship, Chairman of Kidney Research UK, said: “The on-going shortage of organ donors in the UK is a problem which is acutely felt by renal patients.

“In light of the results from this survey, we would ask people to give greater consideration to joining the organ donor register. Your organs are of no use to you when you die but could very well save someone else’s life.

“Imagine yourself in a situation where you’ve been told by doctors you have kidney failure and face the prospect of a lifetime on dialysis or even death unless you receive a transplant. Ask yourself, ‘would I accept an organ?’ If the answer is ‘yes’, we would urge you to think about becoming a donor, as this is the very real scenario endured by thousands of kidney patients in the UK every single day.”

Although more than 18 million people have signed the UK’s organ donor register, only around 2,700 kidney transplants are carried out annually.

Even those kidney patients lucky enough to receive a transplant aren’t cured of their condition, as a transplanted kidney only lasts around 10 to 15 years – meaning patients often require multiple transplants in a lifetime and adding to the demand for organs.

Katherine Hall was just eight years old when she was dignosed with kidney disease. Now 30, Katherine is in need of a third transplant but, due to high levels of antibodies in her blood, has only a seven per cent chance of receiving another organ.

“When my parents were told I had kidney failure it came as a complete surprise,” explained Katherine. “Doctors originally thought I was anaemic and by the time they realised it was actually a renal problem my kidneys had stopped functioning completely.

“Since being diagnosed I’ve had two transplants – one which lasted about ten years and another which failed after just 18 months. The antibodies I’ve been left with make it very difficult for doctors to match me up with another donor.

“If there were more organ donors in the UK I’d have a better chance of getting another kidney, and I’d urge anyone who isn’t already on the organ donor register to sign up. It means so, so much to people like me.”

A third question on the survey focused on people’s views around introducing a system of presumed consent for organ donation, where individuals would have to opt-out of becoming organ donors, rather than signing the register.

When asked whether they would support the introduction of an opt-out approach to organ donation in England, more than half of those polled (54 per cent) said yes, while only 18 per cent said no and 27 per cent were not sure.

“The introduction of an opt-out approach to organ donation is a move that would be welcomed by Kidney Research UK and something we have long campaigned for,” added Professor Goodship.

“We also need to improve the infrastructure in our hospitals to better accommodate organ donors and increase funding for research aimed at making kidney transplants work better for longer.

“Finally, it’s imperative that people who are registered donors under the current system discuss their wishes with their loved ones, as the family will always have the final say on whether an individual’s organs are taken after death.”

HTA Meeting

Shortly after our meeting with the surgeon, we had our meeting with Dr. Matthew Buckland, the Independant Consultant for the Human Tissue Authority (HTA).

I was seen first, then Pieter, then both of us together. The point of the interview was to ensure I knew exactly what I was signing up for, what the risks and procedures are of being a living donor and that I wasn't coerced or reimbursed. I also had to provide my passport as proof if identity. The meeting was very long but thorough, and I'm glad that these checks are in place to keep the process legitimate.

While Pieter had his interview I typed the previous post and let my family know about the good news. I was too excited to wait!

After about 40 minutes Matthew returned for me. He told us he was happy with our stories and motivation, but because I offered the donation to Pieter at the very start of our friendship, and the bond grew strong because of it, the donation will be classed as Altruistic instead of friendship. Altruistic kidney donations means to donate to a stranger or to the hospital who then give it to someone on the donors list.

I don't think this will be an issue, the only difference is that the final decision will be made by a panel of independant consultants, instead of just one. We are confident this will be agreed within a week or two.

Pieter also had some blood taken to test the level of immune suppressant in his system. This level will determine exactly how long before the operation can take place, and will be discussed in a meeting on Monday 1 Oct. 2012 by the Renal team.

Apart from the longer than expected wait, we're extremely happy and relieved to have been given the all-clear by the surgeon.

It's an anatomical match!!

I'm still reeling from the wonderful news as I sit here in the hospital reception room!

We just had our meeting with the consulting surgeon Dr. Roberto Cacciola about our tests. He was very happy with them and told us Pieter is extremely fortunate to have a non-related living donor with such a good match. He discussed everything with is in fine detail, down to the actual procedure and incisions.

Long story short, Dr. Roberto showed me die CT scans of my kidneys and was very pleased. He told us that they prefer to remove the left kidney because it has a longer artery and is easier to access. It wonderfully turns out that my left kidney is slightly smaller than the right one by 1.3cm. They will always remove the smaller or weaker one leaving the best one for the donor. My left kidney is connected to my main artery by only one artery, exactly the same as Pieters! Where the one on the right has two.

This means an easy an smooth operation because there are only these two arteries to connect. It's common to have up to 6 arteries, and connecting those to an odd number is very complicated.

So all my tests have been concluded and the surgeon is happy to do the operation!!!



There is one bit of bad news though; he noticed that Pieter is still on anti-rejection medication for his non-functioning kidney, even though his doctor should have told him to stop it once I started my tests. The medication prevents Pieter's body from producing new cells, which means that the new kidney won't be able to attach to his body. He is very upset about it because we were preliminarily scheduled to have the operation at the end of October, and now we have to wait another 3 months. I feel his anguish, but at least we know it will definitely go ahead!

Nephrologist meeting and CT scan

Today both couples had a meeting with the Nephrologist, Ravi Rajakariar to discuss all the test result to date. Our appointment was for 1pm, but we had to wait about an hour to be seen. But at least we had good company!

In that time Sister Lilly came over to introduce herself to me. We had spoken on the phone may times but never met in person. She wanted to know how we were and how all the tests were going. We told her that we thought things could be done a little faster, and asked if the meeting with the surgeon to discuss the CT scan and the meeting with Human Tissue Authority (HTA) could be scheduled for the following week before I go on holiday for two weeks. She was extremely understanding and went off to make arrangements. She came back in a short while, and confirmed that the meeting with the surgeon will be on Friday 28 September 2012 at 11:30am. She said she would  try to arrange the meeting with the HTA for the same day, which would conclude all the tests, meetings and consultations. We will then be booked in for the operation!

Natasja and I were seen first by Dr. Ravi to discuss my results to date. The meeting was very informal, and over in about ten minutes. Dr. Ravi told us what we already knew, that all the tests results were good. It's the best possible news we could have hoped for! What are the odds that two strangers match so well? Then there was a quick routine checkup and medical questionnaire just to tick a few boxes, and we were done! It was a bit of an anti-climax as we thought it was going to be a in-depth meeting to discuss every aspect of the transplant, but excellent news nevertheless. We already know all there is to know about kidney donation due to all the research I did before deciding to donate a kidney to Pieter.

While Pieter and Lizelle went for their meeting, Natasja and I made our way down to the 1st floor Imaging Department for my CT scan. It was so comforting to have Natasja with me and for her to see the hospital as well.

 

  

 The purpose of the CT Scan is to get a detailed look at the size, shape and health of my kidneys, as well as how they are connected to the arteries and veins. The less arteries that connect to the kidney, the easier the transplant will be. We know that Pieter has one large artery connecting his kidney, so the best scenario will be if mine is exactly the same. This is what we are hoping for.

After checking in at reception and waiting some time, I was called in by a very friendly technician named Neil. Neil took me down the corridor to the preparation room. It was quite daunting because I didn't really know what to expect, but Neil explained the procedure that was to follow which put my mind at ease. He asked me some questions about my health and allergies, and I had to sign a form to confirm everything we discussed. Neil then started prepping me by inserted a canular into my arm into which the dye would be pumped later. He told me that it was quite a long needle so he needed a good vein. It was at that point that I decided not to look at it while he inserted it!

Once inserted, Neil directed me to the waiting area, where I had to drink 3 glasses of water to help circulate the dye through my system. I waited a good 15 minutes before I was called in as there was someone being scanned. I was greeted by a very friendly nurse who asked me to confirm my name and date of birth. I had to remove all metal objects, and lie down on the bed. I also had to pull down my trousers to my knees, with my privates covered by the nurse with a towel. Shame on you nurse for sneaking a peek and thinking I didn't notice!

 

Above is a generic photo of a CT scanner, I didn't get to take a photo. I had to lie on the table with my arms raised above my head, hold my breath, and the scanner passed over my abdomen to take the first scan. Then the nurse came to attach the tube to my arm which was used to inject the dye. I was asked if I was allergic to Iodine, but I didn't know. So I was told to wave my arm if I felt any pain or discomfort as it went into my bloodstream. Fortunately it was fine, and all I felt was a warm sensation as it passed through my body. She disappeared into the control room again, and I was told to hold my breath while the scanner passed over me. This happened 3 times. I had to lie there for 5 minutes while they analysed the images, after which they decided to do one more for good measure. The nurse then told me we were done, and I could pull up my trousers. This time I made sure there was no room for peeking! She removed the canular from my arm, stuck a plaster on the hole, and I was released.

Natasja was relieved to see me as she was told it took 10 minutes, and I was gone for 45 minutes. They obviously didn't take all the preparation into account. We went up to the second floor imaging department to meet up with Pieter and Lizelle, and Pieter finished with his X-rays as we arrived. 

Ravenous from not eating all afternoon we went to the Spur restaurant at the O2 Arena in North Greenwich for dinner. To our delight we were told that there was an "Eat all you can" special on ribs and chicken wings - just what we needed! And what a wonderful way to end another day of test; great food and great conversation. We talked for hours about how far we had come in the past 3 months, and all the wonderful times that lie ahead.