Paired Donation - Julie and Steven's Story



Julie
 
I was diagnosed with polycystic kidney disease in 2006 aged 24, and in 2009 I was activated on the list to receive a transplant. I was in denial about how awful I was feeling at the time. I was very tired, but some days were better than others.  Dialysis wasn’t my favourite thing, but I felt so lucky to have an option to help make me feel better. I opted to do automated peritoneal dialysis (APD) which involved being hooked up to a machine for over 8 hours a night. Nearly 4 years without a night off sounds worse than it was, it became part of my nightly routine. I was completely thankful for the machine, because it made me feel a bit better, and was essentially keeping me alive, when so many others have conditions that don’t have this option.
I didn’t let the dialysis stop me from getting on with life, and enjoyed holidays and everyday life, it just required a bit more planning. Life on the transplant list continued as normal, it was completely out of my control.  I had been advised I might be hard to match due to high antibody levels, and my sister and husband had both been tested to donate but were unable to. My incredible brother in law Steven was able to donate, but was not a match. We joined the paired scheme, a ‘pool’ of live donor/recipient pairs that are not a match for each other, but are added to this list to see if other pairs can be matched through the system. As I knew I was hard to match, I never expected anything to come of this, but Steven was happy for us to go on the list, and for him to donate to somebody else, so I could receive my kidney.
 
In November 2013 the call finally came. It was an altruistic donor through the paired scheme we were in. I hung up the phone and burst in to tears, my husband worrying what on earth was wrong because I couldn’t speak! I cant explain the emotion, excitement, nerves, thoughts of life free of dialysis, were my first few! We had been given a rough date of mid-December for our surgery date, but things seemed to be moving slowly, and stalling a little. Despite this, I was not at all prepared for the call from the team to say that the transplant chain had fallen through. I was at work, and a close colleague found me minutes after the call, a weeping mess in my office. I told myself I shouldn’t have got my hopes up, I had always been advised these things can fall apart at any minute, but I still wasn’t prepared. The stuffing had been knocked out of me, and the monotony of the nightly dialysis intensified. I had always been very positive about things, but that month I struggled with my upbeat attitude. My whole family were hit by this falling through, I could feel their disappointment and they were so sad for me, and were a huge support to get me through the other side, and back to myself again.
The following February, I was called again, another match had been found. I couldn’t believe it. My reaction to the call this time around was completely different, there were no tears, I was calm. March 2014 came, and it was actually happening. This event involved my whole family, my support network, and Steven was donating his kidney too, a very difficult few days for my sister with her husband and wee sister having surgery in the same day. I felt a mix of feelings knowing someone in my family was having such serious surgery for me. This is something I don’t think I will ever handle very well, but Steven was so calm and focused on it, and never wobbled through the whole process. He is so fit and healthy, and infamously asked the renal team if he could run a marathon in the few days before the surgery was due! 
 
The transplant went ahead as planned, despite what felt like the longest few hours delay of my life. The team were completely amazing, and I felt very spoilt at all times. The first few days after surgery were tough, and sore, but I was so lucky that my new kidney started to work straight away, and I was just so pleased that Steven was doing well. I was in hospital recovering for just over a week, and was back to work after a month (a bit too soon, in retrospect!). The difference is incredible, and without sounding too cheesy, I am like a new women. I have energy, my body doesn’t ache, I wake up properly in the morning, I don’t need to nap, I enjoy things more, everything is better, and my family have the real me back. Nothing compares to the change in energy levels after I recovered from the surgery. I feel alive again, and it means we can start to consider having a family of our own, such an incredible gift for me, and my whole family. I have been given a second shot at living a full and exciting life. All for the generosity of two very very special people. I will be forever thankful.


Steven
I first became aware of kidney disease after meeting my wife in 1999 and being told how her father had a Kidney Transplant many years beforehand. Moving forward to 2008 my wife's sister Julie was diagnosed with hereditary PKD, this came as a big shock and I was fully supportive of my wife Lisa when she put herself forward as a possible donor. Unfortunately after a number of tests Lisa was unable to donate due to a different illness. We then supported Julie’s husband who again had to drop out of donation due to illness. Throughout it all I had also stated that I was happy to be considered and so we started the testing process but were not a match so direct donation was not possible – it was close but just not fully compatible. This led us down the road of the Paired Scheme and that opened a new avenue.
It’s a long process to go through all the tests and giving blood samples and urine samples along with many other tests  that were painless but can be time consuming, having to take days of work to travel to Edinburgh meant that I had to have my boss on side and thankfully work were fully supportive as I had talked to them from the moment I decided to go forward as a possible donor. It was important to me to have family, friends and work onside with my decision, there is an element of risk involved with any surgery but this was a risk I was willing to take. The more I talked to people especially after meeting the surgeons the less risk I felt was involved. For me it was always an easy decision to help a loved one.
Every 3 months we would get a call to say there had been no matches, its difficult balancing life and plans for the future alongside knowing that at any 3 month interval you may get a call that puts everything on hold. As an avid runner it made it a bit tricky at times choosing what races to sign up for but pretty much I went about life as normal. Eventually before Christmas 2013 we got the call to say there had been a match and it was good to go! Excitement and relief were the two main feelings but unfortunately it fell through. That was a crushing blow – not for me but to see the disappointment in everyone around me, I felt deflated but determined to stay in the process.
In January 2014 we got the call to say a paired match had been found and although excited it remained in our minds what had just happened a month beforehand! Certainly tempered the excitement. After a final run of tests and another trip to Edinburgh we had a date for the operation. I had no fear around surgery and talked to the amazing support staff at the hospital so knew exactly what to expect. Everyone is so supportive and very well informed, there was no pressure on me to go ahead and more often the transplant team would try and persuade me the other way by constantly explaining the risks.
The day of the operation dawned and probably the hardest part of all the years of waiting happened when I was all gowned up and the transplant coordinator had to make the final phone call to ensure the operation was going ahead. I will never forget sitting on my own just waiting for the go ahead and wondering if I could cope with everything falling apart now. Thankfully it was Yes and I was wheeled through for surgery, sounds simple and it felt that way as you are sent drifting off.
Waking up after surgery my first question was did it work? At the time they could only say my part had been a success and then I drifted in and out of sleep for a while. To me now looking back it’s all a daze, I know how hard a day it was for my family having me and Julie in major surgery on one day and how they coped is amazing! It was late at night before I knew Julie had her operation and it was also successful. I was kept in Intensive care for a few days and again it’s a blur but the care I received was brilliant. Slowly but surely I was able to get out of bed, walk across the room, walk to the ward door – for a runner getting to the ward door was like crossing the line at a marathon! I think it was on the third day when I could walk through to the ward and see Julie and it was emotional but in such a good way, I asked her just to say “Thank You” and that was enough between us, instantly it was obvious the change in her! Fantastic and made it all worthwhile.
It took a few days to get out of hospital and once home I could eat, sleep and recover. Each day I went out for a walk and slowly got back to fitness, no long term effects and a support network in place for life from the renal team. I have said already that the staff were amazing and its so true and remains that way to this day. The support available is fantastic.
I would recommend it to anyone and have been so fortunate to be able to be part of this. I got back to competitive running and everything else I did beforehand with no ill effects. The important thing however is this is not about me – Julie is living a full and normal life and for that I am so thankful. Yes at times it was difficult for all of us but that was temporary, what we have now is hopefully permanent and life is the real gift.
11/01/2016