After my diagnosis, an appointment to see a Renal Nurse was booked. The 1st November, appointment day, it came around quickly. Back to the hospital, I go to start the next stage of my journey. I met the Renal Nurse for the first time to discuss treatment options. Even though I work in the NHS, this area of treatment was new to me. I had so much to learn, so much to soak up and absorb.

The options, Haemodialysis or Peritoneal Dialysis (APD / CAPD), were the two explained to me, for (if and) when the time comes to choose which was most appropriate. Whilst with the Nurse, I gave blood for more tests. I also learned about an upcoming Transplant Seminar in December. I was again urged to invite family and friends so they could learn about what I'm going through, as well as give them an opportunity to learn and ask questions about what it meant to be a Living Donor. I wasn't made to feel rushed at all, my nurse was more than happy to answer any questioned I had, even questions about Conservative Care - which for those of you who don't know - is choosing not to receive dialysis.

It was a full-on day, I left the hospital with lots of information;

  • Pamphlets about ESRD (end-stage renal disease)
  • Donor Registration Forms
  • The literature on Treatment Options

I was exhausted and overwhelmed but felt a little more educated - still with much to read up on and understand.

The following day my good friend came to visit, as he knew I was feeling low after my appointment with the Renal Nurse a day earlier.

I am SO glad he came because that afternoon I received several unexpected phone calls from the Hospital. Being deaf, it was a blessing, him being there to support me and help me communicate over the phone.
The first call was from my Renal Nurse to give me the results of my blood test, my Kidney function had dramatically dropped even further. Her words were something to the effect of "We needed to move with a sense of urgency on the living donor evaluation, is it possible for anyone to be tested before the Transplant Seminar in December?" The next thing she said was "DON'T BE ALARMED!!!" Are you kidding me?! My health is deteriorating, I remember shaking inside while trying to focus on my friend's untrained lip speaking efforts.

While trying to digest this information, another phone call came through from the Renal Counsellor, this brought a little relief, as I knew I would soon get the opportunity to talk about my concerns and make sense of my diagnosis and somehow work through building acceptance and focus my energies on staying well.

Having a trusted friend with me during this news made all the difference, I'm not sure how I would have handled this situation alone otherwise - probably badly!

A good few hours passed, it was getting late when the phone rang again. This time from the Transplant Coordinator, but before I carry on I want to highlight why Living Donation is so urgent for me and for those in my position;

  1. Transplantation of this kind can be planned as opposed to waiting on the National List for a Cadaver (deceased Kidney) to become available. In reality, the wait on average for BAME (Black, Asian, Minority Ethnic) Kidney patients is 5-8 years!
  2. A Kidney from a healthy person is most likely to work straight away and last longer.
  3. Having a Living Donor would mean the possibility of being able to avoid dialysis altogether - if a suitable match is found.

Of all the calls that day, this was the most difficult conversation. The Coordinator proceeded to request the names, ages and contact details of Donors willing to step forward. I couldn't help but stumble over my words, this was out of blue. I knew I would have to meet/talk to the Coordinator at some point, produce a list of names and details etc. After the exchange with Family previously, I was still struggling to pull together a list, I thought I still had time to work on that - at that moment I wasn't ready!

I indicated my 19-year-old son wanted to be tested. It was the only name I had. She told us, when considering a Living Donor they prefer to look to older participants - why? Because he is still growing, mentally and physically and has so much yet to experience in life that right now they wouldn't consider him as a first choice. Ideally, a Living Donor candidate should be older than 25 years of age, by which time most of their development will have ended. However, in the future, if I ever needed another transplant he would be "worked up" for suitability. I was gutted, he had his heart set on helping me. When I originally told the children of my illness, there was no hesitation, he was there, ready to do whatever was necessary to get his mother through this. I fully understood the rationale behind the Coordinator's words. I told her, he was the only person I had so far, no other family members were forthcoming.

A few moments of silence passed, there wasn't anybody else I could turn to at that moment, there were no other names! To my surprise, my friend said he would like to be considered. I was shocked, I didn't expect him to volunteer to be tested. All of our previous discussions had centred around my family and what they were and weren't saying/doing. My friend spoke 1-2-1 with the Coordinator to understand the details needed at that moment. Details were exchanged, e-mails were sent and the ball has started rolling.

You can drop me a message either via Twitter @Naomi_My_Story or HERE I love reading all of your messages of encouragement.
If you are moved by my story and want to get more involved, please consider doing one of the following two things:

1. Registering to become an Organ Donor here: https://www.organdonation.nhs.uk/ if you do, be sure to let me know!
New registrations give me a boost!

2. If you want to help me directly by being tested to see if you could donate, you will need to be aware of the following:
  • Firstly, I am BLOOD TYPE O-NEGATIVE it's important you know this in advance to be considered for a possible direct donation.
    Failing that, an indirect donation is still a possibility. Please still get in touch using the below...
  • Secondly, please complete THIS FORM and someone will get back to you to move things forward.

AGAIN, THANK YOU!