This week (3rd-9th September 2018) is Organ Donation Week. The week is set up by the NHS every year and it’s all about raising awareness of the importance of organ donation, but also how important it is for families to talk about their decision to become an organ donor themselves.
Nationally, three people die every day because they need an organ. (more statistics can be found here if you’re interested) . The more people who sign up, the more chance of someone being able to get the help they desperately need. So, with that in mind, I thought I’d try help spread the word, as this cause is one close to my heart, as some of you may or may not know.
In 2007 my amazing Mum had a Kidney Transplant, and so I thought, as we’re in the midst of Organ Donation Week, I’d get my Mum involved to talk more about it, and hopefully get more conversations happening! That’s what this week is all about, so I hope this post gets you thinking and talking more about Organ Donation.
Before getting into Mum’s story, if you haven’t signed up to be an Organ Donor, it’s incredibly easy to do, and in my opinion it’s so so soo worth it. You can register online by clicking here.
I’d have loved to be able to help my Mum when she needed it, but unfortunately me and my sister were too young to be able to help, and also I’m not sure Mum would have wanted to take a kidney from her babies! I know first hand just how important it is not only to the people who are on the waiting lists, but also for their families, how much this can mean to people, so I’d highly recommend you sign up.
It takes less than 5 minutes of your day, and one day you could literally save someones life.
Once again, you can register to become an Organ Donor HERE, but now i’ll let my Mum tell you her story!
I had led a pretty normal, healthy life until I fell ill with a chest infection, which developed into pleurisy and then pneumonia.
I was hospitalised for about 3 weeks, in which time I was told I was gravely ill but that they were doing everything they could to help me and try to make me better. It was during my stay in hospital, one of my daily blood tests came back and my kidney function was highlighted as not doing very well at all. At this stage they said it could have been due to the pneumonia and that things might improve once I was on the mend.
Once out of hospital I was referred to the Renal unit for a routine outpatient appointment to check on the kidneys. My kidneys were getting worse. I was put on a low potassium diet in order to try and prolong the life of my kidneys (potassium is very harmful to the kidneys ) – this was awful. All of my vegetables had to be boiled twice before I could eat them (to remove the potassium), and I couldn’t eat bananas or Marmite (my fave!)
That was a horrible time.
They wanted to find out what was causing the renal failure – so they sent me for a biopsy. A procedure where they basically drill into the kidney to extract the tissue to look at under a microscope. You lie on your tummy for it. I had to remain lying flat on my back afterwards for 12 hours I think? I read a Harry Potter book! (The Harry Potter obsession runs through the family clearly…)
The results were inconclusive.
I grew weaker and weaker and sicker and sicker. I tried to be strong and hide it from most people especially the girls – but eventually I was so poorly that I had to begin dialysis. I was still working part time but I was absolutely shattered and just felt so sick all the time. My kidneys weren’t filtering properly so all the toxins were building up in my blood – I had a horrible metallic taste in my mouth all the time. I was pale, weak and very ill.
There are 2 types of dialysis – haemo (blood) and peritoneal (tube in the tummy through the peritoneal membrane) (you can find a more specific explanation with a google search if you’re interested) I had the tube inserted in my tummy and it used to sit taped up on my tummy outside so that I could dialyse myself 4 times a day at home. I started to feel so much better – I had somewhat of a life back again!
As I was considered relatively young and had 2 young kids they decided I would be an ideal candidate for a transplant and so was put on the waiting list. All my family and friends were tested for compatibility to see if they could donate me one of their kidneys but they were not compatible.
I carried on dialysing at home for about 3 months when on December 26th 2007 my mobile phone went off in the middle of the night to say a possible match had been found and that I needed to get to the hospital straight away.
Once at hospital I had to take a shower with this antiseptic stuff, and I was really nervous. I had never really had a big operation before and was anxious as to whether I would even wake up and see my girls again! I was wheeled down to the operating theatre and then I remember throwing up as I was so nervous at this point, but thankfully the surgical staff were fantastic and soon put me ease.
All I remember is being asked to count backwards from 10 and getting to 9! The next thing I remember is waking up in the recovery ward – all done! Tubes everywhere – I just felt out of it. I could control my own pain relief which was nice though. All the renal staff were absolutely fantastic – they got me through the whole recovery period. Your dad had to go back to work and be at home to look after you both afterwards as well so I was with the nursing staff most of the time. I still see them at hospital now 10 years later!! They still remember my name as well – how funny.
I received my new kidney on December 27th 2007.
All I was ever told about my donor was that he was a motorcyclist (26yrs) and had been involved in an accident up North somewhere. You are not allowed contact with his family but I am forever grateful for his gift of life to me, yet still sad for his family and loved ones.
It took about a week in hospital afterwards while they checked on my new kidney etc – you have to take a lot of meds and it’s sore for a while but they soon have you up and out of bed working with physios so that you can climb stairs and walk around.
I remember being discharged so that I could recover at home which was so nice, as you are always more comfortable in your own home. The first real shower and hair wash were a w e s o m e!! You and Jemma were running around all over the place helping me up the stairs, staying with me in the bathroom while I showered , lifting my feet up so I could rest on the sofa. My little nurses! – yes, even you Lauren.
(For context, and so that everyone doesn’t think I’m a horrible child, i’m not very good when people are sick, or ill around me- I have a fear of throwing up/watching other people vom, but clearly 10 year old me was alright at nursing when I had to be…)
For a while I was not allowed in public places (other than the hospital), wasn’t allowed near children and babies (other than you 2) – just while my immune system settled down.
I had to attend transplant clinics with lots of other recipients many of whom I was in hospital with – twice a week for 6 weeks and then down to once a week and eventually once a month, then twice a month and now I only go every 4 months! Just for blood tests, blood pressure monitoring etc, urine tests and to meet with my consultant.
My medications have been adjusted a few times to keep the balance right but I take 6 pills in the morning and 5 at night – so 11 a day to keep me alive! At first they take some getting used to as they are very powerful anti rejection medications. You do get used to them and taking them soon just becomes a way of life.
I only had 3 months off work and went back as normal. You do have a lowered immune system, so are more prone to picking up viruses etc and you have to have a flu jab once a year, but you get your life back and you don’t feel ill anymore.
I would always urge everyone to discuss their wishes regarding organ donation with their family – it’s not a nice conversation but it is so important – there simply isn’t enough organs out there for people who so desperately need them. Do it now do it today. Register as an organ donor and let your family know you have and that this is what you really want. Organs save lives. They definitely saved mine.
As I was only young at the time when Mum had her transplant, I really didn’t remember much about that time. From my point of view, I remember we (me and my sister) would help Mum set up her Dialysis equipment and we had to meticulously wash our hands, and I remember that if we touched anything, in between washing our hands and helping to set up, we’d have to wash our hands again.
I also remember Mum getting the phone call, it was Boxing Day evening and I just remember Dad waking us up and driving us to our Grandparents house. It was scary, but I don’t think we fully understood at the time what was happening.
It was interesting for me to read Mum’s story when she first sent it to me, as now I’m older, I can really understand the seriousness of it, and I have so much more respect for Mum now. I’m sure my sister, Jemma will say the same when she reads it. As we were both quite young when this was happening, we were aware that Mum was seriously ill, and that her kidneys weren’t very well, but I’m not sure we would have known how scary it would have been for Mum, as well as trying to help look after us two!
It’s not so much that I didn’t think she was incredible before reading, but she’s never really gone into detail with us, and I feel like I never really understood the full story before now.
Mum I think you’re incredibly brave and strong, and I have so much respect for you. I hope your story will encourage everyone to think about registering to become an Organ Donor.
I hope that you guys didn’t mind me doing something a little different on my blog, but this topic is so important to me, and with it being Organ Donation week, it seemed like a good time to chat about it. I hope you liked reading my Mum’s story (please be nice, I only asked her to do this for me today!) I think she did a great job!
Please, if you take anything away from this post, please consider talking to your family about becoming an organ donor. Again, you can sign up to do that here.
Also, if you want to help spread the word on your social media accounts you can use the hashtags:
#YesIDonate #WordsSaveLives and you can look on Twitter @NHSOrganDonor to see more about what’s been going on this week.
I really hope you enjoyed reading as always,
Love, Lauren (+ Jo, my Mum xx)