In the Beginning- Deaf As a Dodo!
I was two or three when my family realised that I was struggling to hear and got diagnosed aged four with sensory deafness. It was classified as ‘moderate’ hearing loss in both ears, which meant that I would struggle to hear any normal conversations without use of a hearing aid. Then, as I grew up, I had many ear infections which seriously damaged my left ear and therefore ended up being profoundly deaf in that ear, which I still am to this date. I still struggle on a day to day basis with my deafness, especially in group surroundings and places where there is a lot of background noise.
Chronic Renal Failure
When I was 19, I started feeling poorly. I was getting increasingly breathless, feeling permanently weak, I was unable to walk very far, and my skin was always very itchy, and I had constant calf pain. I even got diagnosed with mild cataracts during this time as my eyes were blurry! No tests were done despite numerous trips to the doctors. I kept being given asthma pumps and was told at one point to ‘stop wasting my time’ by one of the doctors in West Wales.
I was home from university in the Summer of 1999 when I had a massive seizure. I was rushed to hospital and it was a simple blood test there which diagnosed me with renal failure and hypocalcaemia. I was told there and then I would eventually need dialysis and a transplant.
I had a lot of subsequent tests and I was finally diagnosed with HDR syndrome which is an extremely rare genetic condition causing sensory deafness, hypoparathyroidism and renal dysplasia. My mum was tested as well and she has the same genetic abnormality, but she has one working kidney, so this went undiagnosed.
Talking To A Surfboard!
To make matters worse, in the weeks after this diagnosis, I woke up virtually blind one day and this was the damage the lack of calcium had done to my body. The cataracts had become extremely dense overnight and until I had the operation to remove them both I couldn’t see the TV, not even where I was walking in front of me. I was found having a conversation with a surfboard at a party, thinking it was one of my brothers’ friends- that’s how bad my eyes were, although I do laugh about that now! I had to wait 6 weeks to have the first operation and then I had the second operation a few months later. Being able to see again after the first operation was incredible- the difference in my vision was indescribable and it is something I will never forget.
When the kidney failure got worse, I finally went on CAPD dialysis in in 2000. I had to dialyse four times a day at home and it took about 2.5 hours all together every day. It was extremely limiting and I rarely went anywhere. It was a really dark period of my life.
The Arrival of ‘Sidney The Kidney!’
I went back to university in Manchester in September 2000. One week into term I got ‘the call’ at 4am to say that a matching kidney had become available. I had a bad cold (freshers’ flu is a real thing!) and my calcium was too high as they were still trying to balance my medication, so it was a tense wait to see if I was well enough to go ahead with the surgery. By then my mum had driven 5 hours to get to me from West Wales.
I got the go ahead and I had the kidney transplant on October 6th 2000. It took 7-8 hours and was longer than expected as I have such small veins. I was in hospital for three weeks and had 2 episodes of rejection along the way. I found out that my donor was a young girl who was local to where I was (which is very unusual as the donor could come from anywhere in the UK). I also saw the lady in the next bed lose her kidney within days of receiving a transplant which was heart breaking. Not everyone was as lucky as I was. Slowly my kidney started to work and thankfully it’s still working well to this date! (Touch wood)
I went back to university 6 weeks later although I was doing work pretty much from day one as I didn’t want to fall behind. I finished my HND in International Hospitality Management with a distinction and also won a national award and I was a national ‘Student of the Year’ winner. I went on to complete the degree the following year with a high 2:1.
Nearly Twenty Years Of Transplantation!
Over the last 20 years my health hasn’t been perfect. Severe endometriosis (linked to my renal dysplasia) meant that I had to have a hysterectomy at 35 and I had a spell of ill health a couple of years back where the immunosuppressants I take caused an infection which caused issues in my eyes, spinal cord and brain for a 6-8 month period. I am also very susceptible to all sorts of illnesses now due to my supressed immune system, which is why I stay away from people with colds and viruses! I have also suffered with anxiety and stress over the years which I have talked about in another blog.
But, almost 20 years later and I am still standing and my kidney is stable, touch wood. In those 20 years I have got married, travelled to 30 countries, started my own holistic therapy business and am now settled in Barns Green, in West Sussex. I am only taking immunosuppressants and calcium now and no other medication. Even though I get a lot of colds now due to my supressed immune system, it’s a small price to pay form the gift of life!
Lessons Learned Along the Way
It’s OK to have a pity party but resilience is one of the best skills you can develop
When I first got diagnosed with renal failure, I was just turning 20. I was a very different person to the person I am now. I was young, ambitious, selfish in a lot of ways and had my life in front of me. I had a major pity party when I first got diagnosed and had a lot of anger in me as well ‘why me…….’ I kept saying. I actually had a damn good reason to be angry at the unfairness of it all and I do realise now that most people will have these feelings. The most important thing is to develop a sense of resilience and the courage to fight back. Slowly I started to think actually ‘why not me?” These things can happen to anybody!
A Positive mindset is Key- Be aware of your thoughts and switch them if necessary
And whilst I was very anxious about the future (I still am to some extent) I have over the years learned to control my anxiety and I have tried to keep a positive mindset. If I feel negative thoughts creeping in, I will try to acknowledge this and switch the thoughts to more positive ones. I cannot reiterate enough the power of a positive mindset the term ‘thoughts become things’ is so true and you tend to manifest what you think. If you have negative thoughts, you will attract negativity into your life and vice versa.
Gratitude- Focus on what you have rather than what you don’t have
Shifting my mindset to a gratitude-based mindset has been a game changer for me. Rather than focussing on what I don’t have, over the years I have learned to focus on the things I do have. I am truly grateful for everything that I have in my life.
Life really is short and anything could happen along the way- So make the most of it!
The average kidney last 10-15 years, I am approaching my 20 year anniversary. This is brilliant and I am forever grateful. However, I am very aware that I could be back on dialysis tomorrow, but also on the other hand my kidney could last another 30 years! Who knows what the future holds? I’m determined to make as many memories as I can while I can and to enjoy life. At the end of the day nobody knows what the future holds so we might as well enjoy the present moment eh?
The importance of organ donation
Some people were able to have living donors a matching relative or friend, but sadly this wasn’t an option for me. A deceased donor was my only hope for a transplant. A fellow patient was on the waiting list for 24 years as a suitable donor had yet to become available. I was one of the lucky ones. The law is changing soon in March but if you haven’t done so already, please have that conversation with loved ones around organ donation.
More information can be found here; https://www.organdonation.nhs.uk
So that’s my blog for this month, sorry it’s been so self-absorbed, but I really wanted to get my health story out there to show the importance of organ donation and also the power of a positive mindset. I really believe that this life experience has helped me to become a better complementary therapist as well as a stronger person. I do believe that the more you have been through in life, the more empathic and compassionate you become as a result.
I suppose the only other thing I wanted to say is on that on the outside someone may look well, but they may have a health battle of some kind going on so just a reminder to us all that you don’t know what someone is going through, so be kind, always.
See you next month x